Exercise and leakage

Have had my pouch now for over 3 years (after 25 years of UC, then a diagnosis of rectal cancer leading to a proctocolectomy). I also have crohns in what's left.

Other than swimming, I don't do a lot of exercise as it always seems to cause me problems. Today, for example, I went for a one-hour walk, which went fine. When I got back, I did some stretches on a reformer (my wife is a pilates instructor), for about 10 minutes. Shortly afterwards, took my dog out for just a 5 minute walk, and had terrible leakage issues. Does anyone else have these types of problems after doing any form of exercise? It's thoroughly depressing and makes me nervous about doing any. 

Original Post

I had jpouch surgery in 2014 and, after doing ok for a while, I am at the point now where I am considering a re-do because I did not have a proctocolectomy (and should have). As of late, when I go for a walk or exercise in the gym I have to go to the bathroom at least once or I will have leakage. It is very frustrating because I am now limited in what type of activities I can do. No long walks in the woods, on the beach, in my neighborhood or park

Our stories are quite similar, 25 years of UC, then rectal cancer. Did you have radiation? If so, I would guess that is at the heart of your leakage issues.  I had radiation, before surgery. The pouch never worked well though It looked fine in scopes. My leakage issues were so bad that after about 18 months I first had it disconnected and then about 6 months later removed and an end ileo. Would recommend just getting it removed rather than disconnected, if you go that route.

What I found is that I wasn't doing things for fear of leakage which was not predictable.  Since the end ileo I do whatever I want. It's not perfect of course but far, far better than a leaky J pouch

Thanks so much for this (sort of!!). More seriously, it's really helpful information. Yes, sounds very similar. I did have radiation prior to surgery, and pouch looks good in scopes, so I guess I may have to weigh up the pros and cons here of an end ileo vs life with the leakage.  Thanks again, and hope things go well for you.

Somethings I didn't mention that I tried to help lessen the leakage in the 18 months I had the pouch: a cotton ball placed lightly into the anal opening and tincture of opium.  These two things provided some help (not enough) Nothing else I tried really made much difference

Yes I too have this issue, I always ensure I have a bit of tissue paper between the butt cheeks and a pad in my underwear if I am going to do any activity.
The honest best thing and it doesn't always work is to make sure you have some Imodium/Lomotil about half hour before and some form of food (but not too much) to help bulk it. I am a rock musician and play on stage for sometimes up to 45 minutes so I make sure I am well prepared as that's a work out and sweaty as all hell at times. I wouldn't want to do a "shit show"

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