Month: August 2017

Some people do find coconut oil to be effective when included in an anti-inflammatory diet. It can soothe sores and help reduce inflammation. That’s not why I included this in the story though. I’m sharing this as an example of how humor can make things tolerable.

At this point, I was in the hospital waiting to see if my insurance company would approve Stelara for me as a treatment. My doctors had said that if the approval didn’t come through within three days, I’d need surgery and a permanent ostomy. This was the morning of the second day of waiting. I was extremely stressed out and feeling worn down after having been so sick for so long. My fiancé was visiting and she was stressed out too. It was an impossibly frustrating situation for us both.

I think she asked this semi-seriously, but once it was out, we couldn’t stop laughing. Sometimes, when you’re feeling burnt out and hope is fading quickly, you just need to laugh. It won’t fix things and it can’t help you figure out the future, but it does relieve tension and it can make the present tolerable. Thank god for that.

 

So, I’ve been playing it cool, but the fact is my body is actually pretty famous.

When I was first diagnosed with Crohn’s Disease at the age of 11, I was just a normal patient. Normal meds worked, my case wasn’t particularly interesting, and superstar status was nothing but a dream. Then, as the years went by, I began rejecting drug after drug after drug. It was only years after my first surgery when I was living in Belgium in my early 20’s that I started to become kind of a big deal. I’d rejected all of the medications available by then, so I had to start experimental drug trials. In addition to trying out new meds and having regular tests done to monitor progress, I had my own dedicated doctor and team of nurses. Well, not my own, but they only saw a handful of other patients and I never had to wait to be seen anymore, so for all intents and purposes, they were mine.

By the time I started on a new drug called Humira, my fame had grown. I’d rejected 3 experimental meds in 3 months. I was beginning to wonder if this was the end. Either the Crohn’s or the side effects of the drug trials would claim me. But then, miraculously, the Humira worked! I later moved back to the states and enjoyed a few years of obscurity with one catch – my case had been interesting enough that I was accepted as a patient for one of the top Crohn’s researchers in the world. I think he was bored with me those first few years when I was healthy. But, I’d already had a taste of the limelight, so we both knew I couldn’t hide in the shadows for too long.

And so, when I got sick again, I became interesting again. It was slow at first as I tried supplements to help boost the Humira, but when those failed, I regained my rockstar status. I got to try new combinations and new treatments, and I rejected them all. And now, while coping with probability of needing surgery and an ostomy, I could delight in the news that my case was being presented at Johns Hopkins!

In all seriousness, I’m glad that I’ve been able to contribute to the advancement of treatments for Crohn’s Disease. It would be nice to be famous for something other than being the guy who suffers a lot and rejects all the medicines. Maybe that’s why I started writing this. I’m jealous of my body’s accomplishments.