Guest Post: FAP Explained
Category: Guest Posts
Something that I don’t know enough about is FAP. So many IBDers and people with FAP cross paths due to ostomies, but I never actually learned about FAP. So….here is some info on FAP.
Currently looking for someone to do a guest post on their experiences with FAP.
June 29th, 2012 at 2:27 pm
Awesome! You mean to say life goes on after ileostomies??
hehe
June 29th, 2012 at 2:37 pm
I have FAP too and it’s great to see it being discussed in this forum. It’s nice to have the opportunity to share info as i don’t often talk to anyone with FAP, and would love the chance to converse more.
July 3rd, 2012 at 10:47 am
Lol. EXACTLY!
July 3rd, 2012 at 10:48 am
I feel like FAP doesn’t get enough air time. Its out there, as an IBDer I’ve heard about it, but there just isn’t enough info. I thought that more people should know about it. Feel free to share your info and stories.
July 3rd, 2012 at 12:31 pm
I am 40, and was diagnosed at 8 with FAP, I had my colon removed then, and as my symptoms (blood loss, diarrhoea and terrible pain) worsened I had a permanent ileostomy in 2000. It changed my life in many ways, most positive. I am now suffering from adhesions and just diagnosed with severe endometriosis. I live in London but am Irish.
Danielle
July 6th, 2012 at 8:47 pm
This is a response to Esten and Jackie; separately. I have FAP/Gardners Syndrome (which comes first? is the great debate and what is the true truth about it… another great debate)… Esten, you mention FAP being hereditary, but you don’t mention other family members. Infact, the reason you were diagnosed was due to the tumor in your jaw at the age of 10… I imagine you are very familiar with all of the questions asked about family history: diabetes, epilepsy etc. But, are you the first in your family diagnosed with FAP? or are there parents, grandparents who died of cancer of the colon or undiagnosed disease? I’m also sure you are aware of the stats: 50% chance of transmitting the gene to your children, meaning that someone before you must have had the gene (one of those people must be one of your parents. If your grandparent didn’t give their FAP to your parent, you won’t have it…) Truthfully, I believe that is a super underestimate of transmission rates. Of the offspring of my grandmother who died very young of that unknown disease when my father was very young (my father died at the age of 34)– 2 sons, 6 grandchildren, only one was born without the gene; my older sister… What is that percentage rate? When my younger sister developed Thyroid Cancer in 1996, I did some investigations. A group of researchers in New Zealand claimed that FAP fell under the umbrella syndrome of Gardners explaining that, if you have FAP/Gardners Syndrome you have the hightened risk of Osteomas, Rectal Cancer, Thyroid Cancer, “clubbing” and who knows what else. However, the American Medical Association refuted those claims due to too small a research sample… My uncle who was an Internal Medicine Doctor in New York claimed after Beth developed Thyroid Cancer that he was sure that my cousin Stacy died of FAP/Gardners Syndrome related Brain Cancer…
Jackie, the reason there is so little airtime dedicated to FAP/Gardners Syndrome is because there are so few of us… There are so many more people with Crohns Disease… How about this for a statistic: Of the people diagnosed with Cancer of the Colon, only 1 percent have FAP/Gardners Syndrome… While the recovery rate of those diagnosed with “normal” colon cancer is very high if diagnosed early, supposedly the mortality rate (those who die) of those FAPs diagnosed after the discovery of Colon Cancer is less than 10 percent… The metastecies are too rapid. My J-Pouch surgeon and expert and supposedly #1 in the world told me, “you can wait for the surgery, HOWEVER, the second one of your polyps in your rectum converts to cancer, IT IS ALL OVER!”
September 20th, 2012 at 7:58 pm
Hello! Over the past year, I have visited your site numerous times and found it really useful throughout my F.A.P. related proctocolectomy recovery. I just stumbled across your blog again and was pleasantly surprised to see a post about F.A.P. Thanks so much for helping to raise awareness about F.A.P. and reminding the jpouch and ostomate community that us F.A.P.ulous people are also members! To help further raise awareness about F.A.P. and strengthen the online F.A.P. community, I have started a Youtube channel where I explain the disease and talk about what’s involved with it. Feel free to check it out! http://www.youtube.com/user/fapuloustv?feature=results_main
September 20th, 2012 at 9:10 pm
No prob bob. I realized that I didn’t know anything about FAP even though I have friends with it. I think its helpful to continue to educate everyone that there are numerous diseases that attack the bowels. Sometimes we all get so selfish and forget!
December 6th, 2012 at 3:44 pm
The comment above was my first comment…
Ross