I have chronic pouchitis. I have had my pouch for almost 30 years. I would like to talk to others.
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I have had my pouch since 2013 and I have had cuffitis frequently but now looking at pouchitis as the last three weeks things have gotten worse. I also had a surgery went badly for a fistula, they sewed a flap of skin inside the rectum a few months back, so I am not positive if I have developed chronic pouchitis or having issues with the cuffitis or fistula surgery yet, but what my girlfriend who is a J-poucher said, is that she had every symptom I suffer with and remecade has saved her life in terms of the pain? The metronidazole only works for so long before your body becomes immune to it is what I am told. Good luck with your pouch .... glad you've gotten 30 years out of it!
I have had my J Pouch 30 years and have battled pouchitis for 27 of those years. Rotating antibiotics continuously for 20 years, Remicade the last 7. Remicade definitely improved my inflammation significantly except at the problematic J Pouch inlet. The inlet is a significant problem area for long term J Pouches due to backsplash stool and pooling of stool above the inlet, this because of no backsplash valve as with a colon. I got strictured at the pouch inlet the last 5 years which increased over time until my GI couldn't get a scope through the inlet easily this past July. He warned me if he could not get scope through at some point I was getting dilated, and that point finally was reached in July 2021. He then sent me to an advanced endoscopist who balloon dilated me in procedures done in August, and October 2021 and January 2022. I am now dilated to 18 mm. My GI added Vancomycin to the Remicade in January, this after I had been off antibiotics completely for several years.
I have been told periodic additional dilations are in my future in all likelihood.
I should mention that despite these issues my quality of life is actually quite good and I have worked full time as an attorney the same 30 years I have had a J Pouch. I periodically have frequency and minor incontinence issues but nothing major. I have some other more concerning health issues, including weight gain due to Entocort use the last 6 months (I am now off Entocort), high blood pressure, and arthritis of the knees which is probably being exacerbated by the weight gain.
I have had chronic pouchitis for a year or two now. I had my initial surgeries when I was 16 back in 1998 and 1999, and had many years with no pouchitis, then had it periodically and now recently it has become chronic. After Cipro and Enticort we moved to Humira and that worked for a short time but then I developed reactions to it (skin rashes) and it seemed to stop working, and we moved to Stelara, which I am on now. I have seen some improvement but it is very slow. I would like to talk to anyone else who has been on Stelara, actually. That's my story hope it helps!
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. 🧘🏽♀️