As I write this, I am aboard a plane returning home from Baltimore following a meeting with the Food and Drug Administration. Joined by a panel of experts in hereditary colon cancer, including Steve Erdman, MD (Pediatric gastroenterologist; The Ohio State University College of Medicine), Heather Hampel, MS, CGC (Genetic counselor; The Ohio State University Wexner Medical Center), and Susan Peterson, PhD (Behavioral scientist; The University of Texas MD Anderson Cancer Clinic). We discussed with the FDA the unmet medical needs of young people with FAP. Our hope is to open new pathways of drug discovery that will allow for the delay of colectomy. My role was to bring into focus the patient perspective and add imagery words like excessive wind, incontinence, increased bowel movements, and decreased bowel control.
My time in Maryland was only 36 hours. I took two pairs of underwear. I arrived late into Maryland and had dinner with the team around 9:00 PM. Dinner did not set well with me and, out of concern for what might happen when the roads of incontinence, increased bowel movements, and decreased bowel control intersect, I slept with a towel draped across the bed under my midsection.
I spoke candidly to the representatives of the FDA about this and asked them to consider that, at 38, I have 25 years experience living without a colon and am comfortable enough with myself to speak openly about what life post-colectomy is like. I asked them to imagine being 15 years old and dealing with this. To make it easier to fathom, I recounted a personal experience that happened shortly after my colectomy. I was 16 years old and still exploring my new body. My journey towards a ‘new normal’ was still in its infancy. I was about three days into a week long camp. I was sleeping on the top bunk in a house with about 40 other boys. I awoke In the middle of the night with urges to go to the bathroom. As I traversed the spans between dream state and consciousness, I realized very quickly that I had completely lost bowel control while I was asleep. Frozen stiff, I began putting together a plan for dropping off the top bunk, gathering my sheets and clean clothes, and sneaking off to the showers. Once there, I had to clean myself, my clothes, and my sheets and then quietly return to my bed. I then set about hiding any evidence of this tragic event and hoped that, in the morning, I could discreetly solicit the help of a camp counselor to exchange my bed sheets. I did not sleep the rest of the night for fear of this happening again.
I laid out in plain detail what it was like to be 18, in college, and dating. I joked that, at some point along the dating continuum, someone ends up cooking someone else breakfast. For me, this meant either having a difficult conversation of what might happen in the middle of night after we go to sleep OR gambling that maybe, just maybe, the stars will align and everything will be alright.
The cold hard fact of life with FAP is that, whether you like it or not, you will have a colectomy if you want to live. While the colon may be referred to as the organ of ‘social convenience’, no one should ever tell you that life post-colectomy is easy. But equally true is that you get out of the experience what you put in. I am extremely stubborn and have high expectations of life. I refuse to give in to my disease or my j-pouch. I backpack, bicycle, travel, and do all of the things I love…j-pouch be damned.