My Crohn's Story

     I was diagnosed with Crohn's disease on November 8th, 2014, when I was just sixteen years old. Prior to my admission to the hospital, I had been feeling sick and weak for nearly three months. It began as a small stomach ache, then rapidly progressed to loss of appetite, nausea, diarrhea (TMI, I know, but it's what happened...), and finally internal bleeding, which is what prompted me to tell my mom and go to the hospital. I had also fainted several times and lost nearly 25 pounds by the time I was admitted to the hospital. We arrived at 11:30pm, and within an hour I was back in a room on a double IV of saline. It all happened rather quickly as far as I can remember. The doctor came in and asked about my symptoms, ran some small tests, and by the next morning I was doing a bowel prep for a colonoscopy. Let me tell ya, I hated Gatorade for months after that because of all the Miralax I drank with it....

    That afternoon I went under for the procedure, and by about midnight I was coming around from the anesthesia and the gastroenterologist came in to give me my diagnosis. I was scared out of my mind. All the days of feeling sick that I thought were just a stubborn stomach bug had turned out to be an incurable disease that I have to live with for the rest of my life. I felt like someone had thrown me off the side of a cliff, or was holding me underwater. It was almost surreal in it's scariness. I was in the hospital for a total of two days to have the procedure and then be monitored after I was given my first dose of medication, during which the GI doctor explained my disease and how it would affect me.

    For the next month or so, I was on a highly restricted diet and taking a steroid called Prednisone, which is the initial "go-to" medicine for a Crohn's patient. It helped calm the inflammation and reduce some of my symptoms, but as soon as I began to wean off of it, my symptoms returned with a vengeance (think a cat that looks like it's going to curl up with you, then decides to attack your arm just for being there). At that point, my doctor and I decided to move to biologic treatments in the form of Remicade. For the next two years I had infusions every seven weeks, and I was almost in remission one year in. I'd had some mild symptom flares here and there, but nothing to be too concerned about.

    Then things took a turn for the worse. I turned eighteen and aged out of state medical coverage, and couldn't get my infusions anymore. We had stopped treatment in January of 2017 because I was having double jaw surgery that March, but we didn't know until after the surgery that I no longer had coverage. At that point I started to go downhill. First it was general fatigue and a bit of nausea, and as the months passed it became severe abdominal pain and intermittent bleeding. I had tried to hold down a job during the summer, but by November I had to quit due to pain and internal bleeding. November 30th I was back in a GI office and given a prescription for another round of Prednisone. That kept me relatively stable through December and January, but by February 2018, I was flaring so badly that I quit college and another part time job I'd taken on. I felt miserable, tired, and sickly all day, every day, and have just recently begun to feel better. In mid-February when the flare hit hard, my GI doctor recommended that I apply for Humira's financial aid program to see if they would cover injections for me, so now I'm waiting on that decision.

    I'll be honest, I haven't had a lot of hope over the last few months. The only other time I've felt this sick was before I was diagnosed, and now I'm completely uninsured and can't pay for any medications. I can only pray that they approve the medicine and that it WORKS if they do...

    Well, that's the story so far! I've left out the details about how it affected school and such, but I'll be covering those in a different posts, so no worries. I will update when I have any news about the Humira or other medical updates. Stay awesome, my lovelies!