Story of Self | nocolon33
Posted by Mark Weiss on May 24, 2012
I was 8 years old when diagnosed with ulcerative colitis in 1975. That was the dark ages. Non-flexible scopes. Months and months without a diagnosis. Wait! There’s still that months and months without a diagnosis problem. That’s something we’re working on fixing.
After a fairly mild disease course for 20 years, my UC worsened significantly in 1994 resulting in a full colectomy in 1996. Guess what, though? This blog isn’t about me.
Because of those dastardly internet predators, all of the names that I use, other than that of the family dog (Izzy) have been changed to code names.
My daughter, Tinkerbell, then 6, was diagnosed with UC in 2004. After her initial remission, she had a flare up in 2010. While it took a while to get her under control, we learned a few things. One, she cannot take 6MP. Which bums me out because I like having all of the arrows in the quiver for treatment. Second, her UC is low and localized. That’s proven to be a good thing. She’s back in full remission taking no medication except a 5ASA drug.
My wife, Sela, and I thought that IBD had hit us hard enough, but we were wrong. In 2010, my son, Jedediah, was diagnosed with what I'll call an advanced case of UC. He struggled mightily over the next 12 months as we watched one medicine after another not work. Jed got sicker and sicker, in and out of the hospital. After all of the arrows in the quiver had been fired, Jedediah had his first colectomy surgery in January 2011 and the next 2 months later. Jedediah is doing great!
Our youngest daughter, Elly Mae, has escaped the family genetic lottery through her first 11 years. She lives in constant fear that she’s next. Sela and I take solace in the fact that the odds really are with us, but you never know.
I volunteer for several IBD organizations, and I speak at IBD education events. I have many messages, but my main focus is to help parents understand the power they have over their children’s care. IBD has a public relations problem—people don’t like to talk about poop. Other chronic illnesses get all the pub.
As a result, I’ve talked with dozens of parents in recent years who have that shell shocked look on their face. Many had never heard of “Crohn’s disease” or “ulcerative colitis” until the doctor delivered the diagnosis to them. They are venturing into the unknown, and that scares the hell out of them.
I understand. My parents were those parents. I’ve lived through it as the ill child of parents who had to feel their way around, as an adult with IBD and no remission in sight and as a parent of two children—one with mild IBD and the other, well, not so much.
Knowledge is power. Being a parent is power. Acquire and uses these powers. Your kids are going to need it and you.
Han (I’m a 45 year old Star Wars geek. What other name should I use? And since I get to pick the code names, I’m taking Han all day long and twice on Sundays).
