I got diagnosed with irratractible pouchitits in 2000. Tried every antibiotic, including Cipro, Every single clinic I went to. Remicade, entyvio, everything I tried. I had a fistula so huge between my Anus and Scrotum that when I got it lanced, the surgeon was legitimately concerned. I was getting abscesses lanced twice a month.
As of today I have been 90 percent better for 1 yr. Firstly and most importantly, my intestines were not absorbing the antibiotics. I randomly started chewing them into paste, Augmentin and Cipro, and my abscesses and pouchitits cleared up in 3 days. Dr Peter Rubin in nyc said "your intestines are comprised and haven't been absorbing the antibiotics for the last 17 years". Ha would've nice to think out of the box like I did, a little earlier. My scope showed no pouchitits. Some tissue is still damaged where the abscesses were, but nothing is active. Unfortunately I do need to take these antibiotics every day but I am considering trying some other methods. I just don't feel, whatever is out there, is strong enough to kill What's going on in my pouch. Rubin said I had been absorbing about 10 percent of these antibiotics since 2000, because after the jpouch surgery, my gut just doesn't absorb certain things.
Simithicone... I take about 10 gel caps right before meals. It wipes out gas. You know that horrible cramping we get? That's from gas in the inflamed area sometimes. My pouch has trouble passing gas. I've heard other people do too. I actually can only pass gas if I'm lying on my stomach. Anyway simithicone(I feel like I'm spelling this wrong) wipes that gas out.
I also use some other unorthodox methods. But science says whatever I'm doing is working. Please make sure you're digesting all your antibiotics. Take the liquid forms if you don't want to chew them up. If it doesn't help you within days, than I guess we all really have different causes for our chronic pouchitits.
If you decide to take your antibiotics the way I described (Cipro tastes terrible. Augmentin tastes not so bad) and you improve within days, please let me know? Dr Peter Rubin confirmed my pouchitits is non-existent. The reason is the fact my intestines weren't absorbing antibiotics. I am 90 percent better now. That should motivate people at least to look into this with your doctor. I could not leave my bed a yr and a half ago. I had pouchitits and rectal abscess. I go to the bathroom about 3 times a day now. I am on a strict diet. When I go to the bathroom, I sit backwards on the toilet. I know that may sound silly, try it. I believe my pouch empties 20 x better this way. When I'm having trouble emptying my pouch and what's backed up in my small intestine, I give my self a colocort, just to flush out my pouch. I don't know why the liquid in fleet enema doesn't work, but it doesn't. Sometimes I need an enema. Sometimes I do not. I do believe part of our problems stems from not emptying our pouches completely.