When I was first diagnosed with Crohn’s in 2007, I wasn’t worried. Maybe it was the “always fight for what you want” mentality I was raised with. Maybe I felt like I had an advantage as I was dating a really cool nurse at the time (my now-wife, by the way). Maybe it was ignorance. In hindsight, “all of the above” would be the best answer. Regardless, I would fight.
My diagnosis came during my freshman year. I was a Music Education major and a member of the ECU Drum Line. I was taking more classes than I could manage and spending every waking moment occupied with music, sports and having fun. Life was a bit stressful, but extremely enjoyable. I was able to maintain my symptoms for a few years. I fought.
Things suddenly changed in the summer of 2011. I had a sharp pain in my abdomen that caused me to miss a week of work. I had lost 20 pounds within 2 weeks and I had no idea why. My medicines didn’t change, my diet wasn’t altered, I was still inconsistently active. My now-wife and I couldn’t afford the expensive biologic treatments that were recommended, so I started on a combination of Tramadol and Dicyclomine. This helped for a short amount of time, but I knew taking painkillers just to get through a normal day was in no way a long-term fix. I adjusted to what would be my new “normal” and continued the fight.
Fast-forward 18 months – I had graduated and gotten married. Everything seemed like it had changed, except for the hell I was going through with my disease. At this point, I had already failed Cimzia and decided to switch doctors. I began Remicade treatments and felt better for a few months, until I slipped back to reality. Next it was Humira, paired with Mercaptopurine. Again, I felt great for a few months until I fell back to “normal”. I was still fighting.
I learned at that time that everyone has a breaking point. Just like in battle, you get to a point where you are tired of the status quo for fear of losing. Up until this point, I didn’t think I could lose. I was fed up and tired of just maintaining the current symptoms. I wanted better. I wanted the pain to be over.
I still remember the day I decided to go through with the surgery. It was January 2014. If I wasn’t firmly planted in the real world before, I definitely was at that point. I had obtained licenses for work as a Financial Advisor, had purchased a new home and truck the previous summer, and had a new puppy. I was tired of what I thought was my “normal”. I was tired of having to know where every single restroom was in every place we would go. I was tired of being limited as to what I could eat and having it dictate where I could eat. I was literally tired of being malnourished and watching family and friends be able to enjoy activities that would leave me exhausted.
My decision wasn’t an easy one to make. I knew it would absolutely kill any momentum I had at work. How would I be able to provide for my wife and I? What would I do about my clients at work? What would happen if I couldn’t play drums after this? Even with all of these questions constantly flowing through my mind, I knew this is what I had to do if I wanted a better life. It was one of those situations where you know you’re doing the right thing just because of the feeling. Don’t get me wrong, this doesn’t mean I wasn’t terrified, nervous, or anxious. I knew this was the right decision though, because I was focused on one thing – fighting. I knew if I didn’t fight I wouldn’t feel better. I wouldn’t limit the number of trips to the toilet I would have to make. I wouldn’t limit the amount of medicine I’d have to take. I wouldn’t ever become healthier. I wouldn’t be able to live my life to the fullest. I wouldn’t be able to fight.
Now that I have healed from the surgery and have become somewhat used to life with an ostomy, I’m confident that my decision was the right one. I’ve narrowed my medicines down to just one or two instead of five or six. I’ve had the ability to travel and explore the world. I’ve been able to gain my weight back (ok, maybe a bit more than I wanted). I’ve been able to achieve all of these things without any major issues. I’ve been able to fight.