Emily Morgan’s world spun upside-down the day she received the news that she had ulcerative colitis. At 13 years old, she hadn’t known anyone to have this chronic disease, and didn’t know what this meant for her future, or that she would later end up with a j-pouch. She turned to the Crohn’s & Colitis Foundation after struggling alone for 3 years, and later found comfort in the Take Steps community. She now continues to empower and inspire other patients with her story. Emily served as the Take Steps Carolina Chapter’s Honored Hero in 2011. Now 24 years old, we got a chance to sit down with Emily and talk about her decade of living with ulcerative colitis and her involvement with the Crohn’s & Colitis Foundation.
Q: How has Take Steps enriched your life? When I was first diagnosed with IBD, I had a hard time talking about it and I didn’t know where to go or what to do. Joining Take Steps was the first time I met another patient that was remotely close to my age, and was going through the same things as me. I was blown away by how many people were at the walk to support the cause.
Q: What are some things that you were unable to do while you were in a flare? Swimming. My goal was always to get an athletic scholarship to swim in college, but my disease changed my path. When I got sick my focus shifted and I had to listen to my body, which didn’t always allow for practice-time in the pool. I also had a hard time managing my disease in a social setting. I couldn’t go to certain events towards the end of middle school through the beginning of college. I had to learn to say no for my health and often felt like I was missing out. While trying to manage my UC on steroids, my face got round (moon-face) and people would talk about me. I wanted to be treated like everyone else, but I couldn’t fly under the radar without people staring and asking questions.
Q: Were there any lifestyle changes made that helped improve your quality of life? The biggest one is sleep. I learned in college that I couldn’t pull all-nighters like my friends, which was a huge adjustment. Now, I try to get 9-10 hours of sleep each night and when I do, I feel much more refreshed and ready to take on the day. I also watch what I eat more closely and adjust my intake based on symptoms I notice, which is tracked through a food journal. Additionally, I set aside some extra time for myself to decompress by doing some meditation from my Headspace app, yoga, or mindful reading.
Q: If you could use 1 word to describe your IBD journey, what would it be? Bitter-sweet. There were plenty of times throughout the past 10 years where I felt alone and frustrated with IBD, but if I could go back and obliterate my ulcerative colitis, I wouldn’t. My UC lead me to where I am today, which is back in school to get my master’s degree in Public Health. My disease also played a role in helping me to get involved with IBD Qorus, where I was a researcher on the project for 18 months, and later a patient partner for the Foundation. Both are invaluable experiences that I’m forever thankful for.
Q: What's the best piece of advice that you would tell a newly diagnosed Crohn's or colitis patient? You are not alone. You didn’t do anything wrong and your disease isn’t a result of you being bad. Getting any chronic illness diagnosis can be scary, but luckily you have a wonderful community within Take Steps and the Crohn’s & Colitis Foundation to consult as a resource. The Foundation provides so many reading materials both in print and on the website, that will help you better understand your disease and will leave you feeling empowered and in control. Knowledge is power!
Q: How has Take Steps changed over the past 10 years? The first year I participated in Take Steps was in 2011, and I was blown away by how big the walk was and by how many people were in attendance. Now, the walks are even larger and I feel like both Crohn’s disease and ulcerative colitis are getting even more attention on television and on social media than ever before. While I know that these chronic diseases are still difficult for many patients to talk about, I think Take Steps has done an amazing job at encouraging people to share their stories and at teaching the public about fundraising and its direct impact on research dollars needed to find a cure.
Q: How are you managing your ulcerative colitis today – almost 10 years after diagnosis? I am happy to report that I am in control of my IBD with the help of my j-pouch. I’m living in remission! Of course, I no longer have part of my intestines, but that’s a small price to pay. I’m now a better manager of my life. My ulcerative colitis helped shape who I am, which is a person who has a passion for helping others, not just in the IBD world, but also in the chronic illness world. I want other patients to know that their IBD journeys might be bumpy and that somedays they’ll feel great, and that somedays they won’t. There’s such a great community out there who want to help, so let them. Take Steps and the Crohn’s & Colitis Foundation have come such a long way in the last 10 years that we should feel proud at all we have accomplished!
Join Emily and the other 1.6 million Americans living with Crohn’s disease and ulcerative colitis at your local Take Steps.