I was 4 days old in July, 1980 when my adoptive parents picked me up at the hospital in Salt Lake City and brought me home. They had gone through an attorney for a private, closed adoption and knew next to nothing about my family history.
When I was approximately 17 months old my mom received a call from the attorney who handled my adoption. My birth mother had contacted him as she wanted to let him know he should probably inform us she had just been diagnosed with familial adenomatous polyposis (FAP) and had undergone a total colectomy with ileal-anal anastomosis. She told him her father had died of colon cancer caused by FAP at age 36. Two of her paternal uncles, an aunt and a grandfather also had colon cancer in their thirties to forties and were now deceased.
My mom did a lot of research and discussed this information with my pediatrician who reassured her there was nothing to do about it until I reached puberty when I should begin having colonoscopies to determine if I too had colon polyps.
I grew up with the knowledge that I was adopted and when I got closer to my teenage years she explained I could possibly have inherited this disorder. It is a dominant inherited condition therefore there is a 50-50 change I would have the mutation.
Growing up with this disease without any medical history so to speak was difficult and has continued to be a challenge. It is like walking an obstacle course while blindfolded. I have no way to know how FAP has affected my other blood relatives including my birth mother. It’s like a guessing game and every year it could be something new.
I was 12 when I had my first colonoscopy. I had no idea what to expect and didn’t quite understand what was happening. I just knew I didn’t want to have what they were looking for. I don’t remember a lot about that first colonoscopy but I do remember being told I had numerous polyps, the largest of which were sent to a lab to be tested for cancer. Luckily they were benign, and I was told to return in 1 year to repeat the whole episode.
I also didn’t know it at the time but that was the beginning of lifelong medical bills, doctor visits, waiting rooms, assorted lab tests, liquid diets, IV’s, procedures and drinking the most vile concoction known to man followed up with humiliating side effects. I did return to have my follow up colonoscopies for three years but about that time I realized despite being diligent and getting scoped regularly there was still a high chance I would develop cancer at some point in time. At fifteen, I along with my parents, and surgeon made a life changing decision. I underwent a total colectomy with an ileo-anal pull through and J-Pouch formation. It was scheduled for the summer between my sophomore and junior year of high school. The first half of the surgery they removed my colon and created the J-Pouch from the end of my small intestine to act as a replacement for my colon. In order for this to heal prior to allowing waste material to flow through it and minimize the possibility of infection, I had a temporary ileostomy for six, very long weeks.
I had to learn how to take care of my stoma. The waste contents at times were so acidic, if any leaked around the seal, it would literally burn my skin. I tried to be brave but those blisters where extremely painful. I learned very quickly what foods contributed to this and avoided them at all costs. It was an emotional roller coaster ride as well. I remember trying to venture out and act normal in public but it was embarrassing to have the bag attached to you suddenly fill up with air and protrude under my shirt! It was really hard to hang out with my friends at the pool and not be able to swim.
After the end of the six weeks I returned to surgery and had my ileostomy takedown and was ready to use my new colon! Everything was good until I ate or drank something that did NOT agree with my new pouch and the quick transit of food through my system and I was on fire!! That took me down the road of trial and error of learning what I could and couldn’t eat, as well as which products worked and which didn’t. FYI: Citric Acid = NO, and Desitin = YES.
Looking back I understand I was a little naive as I had high hopes that once my colon was removed my FAP would be gone and I wouldn’t have to undergo any more colonoscopies or surgeries. Within a couple of years of my surgery FAP had reared its ugly head again. I never dreamed I would develop extra-colonic polyps, those that form outside of the colon. I have them in my stomach and small intestine and to this day I still think eventually I will have polyps on my tongue though it hasn’t happened yet, thank goodness!
I had to have an ampullectomy as I had developed a large polyp at the “Ampulla of Vater” in non-medical terms, where the common bile duct and pancreatic duct empty into the small intestine. Later, I had to have my gallbladder removed as they thought that was causing my episodes of pain, nausea and vomiting. Actually, when the symptoms continued they discovered it was due to excess adenomatous tissue forming within the pancreatic ducts, causing my pancreas to be very unhappy. They placed stents and I continue to take pancreatic enzymes with my meals PRN. I have learned that this particular organ does not like to be messed with! Each subsequent ERCP I have developed pancreatitis. NOT FUN! I have had a couple of bouts of C-Difficile and some pouchitis also included in the NOT so fun category.
FAP has changed my life in several ways. One of the biggest decisions I ever had to make was when I chose not to have children. This was a very difficult, personal choice but at age twenty one I had my tubes tied. Knowing this is a dominant inherited condition, for me the risk was too great. I can handle having FAP and all that goes with it, but I felt I couldn’t put someone else through it knowing the toll it has taken on me and my family.
One constant throughout my adult life has been the ever present worry of health insurance. No matter what your politics may be, I would hope that others will be able to understand how grateful I will be when the pre-existing condition goes away come January 2014! Unless you or a loved one has gone through a chronic illness requiring continuing surveillance fraught with frequent bouts of complications it is difficult to explain. There have been so many times I have had to go without the procedures I need to ensure my FAP is under control until the year waiting period is over only to lose my job just prior to the expiration due to an extended hospitalization. Once a new job is found I have to start the whole process over again.
There have been several times I have had to go without insurance. During those times I can’t see a doctor, get any tests or the prescriptions I need. I’ve tried to obtain personal insurance only to be denied. Even with insurance the high deductible and co-pays are at times cost prohibitive. My husband and I have reconciled ourselves to knowing we will always be accruing new charges as soon as the previous ones are retired. It is so hard to keep up on my FAP surveillance and try to stay cancer and worry free and not drown in medical debt. I don’t want to die of cancer so I will always owe either a doctor or a hospital, usually both. It isn’t a choice I want to make but it’s a choice I have to make.