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Hi folks - thanks for having me in the group.
I'm about 5 months post reversal and enjoying the fun of suspected pouchitis for the first time (am still waiting for a scope to confirm).
I've heard that exercise is good for pouchitis. but went for a mid-length walk on Saturday (say 2-3 miles) and it really aggravated the symptoms.
I had my ileostomy after 16 or 17 years of ulcerative colitis and I had a similar problem with the UC - even riding short distances on my bike would significantly aggravate a flare; there'd be markedly more blood in my stool.
That didn't seem to be a very common symptom of UC, and I can't find anything online that says it happens with pouchitis either.
The docs don't really recognise it as a thing when I talk with them about it - so I thought I'd post here to ask if anyone else has found that physical exertion (even mild exertion) can cause problems with a pouchitis flare?
If so, I'd be very grateful to hear from you!
Things are feeling a little lonely where I am right now and just to know that other folk are having similar difficulties (and possibly anything that helps?) would be really appreciated ...
Thanks all, tim

To add, I'm on antibiotics and am taking Loperamide to slow things down - if I have a couple of days of either driving everywhere or not leaving the house then things settle to about 6 quite solid stools a day - with some seepage overnight. However, after this walk, I had diarrhoea and small amounts of blood for a day or so. (It's also perhaps worth stating that my evidence isn't solely this walk - whenever I do more than walking just 200-300 metres, it impacts on my stool).

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Hello, Timmo. I just saw your post now. I started walking outdoors a week or two after my reversal (April) and there were always leaks after 30 minutes or so. Some times enough to make me go home. Walking always made my pouch more active. Sometimes just getting up from the sofa was enough to activate. It was the burn from the leakage that caused discomfort, especially if left too long on the skin. Very frustrating because I knew I needed the exercise, and wanted to resume my life. It definitely got better after a few weeks. And I learned to carry moistened paper towels in a zip lock Baggie, or inside an inexpensive plastic snap case. If I had to be out for a long time I would take my travel bidet with me to clean the area thoroughly. Now I am away from home many hours and I'm okay, very mild leaks that are managed by wearing underwear liners and keeping a supply with me at all times in my bag. If your stool is loose, especially soon after reversal, there will be more leakage. But it does get much better as you go along. Are you better now? Did your scope results show anything you can't manage with meds and food? I hope you are better. Let us know.

Winterberry

Hey Winterberry,
Thank you for your really kind reply, is much appreciated.
The reaction I have to activity seems to come a little after doing it - the next day or so, or perhaps overnight, so a slightly different situation to you.
Things have improved from when I wrote previously - I'm a bit stronger than I was, so can do more before I overexert myself. However, it is still a problem - I had two long days with work at the end of last week, and that meant I was up and going to the loo four times every night for a few days whilst I rested up (normally, I'm up once or twice).
I did have a flexi-sig on Monday and, whilst I'm obviously still waiting for biopsy results, I was told that there was some mild inflammation visible, but nothing too dreadful.
I've been keeping a food diary since the reversal and red meat and fish and chips from the local chippy (I'm British!) aggravate things, but I seem to be able to tolerate most other foods ok. The only drugs I'm currently taking are Loperamide - though depending on the biopsy results I guess I might start taking something else.
So things have improved, but I'm still very nervous about overdoing it. I'm thinking of taking out a gym membership in the new year to try to gently build myself up again - will have to see how that goes...
As I say though, I really appreciate you sharing your perspective - it really helps, and your genuine concern is obvious. Thank you.
And I'm glad to hear that you're able to manage things - I'm sure it must do your head in that you still have leaks sometimes, but it's strange how much we can take and call normal.
All the very best, t

T

Hello, Timmo. I am pleased to know things got a bit better for you! And you will know more when your results come back, and that will help direct you. I have a negative reaction to foods like fish and chips (which I LOVE) and other fried foods. It lasts a day or so, until my system clears itself. I try to eat whole foods, as unprocessed as possible, but sometimes f&c with malted vinegar calls to me and I have to answer, to be polite. Stir fried noodles with vegetables and beef also calls sometimes. Perhaps check your food diary to see if a certain food (or sugary energy drink?) taken just before or after you exercise made the reaction. Maybe it's the food or drink, and not the physical exertion?  

Winterberry

Hey Winterberry - thanks for the swift response. And no, whilst I have checked pretty thoroughly, food is a pretty insignificant factor for me (unless I eat a load of crap or drink a bucket of alcohol or something - things that would probably upset anyone's guts).

It's strange because I had this thing with the physical exertion before the pouch, when I had colitis, and then it wasn't a very common symptom either. I asked about it in a colitis FB group once (with several thousand members) and only one woman got back to me. She said that she sometimes suffered from doing something as simple as the hoovering.
It's all a bit of a mystery.

I think it's fair to clarify that it is only when I over-exert myself through exercise that problems arise, it's not just going for a short walk that will do it (though when I was in the middle of a colitis flare that would sometimes be enough). And of course, whilst the obvious answer is to simply make sure I don't overexert myself;  life has a tendency of demanding more than we want to give at times.

Anyway, things are better than they were, and that helps.
Thanks again for your time and wishing you all the very best. t

T

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