Westwood Horizon

Invisible Illness: Crohn’s Disease

Mae Bruce, Reporter

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Crohn’s disease is an inflammatory bowel disease that severely affects the digestive tract, usually inflaming the small intestine. It currently affects about 700,000 people in the United States. Autoimmune diseases like Crohn’s disease are known to be hereditary, passed down from generation to generation, and are usually diagnosed in children and younger people. One particular case at our school, told by someone who has chosen to go by Avery, tells her story of her personal struggles with Crohn’s.

“Crohn’s disease is basically an autoimmune disease where it affects your small intestine and it covers it with ulcers,” Avery said. “Basically all the nutrients you would normally get, it hogs them up and your own body is fighting itself. The thing that sucks about it is that your whole childhood, you can’t really gain weight but you’re supposed to eat a lot and you’re also disgusted by food.”

Avery has dealt with the diagnosis from a young age, growing up with the hardships of Crohn’s disease. Autoimmune diseases like Crohn’s are found in genetics, and often times if a parent or grandparent dealt with a disease, it will get passed on to the child, because most diagnoses happen from a young age.

“The part that sucked was I got diagnosed when I was in second grade,” Avery said. “Autoimmune diseases run in my family so it wasn’t that much of a surprise, that’s just what it was. I was sick all the time and I had to be put on steroids and everything. It was a lot going on at once and it was hard to deal with school and also be a normal kid. There were a lot of doctor’s visits.”

Autoimmune diseases don’t go away, since there isn’t a cure, which means that people diagnosed have to deal with the disease for the rest of their life. Relapses are bound to happen, and their lives become plagued with doctor’s visits and surgeries, much like Avery’s.

“In 6th grade or 7th grade, it relapsed again and it got a lot worse, this time affecting my esophagus,” Avery said. “It completely closed off my esophagus and I could only be on a liquid diet for a really long time. That part really sucked because I couldn’t eat at all, even when I was hungry. I would choke on stuff, and now I’m traumatized by choking.”

The most important thing when struggling with a chronic disease is building a support system. Friends, family, and others can help make the difficult time more bearable.

“One of my best friends, she would drop off ice cream and get me gum and just stuff I could eat easily and she would drop off lip balm and just stuff that made me feel nice,” Avery said. “And she genuinely cared and we hung out and it just felt nice to have someone by your side who wasn’t just your family.”

But every disease has its struggles. Balancing a chronic disease and life can be difficult, and with the added stress of school work and doctor visits, it can become overwhelming. Avery had to undergo multiple surgeries, leaving her missing lots of school and having to catch up while she recovered.

“The part that really sucked was just managing school,” Avery said. “I had to get a lot of surgeries done, every few months to expand my esophagus because it was so closed off. So especially like in 6th and 7th grade it was tricky. Because I was in middle school, and yes you don’t have too much work, thankfully it wasn’t in high school, but there’s still a lot of work. So the hardest thing was just talking to teachers, telling them about it, and being on top of my school work. Most of my teachers were really helpful, so it was okay, but it was a struggle and just catching up.”

There is no cure for Crohn’s disease, but there are surgeries that can help lessen the pain. There are two types of surgeries, an endoscopy and a colonoscopy. An endoscopy goes through the throat and down to the stomach to see where the problem areas are and how to fix them, and a colonoscopy can aid in getting rid of the ulcers in the stomach.

“The worst part was the night before [the colonoscopy], you have to fast the whole night and you also have to have a laxative,” Avery said. “So the entire night you feel sick and you can’t eat, you’re going to the bathroom a lot. That’s the prep. It sucks. You get to the hospital, sign a bunch of forms, you’re there for like an hour, you’re put in a gown, and then you go in and go to sleep. You’re asleep for a long time. When you wake up, it’s kind of the worst part — you’re in this groggy stage of where am I and your throat really hurts. You’re still asleep, basically, but you’re also very hungry. After that, you can only eat like wet foods for three or four days. If I get really anxious, it seems to flare up more. Stress is a really big part of it.”

Chronic diseases are invisible, and you can’t always tell just by looking at someone that they’re struggling with a sickness. When people make comments or don’t take time to understand what could be going on, it creates a culture of assuming that everyone is fine and exactly like you.

“I feel like when people comment on weight, it goes both ways,” Avery said. “Just don’t talk about it. You don’t know what’s going on in that person’s life to say something like that. That was the thing that got me was the ‘Oh you’re so skinny,’ but like you don’t know what’s going on and that’s why. Autoimmune diseases you really can’t tell by the eye. You never know what’s going on. I would be really sick but when you looked at me, I looked fine. It was always really hard to explain to people ‘No I feel awful,’ but you’re not sick, you don’t have a cold or anything, it’s all internal, but it’s a lot of pain all at once.”

Even though Avery is dealing with Crohn’s disease, she still is able to find positivity in the negativity of her life.

“The one thing that’s really impacted me and made me such a different person is being so proactive,” Avery said. “Stuff doesn’t get under my skin as much as it did when I was a kid. I realized these little things in life don’t matter. I just realized you have to appreciate everything in your life so much more and every moment you have it’s so important to live it to the fullest because you never know what’s going to happen. It’s just made me appreciate life and health so much more.”

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