I will never forget October 16, 2011 for as long as I live. I had been ill for 2 years, being passed around from one doctor to another, test after test, and finally was approved for a colonoscopy. I was only 40 at the time so insurance didn’t feel it was necessary. I was 37 when symptoms (bloating, rectal bleeding and diarrhea) started to be really bothersome and had no issues before then.
After my colonoscopy and endoscopy the GI went to my younger sister, who was in the waiting area, and hands her a printed article (piece of paper actually) and told her he’s pretty sure I have a rare genetic disease called Familial Adenomatous Polyposis (FAP), then walked out. Next thing I recall after waking from sedation is her standing by me holding my hand tightly in the recovery room and I could tell she had been crying. Then a nurse coming in saying they needed to get some blood from me for tests that I would have results for in 6-8 weeks…
At this point I was still clueless. We got home and she kind of went over the info given with me. That 1000s of polyps were found in my colon and some in rectum and that I may have colon cancer. What a shock that was!!! As far as I knew there was no family history and I was too young for that sort of thing. I had a consult with the GI the following week and was scheduled to consult with a surgeon who got me in the following week. I had a total colectomy on Nov. 6, 2011 without even having the blood work back since there were so many polyps and a few of those biopsied were cancerous.
A few weeks later, genetic testing came back positive and was told my 3 daughters had 50/50 chance of carrying this gene and needed to be tested. Hearing that was a mothers worst nightmare after reading up on this monstrous disease. Of my 3 daughters, my oldest, who was 23 at the time, tested positive. The guilt was HORRENDOUS, and still is to this day… Thank God she is a strong and understanding person that I am blessed to call mine and tries her best to convince me that she holds no blame.
We knew my mother had diverticulitis and had many colonoscopies before this time and no polyps. So the next person in question was my biological father. Needless to say, he had scopes done and genetic testing done soon after my results and he has the dreaded gene. His scopes all looked great, which was a blessing. But that also meant that my half sister, 31 years old, and her 2 daughters, ages 1 and 11, had to be tested. All 3 were positive… My sister and father had few polyps in colon and stomach. So thankfully, no surgeries are needed at this time.
I was still having a lot of bleeding and rectal pain after colectomy and on Feb 1, 2012 I was back in the operating room having a proctolectomy because more polyps were found in rectal area, so now I have a permanent ileostomy.
My daughter, Jessica had already had genetic testing and scopes in December of 2011 and had hundreds of polyps. The GI specialist recommended she have her colon removed because of so many polyps at her age. She also has 2 sons that are 7 & 8 that we will be having tested this winter (Prayers Requested). She waited until April 2012 to have total colectomy, due to me recovering from back to back surgeries, and had a temporary ileostomy for 3 months then had additional surgery to make a j-pouch, which is a internal reservoir, in hopes of not having a permanent ileostomy. At this time, she is having a lot of issues with the j-pouch and the only solution is a permanent ileostomy. She is not ready to undergo another surgery at this time. She will know when the time is right on her own terms, and as her mom, I can only support her decision. May of 2013, she had to undergo a complete hysterectomy due to FAP so we are blessed to be early aged Mommies and Gami’s! I truly believe God gave us those boys early for this reason…
All we can do is stay on top of this disease with regular scopes, ultrasounds, and every other thing that is necessary. I see an endocrinologist every 6 months for scans on my adrenal glands because of masses that are being monitored, but my biggest struggle is severe fatigue and dehydration. I feel as though our family is fortunate, because a lot of our FAP FAMILIES have a lot more severe issues and even deaths.
This picture was taken at the UNDY 5000 5K, 2013 held in Nashville, TN yearly. And I’m proud to say our team of 20+ “FAP QUACKS” came in 3rd place as far as raising money for a cure for colon cancer out of 50+ teams! We have so much support from Family and Friends and appreciate every step they take with us. And a special THANK YOU to my sister, Misty, for taking care of me and my daughter after all of our surgeries!! Some days if it wasn’t for her being there, and for my daughters and grandsons — my state of depression and guilt was so severe that I honestly did not want to live. I still have some bad days, but nothing that I can’t overcome. And thankfully, more good than bad. During this time our Faith and Family has became so much stronger and our Family motto is LGLG (Let Go~Let GOD), because without Him, nothing is possible!