Coping tips for a J-poucher... who has had her for some 11 or 12 years.. looking to talk with others very similar

I've had mine for almost 13 years.  I'd be happy to chat.  Feel free to send a message or post in this thread, though I am not on here much.  I feel there could be room for improvement for me as well.

Do you want me to send a private message?  And we could chat there??

I've had mine since 2013 - that'll be 7 years. Does that count? Would be interested to share experiences, suggestions.

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 24 year. Don’t have to many problems. I would love to talk.

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

I've had my j-pouch for 17 years this month. I sleep terribly because of the obvious. I have read about people being able to eat everything, but that is not the case with me. I have heard that people have become vegetarians, but I have finally reexamined what I eat and know that is not what is best for me. I would like to just go with fasting more, and eat less, in hopes of feeling better. I just need to look like I've been held as a POW, and I think I would finally start feeling better. I feel, at times, I'm just allergic to food and if I would just do without more often I would feel better.

Yep. I hear you. I don't think it's healthy to just/only eat vegetables. Besides which, it seems to me no matter what I eat (except spicy food and maybe too much roughage at one time) I have the same amount of going to the bathroom. ANd it's not predictable. I swear, I could have a cup of coffee, eggs, toast, bacon and half a banana and be fine one morning but that same breakfast, the same exact amount could send me into having to use the bathroom four times in a row. ANd I"m so exhausted in the  morning from getting up up up. I also feel I have to drink so much water or I feel faint. And so if I'm not using the bathroom due to food in my system, I am using it to pee!! I don't think we are really allergic to food. It's just our system doesn't function like it should and it never will. It is nice to hear about the occasional person who is commenting that they are doing great with their chosen diet but I just know it wouldn't work for me. I mean, it seems to not matter one way or another what I eat, drink, when I eat, drink.. I still am in the bathroom A LOT.  But at least I have my life back and can travel and go out. When I had UC, I bled a lot and was very anemic for years. That was also horrible.

On my gastroenterologist's advice I take a tablespoon of Metamucil mixed in a half cup water (less water than the label on the container says) every morning after breakfast. He said the fiber helps "bulk up" the output. I find it helpful and it might be worth trying for those having a lot of problems.

I agree that the same food can cause different reactions - I guess not having the large intestine means your small intestines carry the burden and seem to be very sensitive - it's just a fact of life for us. I don't regularly take immodium (loperamide) but I do take it when the looseness etc. is just too much. Peanut butter is also good to slow things down. The main thing that helps me is eating simple foods like rice and beans, chicken, non-rough vegetables like cucumber, squash and so on.

Yep, simple foods are best for me. I have an aversion to Metamucial as I was forced to take it, either the powder or the wafers for years. If I even think of it, I start gagging. I was away on a dance vacation for 8 days and we were fed breakfast and dinner. So many people complained about it. I was happy as a clam.. it was simple food.. what you saw, was what it was. Except for one night, when the fish tasted "off" and I fed it to a cute feral cat that was roaming the resort, I had no issues with any of the food. It was plain, simple and what you saw was what it was. I will write again about a cereal I like to eat and put in yogurt or soup. I want to make muffins with it too. Gotta rush home as I have been shivering at work for hours now and wearing my coat and scarf and sitting in front a space heater. I am and have been achey for a few days now and thought it was just due to my travels but I rested for three entire days and now I am in so much pain.. everything hurts... AHHHHHHHHH