Outrunning Expectations: Ostomy Awareness Day

My muscles were on fire and my heart was beating in my head as I rang the bell, cresting the brutal mile-and-a-half climb up Highway 167 at mile 21 of the San Diego Rock and Roll Marathon. For four miles I had been dealing with wild heart rate swings from having too high a ratio of water to salt in my blood (known as hyponatremia) and had been sucking on salt tabs to try and rebalance and keep myself going—but I knew at the top, I was going to finish. Just over year earlier, I had a total colectomy due to complication from Crohn’s disease, removing my colon and placing an ostomy at my small intestine which makes me particularly sensitive to hydration issues. Running (especially 26.2 miles) presents unique challenges for people living with an ostomy, a procedure many people know nothing about.

Ostomy Awareness Day shines a light on this potentially life-changing procedure that an estimated 100,000 people in the U.S. receive each year. People living with ostomies often struggle with anxiety and a sense of agency when it comes to living an active life which is why the United Ostomy Association of America created the annual Run for Resilience 5k on October 5th. This year, I ran a 5k for each of the ostomies I’ve had—a colostomy (large intestine) and my current ileostomy and was reflecting on how ten years ago, I couldn’t even run a mile, yet, at 50, I had just recently a marathon.

In 2013, an emergency surgery saved my life from an abscess the size of a softball by diverting my colon to the abdominal wall, creating what is called a temporary colostomy. I had never heard of such a thing, when the doctors pulled me out of the anesthesia, I remember an overwhelming mix of relief at being alive, and fear of the unknown. The surgery was a seismic shift that affected every aspect of the intimate and interior aspects of my life—an ever-present anxiety around using the bathroom, sex life, social interactions, and even longevity. 

On the other side of the coin, this change created an opportunity to open up a life I never imagined. After years of making little progress on my disease, even with some of the best specialists in the country, I bought a bike and started cycling as a way to feel some agency by signing up for events that I’d have to train for. My doctors were concerned, but supportive when I started training for a 50 mile bike ride My first ride was 2.5 miles, but six weeks later I crossed the finish line having ridden 50 miles and realized that despite my limitations and my illness, I had more ability than I ever knew!

From that moment, I put all of my energy into figuring out nutrition, building energy and strength, and staying calm with all of the issues I was facing with my disease using daily meditation. A couple years later, after having a permanent colostomy placed, I rode 545 miles from San Francisco to L.A. with the AIDS/Lifecycle foundation. Once again, my doctors were concerned, but I had built up their confidence by continually finishing these challenges. Up until my marathon, this was the hardest thing I had ever put my body through—healthy or not! I brought much of my own food that the organization stored, and felt stronger every day. By the time we reached Los Angeles, I was half-joking that we could keep going to San Diego.

In the afterglow of that success, and feeling like I may never be that fit again, I started training to do a triathlon, which is where I found a passion for running. In my first triathlon, I was about halfway into the 3/4 mile swim when I noticed the cold ocean water had made it difficult to move my limbs, and despite putting out a hard effort, maintaining core temperature while pushing my body so hard in cold water was very difficult with the ostomy. I was picked up by swim rescue and abandoned the race, hypothermic. A couple of months later, I completed a sprint distance at the Hope For Crohn’s Triathlon, as one of only three participants with Crohn’s disease. After that, I was definitely done with training for three sports, but was amazed at what I could do on my own two feet, so focused most of my effort on running.

I’ve run everything from 5k fun runs to half-marathons and find lacing up my shoes and heading out the door to be empowering and meditative in a different way than cycling.

A year-and-a-half ago, the damage from extreme inflammation made it necessary to have a total colectomy, removing my entire large intestine placing a new ostomy, this time at my ileum on the small intestine. My world was shaken up all over again, with totally different needs around nutrition, hydration, and how my bowels worked. I was worried that I had reached the end of my ability to do endurance sports, as life without a colon significantly reduces my ability to store water and minerals in the same way. I got in contact with a strength coach I’d worked with in the past (Menachem Brodie from Human Vortex Training) and we went to work on rebuilding my core and making new connections between my mind and my muscles and movement. This year, shortly after I turned fifty, I ran my first marathon, the most difficult thing I’ve ever done.

Over the last several years, I unlocked an athlete I never knew was in there, but more importantly, I found equanimity with my health challenges through meditation, gained resilience through training, and my disease went from having out-of-control inflammation to deep remission. Consistent training incentivizes your metabolism to adapt, kicking off positive effects on some of the hallmarks of inflammatory diseases—clearing out dysfunctional cells and oxidative stress. You can start anywhere and make a difference, even consistent exercising outside has shown to increase diversity in the microbiome. I didn’t even own a bike. I did as much as I could safely and focused on going out consistently and challenging myself. Small gains done every day lead to extraordinary results.

When I was little, I had met someone who had competed in the early Iron Man races. This modern day gladiator left an indelible impression on me, but before I got sick, I never dreamed that I could actually do things like ride a bike 100 miles in one day, or run 13 miles through Big Sur, let alone do those things in my forties.

Being an IBD athlete allows me to talk about difficult TMI subjects with a constructive perspective while being able to share about the challenges and difficulties of life with one of the fastest growing diseases in the world. My journey from near-death to marathon runner is a testament to the resilience and adaptability of the human body and spirit that anyone regardless of health status and limitations can tap into. And you’re not alone. There are running and cycling communities everywhere where people with all kinds of issues and abilities meet up to run or bike through the ups and downs of life and celebrate each other. There are also great resources and events to participate in through organizations like The Crohn’s Colitis Foundation and UOAA). 

Throughout this roller coaster of health and sport, I’ve learned that the biggest hurdle to accomplishing something, no matter where you’re starting from, is deciding to do it. If you're reading this and feeling overwhelmed by a recent diagnosis or life change, remember: I started with a 2.5-mile bike ride. I invite you to take a little leap. Lace up those shoes, clip into that bike, or simply step outside. Your journey stretching out from that first effort is filled with boundless accomplishments and can take you places you never imagined possible.