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Reply to "Chronic pouchitis for 16 years"

Hi ccolby,

unfortunately the cholestyramine did't really help me. I startet with 2 g three times a day to the meals and increased to 3x4 g the next day. That was already too much, the stool seemed more fatty and flatulences increased. So I continued with 3x2 g for some days without having noticeable benefit and aborted it again. I feel I'm doing better without it.

I'd be a little sceptic using an antibiotic only once a week, as it may provoke a bacterial resistancy. At the moment I alternate between Xifaxan in the morning and metronidazone / cipro in the evening, as I found that only the last two mentioned still left over too much flatulences. I read a study abstract recently that suggested cycling between two antibiotics daily makes it hard for bacteria to adapt themselves.

Anit-SIBO herbs like allicin may be worth a try, I did't yet. What I did try was sodium butyrate 3x2 capsules á 600 mg per day, and it helped me great for several weeks. I even could abort the budesonide during that time (something that did't work any other way except with the antibiotics). That was already some years ago, and it stopped working so good when I got a stomach flu. After that the effect was much weaker.

I also used the sodium butyrate for enemas, but not often. Applying enemas with a syringe as you mentioned is an easy way to do it, with little effort and cleaning. Perhaps I'll try an enema with water (about 1% of isotonic salt level added possibly) at night. I did so some years ago several times, but mainly because of an anal fissure that I misunderstood as cuffitis at first, and it was always helpful.

Topical use of antibiotics is something I thought about, but did not try yet. And I have little to no side effects from the pills.

Could the “weird white growths” you describe be ulcerations of the mucosa that are common for CU? I always see white spots (and also some pseudo polyps in the terminal ileum) during pouchoscopy.

The studies you cite are interesting, especially the first one, but the question is when they find a medicine or an individualized therapy for IBD patients. Till that we are bound to the trial and error principle.

Steve

 

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