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i have a j pouch I did not see a doc after having takedown surgery for 20 years then my 3 children all diagnosed with fap they told me I should get checked out, so I did I haven"t had any problems in all that time, Now since I went they say there is a polip all around my rectum where I am put together. Now after 8 pouch oscopies the surgeon says he maybe can move the pouch down but I will probably leak all the time or he can give me a permanent ostomy [which I do not want] I was wondering if any one has had to have this type of surgery so I can make the right decission

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I was in a similar position 8 years ago when a malignant polyp was removed from the same area and an ileostomy was recommended.  Fortunately, the surgeon obtained sufficient margin and there was no spread during the following 6 years.  I believe that my inner sphincter muscle was compromised by that surgery and I did have increased leakage, but lived with it.  I was also strongly against having the bag.   Just over two years ago, my GI found more high grade dysplasia in the same area and said that the sphincter was very weak and that my j pouch could not be saved.  His diagnosis and recommendation was confirmed by Mayo Clinic.  Since I still was against having an ileostomy, I asked about getting a k pouch or BCIR at Mayo, but they declined this option.  Fortunately, I contacted Dr. Ernest Rehnke at Palms of Pasadena Hospital in Florida and was able to get a BCIR.  The surgery went well and now I enjoy a good quality of life.  The care I received there was top notch.

 

Ultimately, the decision on which option you elect is yours to make.  There is a lot of information on all options available on the internet.  I also have FAP, and as long as there is any colon tissue at the anastomosis site, cancer may develop.  If you elect a pouch advancement, be sure that your surgeon has performed a number of them.  If the results don’t work to your satisfaction (i.e. unacceptable leakage), ypu can still get a k pouch, BCIR or an ileostomy.  Feel free to PM me with any question, and best of luck with whatever option you select.

Bill

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