Shit happens: examining IBDs

By Jess Diener, A Master’s student in the School of Kinesiology & Health Studies at Queen’s University studying the lived experiences of young people living with Inflammatory Bowel Disease.

Inflammatory bowel disease (IBD) is an umbrella term for a set of chronic and invasive invisible illnesses that compromise the digestive system, often causing unpredictable periods of flare-up and remission.  Despite a variety of speculations as to the cause of the disease, there is yet to be a known cure.

Crohn’s and Colitis, the two most common IBD’s, are on the rise among young people. Ontario has one of the highest rates of childhood onset IBD both provincially and globally and has experienced a significant increase in juvenile IBD cases, from 42.1 in 100 000 in 1994 to 56.3 in 2005 (Benchimol, Guttmann, Griffiths, Rabeneck, Mack, Brill, Howard, Guan, & To, 2009).

Individuals with IBD suffer from a particularly stigmatizing and restrictive set of symptoms. These can include severe abdominal pain and frequent bowel movements, either or both constipation and diarrhoea, malnutrition, weight loss, and fatigue. Crohn’s disease can affect all parts of the digestive tract, which can lead to ulcerations anywhere from the mouth to the anus, and can also cause perianal disease. Such symptoms can result in major dietary restrictions, invasive medical procedures, medication regimes with horrible side effects, and surgeries, which can include bowel resections and the surgical insertion of various apparatuses to aid in feeding and waste removal when the bowels cannot function properly.

IBD symptoms are never easy but can be especially challenging for students and young people living in residence and student houses.And having to sit through a three-hour lecture while your entire digestive tract radiates in pain is only the beginning;there are many structural and social issues that people must also deal with.Campuses generally don’t have many food options available for those on restricted diets and private washrooms are also hard to come by. There are very few public spaces where people with IBD can feel comfortable without checking ahead and making sure that proper accommodations are available. People with IBD also have to modify their social lives, possibly having to abstain from events centred around drinking and/or problematic foods.

From personal experience I find that one of the hardest things to negotiate due to living with Crohn’s is how stigmatizing the symptoms are. While IBD is invisible, being buckled over in pain, having a swollen face from medication side effects, and having to pass gas in an exam room are anything but! Crohn’s and Colitis are terribly embarrassing illnesses that not surprisingly cause its sufferers to retreat from social situations. They are also very difficult to talk about. When someone asks a person with IBD how they are, it’s really hard to be forthcoming when how they are involves miserable pain, nausea, and irritability. That’s why it is so important for allies of people with IBD and other invisible illnesses to be positive, supportive, and good listeners even when conversation revolves around bowel movements. As a seasoned Chrony, my advice for those with IBD is to find others in your community who also have these illnesses because the best type of support comes from those who can empathize. Find a mentor and be a friend to others because when shit happens, it’s good to that know you’re not alone.