Patient Advisory Council members have been crowdsourcing their wisdom, tips, and tricks about IBD topics that are timely and important to them. Using their insights, they have been developing brief, helpful one-pagers that are then reviewed by various members of the ICN community such as dietitians and psychosocial providers. Take a PAC Moment to check out new patient-developed resources!

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 🔥

Recently, the team at UVM Children's Hospital noticed that food and diet regularly came up during their monthly UVM Pediatric IBD Advisory meetings. Members discussed their personal experiences and learned from each other about how some respond differently to the same foods, how to be aware of food triggers, and what go-to comfort foods people enjoyed while flaring. Recognizing the power of learning from each other and wanting to reach more members of their IBD community, the team asked Olivia if she would share her story about using the Specific Carbohydrate Diet to help manage her IBD symptoms.

Get #InTheLOOP with Olivia's story 💚💙

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!

This study characterized the explanatory models used by pediatric gastroenterologists when explaining inflammatory bowel disease (IBD) to children.

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.

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 🔥

LOOP is an important place for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, build confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

We're looking 👀 back at our top stories of 2023!