Running with Ulcerative Colitis

The Diagnosis

There was once a time when I could run a 5:20 mile. That was my PR through the second half of high school. I hung on to a four-year varsity standing in cross-country and track between two different schools in two different parts of California. I had a handful of small colleges looking at me for scholarships. And when I did end up at an NCAA Division I college with a somewhat solid running program, I could have walked on as a freshman and might have even excelled.

There was also once a time before fast miles and college prospects when I spent the majority of my day in the bathroom. Diarrhea was flowing uncontrollably, blood was showing up where it shouldn’t, I was barely tipping the scale at 100 pounds as a 5-foot-6 incoming high-school freshman—and I had zero clue what was happening to me.

Around the same time, there was a track coach and family friend who, during a middle-school meet—my first organized meet—turned to my father in the stands and said, “She’s running for me in high school.” I managed to lead my little private school team to a handful of victories prior to these unexplained symptoms completely overtaking my body and throwing my young teenage world into a temporary tailspin.

Back then, we didn’t know I had ulcerative colitis. My parents and I didn’t even know how to pronounce it at first. Those horrific few months leading up to high school, where I literally ate Saltines and choked on the embarrassment of potential accidents in public places, were when we found out this thing living in me was more than just a “stomach bug.” And thankfully for my tiny little runner body, nailing swift, effective treatment worked within hours upon swallowing the first handful of pills. Now that I was healthy again, colitis was out of sight and out of mind. I could just focus on school and running.

I cruised through high school, set a few course records in cross-country and hung on for dear life to make it to the big CIF state championships in Fresno. I had really discovered running as something I was good at.  It ran in my family (yes, pun totally intended!); my father held the 800-meter record at his high school for more than 20 years, and I can count on one hand the number of meets he missed during my high school career. I was good at running because my father was good at running. But in high school, I can’t say I necessarily enjoyed the grind that had become so much of who I am today.

The Flare Of 2006

It wasn’t until the summer after my freshman year of college in 2006 when I got really, really sick again due to colitis. I had done my fair share of partying, and since I was able to control the disease so quickly with the right treatment in high school, it was still out of sight and out of mind. I hadn’t a clue what I was dealing with; I just knew I took a few pills in the morning and I was all good. So of course, I thought I could be all good without them too. Wrong.

My ignorance to my own body, combined with skipping my medication, sent me into the worst summer—and subsequent year of pharmaceutical cocktails—of my life. I lost 20 pounds overnight it seemed, bathroom trips were topping off at 40+ a day, my old drug could no longer combat my aggressive symptoms, and I was losing so much blood that I was deathly anemic for several months.

It took a solid year for my gastroenterologist and my body to agree on what was going to work long-term. In the interim, running was obviously halted, and trial drugs like Prednisone and a pill that made me vomit every night, on top of diarrhea, were my life. Once we did finally land on a new potential for long-term treatment that seemed to be effective, my symptoms, again, ceased within a matter of 72 hours. I’m lucky that, now 10 years later, I’m still in remission because of it. But it took a load of sweat, blood and tears to get me here during that dreadful year.

One Half Marathon, Then Some More

Once I stabilized my gut, my psyche and my life, I knew that colitis was not only here to stay, but it was also something I needed to educate myself about. Learn about. Know about. And talk about. I attended a Crohn’s & Colitis Foundation symposium, where I was introduced to Team Challenge, a fundraising and training program in its inaugural year that was taking runners to run a half marathon in Northern California. “Huh…I’ve never run a half, why not?” I thought to myself. My only understanding of myself as a runner up until that point was still just being naturally talented. I had zero clue just how much the sport would deeply influence the person I am today—and play a tremendous role in reclaiming my life with this disease.

I was still feeling a bit of the aftermath of being essentially out of commission for a year, plus I was trying to catch up at school after missing a semester to recover. Training came and went, and I ended up running that first half marathon fairly easily, finishing in 1:45. I was one of the first finishers for Team Challenge, and something inside me lit up. I was suddenly running for something … I was running for my health, and I was running to prove that I would never, ever let myself get that sick again.

The author (far right) hanging with the “colitis crew” after finishing the Rock ‘n’ Roll New Orleans Half Marathon. Photo: Courtesy of Caitlyn Pilkington

As I started to cross more 13.1 finish lines—I completed my fastest half in 1:33 this past February with Team Challenge, my seventh season with them—I felt my reasons for running and desire to get faster expand. In high school, getting faster meant validation from others—coach, my dad, my teammates, non-running friends, CIF competitors—that I belonged on the varsity squad. But now, getting faster meant validation that my gut could not control me. It was validation from myself to myself, a promise that I would never forget that I do have control over my body, how I treat and what I say about it. Running hard and running fast, over time, stopped being an unhealthy obsession with control and began to turn into a voyage to reclaim my life and my health.

The Marathon That Saved My Gut—And My Life

One of my biggest struggles with running was—and still is—managing my colitis gut over the course of double-digit miles. Not only does this mean finding the right regimen of nutrition to not upset my stomach, but it also means rewiring my brain to accept food as fuel, not an enemy, every single day of my life. For years, up until very recently, I struggled with varying degrees of ‘disordered eating.’ What started as a strictly competitive running-fueled obsession with food became a sick obsession of how I could twist my colitis into something to help me monitor caloric intake and weight. I knew which foods and drinks triggered a ‘reaction’ following my 2006 flare, and I slipped down the slope of using this to my perceived advantage when I started running again. I would cringe when people said I had the ‘skinny disease,’ but instead I secretly relished in it. I could run all the miles, eat just enough to survive, then let my body clear out when I didn’t want to gain any pounds.

This worked—I use that term loosely and with shame, honestly—for a number of years as I got faster in the half marathon. It wasn’t until I committed to my first full marathon that I started to realize I was playing a very dangerous game with my body. There were so many layers: I wasn’t watching what I was eating, just how much; I was purposely trying to trigger a colitis reaction so I wouldn’t keep food in; and I wasn’t eating enough to really sustain energy beyond running the miles. Thankfully, when I decided to make the leap from 13.1 to 26.2, my body quickly showed me that this type of “fueling” wasn’t going to work. I would either get injured or simply not finish the race—or the training.

I ran my first full marathon in 2015, with the goal to qualify for the follow year’s Boston Marathon, which I did. On more than one occasion, I’ve told someone that running a full marathon saved my life. And it really did; I believe had I not committed to such an audacious goal, I would have never opened my eyes to what I was really doing to myself. I thought I had beaten this disease simply by being a runner, learning to love the sport in a new way and not letting my gut keep me on the couch every day. I was wrong. I had learned how to live with my colitis in an almost-healthy way, but it was not until I stepped off that bus in Hopkinton, Massachusetts—at the start of the Boston Marathon—where I truly felt like I had reclaimed my life with colitis and succeeded in doing something spectacular with it.

Living Life, Not Just Surviving

The half marathon paved the way for me to re-evaluate what I stood for, both as a runner and as a patient. But it was the marathon that turned my focus deeply inwards and gave me a choice: live your life or survive it. I had zero clue as a high school runner I would get sick. I had no idea when I was sick that I would ever run a half marathon. And I definitely did not see 26.2 miles as something I could really accomplish, let alone the greatest marathon in the world.

But as I look back on this journey that’s weaved me from being deathly ill; to being in the best shape of my life; to being drastically undernourished; to eating to fuel my whole future as a patient AND a runner; to f#*&ing finishing the Boston Marathon, I know now those two identities do not need to work against each other. They can work together to make sure I get to every finish line of continued remission—and every finish of my future PRs.

The author finished the 2016 Boston Marathon in 3:47:34. Photo: Courtesy of Caitlyn Pilkington