My IBD Journey- Taylor Hensley

Hi! My name is Taylor Hensley, and I was diagnosed with Crohn’s disease in 2016, when I was in eighth grade. Before my diagnosis, I dealt with severe mouth sores that I described as “cuts.” After what felt like endless appointments, tests, doctors, and specialists, the sores became so painful that I didn’t want to eat. I was eventually referred to the GI department at Boys Town, where the right testing led to my Crohn’s diagnosis. After my first procedure, I remember being told they couldn’t believe I wasn’t in more pain after seeing how affected my GI tract was.

Being diagnosed at 13 was frustrating, and at first, I was angry. I didn’t understand why I had to spend so much time at the hospital, undergo so many tests, and receive monthly treatments. I was quickly started on steroids and Remicade, and thankfully, Remicade has continued to work very well for me. Today, Crohn’s is something I manage rather than something that controls my life. Stress from work or school can still bring on occasional symptoms, but overall, I’ve been doing very well. When mouth sores appear, they do not last as long, and Magic Mouthwash has become my best friend at the first sign of a flare.

Because I was diagnosed young, managing Crohn’s has become a normal part of my life. I do not let it limit my education, career, relationships, or goals. Still, Crohn’s can be an invisible disease. From the outside, people may not realize how painful it can be, especially when a flare makes it genuinely difficult to eat.

I have been fortunate to have an incredible support system. My nurses at Midwest GI have been wonderful, especially Emma at Lakeside, who has become one of my favorite people to talk with during IV treatments. When I was younger, Becky, a child support specialist at Boys Town, made treatments more enjoyable even when I didn’t want to be there. My friends, family, boyfriend, and parents have all supported and advocated for me. My mom, especially, has been by my side from the beginning and has always been willing to fight for what I need, even if it is something as simple as getting Magic Mouthwash. 

One thing I wish more people understood about IBD is that patients are not asking for medications or treatments unnecessarily. It can be frustrating when insurance companies question or delay care that doctors know is needed to keep patients healthy. Patients and families should not have to fight so hard for necessary treatment.

For someone newly diagnosed, my advice is to find a doctor who listens and is willing to advocate for you. Having Crohn’s can be difficult, but the right treatment and the right people in your corner can make an incredible difference. Nearly a decade after my diagnosis, Crohn’s is only one part of my life, not something that defines it.