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! 

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.

Getting accurate, understandable, patient-friendly information about IBD is not always easy. But what if other kids who actually have IBD told you about IBD anytime you wanted, and would only give you information that IBD experts felt was accurate? And what if the information they shared would only take a few minutes? That would be great, right? 

My name is Maddie. I am 16 years old and I have Crohn’s disease (CD). I have used nutritional therapy as a primary treatment for my Crohn’s disease since my diagnosis at the age of 13. Nutritional therapy has changed my life – both my health and my relationship with food.

My name is Salma and I am 16 years old. I am a senior in High School. I was diagnosed with Crohn's disease when I was six years old, after being in and out of the hospital for two years. I was actually born in Casablanca, Morocco, but my family and I moved to the U.S. when I was three.

“You feel your strength in the experience of pain.”

This quote by Jim Morrison is one I can relate to when I think about my experience with a chronic illness, even with all the struggles I write about in this post.

Last month, I had the most entertaining ileoscopy in history (which is saying a lot since I was sedated for most of it). Let me give you the background on this:

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.

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.

Growing up is hard. School is hard. Managing friendships and reaching goals is hard. And, living with IBD is hard. There is no question that kids and teens today have a mountain of responsibilities and pressures without worrying about managing a life-long condition. With all the school assignments, sports, activities and just trying to have fun, having to add in one more thing might make it feel like the glass is going to shatter.