LOOP Blog

My name is Catalina - I’m a current co-chair of the ICN Patient Advisory Council, a social/clinical research assistant at the University of North Carolina and will be starting medical school soon. I recently gave a presentation at the Anderson Center for Health Systems Excellence about emotional labor, empathy and how to navigate these concepts when working with patient advocates. I wanted to share some of my talking points with you here.

Lately, I’ve been reflecting on the importance of having a support system. Whether it be friends, family, or even strangers…in that Facebook group you joined a few weeks ago. Having support keeps you grounded, and I find it can have beneficial effects on both my mental and physical well-being.

My name is Ann, and I will never forget the day my son's symptoms began. There were six of us. We had all gone out to enjoy a Chinese dinner. The time was the summer of 2009. Later that night, Richard who was 8 years old, started vomiting. We thought he probably was reacting to something in the restaurant food, but none of the rest of us had a problem. This was the start of Richard’s trouble with Crohn’s disease.

LOOP is making impressions in the IBD community!

So far, in 2019, 50 stories have been posted to the blog by 40 ICN community members, including clinicians, researchers, coordinators, parents, patients, psychosocial professionals, and ICN staff & leaders. While the perspectives and the topics vary – as you can see in the tag cloud below – one of the common threads is that they are written by real people, talking about real life with IBD.

We are thankful for each and every one of these stories and hope that by sharing them we continue to do our part to raise awareness of these often-invisible illnesses and help encourage more people to get connected and talk about IBD.

Without further ado, here are the top 10 most read posts of 2019!

Hi, I’m Jane, “Mom” to beautiful 20-year-old Nicole. I serve as a parent representative at CCHMC for ImproveCareNow (ICN) and our local network called: IBDevoted. I am also a Board member of the local chapter of the Crohn’s & Colitis Foundation. In my professional career, I work for a large Catholic healthcare system handling medical malpractice cases. While I’m not technically a healthcare professional, I joke that “I play one on TV”!

My name is Talia; I am a high school student. I was diagnosed with ulcerative colitis (UC) in May of 2016. Many people don't know that I have a creative side, and that I draw and paint for fun.  

It’s June 3^rd. And it has been 24 hours since I’ve been home. Far from bugs, insects, snakes, coyotes (which I disappointingly did not see), and beautifully, loud, energetic children. It has been 24 hours since I have returned from Camp Oasis. It has been 24 hours since all those helpers, my fellow counselors, have left camp and gone back to the inevitable “real life.” But I know even in their real lives, they will continue to be helpers, just as they were at camp.

I had the pleasure of attending the ImproveCareNow Fall Community Conference in Chicago in September. I had a great time meeting my fellow PAC (Patient Advisory Council) peers in person! They helped guide me through the various panels and workshops. I do admit that there were times when I felt overwhelmed. Not necessarily in a ‘negative stimulus’ overload, but overwhelmed with information, discussion, and flow of support from my own peers, parents and families, administrators and providers. There was one point during the conference, quite early in the morning, perhaps no later than 10:00am, where I was struggling to keep my eyes open – my old friend fatigue was back. I had to excuse myself to go back to my room to take a nap. Guilt, another familiar friend, greeted me. I was torn between needing to rest and not wanting to miss out on learning.

Hello Fellow Improvers! I am Nicole and I have been part of the ICN Community for four years. During this time, I’ve been grateful to enjoy several Community Conferences and have been an active participant in improving care both at the national level with the ICN Parent Working Group (PWG) and locally as the Co-Lead of the Parent/Patient Advisory Team (PPAT) at my care center in Massachusetts. I'm pleased to introduce my family to you!

"Everyone's story matters, and is important, and can change someone else's story!" - Sami Kennedy

Stories matter! They connect us; build awareness, understanding and empathy; they unite us in our pursuit of a common goal and sometimes they even ignite (or reignite) our passion for the work that lies ahead. When PAC member Maddie shared her story – her #IGNITETALK – at our Fall Community Conference the energy in the room was palpable. Here’s the transcript of her talk.