My Crohnic Life

– LIFE WITH AN INVISIBLE DISEASE – 

Most horror stories set on Friday the 13th involve slashers named Jason, a damsel in distress and cheesy Hollywood effects. My own Friday the 13th tale involves less psychopaths, yet rivals the gore and terror categories.

My first diagnosis came after years of unexplained medical anomalies. On September 13, 2013, my pediatric GI doctor found an aggressive form of Crohn’s Disease (via scope) that was destroying my gastrointestinal (GI) tract from the inside, out.

At that point, I was just 15 years old; I was also a straight A student, a multi-sport athlete and the supposed model of health from the outside…

So what the f*ck?

I had NEVER heard of Irritable Bowel Disease, and it had been slowly killing me for the better portion of my life (yes, it was quite shocking to me too).

The Crohn’s & Colitis Foundation simply defines Crohn’s disease as, “an inflammatory bowel disease that causes chronic inflammation of the gastrointestinal tract.”

The GI tract includes everything from your mouth to your ass (yikes!), but it most commonly affects the ileum and the cecum (or the end of the small intestine and the start of the large intestine). This is me!

This lovely part of my anatomy was swollen shut, and my intestines were riddled with hundreds of ulcers. I couldn’t eat, I couldn’t sleep and I was in indescribable pain. Daily visits to my local family medical clinic proved my blood work was f*cked up (scientifically put, of course) and we knew something was horribly wrong.

After multiple scans, scopes, doctor visits, tears, drawn labs, etc. it was clear that my immune system was viciously attacking my body. Quickly came the opioids, the steroids, the antibiotics and Humira injections. I was told this course of treatment gave me a 50/50 shot of avoiding surgery. Guess what ‘50’ I got?

I was admitted for the first time about two months later, right before Thanksgiving. I was to be transported to Boise St. Luke’s Children’s Hospital to have a bowel resection to remove 6 inches of intestine (and, unknowingly, my appendix).

While scrolling through Instagram on November 28, 2013 I passively witnessed my friends and family celebrating the holiday together; I was in the hospital, unable to eat and in pain, awaiting my first surgery.

That night, my nurse had the simple task of putting a fresh IV in to prep me for the next morning. It took 13 needle sticks, about 7 nurses and 3 hours to complete this basic chore; I had no idea that this night would set the tone for the next two weeks (or 6 years, if we’re being honest).

This surgery HURTS. The recovery is AGONIZING. The pain is UNIMAGINABLE.

Unfortunately, this wouldn’t be my last resection. In February of 2016, I was hospitalized to get another 3 inches of my organs removed. This trip to hell was not much different.

To make things even better, my blood work showed that I had built up antibodies to my only form of treatment, the Humira. This began the tumultuous process of switching to Remicade infusions.

Although the road has still been rocky since, and I did have to bid adieu to my gall bladder in 2018, I’m grateful and happy to say I am in remission in 2019.

Now that you have the gist regarding how this sh*tshow of mine started, I cannot wait to expand the conversation and dive deep into this invisible world.

Thank you so much for joining me.