Imagine being told you have Crohn’s disease at age 16. That’s what happened to me. All I heard was the word “disease.”
I was about to start my senior year of high school. I was feeling sick for a long time and kept it under wraps because I thought it would go away.
I started losing weight (at an extreme rate). Bathroom trips were more frequent, and I often saw blood. I didn’t have much of an appetite. Eventually, it got to the point when anything I put in my body made me sick.
I had no clue why I felt so sick. I finally told my parents that I wasn’t feeling well, and the next thing I knew I was in the emergency room. I was down to 88 pounds. I felt horrible, and was in the hospital for a week.
Three days into my hospital stay, and after numerous tests, I was finally diagnosed with Crohn’s disease. Little did I know about the whirlwind that was to come.
After my diagnosis, I was prescribed medication to slow the inflammation and control the disease. But this was short-lived. I found out I was allergic to a drug called sulfonamide and had to stay away from anything containing it. I had to find a different treatment.
I started Remicade next to slow inflammation and help control the disease. This came as an infusion. The drug was new at the time and not many people were on it — my doctors thought I’d be a good candidate for the treatment.
The infusions would last between 3 and 4 hours and I would get them at a doctor’s office. The office staff made the room very comfortable with reclining chairs, TV, snacks, and more, and I actually loved my infusion appointments.
I stayed on Remicade for 10 years but then my body started to be immune to it and I felt like it wasn’t working for me anymore. It felt like my body didn’t like it anymore, so my healthcare team started to suggest new medications they felt would work for me. Humira was the next medication I tried.
This drug is administered by a self-injection. Although I hated the idea of giving myself a shot, I agreed to try it.
It worked for a while, and I guess you could say I went into remission because I was able to stop all treatment and was feeling OK. When I wasn’t feeling too well, I would go back on steroids. All in all, it felt like I finally had my Crohn’s disease under control.
A few years went by and out of nowhere, my symptoms came back. I tried to work through it, but that didn’t last very long.
I was in pain for almost 5 years, in and out of the hospital with no solution in sight. There were countless visits to the emergency room, medications, tests, hospital stays, and many nights spent crying. I felt like I would never get better.
I had to leave two jobs because I wasn’t well enough to work. Depression and anxiety were a major part of my life at this point.
After a routine colonoscopy, I wound up getting emergency surgery because I had a perforation on my colon. They were going to try to save what they could. I woke up from surgery not knowing what happened.
The doctors came in to check on me after surgery, and I was informed that I now had a colostomy bag. This was my worst fear — I never wanted a bag, no one does. I personally thought it was disgusting at the time. My surgeon assured me I would have the bag for 6 months and then it would get reversed.
I started my countdown. I didn’t want to come out of the house during this time. I was so embarrassed about the way I looked since I lost so much weight.
Five and a half months after my surgery I received the news that my surgery couldn’t be reversed and I would be living with the colostomy bag. Honestly, it felt like my world had been shattered into a million pieces. I just wanted to live my life.
Soon after receiving that news, I had my colon removed as well. I began to try to get over the fact that I now have this bag forever. I called it my “new normal” because that’s just what it was. I was learning myself all over again because I felt like a different person.
In all actuality, I became a better person. I started sharing my story and educating my friends and family to help them understand. This by far has been the wildest ride I’ve ever been on, but I wouldn’t trade it for the world.
I’m stronger than ever now, and I’m extremely grateful to every doctor I’ve come in contact with for helping me.
Born and raised in Philadelphia, Raechelle “Chelle Slaysit” Bright is a licensed cosmetologist and certified lash technician. Additionally, Raechelle teaches a hair class for young girls called “Youngest in Charge: Intro to Slay.”
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