Just thought I would share as I haven't been around much.
UC at age 10, pouch at 19, did great. Anal fistula surgery caused sphincter damage/in continence, only partially resolved with repair surgery at 29. Began using fiber, Imodium, paragoric/codeine to thicken. Occasional pouchitis would resolve with flagyl or rowassa or cort enemas. Chronic refractory pouchitis developed about 3 years ago. Rotating antibiotics and Entocort, but every time I tried to wean Entocort the symptoms worsened (also got a spinal cord stimulator to help with the incontinence which was harder to manage with chronic pouchitis).
Last spring I started Immuran-this was not a drug available back when I had UC in the 80s, so I'd never tried it. Doc wanted me to try both Immuran AND Humira or Remicade together, but I opted for the not likely to work, intermediary step of just adding Immuran. It takes about 3 months to fully load in your system. It worked! I dropped Entocort to 2/day and continue rotating the antibiotics. My health and functioning is better than I have been in YEARS. My life is back! Not sure if we will attempt to further reduce the Entocort in the future, but for now I'm doing so well I hate to rock the boat. I also LOVE that I still have the biologics as a couple more options to try. Yes, this drug comes with risks. So does birth control pills and driving a car. Studies showing these cancer risks were not done on a pouchitis population.
I am grateful for every day longer I am in good health and keeping my pouch. I know this may lose its effectiveness and I still have other options to try, which is psychologically good piece of mind. I still have hope that down the road there will be more options. A nice side effect is that I have not caught a cold since starting Immuran. Used to be if someone in my house got a cold I would guaranteed get sick. Suppressing my immune system has seemed to make me healthier, ironically (in a good way). I had a terrible accident a few weeks ago, falling down some stairs (see risks statement above!), and my biggest worry was they'd make me stop the Immuran so my bones would heal. So far, on the Immuran, I seem to be healing great!!!
For anyone struggling with chronic refractory pouchitis, consider giving this drug a try-it has been life changing for me!
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