The Difficulties of Life with Crohn's & UC
Last updated: July 2022
Between the pain, symptoms, flares, and other daily challenges, life with inflammatory bowel disease (IBD) is hard. Crohn's and colitis are often invisible illnesses, and therefore not always understood by others. We asked our advocates a series of questions to raise awareness about many of these invisible aspects of the condition. Here's what they had to say!
When asked: "What’s the most difficult aspect of daily life with Crohn’s or UC?", they shared that fatigue and other symptoms are really hard to cope with. The condition is also unpredictable and brings fear of when the next flare will happen.
Dealing with fatigue and nausea
Brooke shared that "My fatigue is more than the feeling of being sleepy or tired. It feels like I’m carrying a 2 elephant on my back while I run a 15k marathon. I’m drained of energy and patience. And it never seems to go away no matter how much I rest, I seem never to have enough energy to get through my day. Then you tack on nausea, which for me, often brings dizziness. The combination definitely impedes on my work and social life."
Unpredictability and the mental toll
The unpredictability that Colin shared had much to do with accidents. He said that "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. Major cities like New York City caused me to panic because I didn’t know if public restrooms were available."
Constant fear that the condition will worsen
Natalie discussed the mental toll of when a flare will happen: "Every single flare up and hospitalization I have experienced has blind-sided me. I’ve gone from anchoring the morning news and training for a half marathon to being a hospital bed with a bowel obstruction, all in a 24-hour period. Even though I’ve had IBD for more than 14 years, dealing with the uncertainty of when my disease is going to strike next is an extremely challenging mind game."
Sahara also talked about flares and the fear that that brings. She states "All of those [other symptoms] are unpleasant, but one of the things I actually find the most difficult is the constant fear. The fear that things may get worse at any time. Even when in remission, I would constantly find myself saying no to any plans that weren’t immediate, because 'I might be in a flare again by then.'"
This fear does not go away with remission. Amanda says "I’ve realized that the most difficult aspect for me is less of a physical obstacle and more of a mental one. Even when I am feeling good, I always wonder when the next flare-up will be, and what I will have to sacrifice when it arrives. I worry that I’ll have to take a leave from my job, hire childcare for my daughter, and miss out on things that are important to me."
Does living with IBD impact you financially?