Ulcerative Colitis Goes Far Beyond the Bathroom

I like to tell people that living with UC changed my view on, well, everything.

I lived a healthy life until I developed UC in my early 20s. I didn't do anything "wrong": I ate right, I stayed fit, and I didn't use drugs or abuse alcohol. I just ... got UC. What I learned is that the disease can get to anyone regardless of age, gender, race or ethnicity. We all have something, and a little understanding can go a long way towards your relationships with the people around you.

Crohn's and Colitis Awareness Week is Dec. 1-7, and in honor of that, I decided to tackle some questions about these diseases and how they affected my life. Everyone's story with Crohn's and UC is different, but my story can help shine some light on what life is like with these diseases.

The mental impact of living with ulcerative colitis

The hardest part of life with UC was mental, not physical. I felt an overwhelming amount of stress over where I would be when the next accident came. Because I felt like I had no control over when I would need to go, it started to take an emotional toll on me.

I monitored my surroundings for available restrooms if nature called. Major cities like New York City caused me to panic because I didn’t know if public restrooms were available. If I was fortunate to be able to find a restroom, that was great. But if I wasn’t, I always brought a change of clothes and fresh toilet paper with me to try and lessen the damage.

The fatigue that comes with a flare

The worst symptom I experienced during a flare-up was always the fatigue.

No matter how much sleep I got and no matter how much 5-hour energy I guzzled, I was always tired. I felt like I was swimming upstream and I was always looking for the next chance to shut my eyes. It just felt different from “normal” tiredness; I didn’t want to get off the couch and when I did, I just wanted to go back.

The fatigue reached past the physical. When I was at my sickest, I was a working journalist, and I found that fatigue left me in a constant mental fog. I couldn't focus, I wasn’t engaged with people or events like I needed to be and I struggled to write good copy because I wanted to sleep.

Crohn's and UC are more than just a bathroom disease

I wish more people understood that Crohn’s and UC are more than just a bathroom disease. Yes, I understand that frequently going to the bathroom is kind of the “trademark” of these diseases, but the impact it has on people goes so far beyond that.

I just answered two questions about the worst parts of life with UC, and pooping wasn’t either of my answers. For me, that was the easy part; if my problems ended with a toilet, then I could deal with that. The ways Crohn’s and UC attacks our bodies goes so far beyond the bathroom.

You can still live a fulfilling life

The one thing I can tell you about Crohn’s and UC is that they are not a death sentence.

Yes, there are times where you don’t be sure you have the energy to keep going. Yes, it’s easy to think about the worst outcomes. But if you are working with your doctor and listen to your body, you can have the life you want. Or at least these diseases won’t be the reason you don’t.

I know this because I’m proof: I didn’t find my dream job, move across the country and meet the love of my life until I was diagnosed. UC made me into the person I am today, and in a weird way, I’m grateful for the disease.