As a young woman who has had an ostomy for nearly five years, I know the struggle of not feeling completely confident and beautiful. Ostomy or not, a majority of teenagers and young adults struggle with confidence and body image. That’s why I was so excited to see Aerie, a company that has a reputation for not touching up their photos and for representing women of all shapes, sizes, and skin colors, take their #AerieREAL campaign to the next level. In their latest set of images, Aerie is representing women with various disabilities and illnesses, including a beautiful woman with an insulin pump, a stunning woman in a wheelchair, a graceful woman with Down Syndrome, and many many more wonderful ladies.

On June 5, 2017, my single, overweight suitcase and I boarded a plane flying from Miami to London Heathrow. Over the course of the next six months, I shadowed and worked with the IBD Team at Great Ormond Street Hospital, a tertiary children’s hospital in the center of London. As a Political Science major who intends to go into medicine, the opportunity to study how IBD patients were being cared for under the UK’s health system was too enticing.

Traveling with IBD, whether it be inside or outside the country, isn’t always easy. However, the PAC has created a new tool to answer questions, share experiences, and hopefully help ease some of the stress of traveling with IBD! Initially, we planned to offer information for patients wanting to study abroad. After giving this idea some more thought, PAC members decided a toolkit with general information about traveling is more relatable and would help more people. Thus, the Travel Toolkit was born!

My name is McKenna, I’m 18 years old and just graduated high school! I was diagnosed the fall of my sophomore year with Crohn’s disease. That year I quit playing soccer and joined the boys varsity football team for junior and senior year!  

My biggest struggle with Crohn’s was myself…I became my own worst enemy.

When I joined ImproveCareNow about 1.5 years ago, research was one of the primary ways I wanted to be involved. I’ve lived with Crohn’s disease for almost 11 years, and for much of that time research felt like something that happened behind the scenes and was entirely out of my realm of influence. Often research is done to or about patients and families, but very rarely is it done with them. Engaging patients and families in research can not only enhance the research itself, but it can also help patients and families feel as though they have a stake in the discovery of new knowledge about IBD.

I have been part of the PAC since August 2016. Getting started, I never knew that joining the PAC would be so life-changing for me. I never dreamed of being a part of something as innovative as I believe ImproveCareNow is. From my perspective, no other healthcare network has accomplished so much as ImproveCareNow. As a patient, it allows me to boast on those accomplishments, and it motivates me to work harder in doing my part to grow the network. Wait, but what is my role? The patient’s role?

Recently, we completed Social Media Week leading up to the Spring 2018 ImproveCareNow Community Conference. PAC Social Media Week is a time before a Community Conference, when we like to engage ICN members and the IBD Community and generate enthusiasm by sharing a personal and highly-focused series of quotes, pictures and stories. In the past, we’ve addressed 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?" This year we focused on the core values of ImproveCareNow. With the help of PAC members, we were able to compose a post for each day, sharing a core value and what it means to them.

Here are some #ICNCC18S PAC Social Media Week highlights:

The past few months, I’ve been working with my ICN center to create a series of ‘College with IBD’ handbooks. These handbooks are meant to help guide patients who are beginning the transition to college, or to provide additional support those already in school. I wanted to take the difficulties I experienced (and subsequent knowledge I gained) and create a resource that would support others in areas where I wish I’d had more guidance.

Hi, I’m Linden. I’m 14, love Broadway music and being part of the show choir at my high school, and I have Crohn’s disease.

One of the greatest gifts I have ever received is a small pin that’s likely worth about $5. I imagine that most people who look at the pin, proudly affixed to the collar of the lab coat I wear during clinical placements, assume it’s a red flower. But it’s not a pin of a red flower. It’s a pin of a stoma.