LOOP Blog

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.

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.

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.

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 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.

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.

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:

Hello! My name is Taylor. I'm 22 years old and am 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.

This summer marks the six-year anniversary of the beginning of my role as a caregiver for a child with a chronic illness. At times, my daughter’s diagnosis seems so close – and yet so far away. In those six years, she has blossomed from a child into a beautiful young woman. Today she can speak with authority about her care, her medications and her routines. Six years ago, she couldn’t pronounce her medications - let alone tell you the dosing.

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.