When I was 13, I was diagnosed with Crohn’s disease and Seronegative Enteropathic Arthritis.
Over the course of the last 13 years, I have taken every medication under the sun approved for these conditions, all of which have terrible side effects and detrimental long-term possibilities. The medications used for these diseases are called “TNF Inhibitors,” which suppress the immune system to prevent it from fighting itself. However, in suppressing the immune system, I’m at an increased risk for infections and rare cancers. I’ve also been on Prednisone on and off for the entire time I’ve had this, and that has caused osteoporosis. I’m also one of the few with Crohn’s that ended up getting two pyrodermas on my legs several years ago.
Now at 26, I have come out of remission with a roar. In January of this year (2015), after having been in remission for quite some time, I noticed that my Crohn’s symptoms were beginning to crop up again. I lost her appetite, and even when I could eat, food went right through me. As a high school English teacher, I found myself trying to juggle finding the energy to go to work and stay in the classroom and out of the bathroom, but within days, I couldn’t do it anymore. I left work one day and haven’t returned. During the three week period that followed, I lost over twenty pounds, and was admitted to the hospital on February 12th after a night of throwing up bile and shaking uncontrollably from the dehydration. I spent two weeks there getting infusions to calm the symptoms.
The doctors and nurses were absolutely extraordinary, but we know that there is a lot that needs to be done going forward. While in-patient, I was on high doses of steroids, Remicade (a TNF inhibitor given by infusion), and pain medication to keep me from crawling out of my skin when my symptoms go through the roof. I also had a PICC line in that is giving me the nutrition that I needed since food was out of the question.
The Remicade and steroids made my body feeling like a nuclear power plant. The drugs were covering up the symptoms, but they are not assisting the root of this horrendous disease. After my discharge from the hospital on February 24th, I made plans to travel to the Mayo Clinic in Minnesota to meet with the best doctors in the country that work with over 4,000 Crohn’s patients per year.
Going to Mayo was the best thing I have ever done for my future of health and well-being. In this section of my website, you can expect to learn about my journey back to remission. Some days, my posts will show my strength and bravery. Other days, my posts will echo with sadness and despair. Living with a chronic illness is a day by day journey, and I’m learning to allow myself to feel all of the feelings that go with that.