An infusion during Thanksgiving week?

Yeah, I’ve had to get infusions on or close to Halloween, Cinco de Mayo, New Years, my birthday and other holidays too. Turns out my health doesn’t really consider fun, festive or eventful times in life as suitable excuses to delay my infusions. So, I’ve learned to roll with it, scheduling infusions that I know will wipe me out for a couple of days every month for almost six years now. I’ve had a lot of infusions in my life, so it’s pretty routine for me, but I wanted to write down step-by-step what my experience is like in case it’s helpful to others.

Traveling can be fun, stressful, or both. As an aviation geek, I love nothing more than to stand in the airport looking at those beautiful birds outside, to say nothing of actually getting into one and flying away. However, IBD can make the travel experience more challenging than it already is. I’ve traveled quite a bit in my time, so allow me to walk you through my process of air travel with IBD, from planning the trip to arriving at my final destination.

Oh, the dreaded d-word. Typically, I can't say I depend on US Government documents for my definitions, but I feel like this is one of those situations where I can. Per various acts, written over many, many decades, a "disability" is frequently referred to as something that is a physical and mental impairment that substantially limits one or more 'major life activities’. So, with that definition in mind, as offices on college campuses around the country change their names from "disability office" to "accessibility office," I'm left wondering what it is they're trying to achieve, and why so many people are scared of being classified as having a "disability."

My name is Chloe and I’m 18 years old. I graduated high school in June, and currently work as a cashier. I was diagnosed with UC at age 13.

My name is Lexa, and I'm 17 years old. I'm currently in high school and I love to travel. I was diagnosed with Ulcerative Colitis (pancolitis) in April this past year.

My name is Mia and I’m 14. I was just diagnosed with ulcerative colitis right as my first year of high school began. One interesting fact that most people don’t know about me is that I love simply spending a day in the city!

Watching my mother in tears through the glass window panel, I felt pain. Feeling the wires stuck to my chest, I felt cold. Hearing the heart rate monitor race rapidly, I felt scared. Listening to the anesthesiologist who told me to close my eyes, I felt my worries drift away. I awoke in confusion as I was rolled back to the children’s ward of the hospital in a stretcher. The white walls, patients, and doctors blurred into one as I tried to fight off sleep, but it easily won. After hours of sleeping, I awoke to the sound of the doctor’s knocking. He took a seat at the end of my bed and stared into my eyes with a mixture of compassion and sadness. I anxiously waited for him to speak the words that would change my life forever.

I read online somewhere that the best way to describe Crohn’s disease is that it feels like slashing open your intestines with a chainsaw. I can really relate to that post. You see, I’ve had refractory Crohn’s for eight years, which means my disease doesn’t respond to anti-TNF medications, and that significantly limits my treatment options. And that leads me to my most recent Crohn’s adventure. It all started on a Thursday in late February. After trying and failing Entyvio, my doctor was running out of ideas. He recommended I go to another IBD clinic with more experience treating complex cases like mine - to see if they had any ideas about what I could try next.

Hi, I’m Luke. I'm 16 years old and attend Providence Day in Charlotte, NC. I have ulcerative colitis. This year, I’m looking forward to traveling to China to play basketball with my school team. Dealing with chronic illness has presented me with two main obstacles: managing stress and being aware of what my body needs (like how much sleep I’m getting and how much I can eat).

Hi, my name is Natalie and I’m a high school sophomore from Columbia, MD. I was diagnosed with Crohn’s disease at 10 years old. I’m passionate about music – I play the trumpet in my school’s marching band, as well as the piano and ukulele.