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Looking for someone who's had an ileostomy/j pouch to share with me what life is like

Tue, April 21, 2020 9:43 AM

My partner was recently diagnosed with UC. We ended up in ER with a perforation. Theyre recommending a colectomy followed by j pouch/ileostomy reversal. We'd like to talk to someone who's been through this so we can get a better idea of what to expect/what life will be like.

FPO Jyk123
Joined Apr 19, 2020

Tue, April 21, 2020 3:46 PM

Reply posted for charbs.

Thank you so much for sharing your experience with this. I hope you're safe and well. Is pouchitis a common issue?

FPO Jyk123
Joined Apr 19, 2020

Tue, April 21, 2020 3:11 PM

Reply posted for Jyk123.

Hi Jyk123,
Sorry to read that your partner is having a challenging time.    We have a program that can help.   The Power of Two is a peer-to-peer support program where patients and caregivers can connect with a peer supporter over the phone on anything from medications, to daily living with IBD, surgery, and more. To be matched with a peer supporter please complete this form. If you have additional questions about the program or your match please e-mail or call 888-694-8872 x 8.

FPO administrator
Joined Oct 12, 2017

Tue, April 21, 2020 12:00 PM

Reply posted for Jyk123.

I had a collectomy due to severe ulcerative colitis.  Had the osteomy  for three months, and now live with a j pouch.  The collectomy surgery was a very big deal, and really. Took about a year to fully recover. The pouch works fine most of the time. I had occasional bouts of pouchitis the first couple of years, but not lately.  I did develop Crohn's disease which is nasty but not near as bad as the colitis was.  The three months with the bag were difficult, but not unbearable.  On the one hand, they don't really prepare you for what an ordeal these surgeries and recovery are, but looking back, on how sick I was, having the surgery was worth it.

FPO charbs
Joined Oct 31, 2016

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