After being bed-ridden with a severe case of pneumonia for four months, I had resolved to living a healthy lifestyle; as possible. I cut out almost all sugar and grains, focusing my diet on vegetables and protein, and started to exercise regularly for the first time in my adult life. I lost 50 pounds and was feeling great. Then, in my late 20s, I became more fatigued than I had felt since having mono during college. I was prescribed an antibiotic, and everything got worse. The fatigue became more severe, to the point that all I was able to do was lay down, sleep, and go to the bathroom, and I spent a great deal of time doing the latter.
After following up with my doctor and referral to a specialist, a colonoscopy confirmed that I had Irritable Bowel Disease (IBD), or, for me personally, a “moderate” case of ulcerative colitis (UC). Most of the next two years were spent in and out of flare-ups, experimenting with dietary restrictions, and constantly trying new medications and adjusting doses. During this time, when I was able to function, it was like walking around with a time-bomb in my gut. It might go off at any time, and if it did, I would have one minute (at the most) to find a bathroom.
IBD can affect incredibly diverse areas of life. For me, the first symptom I notice when the condition is worsening, before there are any impacts on bathroom usage, is depression. This is my “canary in the coal mine”. Symptoms also become worse with stress, which means symptoms can become more severe at very inopportune times. When you are running late, you are more likely to need to use the bathroom. It can be difficult to go anywhere that a bathroom will not be convenient, such as conferences and concerts, going on a long drive or sitting in traffic, or even taking a walk around your own neighbourhood, because knowing that a bathroom will not be available adds stress to the situation.
Socially, there are also constant reminders as so much of culture revolves around food. As one of the main ways of controlling IBD is dietary restriction, you always have to be on guard with food that you have not prepared for yourself. This can be insidiously socially isolating. For me, I have found my primary restrictions to be wheat gluten, grains more broadly, sugar, alcohol, and coffee or tea. Intolerance of these ingredients means no pizza with friends, no cake at birthdays or weddings, no fried foods, no dessert when you want an indulgence, and having difficulties going to a happy-hour after work, or even meeting friends for coffee on the weekend. When you do go out to a restaurant, seeing bread on the table and someone ordering an appetizer, often fried, means you are likely to have to wait for an hour or more while everyone else eats before anything you can eat will be on the table. It also means being the difficult customer who questions waiters about how food is prepared, down to whether French fries are coated in flour to make them crispier, whether meats have been marinated with soy sauce, and even whether balsamic vinegar is used in preparing the food.
This experience with IBD/UC has given me an appreciation for the many ways in which a condition can affect the life of a patient, and I carry this into any project that I work on. Getting a full picture of the patient experience extends well beyond the physical symptoms they may experience. We need to consider how the patient feels about the condition, what they need to do to control the condition, and the impacts of trying to treat the condition. Even beyond this, what may have worked in the past may change in the future, so symptoms, treatments, and impacts may change over time. Having this perspective has helped on studies of not only digestive issues, but on every project I have worked on.