My Horror Story Diagnosis
I was about 9 when I started getting stomachaches I would be riddled in pain unable to eat and had to miss school a lot. I didn’t know exactly what was going on or how to explain to my mom and dad how much pain I was in. We went to the hospital and they sent me home with steroids and pain meds, but it didn’t help and added bonus... I got extremely overweight, now if you’re wondering if that affected me in school? ABSO-FREAKING-LUTELY, but that my friends is a different story for a different blog. So after years of being on steroids they eventually stopped working. I was about 13 when my nightmare actually began and had just started high school, I can remember being in school and just started shivering, then I started getting out of breath, I immediately went to the nurse and that’s when I started using the bathroom uncontrollably, the nurse thought I had caught a stomach bug,I stayed home for a week and to no success did my “stomach bug” go away. I started throwing up what we now know was partially stomach acid, because I hadn’t been eating. I lost 20 pounds in two weeks my mom said enough was enough this was no bug she rushed me to our local hospital and they told her we had to be transferred to Children’s Hospital I stayed in the hospital for two months and in that two months I lost 80 pounds.I went from 190 to 110. I was an absolute skeleton, once I had my system completely stable my doctor told me that I had Crohn’s disease, an inflammatory bowel disease. Looking back at the time I didn’t realize how much this would affect my life, I just thought of sickness as something that could be cured with medicine, WRONG. I went through a circus of trying to find the right combination of meds, my doctor however didn’t tell me the side affects and what I would actually be going through the next two years. Over the next two years I slowly started gaining weight, which was awesome. The puking,constant stomach pain,nausea,fatigue and hair loss, 6 monthly hospital stays were not. I had hair to my waist and lost all of it, we found out later my doctor was giving me medicine cancer patients also take. I didn’t get better I got worse. My mom wasn’t having it any longer I heard her one night crying to my grandma telling her the doctor was killing me and she couldn’t sit back and watch me die. She pulled me from my doctor’s care and took me to John’s Hopkins and we started Remicade which was in its testing phase I was 15 putting my faith into another doctor who was selling me dreams about a new medicine only 12 or 13 people in the U.S were taking, scared wasn’t the word I had a plethora of emotions, but it worked. However, as I’ve gotten older and my condition has worsened the Infliximab stopped working I developed antibodies to it. Now at 24 here I am facing the same problem I was when I was 15. We’ve switched to Humira and are now waiting for the shipment to come in so I can get back to a semi-normal life. I started this blog to show people that they aren’t alone, when I was 13 I felt so alone and helpless because I had no one who understood what I was going through and I want to show if you’re going through it with your IBD I’m here with you fighting and struggling for a cure,and most of all a life not controlled by this disease.