In 2015 I was diagnosed with Crohns Disease. Crohns is a chronic inflammatory bowel disease that has no cure but with treatment and immunosuppressants, the progress of the disease can be slowed down and sometimes remission is achievable. In order to be diagnosed, a patient will go through a colonoscopy to get imaging of the digestive system.
When I was diagnosed, it was July and I was soon to be starting college in the fall. I was an anxious teenager, excited to move on to the next chapter in my life. Lab testing and colonoscopies were the last thing on my mind but unfortunately for my doctors, it was the first in theirs. I went through the horrendous prep that is the colonoscopy prep and had nothing but ice cubes and clear fluids for 24 hours. The next day was the big day and I went in for the procedure. It was about a week later that I got the call saying that I had Crohns. I was nervous and worried for what that entailed as I really had no knowledge of the disease. All I knew was that the way all my doctors talked, it sounded like the sky was falling. I was taken back in for a consultation to talk about what exactly I was up against, how we dealt with the disease and what the next steps were for me. The doctor told me my case was one of the worst they'd seen. We started off with Humira where I injected myself with a shot every other week. Unfortunately, as my Crohns progressed, my body stopped responding to the medication. The next decision was to start infusions which last approximately three hours. Currently, this is what I still do.
What's this like for a college student? The day-to-day life is pretty much normal... with the occasional quirk. A pretty typical week to week goes something like this.
Breakfast, lunch or dinner at the campus serve
"Hmm... tacos that will ultimately upset my stomach for the rest of the day, cheeseburger and fries that I will regret eating later, rice and mild chicken dish. I'll go with the safe option." Choosing foods that are served to all students can be a struggle because I choose what I like but also what's best for my stomach. Raw fruits and vegetables, gluten, spicy, among other options all can be upsetting to my stomach so the choices are sometimes limited unless I try to make a quick, easy meal in my dorm between classes.
"So what exactly is wrong with you? Why do you go to the hospital for infusions?"
No, I'm not dying. No, I'm not being rushed into surgery anytime soon (so long as my organs all decide to keep the sh*t together). I'm fine and healthy and normal. I sit for three hours in a big, comfy chair with an IV hanging above me so that I can remain a normal college student. The infusions keep my intestines and colon and other exciting digestive organs doing their jobs properly. On the plus side, I have an excuse to be unproductive for an evening as the infusions make me drowsy.
Vigorous activity can get to me easier
I love to work out (which is actually good for someone with Crohns) and I love being on dance team. But these things can easily take a toll on me. I'm typically fine to keep up with everyone but some days are harder than others.
Stress does a number on me
A big exam, not enough sleep, or a dance performance can all do a lot of damage. Stress of any kind can really cause some upset to my insides and I usually have to step back and take time for myself at some point.
My weekly pill organizer would make most wonder if I'm an addict
I'm typically on a number of pills at one time. Iron for the anemia caused by Crohns, vitamins to keep me reasonably healthy, immunosuppressants, steroids that calm the inflammation, etc.
Living in a dorm means catching every cold and flu out there
Being in close quarters makes it easy to spread illnesses from person to person but living in close quarters and having no immune system means I'm a walking target. I wash my hands roughly four to five times more than a normal person, sleep elsewhere when my roommate is sick, clean and scour the room after either of us has been sick and take a lot of precautions just to stay away from a cold, the flu, strep throat, or whatever else is going around at the time. With no immune system to fight off any sort of infection, it takes me several days more than normal to bounce back.
Even though daily life can mean choosing not to have the meal I prefer or washing my hands until they're absolutely dry, I do maintain a pretty normal college student life (what is normal anyway?). I laugh at my struggles and ask for help when I can't. And that's a daily life with a chronic disease.