In February 2006 I had an emergency bowel resection. For no apparent reason, a large portion of my small intestine had twisted and the blood supply to my intestine had been cut off and died. About 40% of my small intestine (ileum and ileocecal valve) had to be removed. For the next 2-3 months I had horrible diarrhea after everything I ate. Within one week I went from 135 lbs. to 115 lbs. I followed a very low-fiber, low-fat, bland diet. My surgeon told me that I would suffer from diarrhea for the rest of my life and would have to control it with medication. My doctor told me that things would get better in time, it just takes awhile for the remaining intestine to adapt. It took about 6 months for me to maintain a weight of 120 lbs. (I am 5' 4").
It's been almost 2 years now and I have problems every day with digestion. I have diarrhea every morning that lasts sometimes until about noon (some days are worse than others), and the rest of the day I have digestive pain, cramps, sometimes bloating and gas from whatever I eat. I have tried cutting out certain foods but there doesnt seem to be any rhyme or reason to what causes my discomfort. I know I am now lactose intolerant and cannot break down fats because of my ileum being removed but sometimes even just a piece of toast will not sit well. I've recently started taking digestive enzymes to help break down fat, carbs, proteins, milk sugar, and fiber. The suggested use is 1 capsule before each meal but I take 2 with regular meals and 1 with snacks. The enzymes have helped considerably with the digestive discomfort (bloating and gas) but I still have diarrhea which I dont expect to every go away.
I've spent the last 2 years trying to find information on life after a bowel resection but I havent had any luck. I went to see a nutrionist through my medical provider but ended up teaching her a few things about malabsorption. I get monthly B-12 injections, take a multi-vitam, calcium, magnesium, and probiotics daily, and drink about a gallon of water everyday. I've had to go to the emergency room a few times for intravenous fluid due to dehydration.
I'm a stay-at-home mom of a very handsome 1 year old so I am always near the bathroom but on the days I am away from home I usually dont eat for fear that my tummy will act up. Food is no longer a joy, it is a complete hassle. Anyone out there with the same kind of problem? I would love to get some advice on how to cope and what things that have helped you to suffer less.
Oh my gosh, I've spent months trying to find someone with the same issues as myself. I had emergency bowel resection in Nov 2007 and my life has been miserable since. I am in the bathroom 10 to 20 times a day and today it has been at least 30. My doctor also told me it would take time because the ileum, (which is a crucial section), was removed.
This is the result of the radiation treatments I had 23 years ago for cervical cancer. The treatments have caused so much scar tisue that I had been having bowel obstructions more frequently.
This sucks because you give up being invited to someone's house for fear of having to go to the bathroom. And shopping, well you really have to know where the bathroom is or you may be in trouble.
I want my life back.
It sounds like from what you are saying, this is going to take longer than what I was told. Oh gosh, someone give us some advice!!
Hi. I am 3 months post op from an elective colon resection. They removed about 7 inches of my sigmoid due to multiple episodes of diverticulitis that would not respond to the antibiotics. Since then, my bowel movements have resumed what I guess is "normal". I go about 3 or 4 times a day, usually in the morning, which is when I would go before the surgery. As mine was elective ( did not rupture or stricture) it may be different for me. But I can tell you that sometimes, at work, I get the urge and go as quickly as I can...lol. I am a teacher but my students are aware of my surgery, etc. I have gotten some great advice on this site from others who have gone through this and similar surgeries. What I am being told is that the colon does not like to be "messed with" and can take awhile to get back to normal. I also know my surgeon told me "3-6 months and even up to a year" before I "forget I had the surgery". Hope this helps.
So many people out there with so many stories. I would have never known had I not found this site. My initial post probably sounded like a a state of panic. I had a very rough night. But most days are like that and I am trying to find the pattern. My gastroenterologist has me on a powder called Cholestyramine that you mix with water or juice two times a day. If this is suppose to help, I hate to think of what life would be without it. I just saw her last week and she tells me that there is nothing else and I should continue to take this every day. She stated again that it is just going to take time for my system to heal. I lost over 20 pounds and have not been back to work since early November. I know the foods to stay away from but does anyone know of foods that help this?
First of all, I'm so sorry to hear that you are going through this horrible ordeal but at the same time it's so nice to finally be in touch with someone who can relate to my situation. I remember what you are going through right now...going to the bathroom so much and crying when I felt it coming because my behind was so sore from the acidity of the diarrhea (because the bile acid in your system isnt being absorbed). A couple of things that helped me get through this phase is lots of baby diaper rash cream and Tucks pads (just tuck one between your cheeks for a little while and frequently...lol). I took 4 months off from work to get through this part of the recovery and to regain my strength and even then was only able to go back to work 4 hours a day. Although the diarrhea has not gone away for me (and never will apparently) it has become manageable. I usually only need the bathroom the first part of the day and if I'm out and about and feel the urge coming, Ive been able to make it to a bathroom.
My recovery has been in phases. Acidic diarrhea the first few months, then "normal" diarrhea with horrible gas and bloating (we're talking open all the windows, spray some lysol, and light some candles gas...just awful!), and now "normal" diarrhea with less lethal gas and bloating.
The diarhhea I can handle, its the gas and bloating that are my main complaint. I went to see another gastro specialist recently who was very knowledgeable and helpful. She suggested that I cut out all complex-carbohydrates from my diet because they are difficult for the intestines to break down. The intestines produces enzymes that break down complex-carbs into simple-carbs in order to be absorbed. Since I only have half of my intestines, it made sense that I just don't have enough enzymes to do the job (and taking enzyme supplements with my meals wasn't working well enough). So the food is just sitting in there, undigested, fermenting and causing me a lot of discomfort (and embarrassment). Since I've cut out complex-carbs (dairy, bread, rice, starches, etc.) I've had no gas or bloating and feel like I finally have control over my body again.
Another complaint I have is being so tired every day. She said that I need to replenish the electrolytes in my body by drinking a couple servings of pedia-lyte everday in addition to lots of water. Pedia-lyte is too sugary sweet for me so I drink Smartwater instead (most grocery stores carry this). Also, she said to exercise everyday...a 30 minute walk is good enough and get plenty of rest (both obvious suggestions).
If you are interested in the simple-carbohydrate diet, here is a book that will give you more information about it (just copy and paste the links):
I am soooo happy to have found you. You have given me so much hope and information. And like you, I find it comforting to have someone to relate to. You are so young to have had this done, but I guess it affects all ages for many different reasons. I am 52 years old 5'6" and 133 lbs. and as I said, went through years of bowel obstructions until my doctor said enough is enough.
My mother has had three resections done (also due to bowel obstructions caused from radiation treatments). She has suffered the opposite after her surgeries, constipation. I would take that in a heartbeat. Her and I spend a lot of time together and wish we could combine our troubles. That way we pretty much would have a normal bathroom life.
I laughed when I read the phases you went through because I am in the second phase. It started about a week ago and thank goodness the temperature is almost high enough to be able to open the windows again. I have a very understanding husband who says "just let it rip". And the reast of my family down to the five grandchildren I have are all very understanding. Friends are also considerate and understanding but I do not feel as comfortable about it with them so we do not go over to their houses or go out to eat like we once did.
I am honest when I state I am in the bathroom at least 20 times a day. The diarrhea is pretty much an all day occurence with anywhere from a half hour to a few hours in between. Some nights after supper, I am in the bathroom five to ten times. I am so afraid to go back to work, but know it has to happen soon.
I will check out the books you recommended since all I have is time right now.
Thank you again for all your information. I will keep you updated as the days go by.
One thing that I forgot to tell you before was that the gastro specialist said it can take 2-5 years to get back to "normal". She said for the amount that I had taken out (40%), I'm looking at closer to the 5 years...I'm not sure how much you had removed but if it was quite a bit it will probably take you some time as well.
It really helps to have an understanding family. My husband proposed to me on February 14, 2006 and I went to the ER on February 21. We were already living together so you can imagine how much pride I had to swallow when the "stink bombs" arrived. It was so bad sometimes that he had to sleep in the guest room. So embarrassing, especially for a girl. He must really love me though because he still married me, lol. I pretty much spent the first few months at home and occasionally chanced a trip to the grocery store in order to get out of the house. It took awhile, but the diarrhea did get better and less frequent. Just hang in there. I broke down in tears so many times and felt like my life as I once knew it was over and couldnt imagine how I would cope. But now, two years later, it is manageable. Every day is a challenge when it comes to food and the whole digestive thing but it is getting better.
Before I changed my diet, I had a very difficult time with going out for the day and going out to eat. No matter what I ate, a few minutes later I would feel the gas coming and need to be aware of the nearest bathroom. I still need to know where the bathrooms are but by cutting out the complex-carbs, I don't have to worry about the gas. I highly suggest just giving it a try if you are suffering from that like I am. A typical day for me now is scrambled eggs for breakfast, leftover dinner for lunch, grilled meat and a vegetable for dinner (make enough for lunch the next day). I snack on fruit, nuts, and cheese throughout the day. I've made a couple of the bread recipes in the cookbooks that use nut flour and they are nice to have around as a snack also but in no way replace the real thing! I still eat the bad stuff every now and then (my husband treated me to Cold Stone last night) but at least now I know how it will affect me and I can be prepared for it. This too is just a phase of the recovery, but I think it will be awhile before I can eat like a normal healthy person and not suffer for it.
I better get back to my laundry before my son wakes from his nap. You can email me anytime at ***@****.
Thanks again for all the information. I did not have as much as you had taken out, but my doctor told me that the portion taken out that included the ileum is the section causing all the problems. From reading other posts, it does not appear anyone has been put on the powder Cholestyramine, which makes me wonder if I need to just stop taking it and use a more natural approach.
You ended your last post giving me your e-mail address but it did not come through. I wonder if the site blocks it out. Here is mine---***@****.
Let me know if it came through. My husband and I are going shopping now, so I will talk with you later. We'll see how this shopping trip turns out. haha.
Wow... I cannot believe that it has taken me seven years to find this community. In 2000, at the age of 17, I was in a car accident. I had emergency surgery and later found out that the doctors accidentally knicked my small intestines and I was leaking waste inside my body. About 60% of my small intestines was destroyed and I had to have a ileostomy. I have a reconstruction about 5 months later. Anyway, seven years later, I am still suffering from having to use the restroom at least 12 -15 times a day, I have gas that you wouldn't believe (or maybe you would), and it is affecting my social life. I am nervous to go anywhere after I have eaten. I don't like to stay overnight at anyone's house. My family is really supportive, but I just recently went through a devastating experience. My roommate of 2 years told me this weekend that she could not live with me anymore because of my "bathroom problem." Apparently, my problem is so "disgusting" that she is embarassed of me. Needless to say, I was very hurt because I have been struggling with this problem for years. I know that dairy affects me badly and I try to stay with food I know bother me less, but it seems like sometimes it doesn't matter what I eat, I still have uncontrollable gas and the "poops." Do you guys know of any natural supplements that I could take that could help? Someone mentioned charcoal, but I don't know much about it. I want to do as much as a I can for myself and for those around me.
You also are so young to have gone through this. It's too bad about your roommate, but I have found that people react to our situations in many different ways. I wish I could help you with your question on natural supplements, but I can tell you in just the past week, I have regained some sort of a sane lifestyle. After waking up in the morning, I have to use the bathroom about five times. As I have mentioned, I am on Cholestyramine. On my own, I have changed it to once a day, in the AM. I do not eat breakfast or lunch, just some crackers now and then. I am able to have a peaceful day with maybe using the bathroom once. Before dinner, I have a few glasses of red wine, which I have discovered relieves diarrhea. After dinner, I use the bathroom, but far less than what I was having to do.
Yes I know it is not good to not eat all day, but I have to do what is best for me and that is not spend all my day in the bathroom. Hopefully in time, things will improve, but this is the best alternative for now.
I have found that this surgery affects people in so many ways. So many people out there that never say a word are passing you by on the streets, in the grocery store, at your work place and we never know. How sad!
I'm so sorry to hear about everything you are going through. I posted earlier about my surgery and my experiences so far so I dont want to bore you again with that (lol) but I do know how embarassing all of the digestive issues can be. I had about 40% of my small intestines removed and suffered for about 2 years from horrible bloating and gas that could clear out a room. The thing that has worked for me is to not eat complex carbohydrates. My in-laws are visiting from Scotland right now and we just returned from a 5 day trip to Bodega Bay where we all stayed in the same vacation house. I was so worried about them staying in our house and especially going on that trip together because I knew I would have to starve myself and even then go off and hide somewhere when the gas came about. However, about a week before they arrived, I completely cut-out complex carbs and suffer from very little gas if any at all. I still have diarrhea but that I can handle. I highly suggest giving this a try. Complex carbohydrates can be difficult for a normal person to digest so you can imagine how difficult it is for someone who is missing half of their intestines. We just dont have enough enzymes to break down the complex carbs into simple carbs so the food just sits in there and ferments and then we bloat up and all that disgusting gas has to come out. If you decide to give it a try, take a look at my earlier post for some more information or drop me a line at mylobster at gmail ******* (you too Kim :-)
FYI - since the site blocks out our e-mail address, I put it in my profile name. If you would like to e-mail me, click on kimwilly and you can find my e-mail address. Then I will have each of yours upon hearing from you.
I had emergency bowel resection surgery in January of 2008. I had two pieces of my intestines removed, one a partially twisted large intestine (volvulous), which the doc said was hereditary and the other was an abcessed diverticulum pocket on my small intestine, which the doc said was unusual. I came through surgery and recovered well, so I thought.... But ever since then have struggled with loose stools, gas, bloating, and weight gain. At first I lost 15 pounds a couple of weeks after surgery, but now, even though I "go" 5 to 7 times a day, I have been gaining weight. I have recently been taking magnesium calcite for the gas - which has helped immensely - I was becoming socially unacceptable in a room full of people!
In reading your testimonies - I know now that I have a long way to fully recover - or maybe I will just have to live with the way I am now. I am 54 years old and have had great health my whole life - until now. I am tired a lot - used to exercise all the time and run 25 miles a week - but now I can hardly make myself walk with my dog each morning.
Are any of you experiencing weight gain? Maybe it's just "that time of life" for me!
I am finding that this surgery affects people in so many ways. Not sure the reasoning for this. ( Is it the different sections removed or our past lifestyles?) Your weight gain may be due to the fact that you are not walking and running as much. I know, you will find the strength to return to that routine in time.
Just since my last post, I have improved considerably. And to think, I was ready to give up. Yes, I have lost more weight, but I am in the bathroom far less. I feel so much better about going out and being with friends, shopping, etc.
I still am in the bathroom about ten times a day, but I can live with that. I have more energy and my hands no longer shake. I hope that in time you will improve. My surgery was in November so hopefully that will be soon for you, but then again this surgery is unpredictable as to when recovery comes to a end.
Keep in touch.
Im very sorry that you are going through this...its definitely life altering and very frustrating. My surgery was in February 06 and I still struggle just about everyday. Ive been trying to cut out complex carbohydrates as much as possible to relieve the bloating and gas but (like yesterday) I'm left feeling very hungry and weak. I still struggle with feeling very tired most days but I am also chasing after my 14 month old son.
My doctor gave me some suggestions for the fatigue...even though I drink a lot of water during the day she said that Im not replenishing the electrolytes in my body because of how much I go to the bathroom so she said to drink a couple servings of pedialyte everyday (I drink Smartwater instead because the pedialyte is too sugary sweet for me). Also, she said to take a daily B-complex supplement, and in my case I have to take an iron supplement daily as well because I tend to run a little anemic. I also get monthly B-12 injections. The ileum (which is what I had removed) absorbs B-12 (amongst other things) so the injections really help with my energy level.
I have heard that some people gain weight after this type of surgery, which doesnt make much sense because of how much you are going to the bathroom. Have you talked to your doctor about this?
Thanks for the encouragement. I will talk to my doctor about the weight gain. I have always gained weight easily - but I figured that after surgery it might be easier for me to lose weight. Ha! I haven't seen a doctor since about 2 weeks after surgery. I had no idea that I would be having problems this long afterward. I figured a couple of months and I would be back as good as new.
I am a strong person and hardly ever get sick. I live in the country and work hard outside, i.e., getting fire wood and working in the yard. I am back at work full time but usually run to the bathroom 3 or 4 times in the morning and 2 times in the afternoon. When the urge strikes - it strikes - there better be a bathroom available! Part of my job is picking up water samples from customers' homes... I have to make sure I know where a bathroom is when I go now - like at a store or gas station on my way there. I will also try pedialyte.
Thanks again - I will stay in touch - I am glad to know others are going through the same stuff and it's not just me.
Hi. Thanks for all of your posts. It is so glad to hear that others have the same issues. I have a question. I had an elective colon resection, 7 inches removed, on January 24th 2008. I am doing better but still having some pain. I remember surgeon saying it can take 3-6 months to "forget you had the surgery". I go back to my GI for my first follow up, on the 19th of May. I am going to discuss with him as surgeon mentioned possibly doing a CT, in July, if I was still having pain. The pain is not horrible but still enough that I am still taking 1 to 1 and a half Vicodin a day. I have a very low pain tolerance so others may not feel the need for the meds, but I feel I still need them as I am a teacher and it is hard working when in pain. Please let me know about your pain levels. I really appreciate all of the good feedback that I get from this site...
Sue 357 - I am so sorry that you experience pain after the surgery... The only pain I experience is gas pains now and then. However, if I eat certain things I bloat up and my intestines gurgle a lot. When I am bloated none of my pants fit - except the hig huggers - then my belly mushrooms over the top. I used to have a flat stomach - this is the first time in my life that I have had to suck it in - so to speak. I pray my pain doesn't come back like I had before surgery! I really don't want to go through that again! One day at a time ... that's the way to handle this...
Hi. Thanks beach for the words of encouragement. Aross, I have a question as I am going back to my GI for my first follow up. When your doc said that it can take 2 to 5 years to recover, did he/she specify what that meant? Were they talking pain, ect.,? I am curious as I am writing down questions for my appointment and my surgeon said 3-6 months ( I am almost 4 months) Do any of you find that eating certain food causes pain? Also, how long were you on the pain meds? Thanks.
Im very sorry to hear about everything you are going through. I felt completely alone in all of this until I posted here and all of you started replying. I wish that none of us were going through this but it makes it a little easier to know we are not alone.
My doctor told me that in my case it would take closer to 5 years for a somewhat full recovery (I will still have diarrhea but hopefully not as much) because I had 40% of my small intestine removed (the ileum and valve). That's a pretty big chunk, and the ileum is responsible for absorbing some important nutrients. It takes longer for the jejunum to adapt and absorb everything that the ileum does, than it does for the ileum to adapt and absorb what the jejunum does (if someone were to have the jejunum removed instead). So I'm on the worse side of the scenario as far as the part I had removed and how much.
As far as pain, I do have occasional intestine pain. Sometimes it doubles me over as I'm trying to run to the bathroom and other times its just kind of a dull pain. About 2 months after my surgery I had the same exact pain that sent me to the ER the day I had surgery. It wasnt as intense but I was afraid it was going to get worse and thought that I was going to have more of my intestines removed. It turned out to be nothing and eased up the same day. It was very scary after what I had been through. I wonder if some of the pain is from stool passing through the part of my intestine where they made the cut and maybe some scar tissue has developed? I'm definitely interested to know what your doctor says about it.
Food that cause me discomfort (bloating and gas mostly) are fatty foods and complex carbohydrates (dairy, bread, rice, starchy veg, etc.). But I havent come across any foods that cause me pain.
Best of luck at your appointment and be sure to let us know how it goes.
Like beach211893, I really do not have any pain unless I bloat up. I have noticed that if I eat foods that gave me problems before the surgery such as corn, potato skins, pickles, peas (anything with skins on them), I have pain as I did before the surgery. These foods gave me bowel obstructions, which I never want to experience again. So in my case, as long as I have diarrhea, I know foods are passing through.
I wish I could help you with the pain. You need to get off of the vicodin. Please keep in touch and let us know what you find out.
Thanks for all of your encouragement. I will let you know what the GI doc says after my appointment. I too, am so glad that I found this site. I have a question ( another one lol). Has anyone found that stress plays a part in the pain? I am starting to notice that my pain level is so much higher during the week, when I am working . I am a GED teacher for at risk youth, age 16-21. While I absolutely love my job and what I am doing in these kids' lives, I am noticing a decrease in pain on the weekends..... I also have GERD and take Prevacid but someone told me that the stomach acid can also cause intestinal issues. Unfortunately, quitting my job or taking time off is not an issue right now, but I will be taking a few days off in June as my first grand child ( a girl....Yeah) is due on the 12th. My students are taking off the last 2 weeks of June. Thanks again.
Stress encourages it but is not the cause. Does that make sense? I had the opportunity to be off from work from November until the day after Memorial Day, which is coming up. So, at least I had the chance to somewhat recover from the surgery.
Congratulations on your 1st grandchild. I have five under the age of five.
So I hope you find the source of the pain. What a shame that you are dealing with this at this very important time in your life.
I am so thankful to read each of your stories--thanks so much for sharing them with everybody. I want to share my story with you--I know it is different but I guess they all are.
July 16, 2007 I had 85% of my large colon removed. I was diagnosed with colonic inertia, which simply meant that it wasn't working. I was tired of trying to plan my life, my job, etc around my bowel movements. My doctor told me that I would experience frequent hospitalizations and obstructions if I didn't take care of the problem. It was a laproscopic procedure. It was on a Monday. By Wednesday my heartrate was 191 and I was in an ambulance being transported to a different hospital, for their ICU care. By Saturday I knew that I was dying. I told my mother goodbye 4 times, and I was very calm and serious. I had developed a very bad rash all over my stomach and right side. The nurses were watching it spread. By Saturday afternoon my heart began doing something strange and the nurses called the doctors. Shortly afterwards I lost all bodily functions. Within a couple of hours I was in surgery again, this time because they thought I had gangrene and they were going in to begin removing my flesh. The surgeon made a 6 inch incision on my right ribcage-nothing. He then made a 6 inch incision on my right hip-nothing. Another 6 inch incision was made horizontally on the right side of my stomach. Nothing. As they were about to lose me the surgeon made one final cut-vertically from above my belly button all the way down, and it was there that he found the problem. The first surgeon had made a mistake, and punctured a hole in my rectum. He then repaired the hole and gave me an ileostomy. I ended up septic, on life support for a week, ICU for 33 days, with a total hospital stay of 55 days. The drug that saved my life was Zigris, a $10,000 a day drug that they gave me for 96 hours. It protected my vital organs from the infection. I had to qualify for it--I had to be sick enough to need it and hopefully strong enough to pull through. During my hospital stay I had the MRSA staph infection in my big incision, a wound vac on 3 of the incisions, pneumonia and they removed 40 ounces of fluid from my right lung. My last surgery was December 18, 2007 and during that surgery they fixed a hernia that was caused from all of the cuts and reversed the ileostomy. I am getting stronger every day. Some days are better than others. I still have pain--I think from the scar tissue. I have bladder spasms when I empty my bladder, mainly first thing in the morning. I have been diagnosed with Reiters Syndrome, a type of reactive arthritis that was caused by the infection. I typically have 3 to 4 bowel movements a day-some are firm and some are lopse. I am able to eat most foods and am so thankful to be alive. I am so glad to have found this site-and thank you all for your comments.
Thanks Green eyes for sharing your story. Wow, you certainly went through a lot and are lucky to be alive! My hubby recently lost a friend to sepsis from an intestinal rupture ( no warning, just sudden sharp pain). Some of your story sounds like his but his did not have a happy ending. His organ were all infected and eventually started to shut down. As for me, I went for my follow up with GI, yesterday. He thinks that I am fine and that I need to stop worrying..... as well as stop taking the Vicodin. He gave me a good talking too ( in a nice way lol) about my anxiety, ect. It was helpful, believe me, and I needed to hear it. He also recommended stretching type exercise, like yoga, as he says it is good to help stretch out colon section and something about the scar tissue. Anyway, just wanted to update.
Thanks Sue for your comment. I am so sorry about your loss. That is so scary. I continue to get tests done to monitor my vital organs. So far so good. My liver count has been elevated and continued to rise--but they believe that it was because of the infection as well as all of the medication. They tested for Hep and HIV--because of the multiple blood transfusions I had--all negative. My docs are attempting to get my pain under control using Lyrica and Melexicam, both are non narcotic. The Lyrica mainly helps the nerve endings and the combination seems to help. My doc said that part of the pain is that the scar tissue is vying for position, pushing things around in there, and that it will probably be September or October before everything settles down. Boy am I ready. I am extremely active, working in outside sales, mowing, weed eating, cleaning, walking, biking, etc. I figure that if my body hurts I might as well give it a better reason to. Have a great evening and good luck to you!
Woah! I bet you are so thankful to be alive for all the things you went and are going through! Makes my problems seem so small in comparison. I am not a complainer, especially when I am sick. I am thankful to be alive too! My diverticulum pocket could have burst and I could have gotten much sicker than I was. I was living with the pain for almost a month before I did anything about it.
Thanks for sharing your story. These are very personal things to be sharing - but it's nice to know that other people are having similar problems. I know that when I'm running for the bathroom 5 to 7 times a day that others are doing the same thing!
To greeneyes - God was certainly on your side in helping you get through what you endured. It sounds like the doctors are really keeping an eye on things. It's great that you keep active. I will keep you in my prayers.
and Sue 357 - So happy to hear you are off the vicodin. And reading that your doctor suggests stretching exercises, I will try that myself. I have been doing more work in the yard such as gardening, painting our picket fence, etc.
I know what you mean though about worrying. I head back to work the day after Memorial Day since being off from the first week of November and am nervous about the possibility of having to run to the bathroom. I need to stay positive.
my son now 5 lost almost all of his intestines in 2004 and i have been dealing with everything you guys have been saying! "aross" you say you have been following very low-fiber, low-fat, bland diet. is it working for you?
What a horrible thing for a little boy to have to go through. I hope that you both are coping well and that your doctors are actually helpful.
As for my diet, I followed a low-fiber, low-fat diet for a long time to help with the diarrhea. As my recovery went along I started to suffer all the time from bloating and gas and after a very long time I finally figured out that complex carbs are the culprit. I cannot digest them well at all so if I dont want to suffer, I just dont eat them. These days, I typically eat a normal diet if I know I am pretty much going to be hanging out around the house. I take digestive enzymes with every meal. If I'm running to the bathroom more than usual on any given day then I drink a couple servings of pedialyte or smartwater to replace the electrolytes. I've started taking magnesium citrate along with the digestive enzymes because it's supposed to help the enzymes work more effectively.
I only had 40% of my small intestine removed (ileum and valve). How much did your son have removed? What symptoms is he suffering from? Im assuming lots of diarrhea, malabsorption, iron deficiency, B12 deficiency, and more? Ive done a lot of research online over the past couple of years trying to get answers so if you can give me a little more information about your son I might be able to give you some more helpful information. I sure hope I can, this is a terrible thing to have to go through.
I just read your son's history in his profile name, and since reading it, my struggles are so minimal. Your post made me realize that I should have no complaint. My heart goes out to you and Nicholas. I have no answers or advice for you. All I can offer is prayer.
Please keep us updated.
I feel chastened by all of you with much more serious problems, but I need some support/advice, and this seems to be the place. After 5 bouts of diverticulitis in 2 years with ultimate blockage I had an elective (non-emergency) laprascopic colectomy with resection two weeks ago; four days ago i started having sharp, breath taking pain about four times a day on my rt side - several hrs after eating and during the night. It certainly brings me to my feet!
I saw my DR yesterday for my follow up - he said the pain had nothing to do with his five incisions that are healing well, and since I'm functioning he said to go about doing whatever i want, and come back in two weeks.
This pain really worries me -
Sorry about the delay in responding. I finally went back to work after being home seven months and have been concentrating on that. I wish I had an answer for you with the pain. I never had it following surgery. Just the horrible diarrhea. Not sure which I would prefer.
Have you seen him again yet? Please keep us informed.
I just went thru and reread everyone's comments, and I know I am blessed to be able to live normally. I am still sore - it's been a month now, but don't have undue discomfort unless I lift something too heavy.
I have some hygiene suggestions the readers might find helpfu:
19 years ago when we added a new master bathroom, I had a hose run under the house from the bathroom sink and brought it up beside the toilet, attaching it to a brass hose, and putting a special head on the end that can be adjusted from a very gentle output to a gentle output. The brass head even came with little cups to fit on the end for multiple users (it's for me only), and I attached it to the wall next to the T. paper with a brass clamp. Several times a day (or more) I wash myself with Johnson's all over baby wash and keep a stack of guest towels alongside. The nozzle can also be used for a gentle enema if necessary. When I don't wash, I use a Preperation H "fanny wipe" instead - that is basically a solution of witch hazel with aloe.
These two hints keep me clean and non-irritated.
I hope this helps other sore bottoms!
Hello Im in tears reading your posts. I am so pleased to have found others who understand and have been through what I am currently going through. In September 2007 I went in for appendicitis and a couple of days later went back to surgery due to a "blockage". They had accidently cut my colon which resulted in peritonitis. They had to remove 50% of both my colon and small bowel. Its going on 10 mths and Im still going 10 times minimum a day...I get infections in the bowel and Im so sore its like passing boiling water. They keep changing my medication but nothing seems to work. Im also seeing a dietition but that also doesnt seem to be working. Ive been told I could be like this for 3 - 5 yrs or for life. They dont really know. Im using lots and lots of rectinol due to its anesthetic content.
I guess this is the place to be.... I just had my large colon and a portion of my small removed on May 28th. It has been a rollercoaster ride since. I have good days and bad days. I just am so done with the pain.... some days, i just want to give up! But I have read this string..... and considering what some of you are going through... I need to start counting my blessings and suck it up. BUT It's that I am impatient with the healing process... You have all helped me to get through another day.....Thanks
Also.....I do think I had the best surgeron at Mass General!
This is my second surgery for resection the first was in 2005 with the ilovalve removed and assending colon. Then in Jan 2008 I had surgery for a small bowel obstruction, and now in June 2008 another colon resection and all of my small bowel was taken out and worked over for adhesions! Some days are terrible as I either have constipation or loose stools. When I don't go I bloat and have cramps. This is the first site that I have found that talks about all of the cramps that happen after you eat and the gas that comes out! Every doctor tells me to eat what I want, but I cannot! Thanks a million everyone! I will continue to learn from all of you!
Hi Kitnkate my doctor at first said to eat what I want but I definately cant. Fats, sugars, most fruit (on a really good day I can eat a banana but this is rare) are out. Everything goes through me but some things go much faster than others.Do you or anyone pass blood? I have about 1 day a week where I pass lots of blood and it worries me.
Hi all, just wanted to drop in and let you know how things have been going. It's been almost 2.5 years since I had to have 40% of my small intestine removed and very, very, slowly it is getting better.
I still have the diarrhea, but only 2-5 times a day and it is controllable to an extent (meaning I dont have to jump up and rush to the bathroom every time). I don't suffer much from bloating and gas as long as I steer clear of complex carbs (mainly bread, rice, pasta, etc.), fried foods, and greasy fast food. I can tolerate a little bit of dairy ( a yogurt and glass of milk for the day) but if I go overboard I will get the bloating and gas. Some days I still get faint, dizzy, and just generally do not feel right and that is usually because I've gotten a little dehyrated and need to replace some of the electrolytes that I'm losing by running to the bathroom. And most everday I am tired, like someone has sucked all the energy right out of me. I'm sure a lot of this has to do with raising my toddler, but not all of it.
Some of you are really suffering right now and I know exactly how you feel because in most cases I have been there too. Hopeless, frustrated, anxious, and more. When this happened to me I thought my life as I knew it had come to an end and didn't know what I was going to do. It is getting better, it's just taking a really long time and when it comes to something that affects every single thing you do every single day, the recovery time can seem like an eternity.
Thanks aross123. I didnt think there was light at the end of the tunnel. It does seem like an eternity but I guess I just want my life back without having to worry about where the toilet is everywhere I go. Im trying to be patient but its hard.
Some how I am fortunate.... I have enough warning before I have to go to the bathroom....but I must say that the gas noise is exrememly loud!!! Of course I dare not pass gas in public because i don't know it if's going to be just gas or pooooo.....LOL. I found that fruits, raw veggies, greens, high fiber, and carbonated drinks are especially troublesome. Strawberries (my favorite) come out the same way they went in. Not breaking down at all. For some strange reason I now crave milk. Previously I was not a milk drinker but the craving started right after the surgery. Weird huh??? As far as figuring out the food thing.....as boring as it sounds I found that if I eat 1 thing at a time for 2 meals, I'm able to determine if it is something I can add to my short list of foods that pass ok...... tuna... egg...frosted flakes....fruitloops.....and chicken are keeping me alive for now... To control the nausea, I tried gram-crackers.....not good, caused a lot of gas, switched to wheat thins (just 3 at a time) so now I have that somewhat under control. It is like starting all over.....trial and error... But slowly I am getting there.
Hi. Has anyone experienced constipation as a result of colon resection? I am 5 months post op and have periods of normal bms, or diarrea (diarrhea) sometimes, but lately seem to be a bit constipated. As a result, I have some soreness in that area. I am taking fiber once a day ( citrucell) and do feel much better. I go back to my surgeon, July 15th and will discuss. Also, I am wondering if prune juice would be good as I do not want to take laxatives, if not necessary. Thanks
No I definately dont experience constipation I cant have any fibre or I wouldnt get off the toilet. Prune juice would be good but be careful on how much you have because it will cause diarrea (diarrhea) or it does for me...I cant even look at it..
I have had constipation problems since my last resection. I know that a lot of people talk about bowel moments so many times a day and I envy them:) I had to take a low dose of Milk of Mag. for my bm's to get to normal. A lot of times the doctor says no at first, but my bowels have been a mess for so long that they said ok. Where was your resection done on your bowel. Mine was sigmoid this time. I am about 2 and a half weeks out and very swollen right now.
I was surprised that a month went by without a post. To Crystaa - How awful that this happened to you the way it did and now you have to deal with this. I also still, after 7 months, have bad days that I could scream with the pain of going so much. I have to wear pads, not from the fear of diarrhea but the bleeding some days gets so bad. I went back to work a month ago after being off since the first week of November. To this day, I have gone without eating until supper when I am in the comfort of my own home. I drink water and have maybe a few crackers during the day and walk on my lunch break. It's the only way I can get through the day without having to run to the bathroom. Some foods go right through me within the hour, the way they went in my mouth. It *****, with all the parties this summer, but I am comfortable going without eating just to have a fun time.
To Bad Luck Gut - Through trial and error, you get to know the foods that work for your system. The only food I can tolerate during the day are the Pepperidge Farms fish crackers. They are making a mint off of me. I wish I could buy them in bulk instead of these small packages.
Hi. My resection was the sigmoid area...7 inches, The funny thing is today, I am experiencing diarrea (diarrhea), which I haven't had for a while. Of course, we had a BBQ yesterday. I had a hot dog ( something I haven't had in almost a year!) and a little fresh fruit, which I have steered away from as well. I also had dental surgery, last Thursday, so am on Amoxicillin for that as well as a little Vicodin at night. They had to remove a very decayed tooth and begin prep for bridge. Yes, I have also been blessed (lol) with periodontal disease so have had several surgeries with that. The thing that bugs me is I am over 5 months out from my surgery and while I feel better than I did at 2 weeks, like you, I guess I expected to be 100 percent by now. Even though the surgeon said it could take 3 to 6 months and I guess even up to a year to completely feel back to normal.
Hope everyone had a great 4th of July with or without food. My husband and I packed so much into four days of being off from work and I ate a variety of different foods. Had some issues on the 3rd when they shoot off fireworks in our city. Porta potties and long lines just do not work for situations like ours but I survived.
To Bad Luck Gut - Hope you had those beers. I found that beer actually sits well with me. Budweiser or the new Budweiser with lime are my favorites and do not give me gas.
I will try and find an outlet that sells Pepperidge Farm fish crackers. Although I had never eaten them before my surgery, I craved them during my recovery and have eaten them since. They have to be the plain ones and since I do not eat until supper, I go through quite a lot of packages a week. I've tried oyster crackers but they are just not the same.
Oh, also Bad Luck Gut - how did you feel after moving that washing machine. I find that I cannot lift or move anything heavy or I will have it in my stomach bad!!!!
Take care everyone,
Hi. I had a good 4th but overdid what I ate, I think. I am finding that salty snacks, like chips...my favorite thing in the world are a no no. They give me diarrea (diarrhea) and then I am sore for the whole day! I also ate a hot dog ( Nathans) which also might have irritated. Has anyone else noticed that where the surgery was performed ( anasmotosis sp?) is sore after diarrea (diarrhea) bouts? Take care all.....and I am sure enjoying my new baby grand daughter. You can go to my profile and see her pics....
So nice to have someone to relate to! I went to a party on the 4th and due to the fact I am not yet 3 weeks out so I ate nothing at the party. I am so tired of only eating at the end of the day! But I am so glad to hear that others go through it too. I loved the gold fish crackers before my last surgery so I would bet that I am going to try them again. I had to spend 4 month on a semi liquid diet because of a failed surgery for small bowel adhesions. The surgeon that did it did not get all of the adhesions and I had to go through another full surgery and a anasmotosis of the sigmoid colon. I am sore after diahrrea too. Oh, did anyone here ever fear eating for a while because of all that we had been through? No one I know ever mentions that. I have had 2 blockages and it puts a real fear of food in my head sometimes!
Hi. Thanks. Yes, she has truly been a blessing through all of this. Back in Sept., when all of the diverticulitis attacks began, is when I found out I was going to be a grandma for the first time. It is interesting to hear from people who have just had their resections, within the last 2 months, and here I am....over 5 months out and still having some issues. It is depressing, to say the least. I think some of it must be what I eat but boy, I spent several months on "mushy" diet ( before surgery, when the doc was trying all of the antibiotics which didn't work) I am also a big baby and suffer from Anxiety Disorder ( GAD) which seems to have reared it's ugly head since my surgery, more so than any other time in my life. I go back to my surgeon, on the 15th, and he may do a CT to check the resection. I keep hearing people on this site talk about adhesions and such so I may ask him to do it, if nothing else but for my own peace of mind that everything is alright.... My GI doc thinks I am neurotic but the kicker is that during all of this, I found out I was in menopause and had to start on hormones which have really helped..... Thanks all.
I am 9 months out from surgery and still have huge issues. You are not neurotic its real and everyone is different.I had complications after the surgery and end up with hospital induced pnemonia (pneumonia), staff infection, lost 24kgs in 6 weeks, had an open wound due to the peritonitis which also got infected. Everyone's healing time will be different as will some of the issues but we all have common issues too. Im glad you had your grandchild to look forward to. Im having a colonoscopy soon so they can check whats happening. By the way Im in Australia as Ive nocticed most of you must be in the USA so I hope thats not a problem for me to come here.
Reality slap..... I am still in too much pain. Pushing the washer didn't help. But the pyhsical pain at the incision site right below the belly button is toooo much. The doc gave me a script for Gabapentin. I have been taking it, but I'm not sure if it is helping at all since the pain is intense....forget sneezing..or coughing... That puts me on the couch for the rest of the day. I am taking Aleve and Tylonol as well. Very frustrating since it is been about 6 weeks. I don't know if it is muscle pain, a hernia or what, but I need to get past this issue. CT scan showed no problems. Mornings are now better...but as the day progresses the pain increases. Sometimes I have to hold my stomach just to walk around; other times I have to hold my chothes away from the skin, because it is soo sensative. So whether it is nerve pain or muscle it hurts bad!! Anyone else experience this??? I need to be able to get back to work. I it wasn't for this pain, I think I could get back to work.
For butt pain issues..... I suggest a combination of Tucks (wonderfully cool, you'll like 'em), and Desitin (especially before bed). Heals the bottom in about a day.
My dad had to wear a bag for about 3 months and just 3 weeks ago had it removed. He was admitted to the hospital last monday and was diagosed with a intestinal obstruction which they treated for 6 days with a ng tube. That didn't help the hernia so he had another ct scan done and had surgery sunday evening where they repaired the small intestine hernia and did the mesh thing. He was feeling good yesterday and today he told my sister he was sick all night and that they did some more x-rays on him. I live over 225 miles away and I was wondering if anyone else has had anything similar to this and what we can expect.
Just received call from sister said they did the x-rays because he pulled the ng tube out a little and they wanted to make sure it was still where they needed it to be. Apparently his blood pressure was really high and he had a bad headache so they gave him some medication for the blood pressure and it went to normal. He is very tired and weak sounding on the phone.
Hi. Thanks for the feedback. I had to stop the Amoxicillin( did that on my own) as I think that was causing the diarrea (diarrhea) and therefore the soreness where I had the resection done. I know that my surgeon said it can take up to a year to recover from this. I am going to ask him to do a CT scan, just for my own piece of mind. His nurse reminded me what a big surgery this is. Sometimes I wish I had never had it but then remember back to all of the diverticulitis attacks and change my mind. lol. As for being from "Down Under" Welcome.... Glad to have you but of course not for the circumstances. Wondering if anyone else has experienced soreness where the surgery was done from diarrea (diarrhea)? Also, for Bad Luck...you may want to have your doc check for hernia, around the incision site. Mine was done lapro but I remember he kept checking for that as it is something that happens sometimes.
When you mentioned the Tucks, it reminded me of something I never mentioned. I've tried them and they are fantastic but I get the Equate flushable wipes at Walmart. They come in a package of 60 (blue package), are much bigger and only cost $1.30 per package. I swear by these and they instantly sooth. I even carry them in a ziploc in my purse. I also use them on the grandchildren when changing their diaper. I hope you find them to work as well as I do.
As far as the pain, I had it for about 2 months following the surgery but that was it. Sometimes I get muscle spasms around the incision site from lifting, turning a certain way and even laughing. But my mom continues to have pain. She has had three resections in the past four years, is constipated all the time and has to be careful of what she lifts. I continue to have the diarrhea after 8 months. Believe me, they will have to carry me into the hospital in restraints before I go through this again.
Kim, I had to laugh when I read your post about having to be carried into the hospital in restraints...I hear you lol. I don't know which is worse. The problems before or the problems after.... anyway, all in all, I guess I am glad I had it done. I am doing better since I stopped the Amoxicillin that the periodontist gave me. It was causing the diarrea (diarrhea), I think, and therefore the soreness. Miss my potatoe chips, tho, as that is another thing that sets it off. I think it is is the salt. Take care.
I am now about 4 weeks out and had a terrible few days. I had those muscle pains that twitch all day and night UGH! I think that Bad Luck guts mom and I are in the same boat. She has had 3 resections and I have had 2 plus another surgery for adhesions. I am so upset that I can't lift or even turn the wrong way sometimes. Yesterday I just sat at the computer too long and paid for it! I Hate this! I worry every time I get these pains because of other blockages! Thanks for listening!
LOL about the restraints I know that feeling:)
It has been over 7 weeks since I had the surgery. Today I feel no better than I did 4 weeks ago. The pain below the belly button burns. I'm still holding my gut a lot especially when I'm walking. I'm feeling very discouraged........can't drive, can't bend, can't lift anything......and can't seem to get beyond the pain. Can anyone suggest better pain stuff than 2 Aleve every 12 hours and 2 Tylonol every 8 hours. I don't believe that these are helping any.
I can tell you that 7 weeks seems like a long time and I know that I can't bend or lift anything yet either. What did you have done again? The first surgery took me 3 months to feel better. I know it sounds like forever but it does get better. Do you have any type of abdominal binder to wear? You can get them at any medical store and they really help on the days were you have to hold you stomach all day. Also, I use ice packs right on the belly that I get at the Walgreens. I take Celebrex that I got from the dr. Maybe they would give you that. There are days like the last few days that I am in the same shape as you and no matter what I do it hurts all day. Sure makes life seem bad and my family tries to understand but its hard on them and they have no idea what we go through. Oh, another thing to try pain patches. You can get them at Walgreens too Bengay makes them. They are easy to put on and take off.
Hope this helps. I feel your pain for real:)
I had my large colon removed and apart of the small. I have a mesh that's been recalled that may be causing some of the pain. It is hurtful. I am going to try and get an abdominal binder. I can't let anything brush against my stomach. My family went on vacation without me this week....I knew if I went, I would just try and do to much. I am supposed to be back at work a week from Monday......Don't see it happening...... yikes...
I have had a few bad days...I had a stabbing like cramp that would not let up! I would happen every few minutes! I had it down low in the left side. I finally got some sleep last night! I hate this!
I know how it feels to let the family go on without you! I cry myself to sleep sometimes...I pray for you and me both :)
Hi. so sorry you guys are having so much pain. I truly know how you feel. I am praying for you both as someone who is almost 6 months out.... Update: I went to see my surgeon and was gonna ask for CT to check for adhesions. He gave me the bad news that he would need to open me up for that....big fat NO WAY lol. So he is gonna do a cbc blood test, just to make sure infection has not come back ( I don't think it has) and then a colonoscopy soon. I just want to make sure that the pain that I have sometimes is normal. He thinks it is just different foods or something irritating the colon. Anyway, I asked him what was the longest time period he has someone complain that they don't feel "completely like they never had the surgery" and he answered 1 to 2 years. So hang in there guys...I am God bles
Thanks for the nice note and the update you your condition. I appreciate you telling us about how it goes. I know that when we get those cramps and gas and not going to the bathroom the first thing we think about is a blockage and all of that! I live in fear of that! I know I need to work on my diet! Its hard to know how anything will go through the system and sometimes its just easier to try new things.
What was you symptoms again? One or 2 years seems like forever right now. My long incision makes normal life nearly impossible! I am to go for a 30th anniversary trip with my husband in just 4 weeks and I am so depressed that I am in this shape.
Oh well, at least I am trying! I just don't know what I would do without you Sue357! Hey, that is my favorite sister's name Sue! No wonder you are awesome!
i didn't make it through Monday with the pain. Ended up in the ER where the 8 week old incision burst opened as a result of a large abcess (abscess). Yikes.... that is what all that pain was. It took all that time to surface and then when it did, it popped through. OUCH!!!! So I just got out of the hospital again. I was soooo sick. On Tuesday...I was thinking that dying wouldn;t be soooo bad. I don't think i can ever walk into a hospital again. They transfered me by ambulance from one hospital to aonther. Can't wait to see this bill....but I was tooo busy wishing for death at the time to care.,,, hope everyone else is doing better. You give me hope........
Oh my goodness, what you have gone through!! All those days with so much pain. And that sick feeling, I'm just glad to hear you got to the hospital and things were taken care of. Let us know in the upcoming days how you are recovering from this new episode. Now that you have this behind you, please believe that things will get better.
I once felt the way you did, that death would be better than living this nightmare, told my husband that many times. Prayed for answers and am happy to say that each and every day is better than the last. It's been eight months now and I also was told that it would be a couple years to get my system back on track. Some days still are bad but "I can handle some more than all."
You are in my thoughts and prayers.
I can't believe what you are going through! Did you run a fever at home or did you notice any bumps or anything first. I wonder about my incision and how painful it is! Oh, I thought I was the only one wishing the good Lord would just take me HOME and not live with all of this pain and stress! I feel so down sometimes! I know how awful being in the hospital is. No one in my family thinks its a big deal, that when we get sick we can just go there and get fixed but I live in fear of it! I appreciate you all so much. Bad luck, hang in there! I want to say that it gets better! Do you have to wear a bag at all? I wondered if they left anything at all inside of you on the large colon. I am just having a horrible time with food. I can't eat much at a time and have lost a lot of weight again. The dr says to eat what I want and to gain 10 lbs. That is easier said than done. I am praying right now for all of us and for you Bad luck!!!
I am so sorry that you ended up on the hospital again. How are they or did they treat the abscess? I too live in fear of a blockage so am glad that I seem to be having normal bms again. My sigmoid colon was starting to stricture which is why I had to have the resection in the first place...all of the scar tissue from all of the diverticulitis attacks. I don't know if I ever mentioned but I have a small colon anyway. The surgeon said that is just the way God made me. When he resected, he had to get a connector from pediatric unit as I was so small. I have also lost weight. 30 lbs through this whole thing, which I needed to lose, but not this way. People at work keep commenting on how "good" I look and I tell them, you don't want this diet...lol....try Weight Watchers. God bless you all and hang in there. I am going on 6 months out and just now starting to feel a little more back to normal.... Oh kitnkat, thanks for the compliment on my name. It is short for Susanne. I was named after a twin aunt who died, in the 1920's, from diptheria....Her other twin was Nancy.
Wow, you have lost a lot of weight! How much of the sigmoid did you have removed? I have had about 4 inches due to a chronic vovulus and that was enough! The sigmoid was far worse that the assending colon that I had done first. It seems that I have more swelling and its harder to tell if you are having gas or bm's! Drat! Hope you stop losing weight! 30# is alot!
I know how it seems, people tell me I look anorexic and I just want to scream! Its so hard to not have any one around that understands!
How are you today bad luck gut? I hope better:)
How cool that your other twin aunt was named Nancy! We must really be meant to be friends!
I had 7 inches removed. What is chronic vovulus? I never heard of that. As for the weight, it seems to be stabilizing although I have to say that I needed to lose some weight. I am 5 foot 2 and had gotten up to 186 pounds, last summer. I could probably stand to loose more, but right now just want to focus on getting healthy.
Hi, i am new to the forum, I live in Spain. I had my Sigmoid removed, 6 inches, by laparasope 9 months ago. A few weeks after the op. I had a colonoscope done twice to "open" the colon where the scar tissue is, ´cos my poo was coming out little by little 6-8 times a day, especially about an hour after eating anything. Actually it didn´t help much and I am much in the same situtation, I am used to that now, altho' I always need to know where the nearest loo is LOL, BUT , my main problem is WIND. Sometimes it so stinks I get soooo embarassed, hubby goes to the spare room. I can´t take fibre as it seems to make it worse, physillium seeds etc. which I used to rely on pre. op. Does anyone have any suggestions ?
Welcome to the forum! What part of Spain are you from? How exciting! We come from all over. Okay, I have small bm's too and sometimes it gets backed up like today! I had spasms over my belly button area and I thought I was going into another obstruction, but I ate something and tried to lie down and then it broke open! Does anyone else have that trouble with the pulling and spasms? As far as the wind goes I can get rid of most of mine if I just lie down after I eat and turn on my left side. It works! The rest of the day its better or at least you are not in public when it happens. I do take an antiacid with anti gas in it too. Pepcid also. Do you have those meds there? OH, fiber does a number on me also. I hope this helps. I wonder if I will get over the small bm's, I wonder if my dr will look at my bowel to see if that is the problem. Today was a very bad day. I feel hopeless and so lonely. I could not even leave the house until 5pm!
Take care all!
About the voulvus, that means a twisting of the bowel. Apparently my large bowel was twisting and then untwisting so it would go into a blockage. My small bowels were full of adhesions. Like I said earlier today I was sure that I was going to the ER with the nasogastric tube! I wish I could find real hope. I did not eat anything wrong or do anything that I could remember that was different. Drat! Thanks for listening.
Hi. Welcome to the group. I have had problems with gas too, which is extremely foul...lol... It seems better this week, but I definately know what you mean. My surgeon has me on a high fiber diet. I eat fiber cereal and drink fiber in the morning. I am also eating a lot of beans which are very high in fiber. You might want to try that if you are having a problem with the psyllum. Right now I am battling nausea but think that is related to anxiety and/or a stomach bug. I understand, kit, about the twisting bowel as I have heard of it but never heard that term.
Hi, thanks for your advice. I live in Marbella , altho´I am English by nationality. Well I have been better today, not so much wind, wow was it LOUD last night tho´ sounded like a gunshot LOL. Only have been to the loo 4 times, so a relatively good day. I have to be very careful with the fibre, I eat a fibre b/f and tons of fruit ( altho´come to think of it I missed my apple today , maybe that´s why I feel better ! ) I am trying this new product Benefibra which disolves in water or juice, seems easier on me than other fibre drinks, let´s see........tomorrow I have an appointment with the GI dr., so maybe he will suggest another colonoscope. I don´t mind that, but that pre. op drink preperation soooooo disgusting.Keep well all. I will let you know what doc. says
Hi there, I was wondering if you were a teacher you must be gearing up for school this fall! I am also a new grandma! My grandson is now nearly 16 months. Its such a joy! I was very happy to hear your story when I re-read some of the posts you have made it seems to help me. I am also a nurse so sometimes that is helpful but lately it just makes me worry more:) Anyway, have a good day and take care!
Hi...sorry for the delayed response. I am sooooo much better now. Thank you for all your support. The infection is being attacked with antibiotics...but what i didn't know is that antibiotics cause yeast infections....which I have never had....until now. Unfortunately, I also got Thrush... very yucky...and bizarre. BUT other than that.... I am getting better. I can see the light at the end of the tunnel....finally. Based on your posts, I am fortunate that my doc took the whole large colon. I have not had any obstructions since. They recommended that I avoid high fiber foods,so it's interesting that they are recommending that you increase yours. I don't get that. What happens when you cut out the fiber?? My bathroom time is loud and very smelly.... I am worried about this for when I go back to work. I wonder if I can request that they sound proof the bathroom?? LOL..... it is embarassing.
Hi. To Kit...I am a GED teacher of youth age 16-21 so we pretty much go all year round. However, I am taking a vacation from 8-1-8-12, but have a sub. To Bad luck: I am on a high fiber diet NOW.... to keep things moving, I guess. At first I think they want you on a low fiber diet to allow the colon to not work as hard. I have been on all of the diets....low fiber, low residue and now high fiber. I would ask the doc when you can increase fiber. I know that for a few months after my surgery, fiber would cause me pain.... so I stopped until I was able to take it with out pain.
Hi. Went to the doc yesterday to ask what to do about my smellies and frequent visits to b/r. He says 5-6 times is classified as normal, just have to learn to live with it, :( and that if I get too gassy to cut out fibre, fruit and veggies until I calm down. So I guess it´s all about learning to control our colons. I also complained about the heartburn I have been having, usually at night and especially if I am stressed ( we had a robbery last week, ALL my jewellry was taken, I had TERRIBLE heartburn that night) He has put me on monolitum for 30 days and said it should clear up. Slept better last night. I wonder if I will ever get back to normal..........................It is so hot now, my ankles have swollen to twice their size, that never happened before my op. either. Anyone else had that side affect ?
Hi. I also have Acid Reflux so when you mention heartburn and stress, that is the first thing I thought of. I have not familiar with monolitum but I take Prevacid daily. I think I put it in a higher post, but I also suffer from depression and anxiety disorder so am also on Zoloft and Klonopin. And hot.... I live in Phoenix...lol.. but have never had any problems like that with my ankles. You may want to explore the possiblity of acid reflux or GERD as it is called.... Now, I am doing better pain wise but having nausea which may be related to anxiety, even with the meds. My surgeon ran a CBC just to check for infection and it came back fine.
Guess what? You both have the answer already to my question! Acid Reflux has hit me full force over this past week along with stress and anxiety! I was so nauseated the other day I was sure that I was going into a spell where I was plugged up! I am so glad to hear that this is normal. I need to up my dosage the over the counter meds until I can get into my dr. I was so worried that I was doing something wrong! GERD is probably due to the nasogastric tubes and also all of the system being messed with. I feel you on the GAD Sue, I have been on meds before for it and I have noticed my anxiety levels climbing again. I need to visit with my md for that! Is there no end to this! I am glad that the CBC came out good. I am so glad you are doing better pain wise. That gives me hope:) I was due to see my surgeon last week but the appointment was moved. I am again so happy for this board. Gosh Poddle so sorry about the break-in. I am glad you were not hurt. About the ankles swelling, because you are not far out of post op the body is still getting rid of extra fluids through the lymph glands that are located in the abdominal cavity. Sometimes the swelling from surgery puts extra pressure on them. Do you put your feet up a couple of times a day? Also, taking in extra water helps. If it gets too bad or gets worse let your dr. know about it. I had swollen ankles with one of my surgery's not this time though.
Hi, thanks fotr the comments. Do you really think my ankles swelling is due to post op. ?? My operation was 9m months ago! Yes, Itry to put my feet up, and I wrap an ice pack round them, but doesn´t seem to make much difference. I have an appointment with my orthopeadic dr. ( some other problem..................) so will show him and see what he says. People are telling me it´s my circulation, but haven´t had any problems up to now. I am taking your advice and upping my water intake. My feet are so swollen at the moment i can´t get my shoes on, but it is soooooo HOT today. Gonna put the a/c on now. My heartburn seems better with the medication. I am taking so many pills I rattle in the morning :)
So glad to meet you all, hang on in there!
Hi all, I was wondering if anyone has been diagnosed with intestinal bacteria overgrowth. I'm taking a round of antibiotics (Flagyl) to see if it helps relieve some of my intestinal symptoms (bloating and gas mostly) that might be due to bacteria. If you have taken it, how did it make you feel and did it help? This is the 2nd day and my intestinal discomfort is actually worse than before. I dont have much of an appetite and food/drink taste a little funny. Any input would be great.
I had to take Flagyl last year when I had Diverticulitis. Don´t worry if you feel awful, I felt so bad I ended up calling my dr. to see if that was normal. It was! I got bad diaorreah with it. But, it will clear up your infection for sure, so just bear with it. Good Luck !
Hi. I have never been diagnosed with that, but during all of my diverticulitis attacks I was taking a combo of Flagyl and Levaquin. Both used for different things but many times to kill intestinal bacteria, diverticulitis, etc. I can tell you that I HATED Flagyl...lol. It does make things taste weird... especially water which I love. Also, it can cause diarrea (diarrhea), as well. In my case(s) they had to keep putting me on them because they never fully cleared up the infection and eventually, that is why I had the resection....hope this helps.
Since going back to work after being off for 7 months, I find myself very busy and feeling pretty good. I am able to leave my desk to use the bathroom when needed, although have pretty good days. As I've said, fish crackers and/or pretzels is what I eat throughout the day. I walk on my lunch break which seems to help. I have a regular supper with my husband whether it be eating at home or going out. This routine seems to be working out well.
I have been reading all your posts daily and want to tell you, there is light at the end of the tunnel. I feel pretty good saying that, since I was ready to give up not so long ago.
I do want to let you know this, I had watermellon this evening. (the new seedless kind, but actually has the white seeds throughout) and have been throwing up ever since. Seeds was something I had to stay away from before my surgery with the bowel obstructions.
Everyone, take care
Hi. Thanks for the info on the watermelon. I have not had in almost a year, due to the seeds. I was wondering about the seedless ones and have been tempted. Also, I learned a lesson this weekend about food: My sister had myself and hubby over for dinner. Shrimp Scampi...garlic...Caesar Salad garlic cheescake no garlic...lol...wine.... lots of garlic. Well, I was sick as a dog by the time I got home.... should have known to stay away from all that butter and garlic....lol....
Thanks so much about the watermelon, my husband was trying to get me to eat the new seedless kind! I don't want any obstructions! Hey sure id you when you said you got sick did you throw up? I was going out to eat italian this weekend, maybe I should watch the garlic because I am now 6 weeks out . I get new info everyday from you all. Kim glad you are back to work, I wonder if I will ever get to where you and sue are...ugh everyday I fight pain, problems with the bathroom and what to eat! Poddle, did not realize that you were 9 months out from surgery. No that swelling is not from the surgery this far out. You could be retaining fluid for a number of reasons. Maybe you should let your dr. know about it. I have had a sore throat for about a week think its from the acid on my stomach! Makes my throat swell and then you lose your appetite. I have not yet gained any weight back from surgery. How did you gals get back to eating 3 meals a day?
Today I am finally back to somewhat normal after the watermelon episode. Sad to say but I live my life in fear of the bathroom. Sometimes, all I have to do is think about it and I'm back in there. So three meals a day is not part of my life. I've lost close to 30 lbs since the surgery and most likely will not gain it back. People say to me "how can you go without eating" but I say "what will I feel like if I do".
It's strange. You pretty much know even before you eat what kind of food is good for the way your stomach feels at the moment and how it will affect you.
We have a pretty big weekend ahead. Going to the EAA and the Packer Family Night with tailgating involved. We'll see how this all comes out - LOL. Never thought I'd say this but I've actually gotten to like porta potties.
Hi. Well, I was very sick and ( hate to say this) but I ended up making myself throw up. I get nausea, a lot from anxiety I think, but I have never been a big " vomiting person". So I knew that if I didn't throw up, I would be nauseus (sp?) all night. I felt better afterwards. Anyway, I think it was the amount of garlic. My sister must have used about 5 or 6 cloves ( I'm not kidding! LOL) plus we drank some wine and had cheesecake for dessert. My nurse friend says that with the bland way I have been eating for so long, it was probably just too much for my system. So, I would maybe try a little Italian ( funny as I am full blooded Italian), if it were me, as I have been able to eat Italian since my surgery. Just watch out for too much wine and rich desserts lol.
Hi everyone. I am new to this forum. My situation is also a bit lengthy, but I will condense it as much as possible. I promise this does belong in this forum. In June of this year, I was pregnant but, found out that the pregnancy was not viable. The D&C was scheduled for June 18th. The evening of the 17th, I had excruciating lower abdominal pains. My husband called my OB's answering service (my OB was not the MD on call). The OB on call told my husband to tell me to quit screaming (I had never been in this much pain before, and I have had a previous miscarriage) because it wasn't helping anyone. He also told my husband to bring me to the hospital through the ER, and he would meet us there. We got to the ER after a very rough ride to the hospital and the OB did not meet us there. The ER doctor contacted the OB and they just admitted me to the GYNO/SURG floor to wait for my scheduled D&C. They loaded me up with pain meds and I slept until morning.
My OB came to the hospital to perform my D&C after he finished with his morning patients in office. After the D&C, I should have been released from the hospital, but my blood pressure shot up to 165/110 and my heartrate was in the 160's. I was kept in the recovery room for more than three hours at which time they sent me back to the GYNO/SURG floor. My OB came in the next morning and ordered two ultrasounds of my abdomen. He was worried that he perforated my uterus during the D&C or that a fallopian tube ruptured. Neither turned out to be the case. At 5:30 pm the day after the D&C, after drinking two BIG cups of radioactive gross liquid, I was taken for a CT scan of the abdomen.
At 7:00 pm, my OB came back to my room and told me that my appendix was enlarged and that he had my chart next in line for the surgeon on call to look at. At 8:15 pm the surgeon on call came in and said that he did not believe the pain I was in was coming from my appendix but the fact that it was enlarged warranted an exploratory surgery. By 9:00 pm I was being wheeled into the OR. The surgeon made three tiny incisions in my abdomen and one in my belly button, took out my appendix, then noticed a large amount of infection in my abdomen. Out came all the "small" tools, he made a larger incision from above my belly button to below my pubic bone.
Turns out that the excruciating pain that I felt the night before the D&C (48 HOURS AGO) was my sigmoid colon perforating!! He took out the damaged area (I am not sure how much of the sigmoid colon was removed) and fitted me for a very stylish colostomy bag!!! (Can ya feel the sarcasm?) LOL I am one of the lucky ones though, I should be able to have my "take-down" or re-connect surgery in the next six to eight weeks.
Hang on to the edge of your seats boys and girls, are you ready to hear what caused the perforation??? All of the TUMS that I took for heartburn during my pregnancy!!!! Apparently, my body wasn't able to "breakdown" the calcium carbonate and formed a rock that "blew a hole" in my colon.
Needless to say it was a big shock to wake up with a colostomy bag on my side, two drainage ports, a foley catheter, an NG tube and a PICC line that was inserted shortly after I woke up. Oh yeah, and an incision that required 17 staples to close.
Enough about me, have any of you had an ostomy that was later taken down??
If you have can you please share some of you experiences?
OH MY GOODNESS! Don't you just love some doctors? That is absolutely horrible. I have'nt had an ostomy so I can't offer you any information. But I was sent home from the ER with a "I think it's a ruptured ovarian cyst" and a bottle of vicodin only to go back after 12 hours of excrutiating abdominal pain and throwing up every half hour to find out that it was actually my small intestines that had twisted/died and was leaking gastric fluid into my abdominal cavitiy. Im very sorry to hear about your miscarriage, I have had my share of those too.
Take care and I hope your recovery is a quick one!
Wow. That is horrible! I have never heard of anything like that at all.....Were you taking a lot of Tums? Well, you have come to the right place. We all are recovering from colon surgery. I did not have to have a colostomy only because mine was a scheduled, elective procedure but if it had perforated ( which is what they were watching for ) I would have one too, or had...I guess, as I am 6 months out. God bless and I am so sorry about your miscarriage. I never had one but know people who have....
Thank you for the condolences!
Sue: I was taking ten tablets daily of the Tums, the maximum dose allowed on the bottle! I work in a pharmacy and know that the "average" person can probably take a few more than that; I guess I choose not to be average! LOL
P.S. I left out an important part of my story above... I spent four days in the ICU because the infection also got into my blood stream. I had a high fever and was basically packed in ice for the first couple of days in ICU; until the antibiotics had a chance to start working!
It's a very eye-opening experience; and I wish all of you the best on your road to recovery. It's obviously a long journey, but a journey that we are not walking alone. Someone has been through it before us and someone will go through it after us!
This forum is more therapeutic than the psychologist I am paying good money to, to talk about my recent health issues!
I am so sorry to hear about all that you went through Rx girl! I too was sent home the first night of my obstruction and told it was going to be fine. I did nearly die before I got back the next day and spent 4 days on the ng tube before surgery and then had another surgery 4 months later to do a sigmoid resection and adhesion removal! I take tums all of the time. I sure hope that I am able to break it down. How do you know if it does not? Sue, I was reading some of your older posts about pain and I am so glad I did because you are one of the few that post on sigmoid resections. I am now 7 weeks out and have terrible lt sided cramps some days. They are stabbing about every few minutes and nothing relieves them. Today I had to lie down and just wait until I had a bm. My dr nurse just said to hang in there! I really hate this pain. Rx girl, please keep posting. These people are great, I know what you mean about finding someone who understands.Sue and across are great as well as everyone else. Thanks
Hi. Yes, I am doing much better but still have some residual pain, depending on what I eat or do. 7 weeks is not a lot of time, believe me. After 6 months, I am just now starting to feel alittle "normal", so be patient. Kit, have they given you any meds for pain? I am sort of surprised at the nurse's response but after the nightmare of this last year, nothing about the medical field surprises me any more. My GI is an idiot but I love my surgeon. When it is time for a colonoscopy, he has offered to do it as he likes to " look at his own work". Take care everyone. I am off on vacation, tomorrow, until the 10th. If I get near a computer, I will be checking posts...
i just stumbled on this site and i am very grateful. my story is a bit different. i had mesh inserted for an umbilical hernia. the mesh became attached to my large intestine and i tore a hole in my intestine while exercising. my initial surgeon misdiagnosed me with an infected mesh and tried to remove it without proper bowel prep. Six surgeries later, i had 2 feet of intestines removed and have been diagnosed with Crohn's, despite no symptoms and clear biopsies on all surgeries. i have noticed that it has taken a long time for my system to reset and adapt to the "shorter runway" if i eat fried or fast food i will have diarrhea it is very frustrating and i understand everyone's frustration. i will make sure i have my day in court, but wanted to know how others were handling this as my dr's don't say much
Thank you for your story! I was very interested to hear about your infection! What a mess for you with 6 surgeries! I have had 3. If you read a lot of the posts you will find that most if not all of use have to find a bathroom right after eating to go or even to pass gas! I have had about 2/3rds of my colon removed in two different places plus adhesions from the small bowel due to complications from the other surgeries. This board is great for information and Sue357, kimwilly and all of the people show great support. I know that dr says you can eat anything. I have found however to eat low fat diet or not it daily helps. How many times a day do you go? Have you had open surgery or key hole? Do you still run? I used to run a lot, but both times I had surgery it was for twisted bowels after I ran!
Take care and stick around!
Sue, if you check in hope your vacation is going great! Where are you going? I am so happy for you:) Thanks for all of the good advice and listening to me.
Just when I thought things were going well, I had another bowel obstruction yesterday. That familiar horrific pain I had so many times before my surgery was back and I had to live through it because I will not go back to the hospital. It started Sunday night and I am still feeling the ends of it. I've lost track with all the posts. How many of you had to go through this more than once? I will not go back. I'll have to be laying on the floor and it will have to be without my knowledge before I have this surgery again.
I think I did too much over the past weekend and lifted grandchilren too often.
Greetings all. Glad to hear some of you are feeling better. I am more or less the same, still with a lot of gas now and then. Funny thing is some days I am not too bad. I have tried to analize the food I have eaten, and I think if I over do it with fruit and veg. it makes it worse, ( how is one supposed to eat the "5 a day" ?) I am still on the pills for GERD, but I did have an attack early this morning, I am a bit stressed out, so probably that´s why. Some of you may remember I am 10 months post op. now from Sigmoid resection, does anyone think I may improve and get back even more to normal, or is this it? Today so far I have had at least 6 mini bm. Such a nuisance. I just wish I could have one or two "good ones" a day, instead of these poor excuses. And it is so predictable, even if I eat and apple, or a cup of tea and a biscuit, I know and hour later I have a mini movement. Are you all like that too?
Let me know !!!!!!
well, time for a glass of wine !
Kim I am so sorry that you went through an obstruction! It sounds like it worked itself out! I feel for you because I try so hard to be positive but this obstructive monster can strike us anytime and anywhere! Where does your pain start? I know exactly what you mean about going back to the hospital. Did you vomit or just cramp? When some of mine would start I immediately get in the tub and get warmed up and then change positions on the bed or floor. Sometimes that would work. 2 times it did not and I like you ended up in the hospital! I hope it was just overworking your muscles or something. I could be cramps also. I worry if I don't have a bm every day! I feel like a nut job:)
Poddle, after my first surgery after about 12 months I was finally getting to where I did not have the mini bms. I don't know why I get them too. Its even after a glass of water sometimes! I think its worse with the sigmoid area because that must be swollen and it only allows out a little at a time. Right now because of the extensive small bowel surgery I had and the sigmoid resection all at once I am on a bland lo residue diet that make it way worse! So far my small bowel needs lo residue. I don't think anyone but you on this board know the living hell this really can be. We all need to support each other! It helps when I get really down to know that there is a least a few others that have this nightmare!
Wow, just re-read my typing sorry if I sound down, poddle get me a glass of wine too and maybe we can cheer all three of us up:)
Two days later, I find myself still sick after that horrific obstruction. Over the last six years, I have had them anywhere from three to six months apart. They would last for a day and I would get on with it. As you know, last November was the final straw for my doctor and the surgery took place. I thought this fixed it and as long as I got through the recovery, all was well. Still, I live in fear of a repeat occurance because my mother has had three resections done. I swear I will not go back and it took all I had to talk my husband out of it.
As you may have read, I do not eat breakfast or lunch except for crackers and am very careful of what I eat at night. I have learned over many years what I am able to digest so I am not sure what is going on.
It starts out with horrible pain behind the navel area and all you can do is lie in a fetal position to relieve it. I had headache, fever along with chills. I was still vomiting Tuesday night and this started Monday morning. Now (Wed night) I have terrible cramps which feel more like the stomach flu. I do not want to live this scene anymore.
Hello and thanks for your comments.Funny how the docs. don´t tell us about these problems before surgery isn´t it ? Altho´ what options did we have ? I had the resection because I was getting diverticulitis a couple of times a year and they said there was a danger the diverticulis would burst. I seem to be a lucky one compared to a few poor souls here, my only complaint are the frequent tiny bms. It´s okay when I am at home or in the office, but when I travel, which I need to do a lot for work, instead of focusing on business, I am focusing on where the nearest clean toilet may be ! Next week I have to go to Seoul, so that will be a nightmare ! Good to hear that you saw an improvement after a year Kit, it will be a year for me on the 13th. Sept. I had 3 colonoscopes after the op. to "blow" open my colon. Doc said that where they had rejoined the colon, scare tissue had narrowed it. It helped a bit, but I am still far from normal, he likened it to a three lane highway converging into a one lane, hence the backup of "traffic" ! It will all get through in the end, just takes longer !
Evening is here again, glass of wine is waiting,
take care all, remember, could be worse !
KIm, first of all, are you better today? I am very concerned about you! I know that you want to ride this out and see if you can do it at home, but please consider you hydration levels and the fact that even if it comes down to the dreaded hospital at least you will be alive. I know I bravely say no more for me, but I would go if just to please my family or others that care for me. I pray you are better today. I care and understand fully.
Poddle, if you travel that much it must be a very exciting world for you! Seoul! I would love to see that part of the world! I have to ask what part of the sigmoid did you have removed? Was it near the rectum or on the side of your body. I get a lot of side pain now. Its only 8 weeks out and I am having those mini bm's too. You said it did not help to open you up with the colonoscopes. You did not have to be put to sleep did you? I hope that if this is my problem it can be dealt with a scope.
Well, I am traveling next week too. I wonder if I will be getting pain from the plane ride. Did you have any the first time you flew after surgery?
Thanks again for the info. That was quite something to read a three lane converging into one lane. Doctors think they need to dumb all of this down for us:) Sounds like with your intellect you could handle the real story.
Hi, what a nice post ! Yes I think it was near my rectum as, bet you have had this humiliation too, when I had an examination post op. doc could feel the joint when he put his finger up my a.. ! Yes, every time I have had a colonoscope I have been put to sleep, haven´t you ? Must be horrendous if not. If I still have mini bms in a few months time I may request a further " blast " Can´t do any harm I suppose, it´s just that dreadful preparation !!!!!!!!! No I doubt you will get any pain when you fly, don´t worry about that. I know.......the doctors do treat us like idiots sometimes, but I think was being rather sweet :) Today I have been naughty and had pizza for lunch ( NOT a good idea) it was even that good ! I am considering taking everyones advice here and cut down on complex carbs. What do you think about that ?
Hi guys:) I came across this site looking for a reason for (now after reading some of this) an unmentionable and passing stomach pain reason. But internet is there and so easy to check. Anyway, I saw aross 123 mentioned electrolytes. I have just started Bikram yoga, & it's in a very very hot room and one sweat a lot. I have read a lot about Bikram & electrolytes is mentioned so much. Never heard about it b4, but now it's everywhere. The choice for putting it back in the body at the studio is coconut water. Pure coconut water. Nothing added. I know this is a very small part of your problems, but maybe it can do some good. You might already know it though. Check w/doctors first anyway. And check out www.cocotap/nutrition
Bikram yoga is also amazing for the body. It can help for so much. Yoga at all really. Meditation is also something I hear from a lot of people is very healing too, because your stress is reduced. (specially good for stomach conditions) Take some practising & a teacher is good. Sure you can find private teacher if classes is hard to attend. I have yet to get into meditation, I will try deal w/the heat of the Bikram first. Another thing that might be good to check out is Aloe Vera. I know "Forever Living Products" Aloe Vera Gel is very good. See website. I really really hop u guys will get better & totally heal. It 's incredible how much can go wrong, but it's amazing how much our body can deal with & heal itself. So I cross fingers & toes for you all. Hannxxie
Hi I am very new to this site, was searching for some help with bowels and happened upon it. I had a bowel resection done Dec 15th, 2006. I sported an ileostomy around for the better part of 7 monthes. After the reversal, some days were so bad, I seen myself begging my surgeon to give me back the lil fellow. I find even now I cannot eat milk products, no cheese no eggs, etc. Very bad gas from these. I having been trying a trial and error judgement as of late with other foods. Im finding I will need to cut all types of hamburger out of my diet also.
I still have more bad days then good, Today is a free day as i call them, once im full again then the bad days will start. Someone once said to me, hey dont eat much it may help, guess they dotn realize we need food to survive. My question to u one and all is, does it ever get better. This 20 or so times a day to the bathroom once it starts, the irritability , the gas, the pains have got to go.
I also recieve transfusions almost monthly for a secondary condition, passed down from my mother, I am headed back into calgary next monday the 18th to a now doctor whom we hope can find where all the bleeding comes from, jave had many scopes done here and nothing can be found, yet when we do hemocratic tests etc the blood is evident.
Any input is greatly appreciated.
I am just getting the chance to read your post dated the 7th, the day I ended up back in the hospital. I came home today (Sunday) and thank God they did not need to do surgery.again. Yes I swore I would not go back but I was just too dehydrated. After a few days on IV, the obstruction corrected itself and I was able to eat and have a normal bowel movement. They told me if it happens again, that decision might be different. And you are right. I cannot wait so many days or there may not be a decision to make. This episode made me think differently and will have a more positive attitude about my decision making next time. Especially after seeing my grandchildren's faces when they came to the hospital to visit me. I thank you sincerely for your concern. I will keep in touch. Take care.
Hi all. I do not have much to update you on. I go to a GI doctor today at the request of my general surgeon. I have to have a colonoscopy before my surgeon will schedule my surgery to remove the colostomy bag. Thursday will be eight weeks since my perforation was detected and emergency surgery was done. The doctor's told me they wanted my colon to heal for 8-12 weeks before they do the "take down."
I saw my OB last week for another post-op check, and he asked me if he could sit in on my next surgery. He wants to see how much scar tissue I have in my abdomen. If I have too much scar tissue, I will not be able to continue fertility treatments. Fearing that the scar tissue and adhesions would hinder growth of the uterus, and possibly cause more perforations and ruptures of other organs! Isn't that just another wonderful "complication" of everything that we go through?
I already think the scar tissue is pretty bad...I have horrible bladder spasms. The first three weeks after surgery the spasms were bad, I figured that was from the catheter I had for almost ten days. Then everything seemed to return to "normal" (do we have normals anymore?) for over three weeks, then the spasms returned with a vengeance about two weeks ago. Anyone else have these bladder issues?
I will let you all know what the new GI says this afternoon.
I hope every day brings a little more relief for everyone!
Hi. Welcome to all new people. Scroll up and you can read about my sigmoid resection 6 months ago. I just returned from 8 days back in Cleveland for a wedding and a family reunion. I ended up having so much pain again, where they did the resection, that I was taking pain meds ( hubby's for his back), I think I did a stupid thing. I take Citrucell, once daily, and bought some Metamucil there. Well, after 4 days, I was having weird bowel movements and the pain started, big time! I went and bought some Citrucell and started back on that. BM's back to "normal", but the pain is still there. I spoke with Pharmacist and found out that Metamucil has psyllium husks (sp?) in it but citrucell doesn't. I don't know if that is what started the pain but OMG it was bad. There were a few days that I was worried that hubby was going to have to take me to ER, which I did not want to do that, not when I live in Phoenix. So I just held on until we got home. Sad vacation, huh? Also, I suffer from Generalized Anxiety Disorder and have been a Clinical Depressive since the age of 9. I am 51. A lot of people were telling me that travel puts a lot of "stress on your body and throws your system off". This was my first trip since the surgery. Anyway, Thank God I took the day off, today, and have regular scheduled appointments with both my shrink and surgeon today. I can not believe the recovery time for this thing..... I am switching GI;s as mine thinks I am neurotic so I am not even going to call him. Thanks God the other 2 don't and are very caring and compassionate. Has anyone else experienced these issues when traveling? Any feedback/suggestions very welcome! The pain is where the surgery was done and also I feel very bloated. I am wondering if switching the fiber caused it, plus I know the first few days I was not eating the way I usually do. Everyone, take care and it is good to be home.
HI there Kim! So glad you are back home and no surgery! I prayed for you everyday! I know that its bad when you have to go and I pray that its the last time. I know how you feel I have been there 3 times and all of mine were surgery too! I just wish they could just find a way to cure all of this! Did you ever find where the obstruction was this time? I am your forever friend! Please do not give up posting here. We are the ones that get it and understand all of it from the doctors to the pain to the fear of obstructions!
Sue, glad you made it back! Oh my I am so sorry that you had such pain! I have learned when I travel to take everything with me that I normally do and never eat anything that is different than home. The air plane trip alone is hard on the body. I feel pain on my resection too. We both had the sigmoid one. I went to my dr after 8 weeks. No more pain meds. He told me there are nerves that could have been damaged that cause pain there or a hernia. I do not like this surgeon. I had a stitch that had came to the surface on my incision and they numbed it and took it out! It was a nylon one and really hurts there now! Anyway, tell me what your dr says about your pain and why you have it. I hate travel now. I have to go with my husband this thurs for 4 days out of town and I am dreading it. We used to love to go places and traveled a lot. It puts such stress on our marriage because he thinks I should do everything like we used to. Right now I am just in so much mental and physical pain that I don't seem to get any excitement out of things. If I can get a bm and get through the day I am just existing.
Well, hope I was not a downer:) Just reality bites some days.
Did you get any diet suggestions kim or sue. I need to learn from you both. Good luck Rx girl and all the new people. I love to hear from everyone!
Thank God you are still here Kim!
Hi. Glad to hear I am not the only one who has issues when traveling. I wonder why that is? What you said about the airplane trip? Yes, I learned a valuable lesson about fiber as well as eating. Acouple of nights after we got there, my bil had a cook out and as I am Italian, he bought Italian sausage. The real stuff...not like we have here...lol. Well, you all should have seen the autopsy I did to try to get all the fennel seeds out, but think I may have missed a few. Also, I am with you with the mental pain as well. I just got back from my shrink. He is switching my meds as he does not think they are working. Neither do I. It *****....I am finding out that it is hard enough to go through this surgery and the looooooong recovery( longer than he said, by the way) but to have mental issues as well. Well, that has made it tougher. Take care all....Let's all have a good day....
Hey, glad you are trying a new med! I hope it works soon!
When you travel on an airplane you do get more swelling. There is 30% more pressure on the body. When I worked as a nurse the dr. I worked for would not let anyone fly with abdominal surgery for at least 10 days. He was great (now deceased) about explaining a lot of things. I had not had surgery then, I wish he was around today:) I would bet that a fennel seed got stuck somewhere. Even if you do not have anything done with the small intestine or anywhere but your surgery site when the abdominal cavity is opened up it takes a while for all the swelling to go down. My surgeon says 4 months. So nice to see you on line again! Please encourage me to leave on a trip if not just for the mental change:)
Wow...I didn't know that about the pressure on the body but it makes sense. Also, you are probably right about the seed....guess I am a lousy autopsier.. My surgeon is ordering a CT ( I think for my peace of mind) then I asked for a referral to another GI as I am through with mine. It's hard, as I get attached to docs and people but I spoke with my friend who is a nurse and she could not believe the little comments he was making, etc. Anyway, I am starting a new med today and tapering down on the other. We will see what happens. I really like my surgeon...he is funny and compassionate. That is how my GI use to be, until I got sick. Anyway, surgeon couldn't feel any "inflammatory changes" but ordered the CT because of the pain I told him I was having. Kit, if you want to travel, do so. Everyone is different and I have this anxiety thing where I worry about everything. We are going to DC, next month for a few days, so I hope everything is straightened out by then. Take care all.
I went to the new GI doctor yesterday, and I got a little more than I bargained for. Not only do I have to have a colonoscopy (going through the stoma AND down yonder), I have to have an endoscopy also. I let him know that I have a nostril available if he wanted to "violate" me that way also! lol
I am really dreading the colon prep since I have the colostomy bag. That ought to be a fun evening. I won't be posting anything next Tuesday night! lol
You all have me a little scared. I had a part of my sigmoid taken out and was given a colostomy to allow the colon to heal. The re-connect should be anytime soon. (after I get the results of the colonoscopy, I can schedule the surgery.) But, I am afraid of the pain that you all are talking about. I know we all had our surgeries for different reasons and under different circumstances. I wonder if the 2-3 months they are allowing my colon to heal will make any difference. I gather from previous posts that I have read, that most of you had yours resected at the time they removed your damaged area.
I can't believe I go back to work this Friday. Short term disability is just that...short! I am only going back part time. I couldn't handle full time at this point! My surgeon said that I will be in the hospital for a week after the reconnect and out of work for at least four to six weeks. Depending on if the have to cut my abdomen open again. Good thing I have worked for the same company for 13 years!
As for the anxiety...I never had anxiety issues before all of this happened eight weeks ago. Now, with every sharp abdominal pain that I have I start to panic to the point that it is difficult to breathe and I can feel my heart pounding in my chest and head. Maybe once I get back into some sort of routine, the number of attacks will decrease.
My surgeon said that between 6-8 weeks after the first surgery, I can start introducing foods such as multi-grains, fruits and vegetables. HA.. After one small bowl of Honey Bunches of Oats cereal, I decided that I didn't really miss cereal anymore! LOL I spent the entire next day emptying out my colostomy bag. Maybe I will just eat cereal for my colon prep instead of drinking all of that wonderful stuff! LOL
I will keep you all updated. I see my surgeon again next Tuesday morning.
Hi everyone. Just to update you all, I have been overeating fruit and veg. lately and wow can I tell . I feel so bloated and breaking wind like it is going out of fashion. I think I will stop the fruit and veg. for a day or two and see if that helps. What a struggle. Sometimes I just think it would be best to stop eating all together! I just love fruit and find it such a sacrifice not to eat apples and pineapples etc. But I am going to try for a few days and see if that makes any difference. I can´t take fibre drinks as that makes it worse, anyone tried any new products ?
I know what it feels like to have that wind and bloat! I started to drink a liquid supplement called boost and then I ate some ice cream! Wrong! I bloated and had the most horrible gas! The worst part is you have it all day and have bms all day. Not large ones just enough to keep you by the bathroom! I think if you can go to more proteins for a while and cut down the fruits for a few days it will help. Our systems are all new to everything right now. The normal bacteria and flora that is in the bowels is not there. When I was 3 years out it was heaven about eating. I actually thought that I was going to never have this problem again. I was had open surgery so I got small bowel adhesions. You had key hole surgery so you probably won't get them. Rx girl we all react differently. You don't need to be scared. We are all here for you and understand. You need to remember you might not have one problem like I have! Take care! Poddle are you still having mini bms?
It's great to see, you have a sense of humor about this. I haven't laughed so hard in quite a while. Seriously though, what an ordeal you have to continue going through. Keep us informed on your progress. Take care.
I agree with all above posts. We are all different and our recovery is as well. I just posted on another thread from someone who is 4 weeks out and doing fantastic..... boy, wish that was me...lol...anyway, keep us posted. It is so great to have this site to talk and vent...
Today I haven´t had any fruit or veg. last night neither, and to tell you the truth I feell a lot better. I didn´t eat my usual oats for breakfast either, only 2 slices of white toast, that was a mistake..........I was soooo hungry a few hours later ! So I think you are right, I was eating too much fruit and veg. Anyway, I am going to continue like this for a few more days.Usually ( during fruit and veg. days) I have about 8 mini bms a day, but today only 3 . And, best of all, no wind !!!!!!!!!!!!!!!!!!!! Thanks for the advice. Do I understand correctly that 3 years after your first surgery you could eat normally ? What a shame to have to go back to square one.!
I'm new to this site and feel "lucky" compared to what you all are and have gone through.
In early June I had emergency colon resection surgery after some unexplained blood
clots "ate through" much of my lower bowels. After 2 weeks in the ICU I was released
and came home thinking after a few days I would be relatively back to a somewhat
normal life. My Bad!
Everything was ok (mainly some stomach cramping, diarrhea and lack of energy) but
understandable considering what my poor body had just gone through. My family and
I went to Florida in late July, which went surprisingly well but since we returned I've had
I do have some diarrhea, but nothing like most of you seem to be experiencing....it's
manageable with Immodium, and mainly in the a.m. My problem is abdominal pain
and vomitting. For the past two weeks I seem to be ok after eating breakfast, but
when I eat anything for lunch and dinner I have cramping and bloating with lots of gas several hours after and vomit everything I prev. ate and had to drink. My stomach
sounds like a volcano about to erupt! I haven't really tried to modify my diet much as it
seems like anything I eat affects me. I continually am losing weight (about 2lbs every
3-4 days). I have always loved to cook and this is making me afraid to eat anything!
I'm due to go to a GI doctor next week but was wondering if anyone else has any similar
No matter what our issues are post-op these situations really suck!!!!! I had no idea
it was going to be like this and I'm only 2 months post surgery, whereas so many of
you are still having issues far longer! So many days I sit in my car and cry looking
at everyone eating out and reallyl enjoying their Summer. I have a great support
system in my family, friends and especially my fantastic husband (who by the way
found this site for me!), but they have NO idea what it's like physically and emotionally.
Thanks so much for listening and I look forward to keeping in touch with you!
Hi. Welcome to the site. It is a wonderful way to talk and vent. I know what you mean about watching people eat. I just got back from a trip back home. I am Italian and went to my annual family reunion, plus a wedding. Talk about having to watch people eat...lol. Anyway, You are lucky to have supportive hubby and family. Mine are too. But you are right: they don't understand how this affects us. Take care...
welcome to the site! I had my surgery in June too. What part of the colon did you have resected? You can read some of my previous posts. Sue and Poddle Kimwilly Rx girls and the rest are great. I have a lot of nausea when I try to eat too early in the day. Sometimes I only get one meal down. Its usually at night when I can be near the bathroom. The cramps are the worst. I call them dry cramps! Like dry heaves. I get them about mid day and if I have to go somewhere I don't eat first. I know how it feels to watch others eat! I hate that! Did you eat something different while on vacation? If you vomit everyday I would call the doctor to ask their opinion.
I am going to to gone 4 days....nervous....I hope to report that I made it. This is my first trip away since the dreaded resection....Good luck to all.
Hope everyone is doing well. Sue, hope your tests come back good. Let us know.
I did ok on my trip. I had a lot of bloating and gas that took a few days to get over. Since I am back home still not quite right with the digestion. Oh, I wish travel was easier. The worst part was seeing all of the people eating when I could not. My husband is so understanding we stayed at a homewood suites so we could eat meals in. I am so tired of this problem. Anyway, back to fight another day...:)
Yes, it definately ***** watching people eat.... I am doing better, but still having some soreness. I hope the CT will show nothing abnormal. I know my doc said they can't see adhesions so not sure what he is looking for...maybe more diverticulum. Gosh, I hate to even think about that... not sure I could go through this again. It's frustrating as it will be 7 months, next week, since my resection and I thought I would be "over it" by now.... We go away, next month, again. We are going to Washington DC. I will definately remember not to switch my fiber, lol, that's for sure. Take care.
I have some news to update you on... I had my endoscopy and colonoscopy two days ago. I finally have an exact answer!! I have some diverticula in my ascending and sigmoid colon. That is I had my bowel perforation. The calcium "rocks" I had from the Tum's blew out one of the areas with the diverticula. So, I am hoping that my surgeon will be able to take out the diseased areas while he is reconnecting my colon. I will find out on Tuesday if it is possible. Oh yeah, I also have an erosion in my stomach. Possibly due to the Aleve I have been taking for the post-op abdominal discomfort. This is all one VICIOUS circle!!
The bowel prep with a colostomy bag wasn't as bad as I thought it would be. I stayed up all night because my surgeon warned me that the 'contents' would back up in my colon if I didn't empty the bag frequently enough! I still haven't caught up on my sleep from that night of deprivation!
The biggest shock I had was the morning of the two procedures. Once they brought me back to prepare me for the procedures, I broke down and had a HUGE anxiety/panic attack. The poor nurse must have thought I was a mental case! I then explained to her that I was just paranoid after everything that I had been through in the past nine weeks. Before I was done with my story, the poor nurse was practically in tears also. The nurse and the rest of the staff were very reassuring and compassionate. I think I got a little extra sedative too!! lol
Do you think part of my anxiety is the fact that my procedure could have been cancelled at any time because of the threat of the Tropical Storm that has been zig-zagging its way across Florida all week?? LOL I have too many other things to worry about than a storm. This hurricane season needs to realize that I am not in the mood this year! I am fortunate that we had our home built four years ago and everything is up to hurricane codes!!
I have two doctor appointments scheduled for next week. My OB and my surgeon. My OB asked ME if it was ok if he sat in on my re-connect surgery. I will be more at ease if he is there. He knows me very well and wants to help me through my next rough spot!
I will keep you all updated. I hope all is well for everyone. There hasn't been much activity on this forum this week. I will take that as a good sign.
Well, I am glad that you finally got an answer. Having suffered from anxiety, for years, I definately know how you feel. The first time I was supposed to have my surger ( Jan. 23 08). I found out that my surgeon's nurse had given me the wrong prep instructions. She gave me the one for rectal/hemorroid surgery so I had only fasted and done a few Fleet enemas...thought that was a breeze. When the doc came in, he asked me if I did the prep and I said, yes I did the enemas. He looked at me and said NO, fleet phospate.... Anyway, he probably saved my life and he said I wasn't clean. Consquently, they sent me home( I was already preopped and had had the sedative already) and rescheduled for the next day. I know he was pissed as I heard him talking in hall about his MA. What a horrible day...had to go back to jello, broth and the fleet which sure does do the job...lol... Anyway, I go back to see him, on Tuesday, for the results of my CT scan. I am hoping that there is nothing going on but I know I am still having residual pain. I hope it's not adhesions as he says the only way to know for sure is to re-open me. I have heard others on this site talking about having colonoscopies that " blow" open any narrowing so maybe that will be the next step...if there is a problem. I really think he ordered it for my piece of mind. I am 7 months out now and he had said 3-6 months, but I have also heard up to a year and even 2. Any one else longer out than me? Take care all.
Hi there Sue and Rx,
Hey I understand anxiety! I think you are both hero's in my book for all that you have been through! I know the panic and anxiety that this condition causes. What other thing in life would cause you to be in the hospital after doing something as simple as eating? Oh, Rx you have been through the mill. I think though that with all of the tests they have done and knowing where everything needs to be reconnected plus your ob being in on things that you will go through like a breeze! Sue, I will be thinking of you on Tues. I have the same resection area as you 4 inches rather than 7 like you and I am wondering if I need that blow open area too. I have such weird constipation issues too. Maybe we should just go together! I am looking to you as you are 7 months and I am only a little over 2 months!
Take care girl:)
Thanks for your words of encouragement. Doc says if all looks good he is either gonna do a colonoscopy or probably still, refer me to a GI ( I met him at the hospital, but at the time I was still satisfied with my GI). I am still having soreness and taking a couple of Motrin, during the day. Pain meds ( 1/3 percoset at night). I decided that event though I don't like taking them, I don't like the pain more...lol..
I hope this finds everyone doing well. I got news from both Doctors this week. My re-connect surgery is going to be September 8th. I am not sure of the time yet.
I have a special request for all of my forum buddies that believe in God.... Please say a little prayer for me that day! I should be in the hospital anywhere from 4 - 7 days if all goes as planned. They are going to try to reconnect me without having to open me up again. My muscles still aren't back to normal from the last surgery! lol
My OB is going to be at the surgery which gives me a big sigh of relief. He has such a calming effect on me. He has a soothing voice and a great bedside manner. He holds my hand until I am knocked out and is usually around shortly after I wake up. I couldn't ask for a better Doctor.
I finally worked up the courage to ask my OB a question that has been weighing on my mind for the past nine weeks. I wanted to know what the gender of the baby was. I found out that I would have had a Baby Girl. I know some people might find that a little morbid(and I apologize), but I needed to know for myself. So now when I picture my little angel, instead of wearing gender neutral colors, she is wearing pink!
I will probably be on here a little more in the next 12 days. I need everyone's support to have the strength and courage to face this next challenge. I appreciate everyone of you for all of the information and words of encouragement you have given me thus far. And maybe one day I will be able to pay it forward!
I am a believer and you will definately be in my prayers. Congrats on your little angel. I just had my first grandbaby, in June, a beautiful little girl named Angelina Marie. She has been a blessing through all of this. Also, I just noticed that we have the same name, but I spell mine Susanne. Good luck. Also, for all, a question. My surgeon appt. to get results of CT scan got rescheduled to Thursday. I am noticing a little soreness around the lower left of the incision ( belly button ) as it was hand assisted lapro. Scar is about 4 or 5 inches long. I am gonna have him check but wondering if that area will have showed up on the CT. I had an abdomen and pelvis. Any answers?
Wow, both of you are Sue, that is my fav sisters name! No wonder you are both here! I am a Christian also. I pray for all of us and you RX girl. Let us know the exact time when you know. Sue, sorry that you can't find out until tomorrow.I think everything will be covered with an abdominal ct and pelvis.
Sue you are about 7 months out, that is normal. I had a full incision 3 times now it takes about a year for all of the nerves to completely regenerate and sometimes you will pull a muscle that is just getting knitted together and it will ache. I rubbed my husbands back and the next day my whole left side hurt, esp. by the surgery area! I am better today. Maybe getting all of the tests and getting on and off the tables strained that area. Rx thinking of your little angel in pink.
Thanks so much. I guess I didn't realize that it can take that long for the nerves to regenerate. I wonder if that is why I sometimes get these weird tingling/itching/ or some other kind of weird feeling where the anastamosis is. I go this afternoon and have the films, too. I seem to be doing better today. I never thought about moving funny and pulling a muscle or something. Darn...I hate this surgery...lol. I swear I remember him ( surgeon) saying "3-6 months" but now I am hearing 1-2 years.... I will let you know what he says today.
Hi. I wanted tell you that my CT results all came back normal. There was a mix up, though, as I did not get to see him as he was in OR all day and I was the ONE patient they forgot to call to reschedule....anyway, his nurse reviewed the results with me but he wants me to come back, next week, to discuss "why I am still having pain". I think he just wants to reassure me before he sends me off to the new GI. The report said: Post op changes. They really did a very extensive one as it checked gallbladder, liver, spleen, ovaries, etc. The only things on it were what I already know: I have a somewhat fatty liver, 3 small hemangiomas on my liver and a calcified granuloma in my chest. ( I had Valley fever 2 years ago) Most of you have probably never heard of as it is common to the Southwest. It is a fungal spore that gets into your body and you feel like hell....flu like symptoms and very tired... Anyway, I go back next week and I also picked up the films for him to look at....Take care and hope all have a great Labor Day weekend.
So glad your results are normal! I hope you get to see him soon. I think that they (DR and nurses ) way under estimate the level of pain this surgery can give a person! It moves a lot of body parts around and moves the intestinal tract even if you don't have open surgery you still have all of the internal work done the same. Plus, you digestion is way out of the normal range for a while. I have heard of Valley fever. Do you ever have a relapse of it? I hope you have fun this weekend doing something:)
I feel better this weekend. You are right, unless they have had this surgery, they don't understand the pain. My level of pain is much less but I thought it would be gone by now...lol. I am 7 months out and read so many posts from people who are under 3 months and seem to be feeling great. It got me concerned. As for the VF. No, I have not had a relapse, that I know of. I say that because a lot of people out here get it and never know they had it, until they get a chest x ray and the doc finds the nodule. It can present as mild to severe flu type symptoms. In my case, I got it when there was a bad type A flu going around. Everyone I know, that got it, got better but me. I went in and that is how they found it. I say that because the pulmonologist diagnosed off the CT films. They gave me 3 VF tests, to detect the antibodies, and all came up negative. He fluffed that off and said that 15 percent of pop. never develops, so that means I can get it again. Anyway, I am having a great weekend. Have spent lots of time with my beautiful new grand baby and am loving being a grandma....Take care
Well, the surgery date is fast approaching! Yesterday I went to the hospital for the pre-op testing. I thought I was gonna hyperventilate once I walked through the door! The smell of the hospital brought back ALL of the horrible memories from 11 weeks ago. Because of all the issues I had in June, in the ICU, I had to have an EKG and 2 chest x-rays, in addition to the 2 vials of blood for the lab.
I can't believe that I am voluntarily going back to the hospital for a surgery to reverse the colostomy. I started thinking if the colostomy bag is really that bad! lol I know this is the first step to "regaining" the life that I had before, but it's hard to take the blind leap of faith that this surgery requires.
I did some research on my surgeon. At least he did his surgical fellowship at Cedars Sinai in New York. And, he is only two years older than I am. It's hard to believe that I am letting someone operate on me that was in high school when I was. I hope he is more mature than the guys I went to school with! lol
The reality of it all hit me today when I went to pick up my disability paperwork from my surgeon's office. So, I went to the hair salon after I picked up my papers and got some hi-lights & low-lights, a cut and a style. Next up is the pedicure because I won't be able to comfortably reach my feet after Monday! lol I might not have to pay anything for this surgery because I already reached my out of pocket maximum for the year, but the preparation for this surgery is costing me a ton! Looking better is part of feeling better! lol
My surgeon requested a 7:15 AM surgery time for Monday, September 8th. All prayers and well-wishes for myself and my surgical team would be greatly appreciated. I will keep checking back here before I go to the hospital!
Hope this finds everyone doing well or at least feeling well! lol
Well, good luck on the reversal. I never had a "bag" but remember that that was one of my worst fears. Good to know it is something you can live with, but I know that you will be glad when it is gone. How long will you be off work? Also, I think that was such a good idea to pamper yourself before you go in.....Keep us posted. Also, I saw my surgeon for my last follow up visit, on Tuesday. He looked at films and read reports and pronounced me "well"..lol. Anyway, I have a referral for a new GI. As far the small amount of pain I still have, he thinks that I am just one of those people who take 1 to 2 years to completely get over it. He is recommending that the new GI do a colonoscopy in November.
Prayer are with you! I know you will do so much better with the reversal than what you went through. I know its scary to go through it again and we all understand here how it is! I agree with Sue that you need to pamper yourself now! You have been through a lot! Sue, I think you and I have the same area that hurts! I know there are a lot of nerves and muscles in that area that are affected and it takes a while for the twinges to go away. I hope you get a new GI. Well, Rx girl write when you can, we all understand and are here for you.
Thank you for all of the well wishes, they are greatly appreciated. I will be out of work for another eight weeks. I was only back to work for 9 days before the reconnect was scheduled! hehehe!! They made it nine weeks without me the first time, they can rally for another 8! lol Except this time one of my coworkers will be out at the same time. He had heart surgery today (he is doing well) and will be out for 6-8 weeks himself!
Today was my GI's appt, the pathology from the polyp and the stomach erosion were all benign. yeah! I just have to take Prilosec for the next three months and then I shouldn't have acid reflux anymore. Then he told me he would see me when I am 50 for my next colonoscopy. I did remind him that I am only 37 now, (maybe I look a little rougher and older from everything I have been through??) lol He said I don't need to come back unless I have GI issues or turn 50! Good, that's one less bill I will have to pay! lol
I will check in tomorrow and give you the anxiety level update. I know it will be worse tomorrow because it is my last day at work!
Take care all- you are all in my prayers and well-wishes also!
Good luck and keep us posted. 50 is usually when people start having colonoscopies, but I started at 41or 2 as my older sister got colon cancer, so I have had 2 so far, as screenings. I know my surgeon wants me to have another one as I approach a year out from my surgery.Kit, I helps me so much when you mention that you have the same type of pain that I have. I go see my new GI, in October. ..Wow, it is hard to believe it has been 7 months. It was a year ago, almost to the day, that this whole diverticulitis nightmare started. I remember I was supposed to go to Washington, DC and other board members from an organization I belong to and my doc would not release, due to danger of perforation and being far from home. Well, the good news is that they voted that my hubby and I will be going this year as we missed out last year. We are going to participate in the National Day of Rememberance for Murder Victims, which will be held on Sept. 25th at the National Press Club, near the Capitol. I have never posted this before, but I am the chapter co-leader of our state chapter of Parents Of Murdered Children. A national org. that assists victims of homicide. Yes, in addition to everything else, my 19 year old son was shot and killled, by gang members, in Dec. 1997....Take care all.... and Suzanne, you will be in my prayers...
Ok- I just realized that the three of us are the only ones that have posted to this forum since August 13th! lol
My anxiety level has increased ten-fold this afternoon! The hospital was supposed to call me by 5:00 to give me my surgery time and the time I need to be there. I know that my surgeon requested a 7:15 am surgery time. I called the phone number that was provided to me and was told they don't have a time for me. That I need to call the hospital Monday morning and they would tell me what time I need to be there!! This poses a HUGE problem for many reasons. #1 My OB was going to observe the surgery, but he has office hours that start at 9:00, so now he won't be able to attend. I will end up with one of his partners, which scares the daylights out of me. One of his partners almost caused me to die when all of this stuff happened in June. #2 I live over an hour away from the hospital, so it will take me awhile to get there. #3 I can't have anything to eat OR drink after midnight. #4 Just sitting around not knowing how and when things are going to happen is driving me insane, so, thank goodness for xanax! and #5 My OB can't be there! I know are already cited that, but its the most important one, so I figured I needed to repeat it! lol
I paged my surgeon through his answering service and he called me back within 10 minutes. He called the hospital before he called me. The little snot at the hospital told him that she is aware that he REQUESTED at 7:15 start time, and his request has been denied! I about fell over when my surgeon told me that one! He said he would try to pull some strings at the hospital tomorrow morning and see if he can get a specific time for me. How does the saying go? If it weren't for bad luck, I would have no luck at all." lol
I know that I have more than luck on my side, I have God, my family and all of my forum friends! You girls have helped me hang on to what little sanity I have left. I am truly greatful for all of the laughs, tears and fears that we have all shared.
Oh yeah, and now there is something else to worry about...Hurricane Ike is supposed to threaten my area early-mid week next week. My home should be far enough inland, but you can see the Gulf of Mexico from the west side of the hospital I will be at! It is a lot easier dealing with the threat of all these tropical storms when you are feeling good and are in the comfort of your own home. Now, I won't feel good and I will be closer to harm's way! lol
My in-laws live in/near Baton Rouge, LA. They have been without power since Monday afternoon because of Hurricane Gustav!
I will definitely be in touch over this weekend. I will be trying to relieve some stress by cleaning the house from top to bottom AGAIN! lol
Sue, I am so honored that you shared with us the loss of your son and the way he was killed. I am saying a prayer for you and your family. How wonderful that you are able to reach out to other familys and victims of homicide. What a way to honor his life, I am humbled. It helps me also when we talk about our pain being in nearly the same place.
Rx girl, what a mess you had to go through this afternoon! Its hard enough to know what is going to happen when you are given a scheduled time and then everything was changed at the last minute. I hope that you just take a xanax and try to eat something nice tomorrow and put it out of your mind until you have an answer. I would be the dr. will get it worked out. We are all praying here for you. I know that Sue and I post all of the time, but I think others read a lot of the posts and get strength from it too. You are a dear girl! Please post again or e-mail direct if you need us!
Sue, I am saddened that you lost your son to such a senseless act. I'm sure others will agree with me saying that our thoughts and prayers will be behind you as you participate in the conference Sept 25th.
RxGirl, why is it that sometimes one is being tested in so many ways??? I pray that all of this gets resolved so that you can put this behind you and move forward. And when it is resolved, I will continue to keep you in thoughts and prayers as you recover from this.
Please do not lose hope. You truly are a guiding light for each and every one of us since we could one day be in your shoes and may need to turn to you one day.
Love and prayers,
Thanks all for your kind words. I am a born again Christian, after my son died. That has helped through the difficult times, as well as POMC. I don't know why some of us are tested so much. I also lost my parents when I was in my early to mid 20s and many other losses, as well. My last grandparent died when I was 15. I know this is not a religious site, but here are two verses that have sustained me: Romans 8:28 and Phillipians 4: 6-7. This surgery was something I was not expecting as I have been in good health pretty much my whole life. RXgirl....I know what you mean about the anxiety about the time to go to the hospital. I think I told all about how my first surgery date was cancelled, after I was all prepped and ready to go due to the wrong prep instructions. That was a depressing day....going home and having to fast, again, and wait until the next day for the real deal. My surgeon was mad at his MA as she was the one who gave me the wrong instructions. He did pull strings or something, to get me in the next day but I didn't go until 12:30 and surgery did not start until about 4. I am very impatient and I think if I were you, I would show up that day and wait..... and wait...and make sure they knew I was waiting...lol....Especially as you live so far from the hospital. I am also sorry your OB can not be there. I will pray for a miracle that he will be able to leave his clinic to be there. Maybe no one will go into labor that day....lol....Anyway, I am glad that we are all still posting. Like with POMC, when we don't hear from people, i.e. meetings, events, calls, we try to take that as a positive sign that we have done our job....help them through the crisis and give them the tools to cope on their own.... I think this site is the same. I remember 3 years ago, when I had VF. I was posting on that site daily. Little by little, as I got better, I stopped.
Not too much to post today. I did not hear from the hospital or my surgeon. So, I guess I am supposed to call the hospital Monday morning for my surgery time. Maybe this is a mixed blessing- once they call me and tell me its time to go, I won't have too much time to panic about it! lol
Sue- I am terribly sorry about the loss of your son. I was too wrapped up in my own woes yesterday to acknowledge your loss. And for that I feel awful! There is nothing that anyone can say to truly make it better for you.
So, let me fill you ladies on what I have done to pamper myself today! lol The pedicure is complete! And I went SHOPPING. I can't go shopping tomorrow because I have to stay close to home due to the pre-op bowel prep. I went to Target, JCPenney's, Sam's Club and Publix (local grocery store). I got some comfy new pajamas, some new slippers/flip-flops (to show off the pedicure), a new canvas tote bag to bring "stuff" to the hospital. I also got some magazines and puzzle books to keep me occupied after surgery (or for the wait before! lol).
I will check in with all of you late tonight or sometime tomorrow. Heck, the rate this is going, I may even be able to post Monday morning before I go to the hospital!
I might even bring a lap top to the hospital so I can let you all know how I am doing! lol
Thanks for everything and best wishes for health for all of you!
You have so much on your mind right now, so don't even worry about me. I remember how I felt right before my surgery, both the "dress rehearsal" (lol) and the real deal. I am hoping the they get you an early time as the worry, combined with the prep and fasting was awful for me! I love how you pampered yourself. I have never had a pedicure and I really need one. I wish I had a lap top as I would have loved to have had one in the hospital. I remember there was so much happening outside my room but I had closed doors, so would keep it open unless I had visitors or something. I did have a book and my bible. Course with all the drugs I was in la la land alot. Take care and ou are in my prayers.
I need a pedicure too:) Still can't sit in that darn chair they put you in though. I have trouble sitting in one position for a while. Don't worry about any of us on the boards, just remember we are praying for you and have been there, prep day and the whole deal! After you get to the hospital and Sue is right the IV meds going its no problem if you have to wait all day:) Take care praying for you too. Sue, you are a wonderful person to know, I respect you beyond words and pray for you too!
Thanks so much for kind words. I am praying for you both, especially you, today, RX. I see know posts so am hoping that is a good sign that you were able to yet in today for the surgery. Post when you can....God bless you both.
Let us know when you can post how the surgery went. I thought about you all day yesterday and I know that you are resting fine today:) Its all over and you are on the road to recovery.
Love to you Sue...Nancy
So glad to see you Kimwilly:) I missed you! Sue and I are holding down the fort:) I am thinking of Rx girl, I hope she gets home soon. I know you both remember the surgery week! Prayers to all!
Thank you all for the kind words, thoughts and prayers. I think I used/needed everyone of them! Today is my first day home from the hospital. I had so many high expectations for this surgery...When they said I would be in the hospital for 4-7 days, I took the optimistic road and expected four! Shoulda known I would use all seven! LOL The biggest expectation from this surgery was met, I think! I am pretty sure that all is reconnected down there, but I have not had a BM to prove it yet! lol The surgery took a little over 3 & 1/2 hours. (I was told to expect a little over 2.) If the job is done correctly, I have no complaints at all about the duration! They were able to do the reconnect using the scope, but there was more to my surgery since they had to do the colostomy take-down. My abdomen is all bruised and sore, (to be expected). I was a speed demon on the 7th floor of the hospital. I was always walking to make time go by faster and to speed up my recovery! I will elaborate more in the days to come, I need to go take a relaxing HOT shower and put on my comfy pj's.
Again, thank you for all of your well wishes and prayers. I will do a complete post of the event! With hilarious commentary to follow also! lol
So glad they could do it with a scope! I can't wait to hear your story! You are so special to all of us and we have been praying for your safe return home! Let us know when you can post another bit of mail.
Prayers have been answered:)
I am so glad you are back. We were praying for you the whole time. I had to laugh as I was constantly walking up and down and around all the time. First with my pole and catheter and then sans catheter. They did tell me that it helps to get stuff moving down there. I know you are glad to be done with the bag...Take care of your self and let us know how you are doing...
Hi everyone, checking in to say hi and to send my prayers along to you all. Just a re-cap, I had surgery May 28th, where they removed the large and a protion of my small colon. Had an infection that you all helped me live though..... (thanks again). Now.... I am just wondering when these pains are going to end. I think my issues are muscular, but man this hurts bad sometimes. Basically by the end of the day......yikes. Lifting even a gallon of milk is tooo much. Now I have a cough, and when I sneeze, it feels like something is ripping inside. I finally bought an abdominal band to "hold" myself together, because I'm always holding my gut when I'm walking around, because it hurts. I am not on any medication for the pain and although everyone says I should go back to the doc, I realy don't think there is anything else she can do for me. Some days are better than others. Being able to eat and pooh without issues has been sooo wonderful, that I thought I could just deal with this "discomfort". BUT now..... I am just tired of it!! I am SOOOO over living with pain EVERY day..... I went back to work a few weeks ago, but have not put in a full week yet. So that's not good. They gave me a lighter computer, so that is helpful, but my job requires me to travel and I am really not capable of doing that yet... I'm frustrated and tired. I have changed my office chair twice and still have pain..... If I roll over at night, the pain wakes me up, so I have restless nights. I know that the hubby is sick of me being sick, so I don't really talk to him about it. Well....since I am now crying...I am going to sign off......maybe tomorrow will be a better day...... or maybe my prayers will be answered and there will be no tomorrow for me.....
I feel so bad for you having to live with that pain. Back in July, you seemed so much better after you were admitted and they took care of an abcess (abscess). Have you been back to the doctor since July? I wish I could offer advice other than do not lift or move anything heavy.
I once had the same thoughts you ended your post with. I spent more days crying than not and was so mad about the job I lost (with a physician, no less!!) because of the recovery time. But you need to remember - many people need you.
Please call the doctor and keep pushing for an answer. I have had two times in my life, I was misdiagnosed. So you have to keep pushing until they give you an explanation for that pain.
I will keep you in my prayers. Keep us posted.
Hi there. Glad to see you back but am sorry that you are having pain again. I agree with Kim. I would keep pushing the doc to see what is going on. I "fired" my old GI ( lol,,he doesn't know it yet but oh well). One of the many things I have learned through this whole experience is that YOU have to be your best advocate in your health. I use to be one of those people who put docs up on pedestals and thought their word was gospel. Believe me, no more...I ask tons of questions. I am also so blessed to have found this site as I have met you all which has also truly helped me through this. God bless Sue
i'm new to this forum and have only read a few stories as this is a lot for me to take in at one time.
i had my large intestines and rectum removed 12 years ago due to ulcerative colitis and proctitis. i read on one post that someone goes to the bathroom 20 times a day. i say finally someone who feels my pain. i like to estimate my average bathroom usage as 15 times a day. thank god they are very short trips as w/ no colon and rectum things tend to come out easily. people always are astonished when i say 15 x's a day but this is something i have become accustomed to. this is my "norm". maybe the fact that i had this done at 14 is the reason why i've adapted so well. now don't get me wrong it does put a damper on my life sometimes. i live close to new orleans, la and Mardi Gras is such a fun time, but i won't attend parades if there isn't a real bathroom around. i'm not talking "port-o-potties". i make sure i know where all restrooms are, can't be afraid to go at public places w/ a condition like this. i still have accidents because of the fact that i can't hold it. of course they are less frequent now as time has gone by but i like to wear a thin pad daily just for safety. i work, and my co-workers are aware of my issues. sometimes they crack jokes like "lets guess how many times brynn will go to the bathroom for lunch" but it's all in fun and it makes light of the situation which i like! i have my days where i get tired of getting up to go or i just want a nights sleep but then i think back to when i was sick and i was going 30-40 x a day w/ bloody stool and vomiting and then i realize...i'll take 15 x a day any day!
i just want everyone to know that in time things get better, we learn to adapt and adjust. your life may not be what it used to be but it's your life...you have to take charge and start living your best life now! things always get better in time.
Welcome to this site. Twelve years and you are still having the bathroom issues!! You are way too young to live this kind of situation. I believe it was me who said I am in the bathroom 20 plus times a day and now almost a year later, am still living this scene. Sometimes during the night, I am up every 15 minutes. I am working a new job now and happy to be at a physicians clinic, although nobody has been aware of my issues.
I am very impressed at your positive attitude and feel each and every day I am taking more control of the situation and becoming more positive. You are right, in time you learn to adjust.
I am grateful to have this site for support and advice. I wish we could all meet in person. Maybe one of us could start a support group in our own area and then we would really find out how many people are affected by this.
Take care, Kim
Hi everyone! I am sorry that I haven't been posting more regularly; but I am experiencing more pain than I thought I would. Even though they were able to reconnect my colon by using the scope; they still had to make a 3-4 inch incision to remove the colostomy. Most of the pain that I am feeling is from the larger incision. Either way, I guess this is better than the 9 inch incision I had in June!
My Mom has been staying with us since Monday so my husband can go to work and not worry about me! What do mothers and daughters do most...shopping! Guess what I attempted yesterday! lol We only went to Super Walmart and Sam's Club, but it was nice to be out of the house. So, todays projects are to make homemade italian meatballs and chicken cutlets. I bought six pounds of ground sirloin and six pounds of chicken tenderloin. It ought to keep us busy and it will save me from having to cook a lot in the next couple of weeks. Plus, nothing tastes better than Mom's cooking when you don't feel very well!
I still don't think I have had a "real" bm yet. But, at least things are moving! I still keep patting my left side to "check" on the colostomy bag that is no longer there! I am pleasantly surprised everytime I check! Just like everything else, its just a matter of retraining yourself! I just didn't grasp all of that until now. I have to "potty-train" myself again. I am using muscles and areas of my intestinal tract that have not been used in more than three months. Now, I have to relearn all of the signs and symptoms. I still can't distinguish between post-op pain and gas! I am constantly "running" (as fast as a post-op person can) to the bathroom to make sure I don't have any accidents.
I better get going for now. It's great "chatting" with all of you. You are all in my prayers!
Bathroom issues...ah yes. But it's really not that bad. i mean i have my moments of insanity but for the most part its okay. i've learned most people don't realize i go that much and when i do go they don't realize i'm "pooping' because i'm done so quickly. but i do know that the less i eat the more i go. weird huh? if i don't eat anything for a few hours my stomach starts to cramp and i have to run back and forth to the restroom. but all that comes out seems to be more of acid. now when i eat i will go once or twice right after and then i'm good for a few hours. i've learned i tend to go more in the morning because i've been w/out food for hours, so i eat breakfast at home that way i'm in a comfortable enviroment. it's just a matter of learning your body. you will learn over the years what causes most discomfort and causes more frequent potty breaks. and i usually say the hell w/ it...i'm eating what i want. i live in the south, we like our food spicy! i do pay for it for a day but its worth it for me...ha ha. here is my one suggestion to people who are like me who frequent the restroom...buy "aquaphor", you can find it near your baby products at your nearest store. this is something you can use to wipe on your bottom when you feel irritated and it is definitely a life saver! i swear by it...i even put it on my chapped lips...ha ha.
rxgirl-i remember when i had my "bag" removed. it felt so weird. i swear i could feel my food stopping in that section and then moving along the way. i was always afraid it would leak out somehow...ha ha. i remember crying when i woke up from surgery cause i wanted my bag back. i had gotten used to it (even though i hated it). i will tell you that the first 6 months - 1 year are the roughest. learning how to adjust and getting used to everything. i still wear a thin pad just to ease my mind. honestly i dont' feel right w/out one on anymore. if i do have accidents now they are usually at night. i guess my body is just so relaxed it just kinda happens... i have those lovely scars from my surgeries and now they are so light. the only problem i had was my big incision got infected towards the bottom half of the cut and its wide, and of course the stoma scar is just bulky. but i'm used to. but i will probably be going back for another surgery soon, this time to remove my ovary and the lovely dermoid cyst attached to it so there goes my light scar. from what i understand they will have to use my same incision...hey maybe they can take out some of the scar tissue i have where my old cut got infected....lol
Hi bryn. Welcome to the site. It has been a blessing for me. I have met wonderful people and learned so much that our docs don't tell us. RX, I almost had to laugh when you said you miss your bag. As my surgery was elective and he waited until the inflammation was gone, I did not have a bag but was freaked out I would anyway. I think Bryn hit it right, tho, when she said that your body has to re-train those muscles. Take care all.
Hi everyone! I did not check posts for a day and look at everyone! New people and old friends:) Bad luck, I had a lot of muscular pain with my surgeries, but I agree with KIm and Sue that you should at least call the dr and let them know what is going on. It could be regeneration of all of the nerves and muscles. You did have an infection and as things heal so do the nerves.Rx, when I had my second surgery this year, my first one was for adhesion removal the second the sigmoid resection I had a terrible time at first with the gas or bm issue. I did not know if I was even feeling the correct things. I did get better. Its still not 100% but a lot better. With your colon cleaned out and opened up sometimes you don't have good bm's for a while. brynrene, I was 3 years out and my scar was so nice and light and this year two scars.Yes, they used the same area, its just looks terrible to me, but i am still alive:) Bad luck Gut, I have been the same place you are, some days I just think its easier to not be here than the hell we live in. Just try to remember that we all know the pain and know the frustration and the feeling that we are being held back. We love you and pray for you. Please take care. We would really miss you if something happened. Call your dr.
Thank you soooo much...for your support and words of encouragement. Today I finally feel a little better....physically and mentally..... It's like a rollercoaster ride. Trying to figure out what works, what to eat, not to eat....etc. So...today you have made me grateful.... each of you.... as you have helped me recognize how fortunate that I still have my job.....I can pooh......didn't need to go through what you did because you had to have a bag and then reconnect.....and that I only pooh about 3-5 times a day! (15 to 20 is insane)!! Actually last night I had to take a laxative..... still no results but lots of gurgling.....with my luck, it will hit me during my daughters soccer game......and I'll have to use the porta-pot. But that's ok.... I can deal with that today. But again....Thank you....thank you for sharing and caring. I'm overwhelming grateful because of how desperate I felt the other day...and the terrible thoughts that I had (really really bad things) I guess it's true what they say...about it being the darkest before the dawn... I need to try and remember as bad as it gets..there are others suffering more than I and that overall the further post-op...the better it'll get. If I only I could reach out and hug you all back, because that is what you gave me.....
You are so welcome. I am glad you are feeling better today. I know about the good and bad days. I am doing better today but had some bad days a few days ago...need to watch diet a little more. Do you like prune juice? I don't, lol, but will drink a little when I feel the need. Plus, I take a fiber drink in the morning and try to eat a lot of fiber Right now, I have been eating a lot of baked beans...They are very high in fiber. Also, I feel the same about this site. It has helped me more than the surgeon and my so called GI, who thought I was neurotic and should just "feel the pain". Good news is that I have fired him and am going to see a new one, next month. Surgeon says I should have a colonoscopy, soon, as it will be a year in January. Take care all.
Hi all. I wanted to give you all an update and make a new request for well wishes and prayers!! I was rushed back to the hospital on Thursday, September 25th. I have been here ever since, and I don't know if I will be leaving here anytime soon.
My post-op visit with my surgeon on Tuesday went well. Wednesday was fine too. Thursday morning I woke up not feeling quite right. I had abdominal pain that wasn't relieved by anything. I took my temperature at 11:30 in the morning and it was only 99.88 degrees. My husband needed to go to work, so I called my Mom to come sit with me. Joel stayed home until my Mom got there around 1:30 pm. Shortly after that, the pain was more intense and I had the chills. I took my temperature at 2:30 and it had risen to 102.97. I called my surgeon's office and was told to go directly to the ER and he will meet me there.
My surgeon was already doing another procedure on someone by the time I could get there. I ended up sitting in the ER lobby for 3 & 1/2 hours with tears streaming down my face. My surgeon was mad that the ER staff did not even triage me! My heart rate was in the 140's. To make a long story a little shorter, my Surgeon had me direct-admitted instead of going through the ER.
Of course by the time I was brought up to the floor, it was shift change. I went more than 4 hours without any pain medications. My surgeon ordered a STAT ct-scan of my abdomen after I drank 2 cups of gross stuff! I wasn't taken for the scan until almost 10:00pm. At midnight, my surgeon came in and told me that I have a leak where I was reconnected! I am waiting for my second ct-scan on monday to try to figure out what to do next! Best case scenario....all these days on iv antibiotics and tpn through a picc line might give the intestines time to heal themselves or they might stick a needle in there to drain a possible abcess (abscess), or I might have to undergo another surgery to let my intestines heal better; meaning that I would have to have another temporary colostomy!!!!
I can't believe all of the stuff that has been happening!
I was fortunate that my Mom was able to bring me her laptop today, but I don't know how often I will have this luxury!
I just needed to let you all know how much I needwil your prayers and warm wishes during this difficult time. I hope everyone else is doing well and the fact that there haven't been many postings means that you all are out enjoying life!
I will go into more detail about the hospital admission process later, but, I need to lay back down now!
PLEASE pray for me and my family! I know it helped get me through the surgery, now maybe it will help me get home safe and sound without another colostomy bag!
Oh I am so sorry and will be praying for you. How awful that the hospital made you sit that long....Praise God you didn't rupture or something worse. I hope you don't have to have another bag but if that is what it takes. I still can't get over the hospital. Where are you located? And do you have any recourse.....God bless and again, know that you are in my prayers. Update when you can.
I will keep you in thoughts and prayers for your intestines to heal on their own without having further surgery. It is simply ridiculous that a hospital would treat someone that way. We rely and trust that they give us the best of care. Keep us updated.
I am so sorry that you are in this mess, I am praying for you. I think you have been treated very poorly, there is NO reason for you to have suffered like that! Please keep us posted when you can on your progress. I am just so shocked on how long you had to suffer without pain relief. Take care, We love you.
Hi everyone! I got home from the hospital on Saturday (10/11), I thought I posted a message on Sunday. But, I guess I forgot to submit it! lol The hospital stay was a horrible experience. Luckily, that is not the hospital I usually go to. My surgeon just happened to be at that hospital the day I went to the ER. I blame the inept front desk staff in the ER for all of the time and suffering I spent waiting! If there is a next time, you can bet your bottom dollar that I will be going to my usual hospital!
It is so awesome that all of you posted notes for me on Sept 30th. That is the day that I unfortunately had to have another emergency surgery. They started around 10:00pm and it lasted for another 3 & 1/2 hours. They had to do another laparotomy (I'm cut from above my belly button to below my pubic bone) and I do have the colostomy bag back. I spent almost 5 days in the ICU, I had to have a couple of blood transfusions, I had an NG tube for DAYS, and was fed by TPN for 15 of the 17 days I was there. My surgeon allowed me to come home with my JP drains still in. He ordered a home health nurse for me to empty my drains on a daily basis, not to mention having to do a wet to dry dressing in part on my incision because it is not healing properly.
I don't want to bore you all with all the details now. But, please, keep praying for me and my family to get through this difficult time.
I wish you all the best and look forward to reading your posts!
I am so sorry for all you have been through. I know we have all been praying about you and hoping that you were doing alright. Why did you have to have the emergency surgery? Was it from a leak? I know that was one of my biggest fears. I am also so glad that you have a home health nurse. I had one, weekly, when I had my PICC line, before the surgery, and she was a doll. Even called me at the hospital after my surgery. Please keep us all posted.
Thank you for all of your well wishes and prayers! I was admitted to the hospital with a fever of 102.97, the doctor got that under control with antibiotics for about five days. Then on day six, the pain intensified and my temperature shot back up. He said that I maxed out on the antibiotics and that it wasn't working against my infection anymore. So, he decided to go back in. It was from a leak at my reconnect site. Oh yeah, less than 2% of the people end up with a leak. Shoulda known it would be me! lol They did not let me come home with my PICC line. I just have the two JP drains and part of the incision that won't heal correctly. The doctor debrided it in office on Tuesday and now the nurse has to come daily to pack that part of the incision with wet gauze. I go back to the surgeon again on Tuesday, I think it will be a weekly ritual until things stabilize for me.
I hope everything is going well for you and the rest of our forum buddies!
Thanks again for the prayers and well-wishes.
I just wanted to keep you all informed. Things are not going very well for me. I go back to the surgeon again tomorrow, he wants to discuss an outpatient procedure to aspirate the fluid collecting in my abdomen and he wants to have a THIRD JP drain added, this time on the same side as my colostomy. I do NOT want to go through another procedure. I just want him to get me back to the state I was in before I had this STUPID A** resection surgery. At least before the reconnect, I was somewhat healthy. Now I am at risk of losing my job!! I have been out of work 116 days, and they will only hold my job for 120!! I am terrified that my whole world is going to crash down around me, and I won't have anyone here to help me pick up the pieces. Oh yeah, just another thing for me to have to contend with...I have been experiencing an elevated heart rate since all of this started. After I see the surgeon tomorrow, I have to go see the cardiologist. Does it ever end?? Some words of encouragement are greatly needed at this time, please!
I am so sorry that you are going through this...still. I wonder if anxiety is playing into the heart beat palpitations? I know that I suffer from anxiety and believe me, you have a lot to be anxious about. YOu are in my daily thoughts and prayers. KitnKate and I are always wondering how you are doing. I PRAY that if you have to have this procedure this will be the absolute last. The fluid that is leaking, is that from the anasmatosis? As for your job, and I know how you feel, as money is so tight right now. However, I am wondering if your job has any short term disability benefit or any other way that you could be on an extended leave. I sure hope you don't want to see that happen as that will only add to your anxiety and all that you are going through. Do you still have the home health nurse? If all else fails, I wonder if you would qualify to apply for any type of assistance, such as SS disability to help get through this? I am sorry. I do not feel that I am being much of a comfort but am trying to come up with plan b's. God bless and keep you Susanne
I went to the surgeon on Tuesday, I DO have to have the procedure on Monday. It is supposed to be done as an outpatient procedure. I am packing a bag anyway, I know how my luck has been! I went to see the cardiologist after I saw the surgeon. He thinks the elevated heart rate is my bodies reaction to all of the infections and surgeries that I have had, and that once I recover from those, my heart rate should return to normal. But, until then I am on blood pressure medication! The cardiologist also ran some tests, I had to wear the Holter Monitor for 24 hours, and I went for an echocardiogram. I got the results today. I have a soft, mild murmur and a leak in my mitral valve. Both things my cardiologist told me not to worry about. He said that most people over 40 (I am only 37) have a mitral valve leak! And the murmur is VERY mild. I have a follow up appointment with him on the 11th to go over everything. As for my job, I have been out on short term disability and they only have to hold my position until day 120, which is tomorrow. I guess I will find out in about four weeks or so if I still have a job making the same amount of money! My return to work date on my FMLA/LOA paperwork is 11/24/08. I guess I won't know anything for sure until that day! I am hoping that once I have this procedure on Monday that everything will fall into place. I am starting to feel a little better physically, but emotionally I am still a bit of a wreck! Thank goodness for Xanax! lol
Thank you all for your thoughts and prayers. You all are in my thoughts often! I will keep you posted on the goings on here!
It's really good to be able to learn that there are others out there that are sharing their experiences with our intestinal issues.
I have had two colon resections, one bowel obstruction and finally a total colon removal (minus the rectum) surgeries. My colon was removed at the end of July this year and also parts of my small intestine which was obstructed. I thought it would be like the other surgeries and I would be home in 5-7 days. I ended up getting some type of infection and spent 27 days in the hospital. I lost 25 lbs in the hospital and became very very weak. I could barely set up and walk to the restroom. After which I had to lay down for about an hour to regain a little strength back. Of course that was almost impossible because of the frequent BMs I was having. They couldn't find where the infection was coming from and I went through all the different antibiotics until finally they gave me their strongest one they had for 14 days. I didn't eat or drink for 3 weeks which enhanced my weakness. They finally started feeding me through my neck. Then finally i started to accept food. They sent me home and I lost another 10 lbs and started feeling weak again. Finally after my two week return visit they gave me iron pills due to my anemia that I developed and some pill to stimulate my appetite. After about four days they kicked in and I'm hopefully on my way to recovery. Like many of you I was having 8-11 BMs a day and could not leave home. They gave me Atropine/Diphenoxylate to slow down the amount of BMs and metamucil to help thicken the stools. These do work so ask your doctor about this.
I started having bloating and some pain again and went in for x-rays which showed I was dialated. The doctors said I was probably getting obstructed again so I'm really leary after my last experience in the hospital. Some days I feel good and othe days I feel like I can't eat to much because its not going through. I think its partially blocked, wrapping around scar tissue. A positive from this is that my BMs have slowed down to 2 -5 daily although they are still the diarrhea type. I have stopped taking the meds to slow down the movements and also the metamucil since I'm blocked some already.
Reading your post have given me additiona hope and I know I don't have it as bad as some others out there. This is a great forum and I will continue to be part of it. Thanks for all your good info and sharing.
Hi to both. Bob, welcome. You have found a thread that really cares about each other. You can scroll up and read my story. I have only had one colon resection, almost 89 months ago. Suzanne: that is interesting to hear that most people over 40 have mitral valve leaks. I had never heard that before. I will definately be praying for you on Monday and every day. Post when you can.....God bless all...
Rx girl, you are my hero, always always know that we love you and totally understand. The new drain is a great idea and no doubt it will help you heal faster. They are being very careful with you and although it seems to be another thing to face, it will help. I know that you want to get back to another place in time and I do myself, but we must just look forward. Looking back just causes us to stress and feel worse. Just remember one day at a time and if that day is bad rely on people who care, we do here. Bob, thanks for your post. We care here. Look over my post. I have some of the same issues. You must landed in the right place. Take care. Sue, glad to hear you are doing better! I am hanging in there. Helped my daughter move (bad idea!) too much lifting and I had shooting pains all thought my stomach since (over a week ago); When will I learn anything! I tried the nerve med gabapentin for that type of pain and it just made me gain 10 lbs right away and swell up. Did help some, but not enough to be that uncomfortable! Drat! I am still on pain meds again! Double Drat.
Prayers to all.
Sue and Kit: I have FANTASTIC news!!! I went for my procedure yesterday, to have fluid/abcess drained from my abdomen. I checked in at the outpatient surgery center, drank the two cups of contrast, met with the Interventional Radiologist, had four CT scans done. The first two to see the fluid as it appeared yesterday, and the last two to make sure that they hadn't missed it! They could not find the fluid collection/abcess!! I did NOT have to have the aspiration!! How happy am I?? lol The ONLY drawback is that I still have the two JP drains from my surgery five weeks ago, and they will have to be taken out in my surgeon's office without any GOOD drugs to help me through that awful pain! I know that your prayer's and well wishes had a lot to do with my good fortune. Not to mention that I am on the road to rebuilding my relationship with GOD and my husband is joining me on that "journey" as well. I couldn't be happier right now. Yesterday, I turned my concerns about the procedure over to God, and let his will be done.
Kit: You should know better than to be moving heavy objects!! If it hurts or aches, don't do it, or you will pay the price later. I speak from experience. I think I can do it all too! My husband is always "yelling" at me when I over do it!! Just take care of yourself!!
Bob: Welcome to our forum "family". We have all been united by some unfortunate circumstances, but we find solace knowing that others have been where we are. Our stories are all a little different, but still the same. We have a tremendous level of respect and admiration for our forum members. We are all strong people for coming through on the other side of a bad situation. Again, welcome and enjoy the comfort that we find here.
I hope this post finds you all in good health and spirits!
Fantastic news! I am so happy for you....It is so good to read good news on here. It is encouraging for us all. I am slooowly healing but seem to be better than I was even 2 months ago. I am 9 months out. Kit: you were right about the time frames. I just wish that our docs and surgeons would give us all the info, not just what they think will get us to have the surgery. Also, wanted every one to know that I saw my new GI, last week. I met him at the hospital but at that time, I still liked my old GI. Anyway, he is scheduling me for both an endoscopy and a colonoscopy, to follow up on both my GERD and the surgical work. I am a bit leery about the colonoscopy because of the risks, but I have had 2 before, so know what to expect. I just am worried that they will "do something" in there that will cause the pain to come back. Take care all and keep us posted.
I can't believe finding this site either, like so many others have said, I have spent the better part of the morning reading everyones stories and can relate to just about all of them. My only difference is that I never do have the problem with breaking wind, I would have an accident on myself for sure if I tried (lol).
I had my entire colon removed, connecting the small intestine to the rectum January of '07, everyone has been through alot as well. I spent the better part of spring and summer of '06 in and out of the hospital and dr. office because of diverticulitis and c-difficile because of the antibiotics used to treat it. My regular dr. was hesitant to do anything because of my age, as I was only 35, at the time, but thanks to a very good surgeon here who was called in they refered me to a specialist in a nearby town. Nearly 3/4 of my colon was affected with the diverciulitis, there was not enough healthy portion to peice it together therefore having to remove it.
My teenage daughter gets embarassed when my stomach makes all its noises but I would rather it do that and I would rather run to the bathroom 10 times a day than to have the amount of pain than I did before the surgery.
Your stories have inspired me this morning and I would like to continue to talk with you as a forum family.
Welcome Bugsmom you are in the right place. You can learn from Sue, great support she is.Rx is our trooper, been thought it and then some. Do you have the J pouch or direct rectum connect? We ask it all here. Hope you don't mind! Sue, when I had testing a year out from surgery I did not find any effects, if you do its only for a day or so. Won't set you back. Rx, God is great! Thank goodness you are doing better. Remember, we are only here for a little while and God is with us each day as we travel this painful, hard journey. We all love you and understand. Someday all of us will be in Heaven and having a ball. Not that its soon. LOL I love you all so much.
Thanks so much for your encouragement. Right now, I am having one of those "itchy" days. I am going to take that as a good sign. LOL. Alittle more soreness than the last week, but your posts and notes have really helped me understand that this is normal. Still waiting for the scheduler...lol....that is why they call us "patients"... God bless all and what a glorious day that will be....Take care all
I was fortunate enough to have direct connection, though my dr. advised i may have been in for any number of situations, he had looked at my colonoscopy and was really not prepared for what he saw. He expected to see just a few pouches here and there not an entire colon filled with them and boy to my surprise I was not prepared for what came after either, he did not tell me all the gorry details about the ng tube, that I tried to pull out, or about constantly having to run to the bathroom. We live about 45 min. from the hospital and the area we are in is for the most a rural community, not many bathrooms around and no rest areas to be seen for miles. So needless to say the nurses advised not eating or drinking anything until we got home that day which was very good advice.
Has anyone else's dr. started them on Vit. D? I was told that with this surgery or with the removal of the portion I had, you often times need to have it as a supplement because your body does not absorb it as well without your colon or bowel. I know some of you have said that you feel very tired and I know that I did as well until I started with this and as so my neurologist recommended for me to take Centrum Silver. Now mind you I looked at him like he was crazy and also told him so as he is also a friend that I worked with at a local hospital but he has said that since our bodies have had such a drastic part taken out of us it has depleted our vitamins more making us need more as in the Silver variety.
How are your bowel movements after over a year since the surgery? I can relate to the loud stomach sounds. Mine are so loud that sometimes an entire room can hear them. It kinda embarrasing but what can you do. I'm taking the Centrum silver also but then again I probably need it at 59 years old. I do find I get tired a lot quicker and people are always telling me I look tired even when I feel pretty good. I think it's the constant pain we have either gas or intestine related that zapps our strength. Maybe I will start taking the Vit. D also. I drink milk and thought that would be okay buy maybe it's not being absorbed as you pointed out. Since I had my colon removed July/08 and have the small bowel connected to the rectum like you anything you can share would be appreciated. Timelines as to when certain things happened for you, reduced bowel movements and are your stools still like having diarrhea. Thank for posting and welcome to the forum that I just recently found also. It's so good to be able to talk to people that can relate to what you are going through.
Welcome to the "new" forum members. It is always great to hear from new people. The stories and circumstances are so different, yet so similar!
Sometimes, the reason they tell you to take Centrum Silver instead of one of the other formulations is because there is no iron in the Silver formulation. As we all know, the iron can be constipating, which could bring on more obstructions and so on! Unfortunately since I am still anemic from my last surgery/hospital visit, they want me to take an iron supplement and a stool softener! I think I am some sort of medical experiment at this point! lol As for my bm's, they are VERY soft because of the antibiotics that I have been on since Sept 30th. I took the last dose of antibiotics on Wednesday. Hopefully, things will start to even out soon! Sometimes I feel more like 87 instead of 37!!
I am 6 & 1/2 weeks post-op and I STILL have the two JP drains in. I just can't believe that I am having output. My surgeon wants them to be "bone dry" before he will remove them. But, I am getting REALLY tired of carrying them around. My home health nurse said she has never heard of the drains being left in this long. Which of course makes me worry more about there removal. I wonder if scar tissue can adhere to the ends of the drains?? Don't mind me, just part of my overactive imagination! lol
I was at a bookstore today and felt someone staring at me, I turned around and the tubing from my drains was hanging out!! I wonder what the guy thought they were connected to? lol I don't mind being stared at, it just reminds me that I am alive!! And someone is noticing me, even if it is for something strange! lol
I go see my surgeon on Tuesday morning, and am hoping that it will be time for the drains to come out. I have two percocet tablets just in case it is time! The surgeon also has to check out the abdominal wound that is still open, it is A LOT smaller, but it is still open. I might have to have the surgeon incise it to make the surface hole bigger so the nurses can pack it with gauze easier. The sad part is, I am beginning to get used to a lot of these daily "tortures". lol
I also have a cardiologist appointment to go over the findings from my tests last week. The nurse already blabbed the results, now the Doctor needs to earn his money!
I hope this finds you all in good health. Again, welcome to the newcomers! I will keep you all updated on my saga!
Rx I died laughing when you said that someone noticed your drain when you were at the book store! LOL I know I would have the same thoughts as you! At least someone noticed you were alive! You are a pretty lady all kidding aside though. I am over 4 months on my second surgery this year and I wish I would have had drains in longer. I still get puffy and swollen over the incision area there to this day. I don't think you will have a change to get real scar tissue around them yet. Besides when you have the re connect you can have that removed. Glad your other incision is healing. Thanks to all for the advise on the vit D. I will get the correct one. Please stay on all new comers! We are learning from you. I really appreciate everyone's opinions and thoughts. Have a good weekend.
With the Vit D make sure the dr. does check to see if your level is low and keeps checking though as too much can hurt you. Mine was drastically low and thanks to a very small town dr. and a very compent one that took over for him that I thank the good Lord each and every day they knew to check. My regular dr. made sure he researched my surgery before hand and made sure my local surgeon knew what was going on as well so that if complications arose once I arrived home they knew how to deal with them. I may hate to live in a small town and miss the city life of NYC but would not have given my surgeon or the drs. here in town for anything.
To Bob the bowel movements are still loose as in diarrhea, but have some days slowed to around 4 to 5. There are some times though that I do get constipated and feel so bad that the pain doubles me over just awful and pray for the days of going 20 to 30 times a day. I would rather have the loose watery stool than to have to go through the pain that constipation can put you though. Things that really get to me as far as not to eat are cheese and milk, one stops me up the other sends me running for the toilet.(Go figure)
And as far as the noises my daughter has come to tell most of the people at church that I cant help it I am hungry and our pastor talks too long, thats a teenager for you. Just tell them you haven't eaten yet most people take that I know most of the time I can't tell the difference between the two sounds.
To Rx thanks for the note about the iron, glad to hear your doing better was worried about you, as well as, I have been about the rest of those on here especially those that first started this, I am so glad they did. As far as being noticed heck you and I are the same age did you ever think when we were 3 or even a little older that modern medicine could do something like we have had done? I know I didn't and now I have found you all plus my brother in law and my uncle have also had the same procedure as I done. My brother in law and I live in the same area and our drs. were in the same practice but his was for colon cancer. He is doing very well with his, we both shared the same family dr. and local surgeon as well. So they knew what to expect for both of us, as well as my sister thank Heaven.
Must sign out for the night Blessings to all!
RX: that is hilarious that that guy saw your tube. I wonder what he thought it was? LOL. To all new people, again, welcome. Thanks all for the advice about taking vitamins. I, too, tire easily. I never thought about Centrum Silver? I think I will get some. None of my docs even asked if I was taking vitamins. If it has no iron, that is good. I have Thallasemia Minor ( sp?), which is a genetic anemia common to people around the Mediterraen Sea. I am Italian. I am not supposed to take iron as it is not an iron deficiency anemia. I don't even know a lot about it but it has to do with how big your red blood cells are and how they carry oxygen. I always have to tell docs as my hemoglobin count is always lower than normal, naturally, as a result. I have had them freak out when they see 10 or something and I tell them that that is good for me. I usually stay around 9 or so. When I was in the hospital, after my surgery, it dropped to 7.5 and I had to get 2 units of blood, which I was not crazy about. It caused me to stay another day as it took the evening and the rest of the night as they give it so sloooowly. Again, another itchy day, but other than that, doing okay except I think I am getting a head cold or allergies....
I hope this post finds you healthy and doing well. I saw my surgeon on Tuesday. He decided it was time for the drains to come out, BUT, he wanted to consult with the colleague that assisted him during my last emergency surgery. My doctor came back in the room and announced that we will be taking the drains out in stages over four appointments!! I could not believe what I was hearing. Drain 1 & drain 2 both share the same insertion site on my abdomen. They were being held together with suture material as well as being attached to me with sutures!! He proceeded to separate everything with a quick snip, and then he began to pull drain 1 out to the surface. He stopped just short of taking the whole thing out. So, I had a 5-6 inch plastic "sump pump" (no better way to explain it! lol) just under the surface of my skin. It was one of the most horrible things. I could actually feel this plastic thing under my skin! I went back on Thursday for him to remove the rest of drain 1 and I could barely walk, apparently the plastic part decided to take a "tour" the bottom of it was neart the groin area! ouch. I now have a long, skinny bruise on the right side of my abdomen. I told him he is going to have to remove drain 2 all in the same day because I will not go through the pain again. I told him that I have not felt that much pain since I was immediately post-op. He said he would see what he could do! I know he is trying to be very careful with me, but this is a little ridiculous! Since the area around the drains was a little red and swollen, he put me back on antibiotics! I am supposed to go back to work in 10 days, and I would like to go back without so many issues! lol He also said that my abdomen was more swollen and distended than normal, so that is another reason for the antibiotics. I was a little upset about that until yesterday...Mother Nature came calling!! I haven't "heard" from her since August. So, that is why I was so bloated. I didn't have the heart to call my doctor to tell him that part. I will share it with him on Tuesday! lol
I hope you all are feeling well and are in good spirits!
I will post again soon!
So glad to read your post. Isn't it funny how having BMs can make us so happy....lol. I hope that all will be well by the time you go back to work. So sorry about the pain. I did not have to have drains or a bag, so don't really know what it is like. They attached me back right away. However, that has come with pain, as well. However, slooooowly but surely, I am getting back to what ever "normal" will be. On Dec. 2, I go for a colonoscopy as well as an endoscopy ( I have had GERD) for years, to see how everything is in there. I am a little nervous as he is doing a full colonoscopy, not just sigmoid. The good thing is it is being done at the hospital. I have had 2 before, but they were only screenings as my older sister had colon cancer. God bless all.
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