ImproveCareNow Pac


I have a Disability, and I’m okay with that

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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."


I'm a fighter.

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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.


Tools To Get Through A Flare

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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.


Asking lots of questions helps me cope with UC

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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!


I chose resilience

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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.


A few symptoms to surgery...in three days

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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.


Turning Ulcerative Colitis Into A Positive

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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).


Not Letting Crohn’s Take Control

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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.


New PAC Videos - Why it's important to talk about IBD

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IBD is hard and it comes with a lot of baggage: painful symptoms, frequent colonoscopies, and expensive treatments. 

Crohn’s disease and ulcerative colitis (IBD) don’t just affect the physical body though, they affect the mind too. Living with the symptoms of IBD can cause frustration and fear. Remaining silent about these struggles can cause social isolation and feelings of loneliness.

Members of the Patient Advisory Council (PAC) have filmed a new video series - sharing why and how they talk about IBD and encouraging others with IBD to also talk about their disease with friends and family.


If You Can’t Be First

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When I first started running in elementary school, I ran a bit like an ostrich: neck out, arms flailing. My legs were incredibly adept at kicking my butt; let's call that a sign of things to come? I laugh now, but I really took it in stride then. I had a mantra: If you can't be first, be last.

My friend is sick. She has been for a few months now, though we've only recently started talking about it. She has pain that leaves her crunched over her legs, nausea that sours her food, and a troubling relationship with toilets. Familiar, right? But here's the catch: she doesn't have IBD.


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