My Life With Crohn's Disease
Editor's Note: This article first appeared in Issue 3 of Holl & Lane. To read the whole issue, pick up our digital pack in our shop.
Words by Kimiko Mainprize
Not all diseases or illnesses are obvious. There are so many people who suffer, chronically, without anyone ever knowing. Just by looking at me, you wouldn’t even know, but I am one of those people.
I have had stomach issues for most of my life. As a teenager, I would be out with friends for lunch or dinner and urgently need to use the restroom after eating. I was embarrassed about it, often trying to downplay it by saying my parents needed me home. At first I found ways to cope, like taking lactose pills or watching what I ate, but it didn’t always solve the painful cramps or urgency for a bathroom. When I got to university, I found my symptoms escalated, especially when stress was high. Things would get so bad that I wouldn’t eat for most of the day before an evening exam, and would take Imodium like it was my savior.
After months of this, I finally made it in to see a gastroenterologist, a doctor that specializes in intestinal and liver diseases. We scheduled a colonoscopy and endoscopy, a procedure in which they pass a tiny camera through your intestines and down your esophagus (separately, of course) to determine what the cause of your issue may be.
At the age of 19, I was diagnosed with Crohn’s Disease, a form of Inflammatory Bowel Disease (IBD). Crohn’s Disease is the inflammation of your gastrointestinal (GI) tract including intestines, colon, and bowels. Mine specifically affects one section of my large intestine moderately, but the disease does range from mild to severe. The thing about Crohn’s Disease is that while it is treatable, there is no cure. When a person has active Crohn’s, also known as a flare up, wherever their disease is located, is inflamed and irritated. This inflammation causes food to be passed through your body very quickly as if it is the enemy (aka diarrhea), and does not allow your body to absorb the nutrients it needs. It can also be very painful, with mild to severe cramping, cause narrowing of your intestines, ulcers on your intestinal walls, not to mention a host of other unpleasant symptoms, which in turn leave you exhausted and drained of energy.
After seven years of living with Crohn’s, I have a completely new awareness of my body that I didn’t before. I am much more in tune with how I am feeling, knowing when I need to stay home and rest, or when I need to push myself to go out and enjoy the sunshine. While this is a very physical disease, the anxiety and mentality of it can be really debilitating.
When someone with IBD is feeling good, their disease is considered in remission. In most cases, medication is required to maintain and keep your symptoms in remission so that you can live your life as normally as possible. Maintaining a healthy and well balanced diet is also key to keep your disease in check. I take vitamins to help with my energy and to ensure my body is absorbing nutrients, maintain some form of daily exercise to keep myself strong (I walk everywhere), and I make sure to keep up my sense of humor.
I have never had a severe flare up, but have experienced periods where I felt “off” for months and my anxiety about leaving the house was high. My previous hour long commute to work was stressful as I always needed to know where a bathroom was. That is probably one thing you can count on though - anyone with IBD should be able to tell you where the closest washroom is for any event or place they are going!
I am lucky that my symptoms are manageable and that I can live my life fairly normally. I can travel and enjoy meals out with friends and family, even though there are periods of my life where this is more difficult. I am also lucky to have a very supportive husband, who understands what I am going through and provides laughter and comfort along the way. Not all IBD sufferers are so fortunate.
While this disease isn’t proven to be genetic, my brother also suffers from it to a more severe degree than myself. We are both experiencing new medication together and it is so comforting to be able to talk to someone who understands. Our family is incredibly sympathetic, which makes all of this a lot easier on us.
Being embarrassed about something you suffer from is hard, but every day I try to open up and share my journey with others in the hopes that they realize they are not alone. With over 1.6 million Americans currently diagnosed with Irritable Bowel Disease, Crohn’s is really not as uncommon as you might think.
Kimiko is the former Assistant Editor of Holl & Lane. She lives in Canada with her husband. Follow along with Kimiko on Instagram.