Bowelhemian Relapsody

As many people with chronic diseases know, sometimes you have to ask yourself, “Is this the real life, or is this just fantasy?” (Bohemian Rhapsody by Queen).

I have learned, however, that everyone, in thier life, is probably going to experience something chronic. Now, whether this is physical, mental, spiritual, or abstract will be different from person to person. Perhaps a person will experience it all. However, this is the real life, and these challenges that Invisible Diseases present us with are blessings, too.

Many people find out they have Crohn’s when they are in thier young adult years. Few are diagnosed in thier middle school years, and even fewer in elementary school (https://www.crohnsandcolitis.com/crohns). If you click on this previous link, you will find out that most people experience symptoms that are mild to severe, and 67% of people who have been in remission will have a relapse in the next 5 years.

For me, relapse was one of the most terrifying times of my life. For 700,000 others in the United States, it is a terrifying time that they will all most likely experience. That’s how many others have Crohn’s within the U.S. alone.

When I was a First-year in college, I stretched myself too thin doing too much in too little time. What I didn’t realize is, when you get stressed with an autoimmune disease, your body gets very angry with you.

At that time, I had been taking a medication called Remiade intravenously (through IV) every two months since seventh grade. I had been warned, when I first was diagnosed, that patients can become allergic/immune to the medications that keep them alive.

The moment you find out you can’t take a medicine anymore is terrifying. I am lucky because I have the most common type of Crohn’s Disease. Therefore, there are at least a few more options for me. However, once you run out, you run out—so that is a little scary.

My first clue to Remicade immunity was a flare up. What that means is: I was in severe stomach pain for a few days, thinking I had food poisoning. By the time I got to the hospital, my intestine had swelled up, closing the opening in it. After five hours of ineffective morphine (I should have said 10 instead of 8 on the pain scale, I guess), they gave me some steroids and sent me home. For the rest of my life, this scar tissue will be more prone to tears, flare-ups, and infection. I still have pain there every once in a while.

Two treatments after that, I started having trouble breathing and talking. I barely noticed because I was sleepy, as I took Benadryl before every treamtent to ensure that allergic reactions didn’t happen. Thankfully, my best friend noticed and called over a nurse to give me some steroids.

After that, I spent the summer in a limbo with no medical insurance (my mom lost her job), two teeth that needed root canals (Crohn’s malnourishes you AND you teeth), and no medication.

Finally, I was put on Humira with Imuran as a little helper. The Humira website can be found here: (https://www.humirapro.com/dermatology?cid=ppc_ppd_humiraderm_hcp_ggl_brnd_6435).

This new medication terrified me because I would have to give myself a shot every two weeks. Thankfully, my dad has diabetes, so he helped me find the courage to do so. We also have some amazing and supportive nurses at Hiram College who helped teach me to inject myself.

In the end, this is my real life. It is terrifying, but I also know that I am blessed to be where I am, and I am blessed to be able to have treatments that keep me alive.