"I've always had to jump back up."

Kim White
Chapter 1
That Was Not That

I was officially, finally diagnosed with Crohn's nine years ago, when I was four months pregnant with my daughter. But I knew something was wrong for years and years before that. In fact -- and I know this is not uncommon -- I was misdiagnosed when I was about 12. I had lots of stomach pains when I was a kid. I was always feeling sick, always having accidents, at school and elsewhere. I mean, it was clear that something was wrong. My mom got me an appointment with a local GI doctor at one point, and if I recall correctly, he had me do a barium swallow. His diagnosis was that I had duodenal ulcers. So that was that -- except, of course, it wasn't.

Chapter 2
Fear of the Unknown

Looking back, I can see pretty clearly that one of the reasons it took me so long to get a correct diagnosis is that I was scared to death to have a colonoscopy. The thought of it just terrified me when I was a kid. My dad's sister had Crohn's, and she had an ileostomy. From a young age I associated the two, so I just pushed the idea that I might have Crohn's into the back of my mind forever. Or what I thought was forever. As I got older, there was no way to keep it a secret that something was wrong with me. For example, when I had to check out of school -- I literally had to leave -- at pretty much the same time almost every day because I knew that if I didn't get home that I would be stuck in the school bathroom for hours, that's not something you can easily hide. But deep down, somehow, I always knew that I had Crohn's. I just never wanted to admit it, or face it. And when I did finally get the Crohn's diagnosis, it was a frightening for a number of reasons, but mainly because I knew -- I just knew -- that I was going to have to have an ileostomy one day. And now, today, I'm on my third.

Chapter 3
A Rough Road

I'm not going to lie -- it's been rough. I've had some horrible experiences. For example, a few years ago I developed a really bad hernia, and the doctor doing the surgery put surgical mesh inside me. That's a standard treatment for hernias, but for anyone with Crohn's it's a disaster. I have PTSD, because of the lack of pain control after my first ileostomy. All sorts of things that could go wrong have gone wrong. In fact, in the midst of all this one of my friends said, "Kim, if something bad is going to happen, it's going to happen to you." And it seems like it has. But you know, I'm not nearly as depressed now as I have been in the past. And when it comes down to it, I'm a single mother to a beautiful 11-year-old daughter, and even if this disease has put me at some really low points of my life, I've always had to jump back up. I have a child. That's what a parent is supposed to do.

Chapter 4
The Good With the Bad

I think anyone diagnosed with Crohn's, or any chronic disease, has to realize that while it's not going to be easy, it's important to know that you're going to have good days as well as bad days. The very best thing you can do for yourself and for the people who are close to you is become your own medical advocate. Learn everything you can about this disease. Keep questioning. I just recently had an experience where my blood work was accidentally mixed up with someone else's -- but it might have taken a lot longer to catch if I didn't know what my own blood panels should look like. Educate yourself. And keep fighting.