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Hello everyone,

I am new to the group.  I just turned 50 and was diagnosed with UC 20 years ago.  For many years I was in remission with minor flares that could be controlled.  Unfortunately,  for the past  2 years I have been unable to control the flare.  I have tried, Simponi, Humari, Entyvio and Remicade.  I have failed everything.  I may get approved for Stelara but have already started meeting with Surgeons. I was  told I would need 3 surgery's as I have been on prednisone for the last year.  Has anyone else go through this? The surgeon was suggesting one surgery and just live with the Ostomy bag but I don't feel ready for that yet.

An experience sharing is greatly appreciated. 

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Personally, I would go for the J pouch, even though 3 operations are recommended.  If you got an ileo with your bottom sewn shut, you would never be able to get a J pouch if you had second thoughts about it. FYI, there are two alternatives to the end ileostomy that do not require having an external bag and these procedures are usually done with one operation.  They are the Koch pouch and closely related BCIR.  You can google them to learn more about these options.

I had the 3 step procedure, first step shortly after turning 61 and the takedown just before I turned 62.  I had a end ileo for  about 7 months and then a loop ileo for 8 weeks before takedown.  I have been pleased with my results so far.  I am 18 months out from takedown at this point.  My surgeon chose the three step due to me being newly diagnosed with UC and because I was in pretty tough shape when I had my first surgery.  I will say my recoveries went well and I feel the three step was the right call for me.

Ocelot, we can all relate to what you’re going through. I’m 62 and just had Step 3 last November—so still getting through the “transition.” I was diagnosed with UC in 2001 and had 5 years of hell followed by 10 years of Remicade induced remission—and then hell broke out again. After emergent surgery I managed the end and loop ileostomies OK, but didn’t want to deal with it the rest of my life. The j-pouch can be a challenge too. If not for the people on this board, it would be a lot more difficult learning how to cope day-to-day, week-to-week and month-to-month. You’ll find everyone’s experience is unique, but we all have the same hope and desire to be free of this damn disease.

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