I’ve essentially had chronic pouchitis for much of my jpouch time (2003). Metronidazole (aka flagyl) has always helped quite quickly (in 1-2 days) but now that it’s 20 years later and pouchitis has 5 or 6 + times a year over that time, I’ve become resistant to it. I don’t tolerate cipro, never really did, and refuse to take humira again as it gave me full body psoriasis so I obviously went off of it, (and I’d also prefer to stay off the biologics given the whole point of the darn JPouch was to not have to be on problematic medication).
I basically eat oatmeal, bananas for breakfast and lunch, and a little bit of salmon or halibut for dinner, and take a lot of probiotics with metamusil capsules on empty stomach in the morning. I’ve managed a successful education, two children and a career through this whole time so I do manage, but I’m generally always exhausted due to not having slept more than 3 hours at a time in 23 years, travel is difficult, and all the etc. that comes w this “j-pouch brainstorm” of the medical system. Would go back in time and not have had the surgery if I could. But alas regret gets us nowhere. Love and patience with oneself and the world gets me through. 🧘🏽♀️
