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Reply to "MRI Enterography Study of Small Bowel"

That sounds very promising that perhaps the thickening has always been there and just not previously detected, and is not increasing or worsening!

Are you staying on the full dose of 3 Entocort/Day? I had weaned down to 1 Entocort/day, along with still rotating my antibiotics and did great for about 5-6 months over spring/summer, and then the pouchitis reared it's ugly head again last month. As per my usual, I was in denial for about a month before I called the GI, and am now back on 3 Entocort/day for the last 10 days. Things are better, but not totally, and it usually takes me a full 2 weeks for the meds to ramp up in my body.

Anyway, I am going for the usual course of 3, down to 2, and then down to 1 to see if I can hold at that level for awhile, again. I have never used antibiotics without Entocort, except for a couple weeks when I tried to get off Entocort completely following my first 3 month round of weening off, and I was misserable. I can't shake the nagging feeling that they are doing nothing for me, and that only the steroids are helping (although I really don't want that too be true, since chronic antibiotic-resistant pouchitis is even scarier than run of the mill chronic pouchitis, to me), but I am also too nervous to rock the boat by decreasing them. I keep hoping to be good and stable for 6 or 8 months so I can then try to tweak things a bit, but have just had too many variables lately.

I guess my question is if your docs plan is to keep you at the full dose of 3/day until next July? I noticed some very minor steroid side effects, such as peeling fingernails, a little facial acne, and more peach fuzz on my cheeks than usual-all very, very minor, and no where near the side effects due to prednisone, but noticable enough that I can say for sure that while Entocort may not be nearly as systemic as prednisone, it DID seem to show some very minor systemic absorbtion which concerns me a little regarding long term use. But it works SO WELL for me, it would be hard to give up if nothing else is.
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