I’m 16 and I have Crohn’s Disease. Here’s Why I Finally Decided to Share My Story.

“Although Crohn’s is a rare disease, people all around the world have it, and I know what it feels like to feel like you can’t tell people because they just wouldn’t understand.”

As told to Andréa Butler by Rachel Asiedu

Life before my diagnosis was normal. I played with no limits, and I ate whatever and whenever I wanted to.  But back in the summer of 2015, going into my freshman year of high school, I was at church camp and I was absolutely miserable. I’d never once been sick without my mother being there to take care of me, and I was in the middle of nowhere with no cell service and a terrible stomach flu — or so I thought.

When I was first diagnosed with Crohn’s disease, I was frightened. I thought I was going to die. I thought I would look sick for the rest of my life and no one would want to be my friend. So many thoughts ran through my mind, especially because I’d never heard of the disease before. But with time, I slowly began to accept the fact that I will live with this forever, it isn’t the end of the world, and it doesn’t define me. I will still be able to go to college, get married, have children, and live the life I always envisioned before I was diagnosed.

Crohn’s disease falls under inflammatory bowel disease (IBD): There is UC, which is ulcerative colitis, and there’s Crohn’s disease, which is more severe than UC. Basically, Crohn’s is inflammation in the gastrointestinal tract where your large and small intestines are. Doctors and scientists have no explanation as to how you get Crohn’s, but some say it is environmental. Crohn’s is not contagious, and it’s not a disease you can pass on to your children. It really just happens.

Sadly, Crohn’s disease has no cure, but there are various types of medications out there like Humira, Uceris, and Remicade, just to name a few, that can put you into remission. Right now, I am taking Remicade, which is a medication received through an IV, and I go to a clinic every eight weeks to get that done.

There are a lot of foods that cause my Crohn’s to flare up. Milk is definitely the main component of my flare-ups, and then next I would say is tomato sauce, probably because of the acidity. When a flare-up happens, I try to stay positive by thinking positive thoughts and distracting myself. I am a die-hard Beyoncé fan, so anything Beyoncé is a good distraction and helps ease my mind and pain.

Living with Crohn’s has affected my life drastically. I had my first colonoscopy when I was just 13 years old. I had my first liver biopsy when I was 16 years old. I’ve had CAT scans and MRIs; I’ve taken steroids, other horse-sized pills, Humira, and so many more medications that I can’t remember the names of. I used to have to time my eating because if I ate too soon or too late, my stomach would hate me for the rest of the day. I couldn’t run or even walk for too long before I felt like I was going to faint. My hair would fall out, and I lost so much weight my clothes wouldn’t fit. I felt like I spent 24/7 in the bathroom, or thinking about the bathroom, or thinking about how hungry I was, but if I ate anything, I would have to lay in bed for the rest of the day. Now my life is very different. I am very grateful that even though I went through a lot, I am alive. I can eat without feeling like it’s the end of the world, I can exercise, I can hang out with my friends, I’ve gained weight, and I have so much more energy. I feel great overall, and I thank God because there were so many moments where I shouldn’t have made it but did, and for that, I am eternally grateful.

My support system is my mother, and without her I’d be nothing. She always takes me to every, single appointment; she is always there to comfort me, and she is so strong — she never complains, she never shows fear or pain when she knows I’m nervous, she always prays for me, and she always makes sure I am eating the right things. I just love her! My advice to anyone with Crohn’s who doesn’t have a support system would be to go on the internet. There are a ton of websites and hotlines for people who just need someone to talk to.

And if you know someone with Crohn’s, treat them exactly how you would treat them if they didn’t have it. Unless they specifically tell you to do or not to do something, respect them and just know that they are human, too. My advice for when a friend or family member is in pain is to just listen to what they are telling you. I know that when I am in pain, I tell anyone and everyone around me to stop talking because, maybe it’s a mental thing, when I’m in pain and people talk, it tends to make my pain worse.

We always hear about people sharing their stories about surviving cancer and living with diabetes, anxiety, depression, and more. I am always seeing people come together to talk about how those stories have helped them seek help and find themselves again. That is why I find it so important to share my story, too, so people like me can find someone to relate to.  I may have been through a lot, but I am just a normal teenage girl in high school who has dreams and aspirations just like you.

Photo courtesy of Rachel Asiedu

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