MY mom had FAP. I have it.my name is kathy. my only brother has it. his daughter had it and did not have colon removed and became cancer colon liver chest head. she was only 32 and past away in 2014. She had three children and 2 out of three has it. my youngest daughter has it and age 18 at Duke Hospital had large intestine removed and has a j pouch. my brother and I had surgery to remove colon at Lahey Clinic outside of Boston, Mass in 1984, The surgery was new. we live in N,C, both have a j pouch. My granddaughter was tested for the gene has a infant and does not have it. my oldest daughter was tested does not have it. since 1984 I have had about 30 bowel blockages and in hospital with eg tube. my brother has never had one. he did not keep his scopes up and had so many poylps , the dr reverse his surgery.He has pouch on outside. he has also developed them in his throat and stomach. he had a lot of surgeries. He can not eat much now and they have done all they can do for him. My mom had almost all of her colon removed except few inches in 1960. She did not keep up scopes and later in life got colon cancer. if you have FAP you must keep up your yearly or 6 months scopes with or without surgery. kathy martin