Hi there, In the past I have had a few cases of pouchitis, but a course of Cipro has always taken care of it. This time I have been struggling with it since mid December. Every time I go off Cipro a few days later it's back! I have a new GI and I'm not sure how familiar she is with a j-pouch. She told me they rarely do j-pouches anymore. She just prescribed entocort along with the next month long course of cipro. This is a new drug for me. Does anyone have experience with it? I am well acquainted with the dark side of pred., but she says this doesn't have the same level of side effects. She also has me taking the three pills through out the day and not just in the morning. Is this the normal way to take it?

Spiritgal - I began taking Entocort 9 days ago, same 3 capsules a day for a total of 9 mg. At this point I have had zero side effects. I have also had zero benefit as well. I have been battling chronic pouchitis for almost 3 years on and off. If you can, I would research finding another doc that is familiar with pouchitis for starters.

Also, the best luck I had with any med was an antibiotic called Xifaxin. I initially took a very high dose (I think it was 1200 mgs per day) and the backed off to 600 mg per day for maintainence. It lasted for close to 9 mos but it began a decline in effectiveness in about 6. I liked the idea of Xifaxin because it works in the intestinal tract rather than being absorbed into your system to work.

Good Luck.

My new GI just started me on Tindamax for pouchitis. I don't think I've seen that one here on the board before....
LoriP

Lori - I took that as part of a 3 drug "****tail" for several weeks. I also took both Cipro and Xifaxin. The combination worked well while I was on it but when I stopped the symptoms returned.

A few years back my doc tried entocort instead of prednisone since the effects may not be as harsh. I took it for about two weeks before I developed a nasty condition called lichen planus in my mouth. It was painful...like open sores in the mouth. It sometimes goes into remission but it's here to stay. There's no cure, but it's manageable. The first thing my dentist asked was if I was taking any steroid type meds. Hopefully I'm in the minority with this terrible side effect!

I was also put on entocort about 2 weeks ago. I was also taking cipro and flagyl but have now stopped that. My local GI that doesn't have a lot of experience with pouches put me on it because after doing a stricture dilation he said the pouch looked as if I had UC again. One thing that I've noticed and wonder if either of you get this is some nausea. I know it is a side effect just wonder if you experience this too. It's been bad enough for me that sometimes I need to take anit nausea medicine phenegran.(sp)

I'm also taking it the same way as you gus are 3mg 3 times daily. I try to take it with food but doesn't make much difference. Usually within an hour or two of taking it is when the nausea sets in.