my biggest problem with chronic refractory pouchitis is that I get dehydrated really fast, to the point where I need to get IV fluids in order to function. I’ve been untreated since January (going on 4 months) while I work through the alicaforsen trial. But either the drug isn’t working or I’m getting placebo, and I’m just getting sicker. When pouchitis symptoms are under control with antibiotics, I’ve gone for IV hydration about 3-4 times per year. Right now I can barely make it a week.
i don’t read about this on this forum at all—do others go through this? It’s just part of my routine now but I can’t believe I’m the only j-poucher who goes through this.