Polyposis J-Pouch

hi tammwell,

while, i have not had my duodenum removed or my stomach, i too am a patient with familial adenomatous polyposis. There is a member on our board here who has had a modified whipple procedure who also may or may have not had his duodenum removed.

you can do a search on the site by clicking the icon next to "donations" at the top right of the screen, where the menu bar is.

i am a j-poucher since 2001, so a veteran, and thankfully yearly scopings are all i require as of now. i was excluded from a study of taking cpp-x1 and sulindac because of my high tricyclerides and subsequent need for omega 3 fish oil, as the fish oil can help reduce the number of polyps in the bowel/rectum.

i used to take celebrex when i was diagnosed with FAP, at age 22. The drug helped to a degree but there is no substitute to avoid suurgery at all.

you can PM me here if you would like, or respond down below. I'd be happy to chat and share. I just know what i know about our illness, but am by no means an "fap guru" just informed and somewhat educated on the disease.

ill be watching this thread.

thanks,

len

I am a Gardner's Syndrome guy...............I have a J Pouch, had a highly modified "Whipple" and have not had my stomach removed.............how can I help?

and I am somewhat of an FAP/GS guru............feel free to ask. My quality of life is excellent!

Thank  you for your replies.  I have been a FAP patient since 1999 when my colon was removed.  I started going to the Cleveland Clinic in 2007.  They have saved my life.  Continue to be monitored there.  My duodenum was removed in 2007.  Now they are seeing some high grade dysplasia in my stomach.  So stomach removal has been discussed but not needed at this time.  The surgeon has told me that he does not know what my quality of life would be.  They have not removed the stomach on anyone who has no colon or duodenum.  So thought I would go to this site and see if there is anyone out there.