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?
Hi there, I just saw your post and wanted to let you know that I have some new information to share that I will post tomorrow. It's late and my little one gets up very early.
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):
And there are a couple of cookbooks that I am using right now that are helping me to figure out this new way of eating:
Well, I hope some of this is helpful. If I think of anything else I will be sure to post and if you have any questions, don't hesitate to ask.
Take care and talk to you soon.
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.
Kim, (I hope that's right)
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 :-)
Take care and talk to you soon!
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?
Take care and keep in touch~Ah'lai
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.
Greetings to you all!
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.