Hey Sam,

I was diagnosed with FAP a few years ago while pregnant with my now 3 year old. She also has FAP. It was scary at first, they throw a lot of stuff at you at once.  The hardest part was the surgery. I underwent a total proctocoletomy with J pouch creation in one procedure.  They created an illeostomy while my pouch healed and then six weeks later they connected my pouch and got rid of the illeostomy.  The surgery really wiped me out for probably a good 3 months. Learning what to eat again was a slow process, but now after almost 3 years with my pouch, I am back to "normal"! I am currently pregnant so that changes things a bit. But prior to my pregnancy I completed a half marathon and led an extremely active life. The biggest struggle now is to stay hydrated.  I do have to watch my diet and I avoid certain foods that irritate my pouch.  But I cannot complain!  Just know that it will get better after surgery, it takes some time and is painful, but the alternative is way worse.

After the initial surgery is over and your healed there are routine scopes and procedures you have to keep up on. FAP can cause cancer of the thyroid so you have to get that checked once a year. The only major organ affected is the duodenum and pancreas.  So every 6 months I undergo an upper scope to check for adenomas in my duodenum and ampulla, and also have to check my pouch for the recurrence of polyps there as well.

This is just a super quick overlook of my life with FAP. If you want anymore detailed information or have any questions feel free to ask. I have done extensive research on FAP and have seen quite a few specialists.  As long as we stay ahead of the disease our prognosis remains pretty good! Surveillance is key.

Sam, I hope your procedure goes well...be thinking of you.

Sandy, I enjoyed your post.  My daughter, age 11, was diagnosed with FAP via genetic testing...the youngest of my three children and only child with the gene.  She has her surgery coming up on Nov 2nd...colon and rectum removal, j-pouch creation and temporary illeostomy.  She is very fit and athletic, so I'm glad to read that your jpouch hasn't slowed you down.