I'm Jenny and I was diagnosed with Familial Adenomatous Polyposis (FAP) at age 8. FAP is a hereditary rare disease that causes the development of hundreds to thousands of colon polyps. An individual with FAP is guaranteed to develop colon cancer at some point in their lifetime, which is why preventative treatment is crucial. However, cancer is able to develop anywhere in the GI tract as well as other parts of the body with FAP. Due to surgeries to remove my colon and part of my small intestine, I was diagnosed with another rare disease: Short Bowel Syndrome (SBS). I have also been told I am at risk for kidney disease and am at greater risk of cysts and tumors due to FAP.
My mother, grandfather, great grandmother, and countless others in my family also had FAP and GI cancers. My mother and I are the last survivors in our family with FAP and I hope to be the one to end FAP in my family.
At age 9, my polyps were starting to turn cancerous and removal of my colon with a temporary ileostomy was decided necessary. I experienced many complications and near death experiences the following year resulting in 4 more surgeries and I was left with an ileostomy for 6 years. After a routine scope and consultation with another surgeon, it was decided a straight pull-thru may be an option. At age 15, I had the straight pull-thru surgery and experienced life threatening complications from adhesions that resulted in another surgery for adhesions removal. My health slowly stabilized over the next 5 years. I was able to graduate with a Masters degree, I have maintained full time employment in the medical field, and am enjoying life as well as discovering new challenges for myself everyday. I required an 8th surgery in 2021 to remove my gall bladder due to gall stones and FAP.
This is my journey with FAP and SBS: recounting memories and experiences, coping with life changes, tackling new challenges, and doing my best to continue to survive. When I was a child, I didn't know anyone else with FAP outside of my family. I hope you'll join me and together we can fight this disease.
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Familial Polyposis Research Fund
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Meet My Family
For a collection of some of my poetry works visit The Poetry Angel
Great to see your picture here, you are beautiful.
ReplyDeleteAw thank you Tracy!
DeleteYo are very inspirational, i was diag with MAP, similar to FAP but different gene! I will contine to follow your bogs/this site. I think we all need to cling on to one another through all the hardships involved. i am due total colectomy in the new year, i have three kids and that actually makes this whole thing much harder emotionally...i had bowel canc when i was preg with my last child..and that's when i found out!! Great!! but so glad people like you do these sites and writing, because it helps not be alone xxx
DeleteThank you so much for your kind words! That's a lot you're dealing with. I wish you all the best.
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ReplyDeleteAll I will say is good on you!
ReplyDeleteI have AFAP btw :)
Thank you! :)
DeleteCheck out this guest post by Daniel Shockley who also has AFAP. Hope you enjoy it as well as the other posts available.
http://lifesapolyp.blogspot.com/2015/03/a-mission-for-early-cancer-detection.html
Jenny, such an inspiration, warrior, student, scholar and I cannot find right words this very moment to say how impressed I am from reading over your family history and journey to 2016!
ReplyDeleteKeep up the good fight and sending Peace with Light filled SONShine 💕
Thank you so much for your kind words! It's my pleasure to share my story in hopes that it helps another make theirs a bit more bearable.
DeleteGlad I came across your blog!! I have Fap and sbs! Life is not easy living with this illness !!
ReplyDeleteI hope you find it helpful! :)
DeleteMy daughter is 16 and just diagnosed with FAP and her genetic testing is positive for it! It has been a journey of uncertainty confusion and miscommunication between doctor and ourselves. Her GI THAT Performed fist colonoscopy removed 5 polyps and said she needs subtotal collectomy, due to many polyps. We are afraid, however trust in God and his grace for sustenance and healing... its reassuring to see you are still surviving after all you went thru! If you can give us any advice with your experience, greatly appreciated.
ReplyDeleteWhat I have found to be essential for dealing with FAP is to go to counseling and stay on top of regular monitoring of FAP. These are our best defenses against the effect of FAP. Best of luck!
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