7 Things I Wish I'd Known About Ulcerative Colitis

An ulcerative colitis (UC) diagnosis is scary, especially when it’s followed by words like “no cure,” “regular colonoscopies,” and “medication.” Like so many things in life, there’s no playbook that prepares you for a chronic illness; it can feel like a reactive state of mind much of the time. We react to the things our bodies do, rather than being proactive. This is through no fault of anyone, as it’s the nature of a diagnosis like UC. You can’t know what you don’t know until you know, you know?

• What is Ulcerative Colitis?

In all seriousness, it would be helpful if there were something to prepare us before being thrusted into the appointments, trial and errors, and everything else around monitoring UC. For example, what if gastroenterologists’ waiting rooms had a collection of patient advice for common diseases? If that were a thing, I’d hope the following seven things were included:

1.   More people live with UC than you think.

It can feel isolating when you don’t know anyone else personally living with UC. However, according to the Crohn’s & Colitis Foundation, 1.6 million Americans live with inflammatory bowel disease. That means that there’s around 1,599,999 people waiting to connect with you, and many are sitting on social media using #colitis waiting for you to find them.

1.   You’ll spend time outside of the bathroom.

UC is often described as a “bathroom disease,” because it does have much to do with toilet-related activity. However, this doesn’t mean that you’re going to spend every second of every day always in the bathroom. During flares, this may feel impossible to believe, and of course, all conditions are different. But in general, it is possible to live a full life away from the toilet with proper maintenance and treatment. 

1.   Knowledge truly is power.

When I was diagnosed, I was 14 years old and hadn’t a clue what UC meant for the rest of my life. As I got older and got through my first big flare, I realized that I needed to understand what my body was living with. So I attended a symposium in San Diego, where I met doctors and even got introduced to Team Challenge, an endurance training program that raises funds for IBD awareness. That single decision to spend a few hours in an expo hall led to an ongoing pursuit for knowledge and education, and it’s eased my nerves greatly over the years.

1.   Not all doctors are created equal.

Pardon the pun, but what does your gut tell you? Even if you’re a student of your body after diagnosis, it doesn’t mean you have to settle for a bad teacher. Ask your doctor all the questions, and if they aren’t giving you the right vibes, do some research and crowd-sourcing for a new one. A great doctor works with you, not against you. They listen to the questions and explain the answers thoughtfully, and if you are hesitant about a course of action, they work with you to find a solution that everyone is comfortable with.

1.   No, you’re not an outcast now.

I totally get it – symptoms of diarrhea and urgency can feel embarrassing in social settings. However, consider this: there’s probably at least one other person in that room that’s also having gut discomfort. There’s probably at least one other person feeling anxious about their own symptoms. There’s probably at least one other person who is silently looking for a break in conversation to use the bathroom. You’re not alone in those feelings, so give it a shot – strip away the awkwardness by telling a family member or trusted friend about your diagnosis.

1.   There’s no such thing as a “stupid” question.

I cannot stress this one enough. Ask every single question that you have, no matter how “gross” or personal it may seem. I can guarantee you two things: 1. Your medical team has heard it before, and 2. Your asking is helping them treat you. Asking a question shows where your main concerns lie and your question may prompt them to explore other avenues or explain different things that weren’t originally on their radar. That’s part of the open dialogue between doctor and patient that’s so key in navigating chronic illness.

1.   You’re going to smile again.

When I was first diagnosed, I remember how sick I was. I was underweight and on a diet of Ensure and saltines because I couldn’t keep anything else in. Plus, I had just started high school, so I was navigating that scene too. During that time I had little to no energy to function, let alone smile. But I do promise you – you will smile again. I wish someone had told me that way back when. Every person should hear that every single day. 

This is not an exhaustive list; in fact, it’s a rather short one compared to all the things I wish I had heard over the years! So I challenge you with this: think of your own three things you know now but wish you’d known then. What are they?