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Reply to "Questions questions questions!"

Katerina,

I had a similar history to what you described. Diagnosed with UC at age 9 in 1972. Diagnosed with low grade dyplasia at age 29 in 1992. I had complete colectomy in 1992 and got the J Pouch.

Based on the 3 months I lived with the temporary ileostomy and the 24 years I have lived with an often problematic J pouch, I still am glad I decided to have a J pouch and would do it again if I could do it all over.

I say that despite being suspected of having Crohn's. I have treated chronic inflammation in and above the pouch with antibiotics and now Remicade for 20 years. The good news is that my inflammation has been treatable and my quality of life very very good compared to when I had UC. My continence is excellent and I don't have a zillion bowel movements. However I am taking a lot of medications and am doing so chronically. I have also had to change my diet, eliminating processed carbs and sugars. 

On the other hand I didn't like the ileostomy for many reasons beyond the cosmetic issues. I had skin issues and yeast infections due to very sensitive skin. My skin never seemed to adapt and the only way I finally got rid of the yeast infection that plagued me was takedown. I simply couldn't keep a seal and the area around the bag dry. It's yeast infection city when leakage happens, just like mold developing in the area of a leaky sink faucet or pipe that isn't washed and scrubbed or repaired and the area kept dry.

In addition I never psychologically adjusted to the odd sensation of stool coming out of the stoma rather than my rectum and anus. It's not natural. The Ostomy nurses all told me it takes a full year to adjust. Well I didn't have a year and my skin never adjusted. I gotta keep my J Pouch or I am dead meat.  

Good luck Katerina.

Last edited by CTBarrister
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