Marathon #48 – 26.2 for Kelley
I was diagnosed with Crohn’s disease 12 years ago, on August 11, 2008. I was 20 years old, in college, and a month away from leaving the country to study abroad for 3 months. I was lucky with my diagnosis – it was relatively quick, only took an afternoon after my first doctor visit. My main symptom was pain in my lower right abdomen, so my doctor ordered a CT with barium to check for appendicitis but discovered my Crohn’s inflammation instead.
At the time, I didn’t realize how much Crohn’s would change my life. I thought if I took some pills, I would stay healthy and everything would be fine. But, I began to learn how serious of a disease this can be. I ended up hospitalized in 2011 and 2013, the latter involving emergency resection of my small intestine due to a perforation (that I let fester for 48 hours before going in).
Since I was diagnosed in college, the only people who knew were my parents, my sister, a couple of friends, and my swim coach. Eventually, I told my roommates, but only because I needed them to drive me to the doctor, and even then, it didn’t seem like a big deal.
Kevin (then my boyfriend, now my husband) was the first non-family, non-roommate, non-swim coach who I told. I remember it like it was yesterday – we were in the parking lot at Downtown Disney, off to have some fun adventures. My phone alarm went off at 2pm, like it did every day, reminding me to take my medication. This had happened a number of times before when we were together, but on this particular occasion, Kevin happened to asked why I had to take the massive blue pills in my hand. My response was, “Oh, I have Crohn’s disease.” To which Kevin said, “Like Kurt Cobain?” Me: “Uh, I don’t know, I guess so?
The first time I told someone about my disease more out of necessity than family ties or friendship was my first job out of college. I was working for a nonprofit and was going to live out of a 15-passenger van with two other people, sleeping on floors, in spare beds, and sometimes even in the van. I figured the people I was traveling with should know that I had Crohn’s, even though it never really impacted my day-to-day at the time.
The day finally came when I was going to tell my team – I was so nervous, I thought I was going to cry. I tried not to make a big deal out of it, because I didn’t know what to expect from their reactions. I finally just came right out and said it: “I thought you should probably know that I have Crohn’s disease.” I don’t remember much of the conversation, but I do remember everyone being very supportive.
After that, I started telling more and more people that I had Crohn’s, and the more people I told, the more comfortable I was with the diagnosis. Every time I talk about it, people are very understanding, and nearly every time, their response is something like “My <so-and-so> has Crohn’s!” I know that Crohn’s can strike it’s ugly head at any time, so it is important for me to keep the people I interact with up-to-speed, so that I’m not suddenly in the hospital one day and no one understands why.
I know that Crohn’s disease will always be a part of me (pending a cure), but I can’t let it keep me down. I only have control over a few things, including my attitude and mental game. Some days it’s hard to stay positive, especially when I’m in a lot of pain or when I’m stuck in the bathroom. To keep me going, I always look for the bright side, or use some serious sarcasm.
After 12+ years of having the title of “Crohnie,” I am finally at a point where I can openly talk about my experience: where I have been, where I am now (in remission!) and where I hope to be in the future (with a cure!). It has not been an easy journey, but I am grateful that it has brought me my Team Challenge family.
This year, I have a new ‘why’ for my involvement with the Foundation and raising awareness about IBD. I’m pregnant with my first child, due in January 2021! My greatest hope is that he will never have to experience Crohn’s disease, and in the event that he does that there will be a cure for him.
Marathon 48 – Recap