For much of 2013 and some of 2014 I was bedridden due to my Crohn’s disease coming back and having to make the decision to have a proctectomy which would make my ostomy permanent. After my many surgeries, the one to remove my rectum was the most difficult recovery I ever had. The pain and complications took away much of the hope I had to get back to a “normal” life, but in the back of my head I knew it would.
But what kind of normal would it be?
I can tell you I would never have imagined that I would go from bedridden to completing a full 140.6 mile IRONMAN triathlon. For those that don’t know, an IRONMAN race combines swimming, cycling and running, all in one day. The swim is a 2.4 mile open water swim, the cycling is a 112 mile ride, and the run is a full marathon of 26.2 miles. Yeah, it’s not a small challenge or the smartest one to take on.
Yet, a few good friends told me that I should try triathlon, and that it might be good for my health. Long story short: they were right. Before I knew it, I went from saying I couldn’t try one of those sports, to completing a 70.3 mile half IRONMAN, and then actually considering a full 140.6 mile IRONMAN.
This became a dream. A dream to prove to myself that I wasn’t broken. To prove to myself that I could still take on a challenge. To prove to myself that I can still do something that even the healthiest people find INSANE! To prove to myself that I was still in control of my life. And to prove to myself that the IRONMAN slogan was true: “Anything is possible!”
Part of this dream was to hear the legend, Mike Reilly call out my name and say…
“Brian! You! Are! An! IRONMAN”
I chose a race I knew Reilly announces every year and the journey began. Over the multiple years of races that I thought it might be possible, I used these words to inspire me, to push me every day, to lead me in making the hard decision almost every day, and know that I would be an IRONMAN one day
My ostomy is what allowed this to even be a thought. My ostomy gave me my life back. My ostomy was the reason I was able to become a triathlete. My ostomy would be the reason I’d become an IRONMAN.
Shortly after I completed my IRONMAN experience, I bought Mike Reilly’s book. I was so excited to read every word and experience all the journeys other athletes had when getting to cross their own finish line. Then, I heard what I thought I would never hear. A story that involved an amazing guy named Matt. After a series of tragic events, Matt had surgery to place a colostomy bag. And even with the adversity Matt experienced, he was able to cross an IRONMAN finish line.
The above audio and page is how Mike Reilly described some of Matt’s journey and the ostomy bag he had to live with for a short amount of time. From what I’ve tried to find on Matt’s story and what the book says, it seems like it was a temporary ostomy. But when I read and then listened to these words over and over again, I was hurt. Then I got mad. Then frustrated. And I realized I was experiencing a wide range of emotions.
Below is a letter that I have written to Mike Reilly. I want to preface this letter with the idea that I know Mike Reilly didn’t mean to use such hurtful words to the ostomy community. What he said are common stigmas that aren’t true. Common assumptions anyone might have who doesn’t know what life with an ostomy is truly like. I know Mr. Reilly loves every good underdog story, and loves stories of adversity to cross any finish line, not just triathlons, not just IRONMAN races.
But for the ostomy community, I couldn’t keep silent about this. I had to share my voice and raise the proper awareness. I wanted to use this as an educational opportunity to share with the world that an ostomy is not a “LOUSY” way of life. In fact, it’s the exact opposite. It allowed me to go from bedridden, to finding the most amazing wife, to getting to hear Mike Reilly say the words I always wanted to hear, “Brian. You. Are. An. IRONMAN.”
Dear Mike Reilly (The Voice of Ironman),
I wanted to share with you a small amount of my journey, how you gave me one of the most memorable moments of my life, but also how your new book let me down in a big way as well.
My IRONMAN journey didn’t begin with a healthy body and the ability to take on a challenge like an endurance triathlon. At age 11 I was diagnosed with Crohn’s disease, an autoimmune disease which attacks my gastrointestinal tract. This disease changed my life in an enormous way and took many good years away from me.
In college is when it struck my life hard, and my mild to moderate case turned severe in what felt like a heartbeat. I began having infections and rectal fistulas which caused me to have 13 surgeries in 19 months. I think it goes without saying that my quality of life as a college student was low, beyond low actually. But after many surgeries I found some measure of health.
Sadly, when I was 25 years old my Crohn’s came back with vengeance and my life was turned upside down again. I was going to the bathroom 25 times or more a day, didn’t have control of my body, and was in pain 24 hours a day, 7 days a week. For more than two years I fought, and fought hard. I did what I could to smile my way through it and not bring the people I loved around me down. I knew it was hard for them, but also knew my attitude would determine how everyone dealt with the chaos that surrounded my life.
It was at this time I decided to have the surgery to create a stoma and live with an ileostomy, or ostomy bag. While this was an extremely difficult decision to make as a single 28-year-old, it was one that had to be made since my life wasn’t going anywhere and there was no end in sight.
As I started to get healthier and adjust to my new life with an ostomy, multiple close friends and triathletes in my life, and ones who have heard you say they are an IRONMAN, lobbied for me try out the sport and see if it could help my health. I told all of them that I would think about it, but not to hold their breath. At this time it was still hard for me to get through a normal day and take on normal tasks. I was adjusting to a new norm, and taking on three different sports seemed impossible. But I felt like things were heading in the right direction, so I didn’t say no.
In 2015 I decided to sign up for a sprint triathlon and a 70.3 half IRONMAN in Maine called Challenge Maine (now IRONMAN Maine 70.3). My training was difficult because I not only had to manage a new level of activity to complete my goal and cross the finish line, but I had many additional responsibilities as a triathlete with a chronic illness like Crohn’s who lived with an ostomy. Nutrition, hydration, ostomy care, and more were added to the equation of finishing this race.
I’m happy to share with you that I finished my first 70.3 in 6:43 and crossed the finish line in tears which started around mile 68 when I knew that this dream that I never thought would be possible was going to come true. I shared it with my two close friends and girlfriend at the time (who is now my wife). It was the best moment of my life up until that point and one I wouldn’t have been able to complete if I didn’t have the ostomy which gave me my life back.
After 3 more seasons of 70.3 races and other shorter distances, I thought if I was going to take on the ultimate challenge of 140.6 miles, now was the time. I began training about 9 months out for IRONMAN Mont Tremblant, a race I knew you announced every year and one that was suggested to me by many friends. I knew this would be a huge challenge. I wasn’t just taking on an IRONMAN, I was taking on a difficult course as well.
After the delayed start in 2018 which changed my entire plan for nutrition and hydration, I am happy to say I completed IRONMAN Mont Tremblant in 16:13:34 and crossed the finish line with you saying “Brian, YOU ARE AN IRONMAN”. This became the best moment of my life when it comes to endurance races and challenging my body after living through more than 30 surgeries and having an ostomy.
The moment was captured perfectly but there are other moments I remember as well. Hearing you call people across the finish line when I was around the 13.1 mile mark of the run gave me the energy I needed for the second half of the marathon. My best friend meeting me at mile 24 telling me that this was going to happen and that the girls were just ahead was incredible. And my wife telling me at mile 25, that she couldn’t believe it, and telling me that I did it, I was going to be an IRONMAN were highlights I will never forget. Ones that brought me to tears.
The reason why I wanted to share this with you is because I recently purchased your book. I wanted to hear other stories like mine and get the motivation/inspiration to complete my 70.3 miles with the Crohn’s Colitis Foundation at IRONMAN Maine 70.3 this August. Hearing more about the backend of what you do and all of the stories gave me even more respect for the challenges you take on and how you’re so passionate about helping others create the memories just like the one I had.
BUT, then I read the story of Matt Long in your book. What he went through after his accident was horrible and I was thrilled to hear it had a happy ending with him becoming an IRONMAN after battling through so much. It was a truly inspirational story about how IRONMAN has changed so many lives, in so many ways.
And then you discussed the ostomy that he had, how it smelled and how his quality of life with an ostomy and I quote would be “lousy.” While my heart broke as I read this over and over again, seeing if what I read was really in your book, I wanted to share with you my story, and how an ostomy is not a tragedy. In many cases it gives a patient their lives back and allows them to no longer live in fear of a wide variety of diseases.
My ostomy does not smell. My ostomy does not bother me. My ostomy is not a “lousy” part of my life. In fact, my ostomy is what saved my life. My ostomy is what allowed me to have a normal life. My ostomy was what allowed me to date and meet an amazing woman who is now my loving wife, and embraces any challenges we may have ahead. My ostomy is what gave me the ability to get out of bed and think that a short distance triathlon was possible. And my ostomy is what allowed me to embrace the IRONMAN slogan of “Anything is possible” and become an IRONMAN.
You’ve changed my life and so many others in a positive way. You’ve given so many people and their loved ones the inspiration to take on an IRONMAN journey as a team, which it really is. There aren’t a lot of people who can do these distances alone. I know I wouldn’t have been able to do this without team members like friends, loved ones, wife, and my ostomy.
While we’ve never met and we might not, I hope you don’t mind me sharing my story with you. As an advocate for the ostomy community, I wanted to let you know that an ostomy is not a bad part of a person’s life, in fact it was what allowed me to hear you say “Brian, YOU ARE AN IRONMAN.” Words I will never forget and I was beyond happy to hear you call out.
Thank you for all that you do for the triathlon community and everything you will do in the future. I hope to complete another full IRONMAN one day and while I will never qualify for Kona, maybe one day I will make it there to hear you call others across the finish line at the World Championships.
Thanks again for reading this and from the bottom of my heart, thank you for being part of my IRONMAN journey.