I've only experienced pouchitis once when the pouch was first created so I'm having a hard time knowing if I'm possibly experiencing it again. With that bout I felt quite ill and had a fever. Lately I've been experiencing increased frequency where I often feel I need to go again after 15 minutes and then again soon after. The anus is very very itchy. The stool is not particularly loose. I don't feel ill. No cramping. No fever. Thoughts? Thanks.
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If the pattern you’re experiencing is well-spaced pairs or triads of bathroom trips then it sounds more to me like incomplete emptying than pouchitis. For me pouchitis behaves like a “twitchy” pouch with reduced capacity and a tendency to leak. Fever and malaise can occur with pouchitis but they don’t seem to be hallmarks. The itchiness is commonly a symptom of a fungal problem, which can occur if (for example) leakage leads to fairly constant moisture where it doesn’t belong. Hopefully some of this may offer context that fits what you’re experiencing.
Thanks Scott. I think you are likely right about the incomplete emptying. It does seem to come in twos, threes and occasionally fours! I'm not leaking but I have the added variable of the fistula and there is leaking into it for sure now. What does one do about incomplete emptying? It seems to have come on fairly suddenly.
The key with incomplete emptying is to figure out what’s causing it. It can be a variety of things, and I’ll list the ones I can think of off the top of my head: 1) impatience on the toilet, 2) too-solid stool, 3) pouch outlet stricture, 4) sphincter spasm or excessive pressure, 5) pouch prolapse (intimal or full-thickness), 6) floppy or kinked pouch, 7) pelvic floor dysfunction
These range from easy to hard to figure out and/or treat. Hopefully you can narrow it down, e.g. by noticing if the problem goes away when your stool is looser. Can you identify details that make any of these seem more or less likely?
In addition to what Scott mentioned (none of which I had), incomplete emptying (or a sensation of it) was a pouchitis symptom in my experience.
Jan
Thank you Scott and Jan. I've been considering the possibilities you mentioned Scott and wonder about the floppy pouch. When I saw Dr. Shen in Cleveland he suggested I had an enlarged pouch. However the surgeon I saw disputed that. Also that was a few years ago and this is recent. I also wonder about a prolapse. It was prolapsed prior to having a diverting ostomy and seemed ok after returning to the pouch. I'll continue to monitor it. (I'm hoping it will just stop as quickly as it started!)
I don’t think an enlarged or prolapsed pouch simply corrects itself or goes away. It is not easy to diagnose and a simple scope exam will not necessarily reveal it. I do think that your function can can get better or worse, depending on your stool consistency and sphincter function.
Jan