familial adenomatous polyposis (FAP)

i was diagnosed with FAP 5 yrs ago when i was 35. I had 96% of the large intestine and colon removed. I had a osomy bag for 12 weeks and then had the reversal so i could use the restroom SOMEWHAT normal. I go every year for upper and lower oscopy. With FAP it never goes away I currently now have poulips in my upper G.I. so im gonna turn to mayo for help

Any of those clinics are great. I was Dx with FAP in 1996; total colectomy w/JPouch. I am currently seen at Mayo Jacksonville. The best thing you can do is educate the both of you on FAP and extra colonic conditions that come with FAP.

Mine is strange. It presents like FAP but the test for it came back negative. I have polyps in the upper also and they have gone from normal to mild dysplasia. I have a 4 year old and am hopeful I haven't given it to him. Appt in Scottsdale July 9th

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

Hello @martinkda and welcome to Mayo Clinic Connect. Thank you for joining this discussion and sharing your vast family history with FAP so that others can learn from your experience.

What you've shared is really so important with regard to follow up care it seems. Can you share what you do, personally, or what has been recommended for you in terms of frequency of scopes?

I HAVE FAP WITH JUST ABOUT ALL THE OTHER PROBLEMS RELATED TO IT. I JUST HAD MY SCOPES DONE AND 5 IRREGULAR FRAGMENTS OF PINK-TAN TISSUE RANGING FROM 0.5-6 MM. CAN ANYBODY TELL ME WHAT IS THIS

Hi @kevintina0702, it sounds like you may have received your pathology report before having an appointment with your doctor. Only your doctor can interpret the findings of your endo- and colonoscopies.

When is your appointment to review the results with your doctor?

Hi dont know anything about the disease but live in Maryland about 45 minutes from Hopkins. If you find yourself in Maryland would offer you a place to stay.

Hello everyone.
My name is Sotia, 32 years old and I am from Cyprus, which is an island in the Mediterranean Sea (Europe).
My grandfather (from my mom) died at age 40 from colon cancer in 1980 and after doctors here saw more members of his family died of the same reason, a gastroenterologist suggested that all relatives should check their colon and that this must be hereditable (this was in 1990 approximately). When all family had colonoscopy, it was found that more than 50% had the mutation (FAP), including my mother. All the family members with the FAP at that point had removed most of their colon (left about 15cm) and had surveillance each year through colonoscopy. My mom by the age of 40, in the scheduled colonoscopy found that one of the polyps got malignant and therefore should do the pouch surgery, which at that point no surgeon was doing it in our island, so had to go in London with my father. She stayed in a private hospital for about 6 weeks, thank God had no metastasis, and had the ileostomy bag for 2 or 3 months. Then she got back to UK to reverse back the bag. I have to say the truth, there were many complications and change of her lifestyle after that surgery (pouchitis once in a while and quality of life reduced). Despite that, polyps in the duodenum started to rise, which we thought were under control with her gastrenterologist, until September 2020, which after unbearable stomachache, we discovered that these duodenum polyps metastasised in her liver and died next month. I have two younger sisters, one of them has the FAP. Until our mothers passed, we thought that yes we may suffer from the first surgery that we both did and might do another one (pouch) to remove all colon, but with the colonoscopies and the gastroscopies we will be ok. After this tragic incident, we do not know if we are going to die in our 50s even though we are responsible enough to do all the tests that doctors recommend. Is there any other clinical trial to prevent the second surgery (pouch or ileostomosis), so we can enjoy life and not to be worried every time we go for a colonoscopy?
Thanks for reading and thanks for your time.

Hi Sotia,
I have a similar genetic colon issue; mine is MUTYH-associated Polyposis (MAP), which is inherited a little different from FAP, but the end result is the same. I am 2 weeks out from surgery to remove my colon. I'm in the US, and had a robotic assisted laproscopic total abdominal colectomy with ileorectal anastomosis. No bag or further surgery needed. They attached my rectum to my small intestine. I'm 66 yrs old and had been having annual colonoscopies to remove polyps. My colon stopped cooperating, so surgery was needed. I am recovering well. I stayed one step ahead of it. If possible, this is the way to go. I'm already back to driving, walking, and introducing fiber slowly back into my diet. Only stayed 2 days in hospital! I will need to continue checking my rectum and stomach annually. Along with a few other organs. But, there is hope! Please let me know if you have questions. Bev