Familial adenomatous polyposis (FAP): What Prophylactic options?

Hi, I found out at the age of 51 that I had FAP and would need to have my colon removed. I would be happy to share my honest story with you! Had it not been for A) my fantastic dr & team at Mayo and B) my supportive loving family, I don’t know if I would have made it through as successfully. I am so fortunate, I do not have to wear a bag, my dr was able the take out the colon & connect straight to the rectum, but I am always having to be checked & scanned for more FAP throughout my body. After surgery it took 2 years to feel like my old self, but I got there! You have to adjust everything in your life, not just food, but where you will be, how far from a restroom. Always. People do not always understand. It has been 9 years since my surgery and I live each day as a true gift. I never take anything for granted, and waste zero time on friends or family that zap my strength. I wish you the best, you will get through this, one day at a time!

Welcome, @cmankin1. I moved your post to this related discussion:
- Familial adenomatous polyposis (FAP): What Prophylactic options?https://connect.mayoclinic.org/discussion/fap-prophylactic-options/

I did this so you can connect with others living FAP like @rashida @bevjoy @tracy326 and @nanadana.

You might also appreciate this information from Mayo Clinic
- Familial adenomatous polyposis https://www.mayoclinic.org/diseases-conditions/familial-adenomatous-polyposis/diagnosis-treatment/drc-20372446

When will you have genetic testing? Any questions as you start to dive into the information?

Hello, I recently had a positive Cologuard test. So, then I had a colonoscopy. They found 15 polyps and I was diagnosed with Familial adenomatous polyposis. I found this out a little over a week ago.
They are setting up genetic testing. I have been trying to read up on it and try to wrap my head around it. but I would like any advice or tips from people who are familiar with it or has also been diagnosed.
Thanks for your time.

@colleenyoung no, I haven’t had the CT scan. I am not too keen to go for it anyway, because I had an allergic reaction to the contrast I had to drink the last time I had an abdominal CT scan, about ten years ago. The surgeon and my family doctor have not mentioned it again either so I am assuming they don’t think it’s necessary to pursue it. 🤷🏼‍♀️ I have been to my family doctor twice since I had the MRI, and had a phone consult with the surgeon who ordered the MRI but each time forgot to ask why he had recommended the CT scan. The surgeon just ended the short call by saying my liver and pancreas look fine on the MRI and “as a surgeon there is nothing” for him to do. Go figure what that meant. 🤷🏼‍♀️

I still would like to know what a CT scan could show that an MRI wouldn’t; doesn’t an MRI show more detail than a CT scan?

@rashida, any update? Did you have the CT scan? How did it go?

I'm sorry you have FAP. I had a total colectomy 2 years ago. I really didn't have a choice. I have MAP (Mutyh-associated polyposis) which is kinda a sister to FAP, but runs in a recessive genetic pattern. I have both (biallic) of the most common mutyh genes. Someone with 1 gene has a slightly higher risk, but MAP has 2 genes and a 100% chance of colon cancer.

My total colectomy with ileo-rectal anastomosis was laproscopic, divinci robotic assisted. My small intestine is connected to my rectum internally, so no colostomy bag.

At that time, my intestine was so tortuous (long and twisting), that my colonosocopy was incomplete due to this issue. For 2 years, I was producing precancerous polyps that they couldn't reach, no matter which scope they used.

After my surgery, (158 polyps removed during my lifetime), I was so relieved to rid myself of this burden. I live a completely normal life in terms of activity, travel, etc.

My diet is my most pressing issue. I can't eat certain foods like too much spice or leafy vegetables. If I do eat irritating foods, I get too loose stools which causes irritation upon passing them. A sore butt!

I do eat fiber cereal with fruit a.m. and p.m. as this helps add bulk without the irritation. I've also had my gallbladder removed in 2008, so that comes into play also with bile acid dumping if I eat too much fatty foods.

All told, I am very happy with the outcome. Having gone thru a lifetime in fear of colon cancer, this released that pressure... I do have annual sigmoidoscopy (even tho I don't have a sigmoid, they check the rectum and the illium anastomoisis connection. I also have an upper endoscopy each year. MAP causes higher chances of other cancers, so we monitor breast (mom died of breast cancer in her 50s), thyroid ( I have solid nodules, but they're too small to biopsy).

I hope this helps. Please let me know if you have questions.

Bev

@colleenyoung thank you for the FAP information link. I suspect I may have a desmoid tumour.I had an abdominal MRI done recently and the surgeon who had ordered it now wants me to have an abdominal CT scan. I keep forgetting to ask my doctor and the surgeon what can a CT scan show that an MRI wouldn’t? I have always assumed an MRI shows more detail than a CT scan. 🤷🏼‍♀️

I am reluctant to have the CT scan because the last time I had an abdominal CT scan I broke out in hives after drinking the CT contrast and was told I may be allergic to it, albeit not anaphylactic.

@nanadana, welcome. You're asking good questions. I'm tagging a few members who have experience with a colectomy like @hopeful33250 @slippinjimmy @verol65 @rjjacobsen. They may be able to share some tips on how to prepare as you consider getting a prophylactic colectomy.

Like you, @tracy326 also has familial adenomatous polyposis.

@nanadana, according to Mayo Clinic, annual exams and genetic testing are important and you're doing that. Sometimes surgery is recommended:
- Familial adenomatous polyposis https://www.mayoclinic.org/diseases-conditions/familial-adenomatous-polyposis/diagnosis-treatment/drc-20372446