ImproveCareNow Crohns_disease


An issue may seem like an insurmountable mountain, but there is always the other side.

Henry Brittain

Hello! My name is Henry, and I am a 14 year old freshman in high school. I was diagnosed with Crohn’s disease when I was nine. Most people don't know  that I was born in NYC but moved to Charlotte, NC when I was six months old.


I've always admired other people’s strength they display when faced with difficult circumstances.

Hi everyone! My name is Ryleigh, I'm 17, and I have Crohn's disease. I'm currently a senior in high school and plan to attend college in the fall. Something that most people don't know about me is that I used to be able to name over one hundred dog breeds when I was little, but I've forgotten a lot of them now.


I was ready for boot camp when I got sick

My name is Madeline, and I am 18 years old. I currently attend technical community college but am transferring to a university in Virginia the fall of 2021. While in school I babysit/nanny part time. I was diagnosed with Crohn's disease earlier this year and I am excited to join the PAC. One thing most people don't know about me is that I love to sing.


Staying warm and comfortable during infusions

Hi, my name is Ella and I am 12 years old. I am currently a 7th grader who likes spending time outdoors and hanging out with my friends and family.

When I was nine years old, I started feeling sick. I was nauseous all the time, had trouble eating without pain and was so tired I could barely get through the school day. By the time summer arrived, I couldn’t even walk an entire block without feeling ill. We didn’t know how serious it was until I was diagnosed with Crohn's disease at age 10. By then, I had stopped growing and was severely underweight. It was very difficult for me, especially in the beginning. The first rounds of medication were not successful; I couldn’t tolerate them. In August of 2017, I began receiving IV infusions (Remicade) at Yale New Haven Children’s Hospital. I am now in remission and feel great but going for IV infusions as often as every four weeks, as well as taking oral medications, is my new “normal” and the inspiration for an innovative project I’m working on.


Relearning to Live

Sure, my parents drilled the whole “eat healthy, sleep well, drink water” thing into me and my sisters, but that was never entirely applicable to me. I had different rules. Having had Crohn’s disease since an early age, I was always seriously underweight and struggled to get enough nutrients. The goal for the first decade of my life was to eat as much as possible and specifically fatty foods that would build up my mass. But I was never hungry anyway; eating always ended in pain so getting enough food into me was truly quite difficult. I even tried supplemental nutrition drinks like Pediasure, Boost, and Kids Essentials but it wasn’t enough to help me gain weight.


Putting Data to Work to Answer Questions: Evaluation of Adalimumab Effectiveness in Anti-Tumor Necrosis Factor-Naïve Pediatric Patients with Crohn’s Disease in Clinical Practice

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The ImproveCareNow Registry is a treasure trove of information about patients living with IBD. But, data, like Amazon gift cards, are worthless unless used. And it takes some intrepid, or at least good-with-numbers, Indiana Jones-type researchers to plunge into the depths of the jumble of figures – to put the data to work to answer questions.


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.


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.


A Letter to My Younger Self

Dear Younger Me,

I know you're scared and this past week in the hospital has not been all that great. All the tests and doctors are so new to you. The doctors said you have Crohn’s disease. It’s going to be okay, I promise.

I wish I could tell you these next few years will be easy, but they won't. You're going to go through some pretty tough stuff that many kids your age will have a hard time relating to. Most won't even understand it and that's okay.


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