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.