I don’t really want to write this blog. I haven’t written anything in the past couple of weeks because, honestly, I haven’t felt like talking about it. But I also realize that it needs to be talked about. I’m referring to Crohn’s Disease; something I have dealt with for the past 13 years, or officially half of my life.
To give you as quick a history as I can, I was diagnosed in 1999. For a couple of years preceding the diagnosis I dealt with symptoms including stomach pain, diarrhea and weight loss. In 8th grade, my symptoms hit an apex. I was already a tiny 75 pounds, and quickly dropped to down 50. I stopped going to school. I was constantly running to the bathroom. I was even blacking out at times, once almost falling down the stairs. I was admitted to the hospital on October 4, 1999, and hooked up to all kinds of fluids and nutrients. After 25 difficult days of medicine and prayer, I was able to go home. It was a rough road to gaining weight and strength, not to mention trying to fit back in at school after missing half a semester.
I got back on my feet and spent five years with nearly no symptoms, other than an occasional “flare up” that would last a couple of days. It wasn’t until my freshman year of college that I had another big Crohn’s related issue and landed in the hospital for two weeks leading up to Christmas. After that I spent several years teetering between flares. I’d have periods of symptoms and periods of normality. Then about the time I graduated in 2008, things seemed to level off and my symptoms decided to stick with me constantly. Since then, I’m not sure that there has been one day where I have not dealt with any symptoms.
Now, I’m on the verge of one of the biggest decisions of my life: whether or not I go through with a colectomy, or the complete removal of my large intestine. The surgery would mean that I would have a small opening in my stomach where they would attach my small intestine, called a stoma. Waste would leave my body through this stoma, rather than the rectum/anus like normal. I would have to wear a bag around the stoma that would catch the waste and then have to be emptied.
Like I said, these aren’t things I want to talk about, but I see a need out there for awareness of this invisible disease. Crohn’s is a disease that can easily go unnoticed, which can be both a positive and a negative. It’s a good thing because people don’t look at you and automatically know that you’re sick. But at the same time, you can have people who think you are exaggerating how poorly you feel because you don’t “look sick.” I plan on using this blog to show what it’s like to live every day with a disease that has for too long been overlooked and viewed as too embarrassing to discuss.