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.