As some of you know I have had pouchitis for over 17 years and have been treating it with rotating antibiotics continuously during that period of time. Since starting Entocort in late June, I have tried to go off antibiotics once, in late July. That led to a deterioration after 9 days, as opposed to the usual 5-6 days after stopping antibiotics pre-Entocort.
My Doctor told me that now that I have 3 full months on Entocort under my belt, and in light of the documented fact that I was off 9 days before experiencing any deterioration, he wants me to go 7 days on antibiotics, then 7 days off antibiotics, but to go back on them at the 1st sign of any problem. This is because we have discussed that we can't allow the narrowing of my bowel above the J Pouch to get any worse, or I will be dead meat.
Well today concludes my 1st full 7 days off antibiotics since starting this new regimen. I am happy to report that I do not feel like I have experienced any pouchitis symptoms yet. I am not going to push the envelope, however. Back on cipro and flagyl tomorrow, for one week. Then next time I will try 8 days off antibiotics. And if that goes well, 9 the next time. And so on and so on and so on, until I am off antibiotics.
I was also taking copious amounts of probiotics this week, as chronicled in more detail in the "yogurt" thread.
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