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annePNW
03-28-2008, 04:28 AM
Hello,
I was wondering if anyone here had any experience or knowledge concerning Attenuated Familial Adenomatous Polyposis? I have just been told I had this genetic disorder... I have been advised to have as much of my colon removed as I am willing to remove considering the lifestyle changes I'm willing to accept.

Some background: I have had 4 colonoscopies in the last five months. On the first in October the doctor only saw what appeared to be a large polyp that came back benign. He attempted a second colonoscopy in November to attempt to get more biopsies and possibly remove it and was unable to even get to the right colon due to the fact that my colon is very curvy and loopy. I was sent to another gastroenterologist who was able to get to the right colon and discovered a bunch of adenomatous polyps...and who had me go for genetic counseling. This doc recommended I have my right colon removed because he said it took "heroics" to survey that part of my colon and did not feel certain he was even able to get to all of the polyps. I saw a surgeon at another medical center for a second opnion... and he wanted a FOURTH colonoscopy to see just how hard it would be to survey my colon. I had that last week and the GI doc was unable to get to the right colon again. He also recommended removal of part of my colon. He also sent me to see an oncologist who told me I had AFAP and he recommends that I remove much of my colon... maybe even a subtotal colectomy... because I have an 80 to 100 percent chance of getting colon cancer.

I see the surgeon tomorrow to decide how much colon to remove and to schedule the surgery, but I'm so worried and confused as to what would be best for me to do. Do I have the sub-total? What will my life be like after that surgery? Do I remove less than recommended... or would that be too risky? Do I really want to have surgery? Ugh! Anyone out there have any great advice for me?

REB
03-28-2008, 03:08 PM
having lived with a colostomy for the last 6 months, I can tell you it is a lifestyle change.

I wonder why they just can't keep checking you out once a year and remove polyps as needed?

But if they are right, and it can keep you from getting cancer, it may be worth it. Having been through Chemo, I can tell you a living with a colostomy is much better than having to go through chemo.

If you do get a colostomy, you can continue doing most things you did before. It does complicate life at times, and, in my case, I had self-image problems with it.

After a while, you do get used to it and it become a normal part of your life. It just takes time to adjust to it.