A few years later, I was lying on the bathroom floor of my local emergency room drenched in sweat. I’d had strange “episodes” every six months or so when I would wake up out of a deep sleep in labor-like pain. It would last a few hours until the pain broke in a wave of nausea so intense, I would leave the restroom shaky and exhausted. During my third “episode”, the pain didn’t give up but continued to grow. I decided I’d had enough and would sell my soul for pain-relief, so my husband drove me to the emergency room while I held trash bags in my lap. I didn’t make it very far before the pain “broke” in the emergency room bathroom; and by the time I was seen by a doctor, I was already recovering.
When the emergency room physician told me that my CT scan indicated that I had Crohn’s disease, I thought of my friend’s brother. I immediately labeled myself no longer fit to raise another person’s children. I later learned that the pain I’d felt was due to a partial small bowel obstruction, and I would come to find out that these agonizing episodes would be my constant, shadow companions.
When I saw a gastroenterologist for the first time, my colonoscopy showed a very mild form of Crohn’s. When I had my next partial small bowel obstruction, I prayed for the pain to pass as I vomited everything I’d eaten for days. I was pretty sure this wasn’t a “mild” case of anything, so I found a new doctor who diagnosed me with moderate-to-severe Crohn’s disease after a new round of tests. He showed me pictures of the high-grade stricture that had formed from ulcers that could only be visualized by swallowing a pill camera.
I immediately started Remicade but the stricture continued to narrow my bowel. I was hospitalized multiple times with a nasogastric tube, bowel rest, and steroids; and I couldn’t eat without fear that the food wouldn’t make its way through my small intestine. I missed weeks at work and was devastated when I missed my son’s first slumber party. I had three small bowel resections in four years and my friend’s brother has yet to undergo his first surgery. If I wasn’t fit to raise someone else’s kids in an emergency, was I even fit to raise my own?
The answer is “yes”. A million times yes. I might not be able to go on every field trip or travel as easily as others, but my husband and I can make lasting and important family memories at home. My kids tease me for taking so many naps, but I laugh along with them. I’ve shoved all of my prescription pill bottles in a red bag and we call it my “bag o’ pills”. When I have to use the restroom, I say I have to have “Crohn’s” which is code for “get out of my way!” And most importantly, I take the medication my GI prescribes to hopefully avoid future surgeries. I take care of myself when I’m sick so I can take care of them. And I’m happy to say, my daughter and son are intelligent, interesting, and funny kids who are growing up to be wonderfully compassionate people.
My disease is a huge part of me but it doesn’t define me. It’s given me the opportunity to help others who are also sick by sharing a part of me on my web site, LivingSick.com. Blogging has allowed me to meet very strong, community-oriented individuals whom I wouldn’t have had the chance to get to know if I didn’t have my disease. And for that, I am truly thankful.