Hi! I am Nolan and I had a Total Colectomy and J Pouch surgery on July 9, 2019 at Dallas Children’s Hospital. That means my colon was removed and a J-Pouch was created. My surgeon was Dr. Schindel. I am sharing my story because my mom always says,”Knowledge is Power”. I am sharing my Knowledge and passing the Power to YOU! It all began at the eye doctor. My eye doctor had suggested to my mom that I get genetic testing because there were many freckles that showed up on my Optomap Retinal Exam. Fast Fact: Many freckles on the eye are an indicator of future colon cancer. I had genetic testing which concluded that I carried the FAP gene. Then I had to have a colonoscopy to see what stage the FAP was at. I had my colonoscopy at Dallas Children’s Hospital and my surgeon was Dr. Andersen. The results of the colonoscopy concluded that although the stage of the FAP was early on, it covered the entire lining of my colon which meant I had to have it removed. What does FAP mean? Familial: means that it runs in families. Each child of an affected parent has a 50 percent risk of inheriting the disease gene. 30 percent of people with FAP do NOT have a history of it in their family. Adenomatous: is a type of mushroom-shaped growth or polyp which may be precancerous. Polyposis: is a condition where 100 or more polyps can form in the large intestine.
“The first step in making the diagnosis of FAP is based upon the family history of colorectal polyps and cancer. The majority (60 percent to 70 percent) of patients with FAP have inherited the gene from one of their parents. Therefore, consecutive generations may have FAP. Taking a careful family history is crucial in diagnosing FAP.
In about 30 percent of FAP patients, the abnormal gene was produced at the time of conception. In these patients, no family history of FAP would be found. All of the next generations are at risk of inheriting the newly mutated gene.”