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Permanent colostomy

Tue, September 12, 2017 11:25 PM

Hello, I am new to this forum and appreciate everyones knowledge and support. Im actually in my hotel room now at the Cleveland Clinic pondering my options. In short...I was diagnosed with UC in 2011. I tried everything (including all biologics) and ultimately had the 3 step total proctocolectomy with reversal from October 2013 through March 2014. Ive not been well since...pouchitis, cuffitis, losing iron, requiring infusions, infections, etc. Btw, Im 37 with 6 yo twins and a full time job. Im in agonizing pain the majority of the time. CC has done some procedures to try and help the massacre that was my initial surgery. Now, Im kind of at that point where I either take my life back and have the permanent ostomy which scares me to death, or I go on like this, which isnt much better...Any thoughts? Greatly appreciated!

LK129
Joined Sep 12, 2017

Tue, September 26, 2017 1:53 PM

Reply posted for charbs.

The University of Michigan ruined me. I went to Cleveland for help and I've really found them to be wonderful. UM had me on Entyvio for a while but it gave me medication induced Lupus so I stopped. Remicaid also did nothing. Now with a prolapsed pouch and constant pouchitis and cuffitis and leaks, I'm stuck living like this or having an end ileostomy which I am praying will be better than the loop I hated. Good luck to you!

LK129
Joined Sep 12, 2017

Tue, September 26, 2017 1:39 PM

Reply posted for LK129.

Did they botch your surgery? I interviewed a doctor at the Cleveland clinic but didn't like him (or them) and had my colon removed in Chicago. I had pouchitis issues, which turned out to be Crohns disease. My colorectal surgeon wants to do another ostomy on me but the three months I had one was enough for me. I've been on Remicade for over two years to no effect. I'm waiting on approval to try entyvio. Hope things improve for you.

charbs
Joined Oct 31, 2016

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