In today’s episode, Stella Rose Carr shares how she’s managed to keep a positive outlook and a good sense of humor while battling Crohn’s Disease for most of her life. Officially diagnosed at eight years old, she recalls what it was like to face her first colonoscopy as a child and how IBD impacted her life from elementary school through college.
At 13 years old, she had six inches of her small intestine removed. While things did improve after that, she still found herself sick often from a compromised immune system. Stella opens up and talks about her recent decision to come off of the Humira she was taking in order to try different medications that could offer less frequent injections. Her body struggled for about a year when she switched from Humira to Stelara and she eventually went back to Humira, without the same relief as before, and is now hoping to find remission with Entivyo.
Still battling flare ups and symptoms, Stella shares how she’s been able to keep both her sense of humor and overall positive outlook while battling Crohn’s. She gives a lot of credit to The Painted Turtle–a camp for kids with serious medical conditions–and how the opportunity to attend helped her build her confidence and made her comfortable talking about her disease and how to explain it to others.
Though she’s always been active, Stella talks about how the role of fitness has evolved in her IBD journey. When Crohn’s prevents her from giving 100%, she incorporates meditative bodywork, breathing, and low-intensity activities like hiking, yoga, or just stretching into her days when her body is run down. She also shares her tips and the importance of communicating your disease needs with your supervisor or co-workers and how she focuses on making it through flare ups.
Stella’s advocacy for IBD began when she was just a child. While attending The Painted Turtle helped her practice explaining what IBD is to other people, she used opportunities like her elementary school science projects and high school projects to talk about Crohn’s Disease and Ulcerative Colitis. During high school, she was also recognized as the Honored Hero for her local Take Steps walk. Today, she continues talking about IBD using social media and online platforms to share both general information and her own personal story and what daily life is like with Crohn’s.
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