It all started with the pain. The pain was the first indication that something was wrong -- but it was a strange kind of pain in my stomach, a pain that came in waves. That's how I pictured it, anyway: like waves in the ocean. It was also a bit like labor pains, because the sensation would grow, and become very intense, and then ease off. At first, because the pain would come and go, I really didn't really think that much about it. In fact, I ignored it for several months, in large part because back then I hated going to the doctor for anything.
But when the bathroom issues began, I couldn't ignore it anymore. I had never had anything like that happen to me before -- the loss of control over my own body -- and that's what really prompted me to go to a doctor.
When I was diagnosed I had never heard of Crohn's and had no idea this sort of illness even existed. Of course I read everything I could get my hands on. And even then, after learning about this chronic condition, I didn't really believe I would get very sick. Boy, was I wrong.
That diagnosis threw me for a loop, and to be honest, at first I did not take it seriously. I thought to myself, "Okay, this doctor is going to give me some medicine. I'll take it every day, and I'll be fine." There came a point, though, when I was tired of taking medicine, tired of going to the doctor every few months, so I just stopped -- and I did okay for a little while. And then, maybe a year and a half after my diagnosis, and six months after I stopped taking my medication, I find myself at work, doubled over in pain. Next thing you know, I'm in surgery.
It was a huge, sudden flare-up, because I had developed an abscess. After that, in a three-year period, I was in the hospital three times. It turns out those six months of not taking care of myself totally screwed me up. But sometimes you've got to learn the hard way to do the right thing. I don't think I've ever missed a doctor appointment, not once, since then.
For someone who hasn't experienced the exhaustion that can come with having Crohn's, it's impossible to imagine that anyone can be that tired. I don't even think there's a word in the English language for that sort of tired. And one of the frustrating things for many people with Crohn's is not only that the people in their life can't empathize with that sort of exhaustion. Sometimes it's painfully clear that friends or family members don't even believe that you're that tired. As if anyone would make this up!
Fortunately I do have a wonderful, understanding family. They can appreciate how bad I feel, at times, because they've seen me at my absolute worst. I hate that they have to see me like that, but I'm grateful, too. It's not easy for any of us. But we're a family. And that matters.
I really hope that my story will help someone else, maybe someone who has just been diagnosed with Crohn's, take it seriously. To not make the mistake I did in thinking that I'd be okay for the rest of my life because I didn't have any serious symptoms for six months or a year. The worst thing you can do is convince yourself that you don't need medicine, or you don't need to make it to all of your doctor appointments. That's simply not true.
And by all means, I would definitely advise anyone with any sort of chronic illness to seek out support. It's great if you have family and friends you can talk to, but it's incredibly important to speak with someone who really understands and empathizes with your day-to-day struggles. You'll be amazed at how sharing your own story, and hearing stories told by others, can help you feel like you've regained some control over your life.