Jan, I have a 30 yr old pouch for due to UC and colon/rectal cancer. Developed frequent pouchitis episodes many years ago which manifests itself mainly in trouble emptying. Cipro worked very well for me for many years but then I became resistent to it, Flagyl makes me nauseous. Some other anitbiotics were not that successful. Entocort was wonderful but my doc is not in favor of being on it long term and have just weaned off. Complicating things is my tendency for EN and PG on my leg for which my derm injects me with steroids which he says in in my system for about about 7 weeks. My GI (who is at a different facility from my surgeon and they do not communicate with each other than through me (and I prefer it this way as a way of having a" second opinion")wants me to try Entyvio infusions but I am very nervous about since it was only FDA approved in May and no long term studies about side effects are in yet. I did read there is low risk of cancer of different types and a fatal brain condition called PML?(PLM)?.and other complications Additional concerns are that I had a fistula track since
2004 (hysterecomy with difficult adhesion take down)" arising from superior j-pouch which appears patent, terminating om a 2.2cm chronic anterior pelvic abcess cavity". Needle biopsy revealed no abcess material, infection or cancer. Since it has been stable for 10 years with no symptoms whatsoever my surgeon doesnt want to tamper with a surgery and prefers to just keeps monitoring it with annual scans. I am afraid that if i proceed with the entyvio it will somehow screw up this quiet unsymptomatic situation and i would be begging trouble. Also as I generally feel well and my lifestyle is comfortable and easy going I do not feel that I am at the point to go to something such as entyvio that seems to me to be reserved as a final recourse when all else fails and the patients quality of life is compromised without it. Besides, with my intermittent outbreaks of PG/EN and my derms steriod injejctions to treat it, I feel that helps with my pouchitis anyway. My gut feeling is I rather wait until I feel a more pressing need to feel better or have considered different schedules of alternating or tandem anitbiotics (been on vacation from Cipro for 3 years) possiblly including or trying entocort on an alternating basis or lower doses. Both the doc and surgeon are at well known and respected teaching hospitals. Your thoughts on the entyvio, etc issues for me. Thank you so much and sorry for the lengthy post.