Robin C. and her Ulcerative Colitis Journey

I didn’t understand the true impact my diagnosis of Ulcerative Colitis would have on every aspect of my life going forward. The thought of taking maintenance medications for the foreseeable future hit it home. 

During a flare, the anxiety of day-to-day life can be exhausting. Thinking about any trip from home to work includes possible bathroom options along the route. The thought of traveling during rush hour and getting stuck in traffic is a scary scenario. I might not eat until I get to my destination as that might be safer. I work in film so the hours are often unpredictable. Over time, if I feel comfortable, I communicate with my supervisor so they will understand why I’m running late or making constant trips to the bathroom. 

Since IBD can most often be invisible to everyone on the outside, dealing with the day-to-day suffering through a flare can be quite isolating. Taking steroids and not recognizing yourself in the mirror is also awful. Missing out on events or walks with my family where there may be no bathrooms can also take it’s toll. 

Over time, I have found ways to deal with my IBD. I always listen to my body, if I’m tired, I will get some rest. Lack of sleep will throw me into a flare, late work nights are off the table. I found a doctor that I trust and who listens. I’m honest with her and myself. I’ve had doctors who never ask about what I eat. I think there needs to be a focus on nutrition and self-care in addition to the pharmaceutical aspect of treatment. The mind/body connection is real and I’ve learned the importance of stress management over time. I’m also honest with my loved ones, if I need help, I ask for it. Working mothers often carry an invisible workload and I’ve learned over time, there are people who want to help.

The Foundation has helped me by telling other IBD stories so I no longer feel alone on my personal journey with Ulcerative Colitis.