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Deciding on Surgery

Tue, April 09, 2013 8:49 PM

Hi all,

I'm 30 years old with fistulating crohn's disease. Diagnosed in 2005. I recently had biopsies done and two out of the three found low dysplasia. My doctor says there's a 50% chance it would develop into cancer. Now I'm faced with the question of whether I should wait to see whether it does develop into cancer or go ahead and have my entire colon removed.

Anyone who has had a similar situation? Anyone living without their colon? What is it like? What has been helpful to you in making the decision to get surgery or not?

Is life more difficult living with a stoma?

david0912
Joined Apr 9, 2013

Sun, April 21, 2013 8:27 AM

Reply posted for david0912.

I am 32 and had a complete colectomy last September. The result of that surgery was an end illeostomy. No question it's an inconvenience, however, the effect of my symptoms prior to that surgery were so bad that I couldn't leave the house much less lead a "normal" life. Every time I have a sour attitude toward the illeostomy it's easy to remember where I was and where I am know to get past it. I was originally diagnosed with UC, then it was revised to Crohn's, then finally they diagnosed Indeterminate Colitis which ultimately means I have symptoms of both but not enough of either to pin down the diagnosis. This is actually a good thing per my surgeon as it opens the possibility of having a j-pouch procedure which will take away the end illeostomy. If there's any question regarding your diagnosis I would suggest you insist that the pathology be redone in an effort to pin down a diagnosis. Part of the "setup" for the possiblity of the j-pouch was leaving my rectum in place as a small portion is needed for the procedure. My surgeon indicated that I would need an annual sigmoidoscopy to monitor the rectum and if "any" signs of displaysia were noted that I would need to schedule removal. My experience with 50-50 chances from doctors through a though 18 months getting to this point in my life I've typically ended up on the short end of the percentages. I guess in my opnion, living what I've lived, I would much rather deal with a life that includes a colectomy and ostomy as I would consider the impact on my life much less than dealing with colon cancer and the subsequent treatments (assuming that the treatments are effective). If you have any questions about dealing with an ostomy I would be happy to answer and I hope these thoughts are helpful.

jdurfee
Joined May 30, 2012

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