by Autumn

When I received a MyChart message from my GI, suggesting we consider changing my Crohn's treatment, it hit me like a bullet straight to the gut. I wasn't expecting it. I did not have any symptoms of a flare yet, but labs and scope biopsies said otherwise. I received that message while waiting for an appointment, just one minute before my doctor came out to get me.

Hi! I am Emma and I want to share the story of my IBD diagnosis because I think it could help others who have less common IBD symptoms and locations of inflammation. It all began when I was a senior in high school. I had this pain in my chest and upper abdomen whenever I ate or drank so I decided to go to the doctor.

In a matter of days, Caitlyn went from being a full-time student athlete (following her dream of running at a D1 college) to being a full-time patient (diagnosed with IBD and severe visceral hyperalgesia). She went from balancing a rigorous training schedule and school, to managing doctors appointments, meds and nearly constant pain and fatigue. In the midst of this, she turned 21 and was pushed to find an adult care provider who would take her complicated case. She wanted someone to fight for her, who took time to understand how her illness was affecting her life and mental health, who recognized how hard she was fighting and who would support and advocate for her. In time, she found those people. With new treatments, her health began to turn around and she was able to return to school. However, her collegiate running career had come to an end. "I found myself grieving for my past life. For a body that I no longer had."

Once known affectionately as the "runner girl," who was Caitlyn without running? It turns out she is many things! Read her story to find out.

Be inspired by Caitlyn's #IgniteTalk 🔥

Injections are a common way to receive medication for IBD patients. It can be a nerve-wracking experience, so PAC experts have compiled a list of tips and tricks - for patients, by patients - that can help make your injections go as smoothly as possible!

Hi, my name is Emily and I was diagnosed with Crohn’s disease in December of 2023. Something interesting about me is that I met my idol, the voice actor of Ahsoka Tano from Star Wars, Ashley Eckstein. I joined the PAC in February 2024.

My name is Maddie and I was diagnosed with Crohn’s Disease when I was 13 years old. I’ve been a part of the ICN network for almost 8 years, and I transitioned from my role as PAC Co-Chair a year ago. Now I have the opportunity to share my passion project with the ICN community! Introducing: EATS for IBD™

Kera has been seeking information and making tough decisions from a young age. She was just 10 years old when she, with support from her Mom and Dad, made the choice to use nutritional therapy to treat and manage Crohn's disease after surgery. Her path to emergent surgery, and ultimately her diagnosis, was long and paved with painful symptoms and emotional trauma. Some adults dismissed her pain as "normal" or even lies. In her deeply honest #ignitetalk, Kera reminded us that life is full of inflection points...the moment a stomach bug morphed into chronic pain, the moment her pain was validated and she learned she had Crohn's, the moment her care providers really listened and answered her questions, the moment she realized that succeeding at nutritional therapy helped her physical health but exacted a huge toll on her mental health, the moment it became clear her issues with body image and eating were not safe or healthy, the moment she discovered the Patient Advisory Council and people who she didn't have to 'downplay her trauma around', the moment (which came just before she took the podium at #ICNCC23F) when her PAC co-chair, Shira, told her that she is allowed to take up space.

If reading about or listening to real experiences with eating disorders and/or body dysmorphia does not serve you, please protect your own mental well-being by skipping this post and video.

Be inspired by Kera's #IgniteTalk 🔥

For so many years I remember being this young girl surrounded by so many people but feeling so alone… different than everyone else. I used to never acknowledge that I had a chronic illness unless I had to. When I would get stomach pain, have frequent need for the restroom, or was unable to do what others were doing, that’s when I felt so different…so alone. I was always the one with the (not typical) belly pain, that couldn’t eat anything, or that kept running to the restroom…always feeling singled out.

I sit staring at what feels like a mountain of pills, my pillbox barely shutting. I just wish I could be a normal college kid. Taking daily medications sounds so simple and easy, but it’s often one of my biggest challenges. Trying to keep up with medications and even appointments gets very exhausting, especially since I’ve had to do these things from a very young age. I know nothing more than a life filled with pills and appointments. 

Hi, my name is Justin, and I was diagnosed with Crohn's disease in 2021. I am on Remicade. I am currently a rising junior in high school, and my interests are in law.