Crohn’s Disease. Not many people know exactly what that term means, all they hear is the word ‘disease‘ which spurs a panic within them. I know what you are thinking and no, it is not contagious. But yes, it can be life threatening and at the very least, life altering.
The medical definition is “a chronic inflammatory disease of the intestines, especially the colon and ileum, associated with ulcers and fistulae.” My definition is hours spent on the toilet in excruciating pain, the inability to eat or sleep for fear of the pain, constant anxiety of where the nearest bathroom is and a lack of understanding from everyone around you, including doctors. That was my life for three years before a proper diagnosis and a treatment that worked.
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It all started when I was in grade eight. Throughout my life, I had always had a weak stomach where junk food and big meals made me feel sick, but no one thought anything of it. I had also always been thin but once again, not enough to trigger any warning signs. I went to sleepover camp that summer and found myself going to the bathroom more than anyone else. My councilors thought that I was fooling around during meals because I kept leaving to run to the washroom. I assured them that I was really going to the small, wooden outhouse located in front of the dining hall. I hated when there were other people in there because I did not want them to pick up on how long I had been there or be waiting for my stall. Unfortunately, in a big camp, there is not much that you can do about it.
Photo courtesy of Samantha Goodman
When I came home, my mom scheduled a doctor’s appointment at my family doctor to address the concerns of my stomach pain and constant bathroom usage. I was asked if there was blood in my stool (gross, I know) and there wasn’t so Crohn’s disease was out of the question. I was sent for blood tests, ultrasounds and drinking tests to see if it was celiac disease, lactose intolerance or something similar to that. Throughout all of this, I was wracked with anxiety over entering high school in September and the constant, excruciating, inexplicable pain at random times that became a normal thing in my life.
Moving from a small elementary school to a large high school was very difficult for me. It was incredibly daunting to go from knowing everyone’s face to being anonymous in the crowd. That is why it was so easy for no one to notice that I was withering down to nothing.
I entered grade nine weighing seventy pounds and the first thing I did was map out where every bathroom in the school was in proximity to my classes. I hated gym class the most because I found it exhausting. I did not have the energy to participate properly and it felt like everyone noticed when I ran to the bathroom.
Photo courtesy of Samantha Goodman
My parents were concerned but my grandfather was very sick with cancer at the time so they had to divide their attention between my health concerns and his. But, I had missed so much school and had become so thin that it was very difficult to ignore. I would shake when I was outside in the cold and walking upstairs would have me out of breath. All of the test results came back negative and it felt like I was never going to learn what was wrong with me.
One night, my dad said enough is enough and took me to the emergency room at SickKids Hospital in downtown Toronto. Normally when you go to the emergency room, you have to wait for hours until they will see you. This time, after they took my weight and temperature, I was immediately rushed into the first available room and sent for testing. This was terrifying because I knew it meant that there was something seriously wrong with me.
I spent a few days in the hospital where I was told I would have to endure a colonoscopy and endoscopy (which is a test where they stick a camera down your throat and up your butt to see what is going on in your intestines) but they were pretty sure that I had Crohn’s disease. I had no idea what that was and after a quick Google search, I was scared out of my wits.
It basically said that my small intestine was swollen which is what made eating so painful. In addition, it was not doing its job in absorbing nutrients from food which is why I was so thin and had no energy. The scariest part was that it can stunt your growth. I had always looked a lot younger than other people my age and I finally knew why. I also learned that I would have to be on medication to manage it for the rest of my life.
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I was started on steroids which were twenty little white pills a day to get my weight back and help with the swelling of my small intestine. I gained twenty pounds in a matter of weeks which sounds like it should be a good thing, but it was very hard on my self-esteem. People at school noticed my suddenly chubby cheeks and commented on it. I was very happy to have my appetite back but felt extremely self-conscious about the quick weight gain. The doctors were very pleased, but I was not at all. As a teenage girl, the last thing you want is to be told to gain more weight.
Photo courtesy of Samantha Goodman
Around this time, my grandfather passed away which was very hard on my family. He was the glue and the last of my father’s parents so I had to put my health issues aside and focus on grieving this tremendous loss. With this kind of anxiety comes Crohn’s disease flare-ups where the small intestine becomes inflamed. Stress is a huge trigger for this so I had to be careful with what I ate and how I was managing my emotions.
Once I completed a round of steroids, I was put on methotrexate injections. My mom had to give me a shot every week on top of the constant blood work I had to go in for. This was a very difficult time as well because I was not a fan of needles, especially not weekly. I know it was very hard on my mom because no parent ever wants to see their child in pain, especially not from their own hands.
The only good part was that my weight was stabilizing and I was able to go a month without a doctor’s appointment. They were very happy with my progress, which was a huge relief as the treatment does not work for everyone. Some people go through a lot of different medications, endure horrible side effects and some even need surgery to remove part of their intestines.
After two years, I was finally put on Remicade which is an IV every eight weeks. This was a huge relief as I no longer had to take any pills or injections other than the needle in my hand and blood work every few months. I could eat whatever I wanted (for the most part, corn and raw vegetables are some of the foods that are difficult to digest and I still stay away from) and exercise without feeling exhausted. I even continued with gym class when it was no longer required as well as joining the cross country and badminton teams. This is something I never would have dreamed of in grade nine gym class.
Photo courtesy of Samantha Allison
Now, I have finished high school and embarked on my next chapter at Carleton University. Looking back, I wish I could tell my grade nine self to hang in there. I would say that someone will understand eventually and that you are not the only one who can see your suffering. I have without a doubt become a much stronger and resilient person after going through this at such a young age and during such a crucial time in my life. Although I will be on Remicade infusions for the rest of my life and will have to manage flare-ups forever, I will always be thankful for feeling healthy and mostly pain-free. I know what it is like to suffer from a chronic illness and I want others to know that it is manageable and you can get through it. The next time I have to explain what Crohn’s disease is to someone, I will send this article to them because it is not just a medical term, it is a journey filled with ups and downs and this is the story of mine.
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For more information about Crohn’s Disease, visit Crohn’s and Colitis Canada’s website.