No Colon, But Still Rollin’—Triathlon, IBD, and My Path to Surgery

By Cory Fleming

The difference between perception and reality can be a funny thing. I guess it’s why the whole “Instagram vs. Reality” schtick became so popular. To my friends, I was the annoyingly healthy person—a clean and meticulous diet, a completely over-the-top exercise regimen, and a body without an ounce of fat to spare. If you looked at my life on paper, it’d be hard to see anything to the contrary. I had been training for Ironman Tulsa, and I was gunning for a top-5 overall finish in a field of almost 600 amateurs.

For the unacquainted, an Ironman consists of a 2.4-mile swim, a 112-mile bike ride, and a marathon, all strung together. Open up my training log, and on April 21st of this year—exactly one month before the race—you’d see a typical morning bike workout checked off: two hours on the trainer, with well over an hour of sweet-spot intervals. I had a light 3000-yard swim planned for the afternoon. Look at the day before, and you’d see a 12-mile run in the morning with nearly 8 miles of intervals at a pace just above 5:20 per mile, and then an easy spin in the afternoon. Zoom out further, and you’d see 15 weeks of training, each averaging around 20 total hours of swimming, cycling, and running.

A beacon of health, right? As an athlete battling ulcerative colitis, a brutal and incurable inflammatory bowel disease, the answer was a resounding “No.”

During that April 21st bike workout, one of my doctors called—”I’ve requested a bed for you at NYU Langone Hospital. They’ll call later today when one’s available.” Being that I was in the middle of my last interval, I kept an eye on my training software, making sure my power didn’t dip below my target. “Okay, thanks Doc,” I muttered, as I held the effort steady. Sure, the effort was futile with Ironman Tulsa now off the table, but I felt compelled to pedal on nonetheless.

We chatted for a few more minutes. The upshot was that the fourth heavy ulcerative colitis medication we tried had failed, my steroid treatment was unsustainable, and it was time to cut out the problem, literally: I was going to have my large intestine removed. I finished the workout after we hung up, but I never did make it to that afternoon swim I had planned—opting instead to spend a week in the hospital, and many more weeks recovering.

Despite what my training log might have suggested, this wasn’t unexpected. Those 8 miles of intervals I had done the day before? Those alone required 6 emergency trips to the bathroom, helping get my total to 20 trips on the day. Those 15 weeks of big volume? Those were managed by brute force through a weakened immune system because of the medications, insomnia because of the steroids, a hundred workout interruptions because of a non-compliant gut, nutritional issues, blood loss and anemia, vitamin deficiencies, and endless correspondence with my medical team. The outer perception and the inner reality couldn’t have been further apart.

Training with Ulcerative Colitis

Anyone who has seriously reached for an athletic goal can tell you that training is hard. And anyone living with IBD can tell you that day-to-day life can border on impossible. For the unlucky few trying to manage both, it sometimes feels like the border is broken down and it’s all just plainly impossible.

I was diagnosed with ulcerative colitis in April of 2021, but I had symptoms of a mild flare-up for about a year prior. During that year, I was training for my first ultramarathon, and I figured that the apparent stomach issues just came with the territory. Plus, if my body could make it through a 100-mile run (the dozen bathroom stops be damned), why would I suspect anything was truly wrong? But when I completed the race and dialed back my running, and yet the symptoms got worse, I begrudgingly went to a doctor.

After walking home in a post-anesthesia haze from the colonoscopy that confirmed my ulcerative colitis diagnosis, the first thing I did was search for stories of other endurance athletes with IBD—mainly to see whether they existed. Fortunately, there’s no shortage of inspiring people doing amazing things with their insides conspiring against them. My athletic life wasn’t over; it was, however, going to be full of obstacles and frustrations.

Training with IBD has been a constant cycle of taking a few steps forward, and then a few backward. Leading up to my April 2021 diagnosis, I was the fittest I’d been in my life. Then, within a month, I was hit by my first monumental flare-up, and a big chunk of progress was wiped away. Weeks spent in bed, emaciation, and a frightening amount of blood loss have a tendency to do that. When the flare-up eventually resided, I built my fitness to a new high, only for it to be toppled down again by an even worse flare-up that began towards the end of 2021.

At one point in February 2022, my flare-up got so bad that I was too weak to stand up for the two minutes it takes to fry an egg, having instead to sit on my kitchen floor while waiting for the egg to finish cooking. I had trouble mustering the energy to speak in full sentences, and leaning over the side of my bed to plug my phone into the charger on my nightstand was an arduous endeavor. But fitness comes back. A horse’s dose of a corticosteroid called prednisone temporarily brought me out of that flare-up, and before long my marathon time was back down to where it should be—and long rides and hard intervals were once again the norm.

The Sisyphean cycle continued: I’d battle a host of symptoms while building my fitness up, watch my ulcerative colitis soon tear it down, and then, with brief steroid-induced relief, I’d begin building it back up again. The boulder always seemed to roll back down the hill. This cycle is particularly painful when much of your identity is founded upon fitness and health. Working towards athletic goals is one of my main sources of personal fulfillment, and being fit, fast, and healthy are core pieces of my sense of self.

Living with IBD feels like living in a body that’s not yours, or at least one that’s utterly out of sync with your mind. It’s difficult going to bed each night knowing that, for reasons completely out of your control, you might wake up to your body rebelling with no regard for your plans or goals. This is again where perception and reality can depart—from the outside, people see your latest century ride or track session, with no knowledge of what was endured to complete it, what’s happening inside your body, or how the next day everything can come crumbling down.

So why bother? For one, I simply love exercising. When I’m able to, training is how I want to spend my time. But more importantly, I’ve remained optimistic—even if only in the long term. Modern medicine is incredible, and there are plenty of treatment options out there, surgery being one of them. Although IBD is frustratingly individualized, without a one-size-fits-all treatment or a true cure, I believe it just takes time to find what’s right for you. I’m convinced that my body will retain some benefits from the countless hours of training I’ve put in with ulcerative colitis, and when I’m healthy I’ll be able to draw upon them and hit some seriously big goals.

Surgery and Beyond

Deciding to take the surgical route was an easy decision, but not one that came lightly. My ulcerative colitis had never truly been managed since my 2021 diagnosis, other than for a brief period in the middle of that year. I tried every diet and combination of foods that I could think of—including a wonderful month where I had eggs, toast, and Ensure shakes almost exclusively—and I worked with a dietician specializing in IBD. I went through four of the most advanced and efficacious medications—under the supervision of one of the nation’s top IBD doctors—all to absolutely no effect. The only thing that helped at all was prednisone, which has horrible long-term side effects and is an unsustainable treatment option. After spending way too much time on high doses of prednisone, and with unmanaged inflammation steadily driving up my risk of colon cancer, surgery was an easy choice, if only because of the circumstances.

I elected to have a three-step “J pouch” installation. A few days after that April 21st phone call with my doctor, I had my large intestine removed as the first step. In October, I’ll have a J-shaped pouch installed where my large intestine used to be. And in January, my surgeon will hook everything together and the J pouch will function, essentially, as a small synthetic colon. Until then, I’m living with an ostomy.

Life after this first surgery has been mixed. My physical recovery was astoundingly fast, I’ve been able to gain back some healthy weight, and my return to work was much quicker than expected, certainly helped along by the advent of remote work. And now, two months after surgery, I’ve put together my first colon-less week resembling something like training: a few easy spins, a few short runs, and some strength training. I’m setting reverse-PRs—shortest distances, slowest splits, and weakest numbers—but that’s beside the point. On the other hand, I still have some remaining intestine that’s due to be removed in October, and it’s full of unmanaged inflammation that’s making life limited and uncomfortable in a number of ways. I’m also still getting used to living with an ostomy.

Until the October surgery, my plan is to build back a strong body. If I can get this lingering inflammation managed, I might even sneak in a half Ironman before being opened back up. After that, my sights will be set on getting through the final surgery in January, adjusting to the J pouch, and then, hopefully, enjoying a more normal life. I’m cautiously optimistic—enough so that I deferred my entry to the Ironman I missed this year to one in August of next year. Some say it takes a year to adapt to the J pouch at all after the final surgery; let’s see if I can adapt enough to do a full Ironman in about half that time.

Rollin’ On

Much of the last two and a half years has resembled a nightmare. If you told pre-diagnosis me what I’d go through, and that I’d need to have a major organ removed for a chance at a somewhat normal life, I’m not sure I’d have believed you. Nonetheless, there have been a few highs—despite the boulder always rolling back down the hill, so to speak, I’ve reached some incredible athletic heights. If I could reach them with unmanaged IBD, imagine what I can do when it’s in check.

I expect colon-less life will have its own share of issues, but I’m genuinely excited to test myself against them. I imagine they won’t be as severe or arbitrary as those I’ve already faced. And in any event, battling against IBD has given me a level of resilience that few people can claim. Although there might always be some discordance between outside perception and my inner reality, any achievements from here on out will have extra meaning—even if just silent, personal satisfaction—knowing the seemingly insurmountable path I took to reach them.

So that’s it for now. I’m going to stop writing and hop on my bike, optimistic that the comparably small workout I’m able to put in today will be part of a large, meaningful story of accomplishment and self-fulfillment. No colon, but I’m still rollin’.

Follow Cory’s IBD Journey Here

Cory Fleming- Challenging IBD