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Reply to "Continued incontinence after 3-stage Proctocolectomy (removal of colon and rectum)"

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:

  1. Was your anal sphincter pressure measured? A test called anal manometry can do that.
  2. Have you been tested for an infection, like C. diff?
  3. What is the consistency of your output? The right things to do are different if it’s pure liquid vs. pudding vs. solid.
  4. Have you tried a course of Cipro or Flagyl, in case this is pouchitis?
  5. 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.
  6. 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.
  7. 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?
  8. 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!

 

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