I've been thinking about this subject for some time now and finally got around to writing a post about my own experience with ulcerative colitis but mostly my journey to the present. I don't want it to be a complete and thorough story (Linda's done a good job with that!) And that's not really what I want my point to be here. Mostly I just want to put a few things out there about Team Challenge and about why I share my experiences. This is not my best writing so I hope you'll give me a pass.
I was diagnosed with ulcerative colitis way back in 1985 at age 27. The only symptom that I remember was blood in my stool. It wasn't long after that that my health went downhill. Surgery was elected and my large intestine was removed on June 20th of 1986. I had a j-pouch constructed out of the end of my small intestine and my "replumb" was completed in September 1986. Adjustments to my new normal, pouchitis, and depression followed.
In my run up to surgery I had met just 2 people who had ulcerative colitis and both had surgery after other options didn't work. For the year after surgery I visited or spoke with maybe 3 other people contemplating my same surgery but other than that I really had no known contact with people in the same boat. I thought this was fine because I didn't want to DEFINE myself as someone with ulcerative colitis or DEFINE myself as someone without a colon. I wasn't looking for special treatment or something like that (well, except maybe extra bathroom privileges). In hindsight it would have been nice to be able to speak with someone else who had dealt with the things I was dealing with.
Skipping past quite a few years of detail, including struggles with chronic acute pouchitis, unsuccessful treatments, alternative medicine and diet solutions... in 2009, after 3 years of doing triathlon, I did my first Ironman in Arizona. Going into the sport I had doubts and wondered if I could ever do something like that. I crossed that finish line and I wanted more. I was passionate about triathlon and competing and take on the challenge.
With Linda's encouragement I got my triathlon coaching certification at the end of 2010. Soon after that I was hired by CCFA to coach Team Challenge's first triathlon team. Linda joined me on the pool deck at our first swim training and we've done it together - 5 seasons - ever since.
As I said, I never set out to have ulcerative colitis or a surgically removed colon define me. It is really my "normal", especially at this point. It's nothing special. I've had over 28 years to adjust, adapt, and move on so what do I have to share? Yes, there have been setbacks along the way but compared to others with Crohn's or UC, I've been very fortunate. Until I became part of the Team Challenge team of coaches, managers, mentors, and athletes, I never felt much of a need to share "my story".
But now, after having spent time with so many people affected by these diseases and by seeing what amazing things people can do when they have self-belief, I'm moved to share my experiences and to inspire those who have not been able to imagine what is possible. I have been blessed to have been healthy enough to complete 7 Ironman races. I have had the privilege of coaching well over 200 Team Challenge triathletes, some of whom suffer from IBD. And I have now been a TC athlete myself, raising funds to raise awareness and find cures.
Even though my health is good and I tend to have very few setbacks now, I share my UC story, my triathlon stories, my race reports, and whatever else, not because I'm saying "look at how awesome (I think) I am". (Okay, I WILL admit to enjoying have a big cheering section, especially out there on an Ironman race course!) I've learned from others that I should share in order to inspire and to make a difference for someone who never imagined what they were capable of. And I also do it to be a better coach - to be honest about my successes, difficulties and mistakes so that "my athletes" and friends can learn from what I do or don't do.
Team Challenge has made a huge difference in so many people's lives. Being able to be a part of this and to contribute to its success makes the time that's put into it well worth it. Changing lives may sound a little dramatic or an exaggeration but it's actually not far off from the truth. I am so grateful to be a part of what Team Challenge is all about.
Awesome post! My early years with UC and j-pouch surgery (1997-1999) were much like yours. Didn't have google or Facebook back then, so I didn't know anyone else with IBD, let alone a j-pouch. Until I joined the CNN Fit Nation Team in 2013, I didn't really share my story. That experience was a real eye opener. I received so many messages from folks around the country and world. And the message I received over and over was from folks who were newly diagnosed and were online researching what their diagnosis meant. And they told me they had not read a positive story about UC or Crohn's until they read mine. That did it for me. Totally taught me the power of sharing my experience with others. Skip, you have personally been that inspiration and hope for me as I plan and train for OLY and half iron distances in the future. I've said it before, but I am so, so glad to know you and Linda and the rest of my Team Challenge peeps!!
ReplyDeleteIt's a beautifully written story that is much more than your personal competitions. You're an athlete that is fun to watch because you share yourself with those cheering for you in many in different ways. In a myriad of ways also, your words of wisdom encourage and allow others to dream of challenges never thought possible and then make them come to fruition. CCFA is fortunate to have you, to have found you and you them. What greater satisfaction and pride could there be? I can think of nothing better for a coach or a participant. Thank you.
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