Familial Polyposis. Ileostomy now facing stomach removal.

Sorry for the long story. My husband has FAP and in 2009 he had an ileostomy put in after they found loads of polyps in his large intestine and cancer cells on his rectal stump (both removed). It was discovered late last year that he has thousands of polyps in his stomach and some ugly ones on his duodenum. For the last 10 years he would have his endoscope and each time he was told "everything looks okay"...now we are facing a mess and alot of decisions. His new doctor has decided to go in every two months to start removing them. We will do this for two years. Last month was his first removal process endoscope. The took 12 polyps and tested them and found a large one with cancer cells. (high grade dysplasia) They found cancer in ONE polyp out of twelve and he has thousands!. My husbands appt to go over results was yesterday. The doctor informed us that we can keep doing the removal process but he is afraid he will miss a "bad" polyp because he has so many and he said that polyp cancer spreads quickly to other organs and because my husband has bleeding issues they are also afraid to touch the bad polyps on the duodenum because it is paper thin. The doctor is setting up an appointment to see a stomach surgeon to discuss a total removal of the stomach. This appt is also to get input to share with his primary doctor too. This is such a drastic move! My husband has only 8" of his small intestine left! When they remove the stomach i think they attach the small intestine directly to the esaphagus. I dont think he has enough small intestine left to even reach. Has anyone else out there gone thru this. Such hard decisions! Are there questions we should be asking other than all the ones we have already asked! Thank you for listening!

Hi Mother - What a story! I don't have much to offer except to say I am thinking of you both.

I had UC for 34 years and all was fairly quiet until dyplasia started showing - and I had surgery as quickly as I could schedule, they found cancer They believe they got it all) and now I am on "preventative" chemo. So I can relate to the mood of going along and then BOOM.

There are a few private groups on FB; one for ileostomies and there are quite a few FAP folks there... maybe there is an FAP group also? I hope someone here can chime in from experience, but if not, you might want to look in those places also.

I am sorry that the doctor was so insensitive. What a terrible situation. I hope you get better options at the 2nd opinion. They are probably right about removing so much of the system. At a certain point, you're unable to get any nutrition and you can not eat food. We had a member here pass because of short bowel a few years back. It was very sad.