My Crohn’s Disease Story
As I sat in my hospital bed in the summer of 2016 after having another setback with my Crohn’s Disease, I heard a nurse come in and reassure the patient next to me. He also suffered from Crohn’s and had a temporary ostomy put in place to relieve his pain. She told him that while this surgery was going to be a big part of his life, it didn’t define who he was or control his life. He could move on and live his best life with the right attitude — and medication, of course.
A little less than a year later, I was exactly in his position.
I was diagnosed with mild-to-moderate Crohn’s Disease when I was 12. The pain was always there, but never too debilitating where it kept me down for an any extended period. But then sophomore year of college hit, and the stresses of running a sports section while pursuing two separate degrees hit me hard. I’m sure that wasn’t the only cause, but it didn’t help me much. After that my Crohn’s only worsened, and even if medications kept inflammation down for a little bit, it was only a temporary fix. I was always one step away from a hospital visit.
Finally, just a few weeks into my job with MiLB.com this year, everything came to a boiling point. I was on my way into work when the pain in my stomach and lower back became so excruciating that my parents met me at the train station and rushed me to the emergency room. After a few tests, it was decided that I was to have an ileostomy to relieve the inflammation and infections going on in my GI tract. Anything to end this pain was fine with me.
So on April 26 at noon, I finally went under the knife. A little over four hours after going onto the surgical table, I woke up with a bag on my lower right abdomen. It was definitely a weird feeling that I had to get adjusted to.
For the next few days, I had trouble even sitting upright in bed and could only manage to take a few steps outside of my room, so I had plenty of time to check my phone. While on Twitter and Instagram, I couldn’t help but see Jake Diekman’s posts with his ostomy pouch. To be honest, I’d never seen someone so open about a surgery like this on social media. It definitely was inspiring, and I shot a few tweets at him not long after, and we had a brief exchange.
Let me be clear here: Over the course of my life, my family and very close friends have been well aware about my illness. However, to those not super close with me, I’ve definitely been vague about the severity and what procedures I’ve undergone.
As a kid in junior high and high school, I don’t think I told more than three people about what my disease actually was. Some students would sometimes comment about my facial weight gain (thanks, Prednisone) or subsequent weight loss, but I just always said it was some random side effect with a medication I was taking without actually describing what the medicine was. Same goes for what “surgery” I went through.
But after seeing Jake and his fiancee’s posts, I was definitely inspired to be more open about sharing my progress. Their “Gut It Out” shirts send a good message and the proceeds go to a great cause.
Talking with many friends in the IBD community, they all say that Jake is an inspiration on so many different levels. Him being so open about it all is just something that you don’t see from a lot of people. It truly is a revelation.
His story is not just important to him or his family, it’s important to all of us suffering.
As for me, I’m a little over four months out of surgery and haven’t felt this good in many years. It’s been an adjustment, but at the same time I’m thankful for what my doctors and surgeons have done for me to help things cool off in my body.
Even during the bad days, I always remember to try to “Gut It Out.”