FAP and the J-pouch

Hello! I just saw this and only "lurk" here from time to time, so apologies.

I was Dx'd with FAP and had the initial surgeries over 8 years ago. I LOVE MY J POUCH.

There is no "magic number" as to when you'll get cancer, but, you will eventually. With FAP, it's not a question of IF you'll get Colon Cancer, the real question is WHEN you'll get it. "typically" the median age is 40, but, there's no magical formula for it or against it. Once the polyps overtake your colon and it can no longer be managed, it's time for it to go; no exception. Which for most us, is fairly quickly once we are Dx'd.

I had complications, in fact I died and am still here. I've had more than one surgery all related in some form or fashion to FAP.........lucky me!

If your on Facebook, let me know.........we have a pretty solid group that will help you with just about ANY question you have.

YES I do THINK it's worth going to MAYO!!! I goto Mayo here in Florida and would strongly urge you too.......

Recovery times vary from person to person, but, from the initial surgery until I started working again was about 9 weeks..........and that was half days, then about another 2 weeks and I was back full time. Keep in mind I had some other complications to boot, and each person recovers different than the other.

I'd use "google" and put in the terms "Familial Adenamotous Polyposis" and see what you get...........check out Mayo's webstie, Cleveland Clinic's, MD Anderson and a few others.........to help educate yourself. Don't simply depend on Doctor's to tell you........for the most part, they are CLUELESS about FAP.

3 years ago, I found out that I have FAP after a scare of pancreatitius (there were polyps in my pancreaus and bile duct) and then had a colonoscopy and was then diagnosed with FAP. I have had the 2 step surgery and have been fine with almost no complications (I had blood clots) but I eat whatever I want (I still dont' eat corn, popcorn, or coconut. And if I do have a flare up or something I use calmoseptine and sit in a hot bath to sooth the butt.

I never had pain before I found out and little pain after the 2 step surgeries. After reading on here I have seen that many people have different outcomes with having this surgery but don't compare your self with UC patients. Yes we go through the same surgeries but recoveries are different. I believe. Again I had no symptoms, pain or anything before I had the pancretitus.

Yes do you own research but watch out. You can only freak your self out reading so much on here and what is on the internet. I know I did and I had nothing to fear. We are individuals and listening to our doctors and trusting them is what is best. My doctor was in Dallas, and he was a specialist and knew alot about FAP that's why I believe I had no issues, because he knew what he was doing.

And don't be on here alot, and if you are don't pysch yourself out. As one person said, if you're on here you are here because you have an issue, problem or need support. People who are healthy and are having success aren't on this site, they are out living!

I was out a month for my first surgery, could of gone another 2 weeks. My stoma was a bit under my belly button and to the right so I wore alot of exercise pants with elastic to pull up over my bag and such. But some people wore regular pants...it's all what is comfortable to you.

But I was only out for a week on my second. And I don't know if you are a girl or a guy but as a girl they took my colon and rectum (beacuse of polyps) but it took a bit getting back into sex, but I have a patient partner and used lube and was fine, I waited about 6 weeks for both. The first surgery because I didn't feel sexy, the 2nd because of the hole and I was still swollen and didn't want to rush anything. My lifestyle is just fine, I do everything, all I have left is a scar.

There is is some other places to look out for cancer with FAP, (throid) and I have yearly EGD's and pouchoscopies just to keep on top of the polyps. I don't care if I have to do this the rest of my life, it's little things to look at to have a long healthy life. Good luck.

hope you have a safe surgery and healthy making recovery!