Join me (Fionna) and my fellow PAC members, Christian and Shira for our conversation with the hosts of the NASPGHAN podcast, Bowel Sounds, Dr. Temara Hajjat and Dr. Jason Silverman. We discuss what we wish providers knew from the patient perspective and uncover what providers wish patients knew. 

IBS (irritable bowel syndrome) and IBD (inflammatory bowel disease) are different disorders that intersect sometimes. Join Shira and I (Maddie) as we share our experiences and talk with Carlo Di Lorenzo, MD about IBS, IBD, and the complex and fascinating interactions between the brain and the gut.

When I was diagnosed with ulcerative colitis at 14 years old, I was shocked. I was lucky enough to already have some familiarity with the disease, but I never thought it would happen to me. I had every single textbook symptom, but I still felt so numb and so distant from the new reality I had to face. This isn’t an uncommon feeling, and it can be really hard to know where to start. IBD is a complex disease, so here are some things I found helpful while learning to navigate those first few months after my diagnosis.

Lifestyle and IBD is a new web-based toolkit that the Patient Advisory Council (PAC) began working on in early 2020. As COVID-19 impacted the lives of many across the country and the world, discussions about how IBD impacts how patients live became especially important to members of the PAC and the greater IBD community. Seeing a need, we decided to co-produce a resource - for patients, by patients - that could help others by sharing direct patient experiences, patient-developed information, resource links, and professional information and insights.

Invisible illnesses, like Crohn's disease and ulcerative colitis, don't take time off for the holidays. Learning about what your friends and family members who live with IBD may be experiencing is a powerful way to demonstrate your caring and support, and to also include them in holiday plans in ways that work for them.

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

So far, in 2021, 70 stories have been shared #InTheLOOP. Patients, clinicians, parents, dietitians, researchers, and staff & leaders from across the ICN Community have written about IBD from their unique perspectives. They have covered topics ranging from support and advocacy to the importance of sharing openly and talking about IBD, from research and innovative projects to personal struggles, triumphs and hopes for the future.

Without further ado, here are the stories you read the most in 2021!

Each year, December 1-7 is set aside as Crohn's and Colitis Awareness Week - a time to talk about IBD and raise awareness and understanding of Crohn's disease and ulcerative colitis. 

Since we're in the month of gratitude, the PAC wanted to take time to recognize and say thanks for the amazing support we've received.

It happens in a series of moments. Sleepless nights. Weight loss. Pain that gets worse with every day. Seeing test results of climbing inflammation numbers. I describe it distilled into one single moment: waking up from my first colonoscopy and hearing the words “ulcerative colitis.”

In preparation for presenting a breakout session about Fatigue, Sleep, and IBD at the upcoming Live Online Community Conference (LOCC), Nour and I (Maha) have shared our own personal experiences with and perspectives on IBD-related fatigue.