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Reply to "Desperate! Bentyl (dicyclomine) and Rifaximin (Xifaxan) Low Fiber diet"

I hear you Zig, and have some hope to offer. Had my Pouch put in in 2013 and have had chronic pouchitis ever since. Pain has been excruciating and constant. Sleep has been horrible. Bathroom trips 30+ trips over day. If I even smelled food I would need to run to the bathroom to avoid an accident.  

I tried pretty much every type of medication. Until a couple of months ago I was on Humira, Amoxi-Clav, Rifaximine, Codeine Contin, Percocet, Wellbutrin, Esomeprazole, and Prednisone all at once and I was in agony. I started looking at a permanent iliostomy which I really didn't want to do because my experience with one during my pouch construction was awful. I was about to go on long term disability, feeling pretty much at the end of my rope. 

I already tried Humira for about 18 months with no real success and Remicaide only worked for a couple of weeks before I developed antibodies to it.  I didn't have much hope for biologics but to be thorough I tried Entyvio starting about 10 weeks ago and it has changed my life. I have gone from taking 8 medications down to just Entyvio and occasionally Percocet for pain. My urgency is drastically reduced, my sleep is infinitely better, my energy is up and I am feeling better than I have in years. I still have pain and some urgency but it is so much better now and I understand that Entyvio doesn't  take full effect for up to six months so I am hopeful. 

The main reason I'm posting isn't to sing the wonders of Entyvio, it is mostly to say I understand where you are coming from and how difficult and depressing it can be. If there are any meds you haven't tried I would encourage you to try them and with some luck maybe you will find the one that will finally work for you and get you started on the road to recovery. 

Best of luck and be well Zig.

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