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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.

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Join us on October 11 for our Virtual Community Conference

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Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our purpose to improve health and care for all children and youth with Crohn’s disease and ulcerative colitis. We invite all people wishing to learn more about and get involved with ImproveCareNow to join us on October 11 between 4 and 8pm ET for our Fall 2017 Virtual Community Conference. Read more to see the agenda for this event. 

RSVP now and join our Fall 2017 Virtual Community Conference

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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).

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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.

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Fall 2017 Community Conference – Going Far Together

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ImproveCareNow Community Conferences happen twice a year. While our community works together across the miles throughout the year, these in-person conferences provide an opportunity to work on developing and spreading quality improvement (QI) and research skills and approaches; fueling our Network's use of data to drive and evaluate QI efforts; and developing partnerships that will lead to improved care processes and outcomes in pediatric IBD.

September 7-9 we will welcome more than 300 patients, parents, clinicians, researchers, improvers, collaborators, and friends to the Fall 2017 Community Conference in Chicago, Illinois and we hope you’ll join us too.

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The Virtual Community Conference Helped Me Help My Son

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My four-year-old son had recently been diagnosed with Crohn’s disease, and the worst part about the whole thing was the needles! IVs, blood draws, shots, Humira injections, etc. Around the same time as his diagnosis, I attended an ICN Virtual Community Conference and that’s where I heard about Buzzy.

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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.

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Camp Oasis: Life-Long Memories

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If I knew then what I know now, going away to camp would be a whole different story. I was never one who liked being away from home-especially at night. The thought of being far away from home (in a completely different state mind you) and spending the night not in my bed was completely out of the question. I was not going to leave the comfort and security of my own home. Oh, how I wish I would have convinced myself to participate sooner.

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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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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:

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