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Hi Lisa,

I was at the end of my options for the fistulas and cuffitis, so after Remicade, my GI strongly recommended removing my pouch because there was nothing left to try (I've done antibiotics and lots of surgery). Yes, my pouch was taken out this spring. So far, I'm doing awesome!

I had to stop Remicade because a lung mass was found (and therefore none of us felt comfortable switching to another biologic). Later that same year I had a GI hemorrhage, so my untreated disease was very concerning. I dramatically changed my diet (did SCD/GAPs) while I got my mind around a permanent ileostomy. Finally, a year and half later, I went ahead with the pouch excision.

Feel free to ask other questions!
Laura
Lisa, I just replied to your PM.

Also, I described a few other things about my experience with the excision in various posts. Click on my name (in blue) and you can select "view recent posts" to see some of the other things I've said Smiler

I heard and read as many stories as I could before making this decision as well. I'm happy to share my experience.

Laura

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