The Truth about Crohn's Disease

My name is Alexis, I am twenty three, and this is my story.

I want to talk about something people don’t usually talk about: ulcerative colitis (UC) and Crohns Disease in young people. I have moderate to severe (more towards severe) UC. I have had symptoms since birth, but they became more severe when I was around 13. I was sick after each time I ate. My parents and PCP thought I was a purger. I tried to tell them it wasn’t true and that I simply got nauseous and would vomit after I ate anything and couldn’t help it. I was forced to sit at the table or in the living room with one of my parents for at least an hour after I ate. Needless to say, it didn’t take long for them to realize my vomiting was not self inflicted. Once my parents were on my side, it was easy to get my PCP as well. I was sent to a pediatric gastrologist. I was poked and prodded and given nexium for acid reflux, but ultimately swept under the rug again because someone my age couldn’t possibly have these issues. Multiple ER visits ensued over the years. One ER visit was much worse than the others, and I had one mad momma. They did ultrasounds and saw that something was not right. I was set up with Children’s for an upper and lower when I was 16. They found two things: I was compacted up to my stomach (yeah, I know: HORRID), and I had ulcers lining my digestive tract. I was cleaned out, they took biopsies, and I was sent on my way. I was told that ulcers just happen to some people, that with acid reflux it could happen, and for the fourth time, I was swept under the rug. I dealt with the pain and nausea and vomiting and diarrhea and constipation for the next 3 years. My second semester of freshman year of college, I got incredibly sick. I lost nearly 20 lbs in a week and a half. I was in and out of the hospital every few days. I couldn’t eat, I couldn’t sleep, I couldn’t move, and I was passing blood from places you should never pass blood from. I was in and out of the hospital for four months. I had to quit school. FINALLY, by nothing that could be anything but the grace of God, there happened to be a fill in ER physician from Little Rock. He was appalled and infuriated by the lack of tests that had been run on me with all my symptoms and visits. I was sent to a specialist in LR. I had 3 colonoscopies and EGDs in two months. The first 2 happened within 2 weeks. Ulcers lined my esophagus all the way down to my colon and rectum. I was put on 6 medicines taken multiple times a day, but we had a prognosis: Crohns. I also had to keep a food diary. EVERY SINGLE THING I ate HAD to be written down. Trial and error, that’s all you can do to find what triggers the symptoms. After the third procedure, we had a diagnosis. I didn’t have Crohns after all, I had UC. Months went by with doctor appointments every 2 weeks and then every month with multiple medicine changes. You see, there is no cure for these diseases. You can simply manage symptoms. I ended up taking Humira because no matter what else I took, regardless of dosage, nothing touched my symptoms. If you don’t know what Humira is, look it up. Look at the side effects. It’s taken by self injection. I did mine once every two weeks. In the stomach. About 2 years ago, I quit Humira and began taking two different pills from plexus and many other supplements and vitamins and minerals. I now supplement those with Apriso and Imipramine. Although there is no cure and I still get sick, my good days far out weigh my bad now and my symptoms are not near as severe. I don’t want other kids to go through what I did. What they feel is real. It isn’t in our heads. We aren’t making this up. Just because you can’t see it and this is “an old person’s disease” doesn’t mean it isn’t real and pediatric cases don’t exist. We should NOT be swept under a rug. My name is Alexis, and I have UC, but UC doesn’t have me.