I want you to think about a time that you had a stomach virus. We’ve all had one at some point. Horrible nausea. Frequent trips to the toilet. No energy to get out of bed. Now, imagine having a stomach virus that never goes away. This is one aspect of what it’s like living with Crohn’s Disease.
It all started when I was 12 years old. I was hosting a wannabe-swanky Christmas slumber party. My friends and I indulged in shrimp cocktails and were pretending to be grown-ups as we swished our glasses filled with non-alcoholic wine, just like girls out of a ’90s rom-com.
When suddenly, I came down with what I thought, was the most vicious stomach bug I had ever experienced. I lay down in the other room in a daze, hearing music playing as the other girls enjoyed their night.
Little did I know that this would be the first of many times that Crohn’s disease would isolate me from my normal life.
My near-perfect attendance record quickly disappeared and I would miss at least two days of school a week. I lived just down the block from my elementary school, but what used to be a short walk seemed to grow farther and farther away.
Months passed, and after frequent trips to different doctors, professionals still couldn’t explain why I wasn’t getting better. My illness consumed my thoughts with fear and slowly drained any child-like lightheartedness that I had. I was at the point where I would shake and sometimes even vomit from fear when going to the doctor because of speculation about what might be wrong with me.
There was still no diagnosis when I got to high school, but my symptoms seemed to have calmed a bit. I learned to manage the constant discomfort I felt.
That year, at 14 , I got a tetanus shot. Later that night my arm felt like it was on fire. My upper arm doubled in size and was as red as a bright tomato. I went to the bathroom to get a better look and felt a warm stream trickling down my arm.
I looked down and I couldn’t believe what I was saw. Blood and pus was all over the bathroom floor. I had a hole in my arm that went right to the bone.
I broke down from complete terror and my mom drove me to the hospital. The doctor didn’t really react as though it was a big deal and sent me home with antibiotics.
By Grade 10 my symptoms seemed to come back with a vengeance. I started struggling at school. I was found multiple times by classmates, passed out in the bathroom. I was also falsely accused of cheating due to the frequent amount of times I had to go to the bathroom during tests. These bathroom trips alone completely mortified me because I was centered out when all I wanted to be was invisible.
To say I went through an ugly-duckling stage would be an epic understatement. I had become so thin my uniform no longer fit, and had acne and purplish-dark circles around my eyes. Let’s just say the party invitations weren’t exactly rolling in.
During that semester, I had become bed-ridden. I could barely sit up without laboured breaths and was going to the bathroom near 20 times a day. I didn’t have the strength to go from my bed to the toilet, so my parents could never be too far away.
I developed sores all down the back of my legs, an auto-immune reaction caused by the disease. There was one sore on my left thigh the size of a golf ball that scared me. The skin around the wound was deteriorating and left a gaping hole in my leg.
I remember telling myself one night that it would be okay if I didn’t wake up in the morning because this wasn’t the life I wanted to live.
The next day, I was barely coherent when my dad carried me to the car, with my mom in tow for yet another trip to the ER. This time though, it was different.
I was admitted immediately. The doctors told my parents that my organs were starting to fail.
A wound nurse was brought in to dress my sores. The process was so painful I was put on morphine and codeine as she cleaned and dressed my leg.
I couldn’t eat, so all of my nutrients were taken intravenously. Since I was also extremely anemic and protein deficient, my veins would blow every couple of hours. Nurses would constantly poke me with IV needles and I was left with black and purple bruises all over my arms.
After two weeks in the hospital and many tests, I was given the diagnosis of Crohn’s disease. The Mayo Clinic describes Crohn’s disease as inflammation of the digestive tract that can be painful and debilitating. Some symptoms include: abdominal pain, frequent trips to the bathroom, weight loss, malnutrition, fatigue, loss of blood and joint pain.
I was given my first dose of medication and sent home. I’ve been put on multiple medications since, and have worked through many bouts of depression even taking time off school to get myself back on track.
I’m now 23 years old, facing the very real possibility of my colon being removed. Currently my only option is to have an ostomy pouch, which is an external bag that attaches to your abdomen to collect waste.
The most difficult part of my disease isn’t the physical symptoms. It’s the fact that Crohn’s makes it hard for me to connect with others. My absence, I’ve been told, can be interpreted as me being stuck up, when in reality I want more than anything to have a normal social life.
Living with Crohn’s disease is living with an invisible disability. Whenever I’m in public, I’m consumed with knowing where the closest bathroom is at all times and constantly have to bail on conversations because I am experiencing stomach pains. It sucks.
But it hasn’t all been bad. When I was 19 years old, I met the most amazing guy who loves me for who I am. Whenever we go somewhere new, he quietly points out all of the bathrooms, which is the sweetest gesture you can do for someone with Crohn’s.
Living with an invisible disability taught me the importance of gratitude.
I’ve let myself mingle in pity parties on more occasions than I would like to admit. But, now I recognize how lucky I am to have such amazing support from my family, intimate group of friends and boyfriend.
I am no longer embarrassed about my diagnosis. Everyone has their own struggles, mine just happens to be dealing with a chronic illness. I don’t let Crohn’s define who I am, but the struggles I face with this disease have helped me become stronger than I could have imagined. I’ve learned how to make the best of a crappy situation. Pun definitely intended.
This article was published in the print edition of The Ryersonian on Nov. 11, 2015.