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Mucosectomy done with Jpouch surgery without informed consent

Sat, February 11, 2012 12:26 PM

Almost 2 years after J-pouch surgery, I discover that contrary to the standard reservoir surgery where a rectal cuff and anal transition zone is left intact, he stripped all the mucosa and cut out the nerve-rich anal transition zone that is important for sensitivity and continence. Mucosectomies used to be done for fear of cancer occurring in the area, but it has been discovered that cancer can occur anyways, and I would gladly exchange a yearly cancer checkup for certain night incontinence and constant perianal discomfort. But I was not informed of any options, nor was I given a choice. According to the Ileonal Reservoir Guide and any standard description for the surgery, mucosectomies are rarely done now because of increased bowel movements and perianal irritation. Yet I was diagnosed with ulcerative colitis at the time, had no cancer, and had no idea that the "best" surgeon at a famous research hospital would condemn me to a life of diarrhea and incontinence. I am not blaming my ilness on him, but he has made things far worse even when I have no inflammation. No doubt he is not the only surgeon to do what he chooses without informing the patient, nor was I the only patient to undergo this. Are there any mitigating surgeries? Although I had an extra emergency laparotomy after reversal for sepsis, more inflammation after that with intravenous steroids, remain underweight and don't know if I can take any more. I can only warn others.

eljunia
Joined Feb 11, 2012

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