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Reply to "Newly diagnosed with FAP facing 2 part surgery"

I experienced the same situation as you, but at age 35.  There was no past family history of FAP and my two daughters later tested negative for FAP.  The surgery was difficult, but tolerable and somehow I was able to deal with the bag for a short period of time but was so glad when it was gone.  My dad and two sisters were with me for both of those surgeries, but I got very little support from my wife, who I later found out was having an affair and who started a very ugly divorce.  After the second surgery I was completely on my own, but got through it.  I had no choice but to become self-sufficient as soon after surgery as possible.  Just over 4  weeks after returning home, I was able to return to my upper management job.  Although the J pouch had its issues, it was manageable and I was alive.  Without that surgery, I would have lasted 5 years or less.

I was one of the first at Mayo Clinic to have J pouch surgery in 1981, so the techniques were not as developed as they are now.  With the J pouch, I was able to travel internationally, ski the Rockies, participate in equestrian competitions and do whatever other activities I enjoy. The surgeon left a small segment of rectal tissue when he did the surgery and it produced a malignant polyp about 25 years later that was successfully removed.  Five years later, recurrent high grade dysplasia returned and pouch removal was recommended.  I very strongly did not want an ileostomy with its associated issues and was fortunate to locate a surgeon who gave me a BCIR (similar to the K pouch).  This procedure worked out well and I now have a very good quality of life.

When facing a major surgery, you need to realize that it is life saving and that you will have a good quality of life following your recovery.  I wish you the very best!

Bill

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