Hello...
I have had pouchitis for years and my doctors are at a loss of how to put it in remission! I was severely depressed when I had my ostomy and refuse to have a permanant one. Does anyone know of a good doctor for when you are at the end of the rope? I am willing to travel anywhere!
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I am in Boston. I am allergic to all TNF properties and can't walk when on prendisone! They have tried it all!! They took me off my Budesonide when I was in the hospital last week and my GI was pissed today because it was working wonders. They have tried everything, but currently am on cortifoam, enemas that had to be made in a compounding pharmacy, and rifaxamin (which I have been on multiple times before and did not work). My doctor today was about to refer me back to the team who didn't know what to do with me a year ago...I am miserable, as my pouch distention is causing bladder issues.
I'm guessing that you've tried more things than you've told us. Nevertheless, the article posted at the top of the Pouchitis forum has a number of good suggestions by Bo Shen at the Cleveland Clinic (he's the one people go to when they are at the end of their rope). One of the suggestions in that article helped me when Cipro stopped working for me after a few years. Combination antibiotics can work when individual ones don't. In my case, even though Flagyl never did any good alone, Flagyl + Cipro together have been working very well for me for quite a while now - certainly over a year.
There are a fair number of antibiotics worth trying in combination. I've often thought that Xifaxan (rifaximin), which did nothing for me alone, might work great in combination with one of the others (and have fewer side effects). It may be worth a try, anyway.
Jill Roberts IBD center at Cornel or any one in Dr Presents group at MT Siani, NY
But to be honest, I'm in sort of the same situation, chronic pouchiti! tried all the meds, 15 year, and am going for a second opinion within the same office, just another set of eyes, as I think they would like me to go back to a ostomy as I'm going in for exploratory surgery next week As they are also thinking adhesions. Been in hospital trying to stabilize me till next week. Can't eat, pain, dry heaves, full of gas. Now at home on Ensure. This is going to be a long week......not fully knowing what's wrong or what's the right, if any solution.
