Scott F posted:I’m sorry your recovery has been so difficult, Arthur. A couple of things come to mind that might be worth your consideration. I’ll just list them, in the hope that one or more may prove useful:
- Was your anal sphincter pressure measured? A test called anal manometry can do that.
- Have you been tested for an infection, like C. diff?
- What is the consistency of your output? The right things to do are different if it’s pure liquid vs. pudding vs. solid.
- Have you tried a course of Cipro or Flagyl, in case this is pouchitis?
- The dietary salt advice you got sounds a bit careless. It’s true that you shouldn’t restrict salt, but I hope you’re not consuming too much.
- During these many bathroom trips, are you emptying a substantial amount of material, or is it small amounts? I’m trying to distinguish between too much output vs. inadequate pouch capacity.
- Gas can be challenging for many of us, since farting when away from the toilet is just plain risky. What have you tried to decrease gas?
- Has your pouch been looked at? If so, how did it look?
For the first manometry quite awhile back, there was a lot of pain and they couldn't complete it, and the more recent one I believe was ok. No C. diff. Consistency has been extremely watery until a couple of weeks ago and now is a little thicker - kind of grainy or lumpy with tiny lumnps, but still very thin. Did not try Cipro or Flagyl. Yes, I forgot to mention that I was diagnosed with pouchitis and cuffitis. No I don't really over do it with the salt.
Usually not emptying a lot each time but maybe once out of the 5 times I get up at night, there's a pretty good release but always feels like a stream of water through a hose, with some "grit", if you will. I don't think the output quantitiy is a problem. I was tested for that awhile back when my output was a lot more and they didn't think it was a problem either.
I don't really pass gas much, just a lot of gurgling inside and a periodic release when I'm going to the bathroom, but when it feels like I'm passing gas at night in bed, that's when I have an accident.
Yes, I had 2 pouch scopes and the first one was fine. The second showed ulcers around the sutures so they prescribed and anti-biotic for that. The doctor made a comment though that the anal cuff was "either cut too short or I strained too hard". I looked up the short cuff and sounds like there used to be a problem with that and if too short it caused incontinence, but that they normally completely remove it these days and not a problem because of the new pouch surgery techniques.
Thank you so much for your help!