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J Pouch Surgery Advice

Mon, October 22, 2012 1:24 AM

My doctor wants me to consider the J Pouch and I am really considering it. After 15 yrs of UC I am just tired of fighting it anymore. I have read many things on the web about people who thought they had UC getting this surgery only to find out they had Chrons and now they are worse off. This makes me a little nervous. Anyone with UC have this surgery? If so what is the recovery like? Do you need to change your eating habits? How do you feel now?

sharbear1611
Joined May 10, 2009

Mon, November 19, 2012 12:39 AM

Reply posted for sharbear1611.

i had jpouch surgery 26.75 years ago. about 7 years ago i underwent a revised diagnosis of crohn's, of course i spent about a year in denial but in the end the fact that i now contend with strictures in my jpouch there is no doubt of the revised dx. that said for 19 years with an occasional bout of pouchitis i was med free and was for the most part glad i had the surgery. bottom line in answer to your question: stuff happens but its not the end of the world. i would have the surgery again even knowing what i now know. i am not the only case and i know of probably a half dozen or so people who have been through this, 2 of whom i am in close contact with, others i have met in passing at ccfa symposiums. the surgeon wont proceed with the procedure unless they believe you have UC and not crohns. if your life is complicated by the vagaries of UC today and the many medicines now available to address the disease arent working then frankly surgery is a good option. is life as it was before, of course not, but it will be better, in an ideal world you will have traded out your diseased colon for no pain no urgency. how many times have either of those two issues cramped your style? good luck.

deweythom
Joined Nov 28, 2011

Mon, October 22, 2012 7:54 AM

Reply posted for sharbear1611.

I was actually mis-diagnosed with Crohn's for 11 years, and after I failed pretty much all of the available treatments, it was a surgeon at a teaching hospital who took a look at my history and determined I had UC. He was even more confident after sitting in on my colonoscopy, and his diagnosis was confirmed by pathology after analysis of a tissue sample from my colon post-surgery.
The recovery for these surgeries is pretty tough - especially if you are already underweight and weak from a flare. But it is definitely worth it in the end. I had complications with my first attempt at a j-pouch, which left me in severe pain and losing weight like crazy, but I still wouldn't change my decision if I could go back in time. I am happy with the results now, and I am less than 4 weeks post-surgery, so I know it will only go up from here!
Feel free to read more about my experiences on my blog: mymisbehavingcolon.wordpress.com

amandanl82
Joined Sep 10, 2012

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