I would love to discuss some coping tips and strategies with others who have just about my same situation and are dealing with it now. I have had a J-Pouch for about 11 or 12 years or 13 (I lost count!) and on the whole, all is well. I manage well, but like anything else, I always think there is room for improvement and I'd like to have a structured group of folks all in the same boat here... Someone relatively healthy and active, have a J-pouch for 10 - 20 years and would be willing to talk about tips to  .. well.. tips for just about anything to improve/deal with the situation!


Thanks!

Original Post

Yes Curly... please chime in. I didn't mean to be so specific about the amount of years but I just know most people have the most problems the first chunk of years and I am past that and was interested in those who have experienced J Pouchers.

 

Ha. That is kind of funny. I never used the words "Experienced J Pouchers " before, that is far less words that what I originally used and would have sounded better. Oh well!   So, tell us about your J pouch and life and adventures!! Welcome

Hi I’ve had mine for seven years and knock on wood but besides having a very limited diet I am so much better than I was when I had uc . But I get scared when I read that after like 29’years orso people start to get problem. I wonder if that’s always the case ?  I’m not saying I always feel great because I don’t . I’m often tired and am never away from a bathroom and get pouchitis a lot . But I excercize everyday day work with kids every day so overall I’m better than when I had UC pre surgery's.

I eat most everything but I do notice that some things set me off - frequent bowel movements, feeling frequent need to go but have to strain to get anything out, irritated lower bowel. It seems to be a lot of rich food, food with a lot of cream - a lot of recipes these days call for adding cream to the gravy, I notice - and some spicy food, but not all. When I get this reaction it feels very debilitating. But it does pass when I calm my eating down. Unlike what some might expect, I find legumes (red beans, black beans, etc.) and rice, including brown rice, to be very good for my gastrointestinal tract. Also, I eat nonfat yogurt with oat flakes, raisins, bananas and nuts for breakfast most days and that seems to be good.

My biggest issue is sleep interruption. I wake up several times a night and I'm not sure if it's the bowels waking me up or waking up triggers the feeling of needing to go. It's exhausting.

Overall though, I guess I'm doing ok. Would be interested to hear from others.

 

 

I've had mine for over 20 years and I do have a Fistula and Seton. I find that regular and consistent exercise makes my pouch function as good as I think it could ever be. I run usually 20-30 miles a week,  less in winter.  I'm also a recent vegetarian convert (6 months ago) and I feel like my daily bathroom visits are way down. I'm a little sad I never tracked my BM's  but I know i've improved greatly with the diet change also. Scott MC

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