LOOP Blog

Learning isn’t always fun but accepting that you live with a chronic disease can be downright terrifying. Whether we like it or not, we must do our best to become familiar with the ins and outs (no pun intended) of a life where IBD plays a huge role.

A few months ago, I graduated from the Umeå Institute of Design in Sweden, with a master in Advanced Product Design. For my thesis I attempted to translate my own Crohn’s disease experiences into something which could help others. I think I succeeded and would love to share the outcome of my master thesis – Pling – with everyone.

These three words (collaboration, connections, community) come to my mind when I think of ImproveCareNow (ICN). And they represent three reasons I love leading our Family Advisory Council and sharing ICN with the families of Dayton Children’s. These are my people. They understand my life. They, too, know what it’s like to parent a child with IBD.

It is for all of these reasons that I am thrilled to host Virtual Community Conference (VCC) Watch Parties – so we can collaborate, connect and feel like we’re part of a community.

My name is Missy and I am a new member of the ImproveCareNow Board of Directors. When my son was diagnosed with Crohn’s disease in the fall of 2016, one of the handouts I received from our care team at Nemours Jacksonville was a flyer about ImproveCareNow (ICN). That night I signed up for the Parent Working Group and the ICN newsletter.

Sometimes I feel like people expect me to always act a certain way because I have Crohn’s. Maybe you’re thinking I mean people understand and expect me to always be tired or running to the bathroom. But that’s not it; it’s that I feel like they expect me to be happy, bubbly, positive – like I am when I’m advocating.

Body image is a topic that Inflammatory Bowel Disease patients don’t often talk about due to the embarrassment and fear associated with opening up about their experiences with their Crohn’s disease or ulcerative colitis.

It can be incredibly frustrating to feel like you have no control over how your body works or looks, especially given all the messages we receive from the media about how a body ‘should’ look and behave. We wanted to create the Body Image Toolkit as a way to express our experiences, provide tips, and start conversations about body image & IBD. It’s important to know that we’re not alone in our feelings, and that there are so many people who understand what we’re going through! 

When I’ve sat down to write about ImproveCareNow over the past decade, I’ve had the luxury of time. Time to reflect on our recent data and progress, time to tell the neat stories about patients and parents working together, and time to try and try again to put my finger on just what it is that makes this community so special…what gives it it’s spark. And while I think many in the ImproveCareNow community appreciate what makes it special—and also what can make that hard to describe—I realize those outside looking in can still find it hard to grasp. So, I often find myself thinking about several lines of William Stafford’s poem The Way it Is:

Quote from Lexa Fenster, PAC member and Co-Designer of Digital Tools to Support Your Team

I looked around the breakout room at our recent Community Conference, at the group of people learning together about using digital tools, and was pleased to see 90% of the room had whipped out their cell phones and started downloading a new app that had just been talked about. I thought to myself only at an ImproveCareNow Community Conference can you find an entire room ready to try out a new tool together. These moments - whether they are at an in-person conference, on a webinar, or in clinic - epitomize the often used ICN slogan “share seamlessly and steal shamelessly.”

First, we share and steal, then we test!

Have you ever taken one of those silly photos that attempts to distort your perception of a landmark or scene? For example, you might make it look like someone is holding the Eiffel Tower by its point or a friend is standing in the palm of your hand. Those photos are all about your point of view or your perspective. Perspective affects a lot of things. Perspective can affect your focus, opinion and even your advice. Recently, as I attend my first ICN Community Conference, the concept of perspective was with me throughout.

I’m Pam, and I’m a member of the ICN Parent Working Group (PWG). My husband Kraig and I have three teenagers, and I became involved in ICN soon after our oldest son was diagnosed with Crohn’s disease. He first started having symptoms in the fall of 2015 and was diagnosed in March 2016.

ICYMI – PAC hosted another Social Media Week leading up to the Fall 2018 ImproveCareNow Community Conference. Social Media Week is one way we get excited for the Community Conference! It consists of PAC members putting together a series of personal and highly-focused quotes, pictures and stories, which we share widely to raise awareness of ImproveCareNow and IBD. In the past, we’ve answered questions like: "What is your IBD story?" "What or who motivates you to keep on fighting?" and "How do you/or the PAC raise awareness for IBD?" and in the Spring members shared what the ICN Core Values meant to them. For the Fall CC we wanted to share stories and examples of how we are Better Together.

These are our stories: