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I was wondering if anyone here has familial adenomatous polyposis. I was diagnosed with it in 1997 and have since had two J-Pouches created. Now with all the test I have to undergo, my veins are ruined. I am having a port put in this coming Wednesday. My Mother and brother both had it but have passed away. I do not know another soul that has it. I am in the lower percent that have the spots on my retinas and have had both the major and minor ampulla varta removed because of the polyps growing on them. I have had many polyps removed from my duodenum. Now it seems I have something growing inside my liver, hence my oncologist urging of ther port. I am just wondering how others are coping with this hateful disease.
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I have had FAP since 2010. The doctors found it in me after a pancreatitis where there was polyps in my pancreas and bile duct. It wasn't in my family, after Checking them and family history. I have had both surgeries and have a Jpouch. Had a blood between surgeries after testing my Jpouch. So I had to have the Jpouch for a year and 3 months instead of 3 months. I have been fine. Good luck!
I looked for FAP support groups and dind't find ones that were devoted to that alone. So my wife set up a site for just that purpose, support for those that have it, their families and friends. My wife is a counselor and thought this would be a great way for me to get emotional support and help others. If anyone is interested, please have a look.
http://www.familialadenomatouspolyposis.com/
Last edited by David1969
Hi David I found out in 2005 that I also had this horrible disease. I dont know as much as chuckus but I am here if you need help ro have any questions or just want to talk, I have a polyp on my major too and I am not certain of whats going to happen but I ope it is going to be a easy removal. Maybe you can help me understand what removing the major ampulla is going to be like for me, Anyways its good to have you here and feel free to ask anything, chuckus is the FAP wiz so he knows probably more then drs themselves lol, he is a great help, take care
Hi David,

I don't know of you're still reading these threads but I just wanted to say I was diagnosed with FAP in 2010 (I was 23 at the time). If you need to vent or have any questions please feel free to send me a message!

Agreed, this condition can be frustrating. Since my FAP diagnosis I had colon cancer and thyroid cancer, and have polyps in my stomach and duodenum.

It's not easy but it might make things eaier to know you're not the only one!
Thank you Zee. I am sorry that you have been through so much. Like you I have many polyps in my stomach and duodenum. I did not even know about problems involving the thyroid until I went to the Cleveland Clinic in 2010. 12 years after I was diagnosed with FAP.
You are obviously a very strong person and a source of inspiration for everyone! And if you need to vent or just talk, feel free to message me. Please vist our new FAP support group site and share your story. http://www.familialadenomatouspolyposis.com/
Thanks, Dave

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