What It Feels Like to Have Crohn’s Disease

Morgan Miller has struggled and continues to struggle with her deathly disease. She has surpassed doctor expectations and battles every day, living years after expected. Miller is in remission, but could experience a relapse at any moment.

My health has been a concern of mine for my entire life. As a child, I struggled with symptoms that the doctors could not find a solution for. I cannot remember a day when I was not sick. The bad days trumped the good, and, although I was very young, I could sense a difference between myself and the other kids. I did not get to experience what it feels like to be a “normal” girl, mostly because I spent a lot of my time in a doctor’s office or hospital. Everyday and every trip to the hospital was filled with hopeful and encouraging words from my parents, but mostly, worry. I remember the expression on their faces whenever test results returned back with more question marks rather than solutions. Before the diagnosis, my childhood, to say the least, was very troubling. It was a constant struggle for my parents, mostly because of the hospital and medication bills. Medicine costs money, and getting better was the main focus no matter the price.

Eventually, I was diagnosed with Crohn’s disease. I was officially diagnosed with the disease in fifth grade. Going into middle school, I did not know anyone that could relate to my pain or suffering. My grade school days were filled with medical testing instead of school testing. In all reality, I did not spend a lot of time in school and was constantly being taken out of class for more testing or medication. It caused me to miss a lot of school, which intern made my grades suffer. I could not work to my full potential, which was really frustrating at times, but I knew that I had to get better. I was private about my disease until high school when I fully understood everything about it, so many people did not even know what I was dealing with on a daily basis.

Crohn’s is basically a disease that eats away at your digestive system. My organs are filled with ulcers which cause severe stomach pains. It causes me to become incredibly sick and incapable of getting through the day. The dreaded pain often comes in waves and has multiple side effects. The disease can affect everyone in different ways, but I mostly dealt with the stomach pains and a change in weight earlier on. I was severely malnourished, so I had been on steroids which caused rapid weight gain. I took trial medications in fifth and sixth grade, which is when the pain was at it’s peak. The major symptom was just constant stomach pain and I did not think of it as a big deal until the doctors started giving me medication. I started to feel normal, and I then realized how bad it had been. 

Over the years, I have grown to accept my disease and power through it. I could not give up and I needed to have hope. Currently, I am in remission and have no symptoms. Every seven weeks I get IV infusions of a medication called Remicade. I did not really know when I was younger, but now each treatment is about $15000. Because I have to get the medicine every so often in order to survive, it really adds up and is costly. I barely have an immune system because of my medication, so I am regularly at the doctor for “everyday” sicknesses. A simple cold or cough could put me into the hospital, but it is better than having to deal with the pains that result from the disease. It is strange for me to think how a lot of teenagers my age have not experienced a single hospital visit.

I have learned about patience with my medical experience. It is very aggravating at times, but I have learned that being angry does not help the situation. I do not know anyone else with Crohn’s and I would not say it is a super rare condition, but it is not extremely common either. For someone as young as I am though, it is very rare. There is not a cure, and although I am in remission, it could come back just as bad or worse. Over the years, I have had a much better run then I have right now. I still have pain and ulcers because they are triggered by stress, so senior year is making it tough for me. I am not sure yet about how it will go in college, and I am worried to find out.
Overall, I would describe Crohn’s disease as time consuming. Most of my life has been dedicated to curing my disease, and now that I am in remission, I know my future is bright and becoming brighter everyday. At the same time, I am worried about how college and my stress levels will impact it in the future. For right now, all I know is that Crohn’s is a part of me. It is something that is incurable, and I have no choice but to live with it.