J-pouch support: Want to connect with others living with a J-pouch

Posted by janspons @janspons, Nov 26, 2025

Is there a possibility of starting a Jpouch group for Crohns/UC? Some of the things we eat, our treatments, our pouch storage, testing, etc, are somewhat different due to the Jpouch. I have had my jpouch for almost 30 years due to UC, but then developed Crohns which I have been treated for for the past 24 years. I have started having leakage at night, and went through 3 procedures, looking at muscles in the rectal/sphincter area, in the pouch they found some atrophy, which I'm not sure if that is contributing to the leakage as well? Just a suggestion. Thanks for considering.

Interested in more discussions like this? Go to the Ostomy & J-Pouch Support Group.

Colleen Young, Connect Director | @colleenyoung | Nov 26, 2025

@janspons, great idea to help people living with a J-pouch (ileoanal anastomosis) to connect. Luckily we already have a group dedicated to ostomy and J-pouch. I've added this discussion to the group and expanded to title of the discussion

- Ostomy & J-Pouch Support Group https://connect.mayoclinic.org/group/ostomy/

I'm also tagging members like @aileenredding @jean4 @davem @candaceembry89 @bevjoy @crash @rnpalarino1 @lcevenson1951 @jmatt816 @hardingv who have discussed J-pouch and may have more to share.

You can also use the group search to find other J-pouch related discussions: https://connect.mayoclinic.org/group/ostomy/

followthesun | @followthesun | Feb 15 9:01pm

@janspons Hey there! I have the jpouch as well for 17 years now and find it fully functional. My first year x 1.2 I developed pouchitis but was treated with antibiotics for a couple weeks, I due have occasionally mild flares primarily sensations of stress but I don't see any doctor because I have lost trust with any medical information dealing with pharmaceutical industries and they're affiliates!!
My general health is excellent, I workout, eat more proteins with beef, but just the absent of the less colon makes it more inconvenient with everyday occurrences ... But it what it is I guess lol