J-Pouch and adenomatous polyps

I had a total colectomy with ileorectal anastomosis (robotic, laparoscopic) in Aug 23 due to MAP (biallic Mutyh associated polyposis; similar to FAP, but inherited in an autosomal recessive mutation). I have no pouch or colostomy bag. They connected my rectum to my small intestine. I'm not sure about J-Pouch conversion, but maybe this would be an option. I don't worry about colon polyps anymore (had 147 all told throughout my life and they were all the bad kind... I just kept having colonoscopies every year until it stopped being a viable option). Hopefully, you will get answers soon and wishing you well. Let me know if you have any questions.

Monitoring your GI track (EGD and colonoscopy) yearly and having the polyps removed can delay the colostomy, as can taking medicine like Sulindac can slow the polyps growth.

If your polyps can't be controlled by removal or they become precancerous, then yes you'll need to have your large intestine and your rectum removed. You'd get an Ileal Pouch-Anal Anastomosis (IPAA). You may have an ostomy bag for a couple of months while your body heals and then a 2nd surgery (way easier) to connect your pouch.

You'll still need EGDs and pouchoscopys every year. (Sorry)

I assume you're getting it done at Mayo, so they've done a DNA test, checked for Gardners Syndrome (a sub APC gene mutation), and thyroid nodules.

If you want to know the outcomes after surgery, ask your care team, Mayo had endless data on IPAA. They can tell you how many bowl movements per day to how many had pouch issues.
*I think FAP people have fewer pouch and digestion issues than others getting the surgery.

Check out different support groups online like j-pouch.org. They have a little section for FAPers. It can give you insight into having a pouch, just remember that many in the group have other diseases that impact pouches in ways that are not common for FAP and we all have similar but different experiences with our pouches.

I have FAP and had an IPAA decades ago at Mayo, I was share that you can have a full adventure filled life. I've road thousands of miles on my bike, went on week long backpacking trips into the mountains where I dug a hole to poop or carried it out with me and travel the world. I do not have kids, I was worried pregnancy would mess up my gut and possibly my sphincter muscle, I don't want to wear a diaper or risk my quality of life. I also don't want to pass this gene on to others since I am denovo FAP and not inherited from my parents.

Having a pouch is so much better than my colon, I have less pain and fewer food issues. I spend way less time on the toilet or laying on my bathroom floor.

I don't regret the surgery, shitty things in life often have amazing silver linings. Plus my other option was to be dead at 19, kind of puts things into perspective.