FAP Daughter of a FAP Warrior

The story of Leah

I am a third-generation FAPer benefitting from my mom’s extensive experience living with FAP. There has been one in each generation since my maternal grandfather mutated the gene. His doctors thought it was IBD and a host of other maladies. He died from FAP-related cancers in the early 70’s when my mom was fourteen years old. Back then, it wasn’t named yet. The doctors mentioned Gardner’s Syndrome toward the end of his life.

The first known use of FAP was in 1976 and the FAP gene was discovered in 1991. As far as medicine goes, it’s still very new. As such, FAPers have to be experts in their own case management because most doctors simply aren’t. At a conference for rare diseases, I met my first acquaintance with FAP who wasn’t directly related to me. He was the one who taught me about having the EGD done during colonoscopies, about how we have to check the stomach, too. That summer during my consultation for my yearly colonoscopy, my doctor said it wasn’t necessary, but I demanded it. The problem is that FAP affects each of us differently, the sole commonality being the colorectal adenomas. 

My mom, a warrior in her own right who has grappled with many doctors over the years, has the kind of story you might normally hear with regards to FAP. She’d lost her father at a young age (common for most first-generation FAPers at the time) and was diagnosed at 29 via colonoscopy. She had Stage I cancer. Because her father was tagged with Gardner’s, she was also tagged with Gardner’s. It wasn’t until I was diagnosed at age 22 via colonoscopy, twenty-two years after FAP entered the medical world, that our diagnosis was corrected. 

My parents raised my brother and me with the knowledge that we could have the gene. We were raised in an open family where questions and curiosities were encouraged, including all about mom’s bowel habits and gurgles. So I was well prepared to receive the news. When I had my first colonoscopy, other doctors croweded the door, trying to catch a peek at my colon. Mom, seeing this, knew she had plenty of time on her hands, so she left to buy me donuts. She called Dad before they talked to her about it, before they finished biposying my polyps, and told him the news.

This will tell you how prepared I felt, and how much of a positive role model my mother has been throughout my life: when I received the diagnosis, my first thought was “Sh**.” And my second thought was that this would be a pun for the rest of my life. I use it often among friends. 

As far as FAP goes, my time with it has been pretty easy, all things considered. At 22, I did not have cancer yet, though my GI said I probably would have developed Stage I within a year. A few months later, I had my colon removed during a laparoscopic surgery, a one-step procedure that gave me a j-pouch. It went smoothly with no major complications (not to say that recovery isn’t extremely painful. Mom had two natural births and even she said that surgery was the most painful thing she’s ever experienced). My mom said later that she much preferred to be on my side of things, asleep on the table. She couldn’t stand the waiting. My dad and Nana had done it once before, so they were veterans of patience, but that didn’t seem to rub off on her. My surgery was 3 hours longer than the doctor predicted because my small intestine wasn’t cooperating. In the 5 years since, I’ve had two bowel blockages, each landing me in the hospital but neither requiring my bowels to be pumped. A liquid diet and proper hydration took care of them within a day. Those have been my only rough patches so far. 

Despite it all, I will say it again: as a third-generation FAPer, I have been extremely fortunate. Not only have I avoided, by some miracle, all possible complications (the body rejecting the j-pouch, the j-pouch twisting, pouchitis, pancreatitis, thyroid cancer, and on and on and on…) but I also have the greatest mentor I could ever hope for. My mom has been through it all, and she is not ashamed of sharing her wisdom. Also, she has lived the life she wanted. I grew up watching her travel for a living, knowing that she could see the world even with her j-pouch, and she could work a full-time job, walk around Disneyland all day without issues, keep herself hydrated without having to go to the bathroom every 30 minutes. When I had surgery, she taught me how to push a pillow into my stomach to make coughing, sneezing, and laughing hurt less. She helped the nurses pull me out of my hospital bed to walk. After a week in the hospital, she snuck a wheelchair into my room and took me to the elevators to let me finally go outside, into this beautiful courtyard the hospital was built around, for my first breath of fresh air a day after it rained.  

If there’s one good thing about FAP, it’s that it brought me closer than I have ever been to my family. Their overwhelming love and support and openness continues today. Most of all, it brought my mom and I closer because there were conversations that only she and I could have, from frequency of bowel movements to gas pains to the dreaded public restroom. Before I went in for surgery, my mom told me to leave my dignity at the hospital door. Though I’m happy to say I’ve since gotten most of it back (bathroom shyness is real, y’all), it was the best advice she’s ever given me. I now teach third grade. I am able to go three hours without rushing to the bathroom. My bowel movements are down to about 4 per day, a major achievement since my former low was 10 per day. I can go to Disneyland without major issues. FAP has become a major part of my identity, to the point where I move my hand to my stomach instead of my chest when I refer to myself. I am still healing in a lot of ways, but with my supportive family and my mom’s inspiring example, I can do it all.