Tuesday, April 15, 2014

My Life With Crohn's Disease

I almost didn't write this post because the subject matter is so deeply personal and the internet is not always kind. I decided to tell my story anyway, though, because maybe my honesty will help someone else. 

I've known since I was fourteen that I have Crohn's Disease. To be honest, the news was an unwarranted slap in the face. I had been sick for months. I woke up one morning and sprinted to the bathroom. I thought it was just a virus at first, but a week passed, and then another. It took a month for me to lose my conviction that the diarrhea, pain, and bleeding would stop on its own. It took two months for the pediatrician to realize I was not just hiding an unwanted pregnancy and that my symptoms could not be explained away with a hasty diagnosis of acid reflux and fixed with a prescription for an easy Nexium Band-Aid. I had had blood drawn, X-Rays taken, endured an Upper GI Series complete with a foul-flavored barium, and finally I was sent to a digestive disease specialist in Tennessee for a colonoscopy and upper endoscopy. The road to that moment was rife with unpleasantries and the apotheosis would prove itself worthy of the buildup. On a cold afternoon when I should have been in school, I was instead seated in a forbidding exam room and the doctor in front of me was telling me that they had reviewed the tests and that I had Crohn’s Disease.

It has been almost a decade since those first symptoms appeared and a lot has happened in that time. I developed a complication called Cheilitis Granulomatosa that causes intermittent swelling of my bottom lip. I had ileostomy surgery before law school when my stomach symptoms came back and cutaneous symptoms emerged for the first time. I needed pills and IVs, tests and shots, hospital stays and procedures. Over the years there have been ups and downs, remissions and relapses, triumphs and failures.

I am telling you this story now because I have not been well for most of the semester. My lip has started to swell again and I got a stomach ache a couple of weeks ago that hasn't gone away. I had an appointment with my gastroenterologist today and he was worried enough about the symptoms I described to schedule an ileoscopy and colonoscopy next week. He assures me that if he finds active Crohn's Disease, there are medications more advanced than the Humira shots I've been taking for the past few years. Despite his reassurances, I am afraid. 
My lip has been so swollen lately that I hate to leave home. I can see people staring at me on the street. I know that I look like a monster. Trust me, I know. I wish I could explain that I look this way because I'm sick and I can't help it anymore than a person in a wheelchair can help their disability. I wish I could tell them how much pain those stares cause me. I wish I could just disappear. In real life, I try to hide behind my sarcasm and sense of humor, but I'm pretty sure it doesn't help. I'm hoping that my doctor will change my medication after my appointment next week. I'm hoping that I will look like myself in time for graduation. I'm hoping it won't last forever. I almost didn't write this post because being vulnerable is hard for me. I decided to tell my story anyway because maybe by reaching out, I will find that I am not alone. 

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