October 30, 2009
In October 1999, at age 9, I was diagnosed with Crohn’s disease. Strictly speaking, the original diagnosis was colitis, but it was changed to Crohn’s shortly afterwards, and my treatment stayed more or less the same.
Now, in October of 2009, I am a sophomore in college and am living with an active but well managed disease. I have to take about 9 pills every day to maintain good quality of life, and even then some days are better than others. Crohn’s is a fact of my life at this point, one fact among many. I’ve found that I have to pay attention to it, but as long as I do, I’m usually alright. I take my meds, I always know where the nearest bathroom is, and I stay away from foods I know disagree with me.
Over the years I have had a few people approach me to tell me about someone they know who was recently diagnosed with Crohn’s or colitis, and they invariably ask me if they can give the person my email address so they can talk to somebody who knows what they’re going through and can answer their questions in an informal and candid way. But I have never once gotten any follow-up from the patient. I can certainly understand why. Nobody really knows how to begin to talk about it, and it’s intimidating enough to randomly email someone you don’t know when the subject is less awkward. If anybody had given me the opportunity to write to a more experienced patient when I was newly diagnosed, I would have been touched and would have fully intended to email them. But the email would never be written. I would have been much too nervous.
And so we come to the purpose of my little blog. My blog is for 3 kinds of people. The first is the newly diagnosed patient, who I hope will find answers to their questions and a sense of support. The second is the older diagnosis who still doesn’t have all the answers (just like me!) and wants to read about somebody else’s experiences. The third is the friend or relative of one of the first two who wants to understand what their loved one is going through.
I am far from having all the answers, and my life is far from perfect, but after 10 years I think I’ve had some experiences that are worth sharing, and I feel that after 10 years of support from doctors, nurses, friends, and especially family, it’s time to start paying it forward. Reading my blog won’t give you the secret to having no symptoms ever (but if you find it, send it my way!), but I hope it will give you a better understanding of what it means to live with Crohn’s disease in real life.
I have a few starting points that I want to talk about over the next few posts, but I’d love to hear what you’d like me to talk about. Questions are always welcomed!