Posted by Sami Kennedy on June 21, 2012
It first occurred to me while organizing the Big Blue Box, a jumbled collection of boxes, bottles, and doctors’ notes. A friend walked into my dorm room as I transferred that week’s supply of pills into my backpack. She already understood the basics of IBD, but I took the opportunity to introduce her to my crew of prescription superheroes.
I was diagnosed with Ulcerative Colitis in 2008 at fourteen. It took just one month. I got lucky. I woke up from my first set of scopes to find out I’d won a ride to the inpatient floor. I was told to expect at least a week-long sleepover. Instead, my body ate up the Prednisone like candy, and I managed to break out after three days. Lucky for the second time.
My first superhero was Asacol. It gave me a sweet two months of remission. I flared again in 2009. This was my worst IBD flare to date, no doubt, but again I got lucky. I avoided an inpatient stay. I responded to Prednisone again. The rash on my skin that threatened to take my beloved Asacol away turned out to be a benign condition. I won’t deny the facts: the pain was unbearable at times, I felt very isolated in school, and I re-flared halfway through my Prednisone taper. I still think myself lucky.
I met a new superhero: 6mp. My parents and I feared it at first. It had the dreaded C word attached to its reputation. It came with an abundance of blood tests and risks. It also saved my colon. I’ve had very few side effects, and none of them significant. I expected nausea or worse to come out and, bam, hit me in the face, but they didn’t. Remission finally stuck around. I’ve had no significant disease activity since 2009.
Through it all, IBD was my secret. Poop isn’t really a comfortable topic of conversation in high school. I hated how my disease had affected my high school social life. I decided I needed to reach an emotional remission to match my physical remission: I would control how my disease affected my life, not vice versa. I joined an online support group. I’ve met and bonded with other teens with IBD. I’m a member of the ImproveCareNow patient advisory council. This year, I’ll be a volunteer counselor at CCFA Camp Oasis. I’ve found my voice, or at least I’m trying.
I have friends without colons. I have friends that dream of remission. I have friends that have dietary restrictions I don’t have or feeding tubes. I don’t pity them, but I do consider myself lucky. Every patient’s story is different, and none of us chose our story ahead of time. We didn’t get to preview our particular path through the disease and approve or veto it. I don’t know why my path has been less bumpy than my friends’. It makes me sad. If I could, I would share my remission with them. I can’t explain why things are the way they are, so I just call myself lucky.
That day in my dorm room with the Big Blue Box, all of this ran through my mind.
“This just makes me feel so bad for you,” she said finally.
The story rushed through my head from the beginning - where I started, how far I’ve come. My story is my own, but my passion for sharing it is about so much more than me. Neither of us spoke for a few seconds.
“I’m okay,” I say. It’s true. I’ve been lucky.