Marathon #43 – 26.2 for Shawn
I have had a severe case of ulcerative colitis since eighth grade, although it took several months for a diagnosis. I am about to hit the 15th anniversary of my colectomy. I often consider myself “cured” of my ulcerative colitis, but in reality I have just adjusted my definition of “normal”. Living with a J-Pouch means that I use the bathroom 3-5 times a day, plus 2-3 times through the night. But, that’s half as many times as when I was flaring, I have the ability to wait until I can get to a bathroom, and I’m not losing any blood. In comparison to the 4 years I spent on prednisone prior to my surgery, this feels like a win. That time was a constant seesaw between severe steroidal side-effects and painful flair ups.
While the physical recovery from the colectomy was long, the mental one has been much harder. I still keep bathroom locations in the back of my mind, and whenever I am about to head to an unknown location I always use the bathroom right before leaving. I still get anxious when using a bathroom that is adjacent to whatever room people are congregating in.
Despite my love of the outdoors, it took me a decade of living with my J-Pouch to build the confidence to try camping again. In 2014, I made a conscious decision to not let IBD define my life. While I did use nearly every one of the 70+ outhouses along the trail (plus dozens of catholes between them), I hiked the full length of Vermont.
Continuing the healing process, I joined Team Challenge the following year. Before my first training, I had never run more than a 5k, never fundraised, and never had an honest conversation about life with IBD. IBD can be invisible to other people and many of the symptoms are bathroom related, so a lot of people try to hide it out of shame. I did too. Finally being in an environment where I could talk about this was transformative. My father has had ulcerative colitis since before I was born, and I couldn’t even bring myself to talk to him about it.
Being able to talk to and socialize with other people that understand really helped me accept myself. It’s like I was trapped for years without even realizing it. While I am proud of crossing that finish line in New Orleans (thanks to Marc for lying to me about the remaining distance several times or I might not have made it), I am even prouder of no longer hiding my disease.
Running 26.2 for Shawn!
Marathon 43 – Recap