ImproveCareNow Pac


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.


What makes a good public restroom from an IBD patient’s perspective

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As a patient with Inflammatory Bowel Disease, visiting public restrooms is an incredibly regular activity. Such a regular activity, in fact, that I have — on more than one occasion — considered making a photo-series of all of the restrooms I’ve visited (check this one out though, it’s pretty cool - https://tinyurl.com/ya6mbj7k). Over the course of my many excursions to public restrooms, however, I’ve managed to compile a list of characteristics that make them an absolute pleasure to visit. Here's the list:


Ulcerative colitis helped me discover my love of medicine

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Hello! My name is Taylor Heppner. I am 22 years old (23 on September 25th) and I’m secretly a Harry Potter fan (but shhhhh, I don’t want anyone to know!) I go to the University of Dubuque in Dubuque, Iowa. I'll graduate with my Bachelors of Science in May 2018. I am studying Human Health Science with the hope of being accepted into a Physician Assistant Graduate Program! I love medicine and would love to help others in any way I can.


The effect Crohn’s has had on my social life

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Hi, I'm Ceilidh (pronounced KAY-lee). I'm 15 years old and attend school at Mount Mansfield Union High School. I was diagnosed with Crohn’s disease in August of 2016. One thing most people don't know about me is that other than Crohn’s, I used to have a decently large strawberry hemangioma (basically a collection of fat and tissue). It was harmless, but it made me bite my lip a lot, so I had it removed when I was nine.


This is the story of our lives as IBD patients

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Note: As a patient advocate, I wrote this article to raise awareness (not to make anyone feel badly). So please read it with an open mind and I hope you enjoy!

Living with IBD is very challenging. It’s hard work managing a chronic condition 24/7/365 – but somehow, we do it! We never give up, because we are stronger than IBD.

I believe that all my fellow IBD friends will agree with me on this list of concerns that we face:


Project WOW 2.0

It is difficult to understand what it’s like to live with an ostomy, or counsel someone on what to expect, if you’ve never had one yourself. With this challenge in mind my son Tyler and I created Project WOW (Wear an Ostomy for the Weekend) and offered it to attendees at the Fall 2015 ImproveCareNow Community Conference, with the goal of helping people gain some perspective by “walking in patients’ shoes” for the weekend. Recently, at the Spring 2017 Community Conference, we offered Project WOW again, with a few new twists.

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Crohn’s is hard to accept

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My name is Sydney, and I'm 17 years old. I go to St. Pius X Catholic High School in Atlanta, Georgia. I was diagnosed with Crohn's disease just this March. I am a triplet, with two triplet sisters, and I also have a younger brother.


4 Things I Learned as a High School Student with Crohn’s Disease

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Almost a month ago, my life as a high school student came to an end - no more waking up at 6am everyday, no more school dances, no more crowded hallways, and no more rules that as a person with Crohn’s disease were really hard to follow. Rules like “ask before you leave to use the restroom,” “no water bottles in class,” and “no food in the classroom,” all came to an end.

Rules aside, what did high school teach me, besides how to solve overly-complicated matrices and what taxes are?

I learned...


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