although reading posts in this forum for quite some years from time to time, this is my first one to write. I'm from Germany and I have a chronic pouchitis since my colon was removed in 2004. It is not only pouchitis but also an ileitis about 40 cm at the end of the ileum. This inflammation is in a very constant way, just as my colitis was in the 9 years before.
I get along with about 7 to 10 BM per day, but of course my bodily constitution is much less stable than before colectomy.
In all those years with pouchitis the only thing that made a significant change were short treatments with antibiotics when I had a kind of stomach flu or bacterial disorder from time to time. In most cases I took a combination of Flagyl and Cipro, which helped within one day.
This January I tried taking those antibiotics for a longer time, as it is suggested by some people here. I reduced the dosage after a week until it was about Scotts scheme, Cipro 500 mg in the morning and Flagyl 200 mg at evening. I did well with that for about one month. Then I got a clostridial infection, which sent me to hospital within few hours.
Since then I'm on and off antibiotics in cycles of about 3 weeks. Recently I startet adding Budesonide again and right now the combination of that and the antibiotics seems to have stopped my inflammation nearly complete, with only 3...4 BM per day. I gained 5 kg of weight within a week (usually having underweight).
My question is, as I'm afraid of being struck with clostridia again if I continue taking Cipro and Flagyl too long, would it be safer to rotate antibiotics in a weekly scheme for example? Rifaximine would be an alternative that doesn't seem to be as effective, but perhaps worth a try for cycling.
Has anybody managed to get off antibiotics without the inflammation returning? I want to try cholestyramine to rule out that it is a loss of bile acid due to bacterial fermentation, that causes my inflammation when I'm off antibiotics.
Sorry for that long text, but I'm quite fed up with that permanent roller coaster ride in the last weeks, always having creepingly increased inflammation, diarrhoea, weight loss and circulatory problems when going off antibiotics.