@SteveG posted:I agree with the posts above. I also had chronic pouchitis for many years and accepted it as my new normal. After a fissure surgery I had more problems with leakage and decided to try the advanced IBD meds like Remicade, Entyvio and some more over the years, but none of them helped. My situatoin was very much like yours (points A-C)
On the other hand antibiotics had always improved my situation a lot, just as you describe it. But I was given them only in emergency cases, for about 10 days usually.
Two years ago I started taking antibiotics regularly about once a month for several days. My digestive health and blood levels (no more iron insfusions needed) improved. Finally I started chronic daily use of Cipro & Flagyl and found a comparatively low dose that is sufficient - similar to Scott's scheme, without rotation.
I also have been taking Entocort (budesonide) for 8 years now and I stay on a dose of 3 mg even with antibiotics in order to keep inflammation better under control. My last scope revealed hardly any inflammation left in my pouch and (neo-)terminal ileum, for the first time since my takedown in 2004! I have about 4 to 5 BM a day.
Thank you, it is great to see the improvement. Your situation is very similar, 10 -30 days of antibiotics when really bad. Budesonide, like Refaximin is very hard for me to get free due to the cost. I used to use Colifoam until it disappeared from the market, leaving just two players charging huge amounts for their medicines.
Very interesting about blood levels, I always have slight anaemia.
The scope results seem great.
I will speak to the Doctors to see if they will put me on antibiotics full time.
Thanks once again.