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I am a FAP survivor

Posts: 20
Joined: Feb 2007

Looking for anyone going through this. I have had 3 surgeries and a permanent ileostomy. My whole large intestine is gone. Have another surgery soon. I am only 39 found a mass in rectum in 2004. Please help

kristasplace's picture
Posts: 956
Joined: Oct 2007

Hi ladybug! When Kathi reads your post, i'm sure she will respond. I am not a perm ileostomy, but i do have a temporary one that drives me crazy. There are many people on here who have perms, and they, i'm sure, will lend you help with it.

I am the same age as you going through stage III rectal cancer treatments now. It's been hard, and i feel what you're going through is as hard as it gets. A permanent ileostomy scares me so much more than getting metastasis. If you ever feel you need to vent, or just talk about the miserable thing, feel free to email me privately.

Good luck, and many hugs,

Posts: 11
Joined: Apr 2007


I was diagnosed with FAP last April (200+ Colon/rectum polyps), and had my entire colon removed in September. I had an IRA, so i still have 6 inches of rectum. I still have to go for lower and upper scopes every 6 months, but so far have had no polyps in the lower stomach area....I am sure as you know, this is the next area that FAP eventually goes after, so I assume you are getting those upper scopes as well.

There have been great results proven with Celebrex and Curcumin significantly reducing additional polyp formation in post surgical FAP patients, so if you have not already done so, that may be something to check out. Have you had any issues with Desmoids associated with your surgery? In addition, were you diagnosed via genetic testing? The genetic testing can be helpful to understand implications for your kids if you have them (typical FAP will show up in 50% of offspring), and then treatment for them can begin early. Also were you diagnosed with FAP (+ 100 or more polyps)or AFAP (less than 100 polyps)? The implications and next treatment steps are very different for the specific one you may have.

Good luck,


Monicaemilia's picture
Posts: 455
Joined: Nov 2006

Hi ladybugg: I also have FAP, dx'd Nov 2005. I have a semi permanent iliestomy (meaning that I refuse to do anything with it as long as I'm on treatment). I have had three surgeries, including a liver resection and am now being considered for lung surgery. The iliestomy does not bother me at all. I invite you to e-mail me on this site if you wish. I'll try to help any way I can. Monica

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