LOOP

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 am a second-year engineering major. I tend to be a very academically driven person with high expectations of myself. I love my perseverance, but sometimes my own determination to achieve my goals is my biggest stressor. In my mind I set goals for myself constantly. And naturally when I don’t meet my goals, I am disappointed.

These habits manifest in many facets of my life, but particularly in my academic life. I set goals for tests and grades and expectations for interactions. When I don’t do as well as I would like, it can be rough, and I end up stressed out.

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.

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.

My name is Maddie. I am a member of the Patient Advisory Council (PAC) and a contributor to the PAC’s latest IBD Resource – Patient Perspectives: Nutrition & IBD. This booklet is very important to me and the other contributors who have used nutritional interventions to treat and manage their IBD.

Nutrition is an important part of life and for IBD patients it can play an essential role in overall health. Nutrition can be used as a primary treatment, as well as secondary or complimentary treatment, which can support overall well-being. Sharing our experiences with nutritional interventions helps us raise awareness of how nutrition fits into real-life IBD treatment and management. It allows us to offer support and reassurance to other patients who are making decisions about or coping with nutritional interventions – that they are not alone.