ImproveCareNow Ulcerative_colitis


IGNITE - I made a conscious choice to become a part of something

Ignite Talks have become a tradition at ImproveCareNow Community Conferences. There is always so much enthusiasm for these brief and breathtaking personal narratives. And we continue to feel gratitude and awe for the improvers who speak from their hearts and share their real life experiences with pediatric IBD. We are grateful to Tomiyo for her story about caring for her daughter with severe IBD and the emotional toll it had on her. Speaking to a live audience was an act of real bravery for this introverted parent, and it represents a promise that Tomiyo kept to herself to be involved and to help other caregivers who might be suffering like she did. Tomiyo's ignite talk highlights the importance of support, community and advocacy for IBD caregivers and the power of stories to drive us all to create a better for future for those who need it most. 

Be inspired by Tomiyo's #IgniteTalk 🔥


ICN Research Explained: Biosimilars for Pediatric Patients With Inflammatory Bowel Disease: Pediatric Gastroenterology Clinical Practice Survey

Why was this study done?

Pediatric patients with inflammatory bowel disease (IBD), including Crohn’s Disease and ulcerative colitis, who take biologic medications (like infliximab and adalimumab) have decreased hospitalizations, surgery rates, and improved quality of life. However, biologic medicines are expensive. Biosimilars are similar biological therapies that are just as safe and effective as the original biologic medication, although they are often less expensive. There are currently two medications (infliximab/Remicade and adalimumab/Humira) used to treat IBD that have biosimilars available. Despite the cost savings, the utilization of biosimilars in the treatment of IBD has been low. The exact reasons why the utilization of biosimilars is low is not well known or well-studied.

The objective of this study was to evaluate pediatric gastroenterologists’ perspectives of biosimilars and to evaluate factors that impact pediatric gastroenterologists’ comfort level with prescribing biosimilars.


IGNITE - Community and having a relationship with patients is important

Imagine being diagnosed with a chronic illness in the midst of a global pandemic and lockdown. How does a young person develop resilience and thrive when facing incredible health challenges in isolation? How can they connect with people who understand, who can normalize IBD and offer support and validation about experiences that are still very stigmatized? Not only was Hannah able to develop resilience (on her own terms) and thrive (in the face of difficult surgeries and complications), she also found a community in ICN and the PAC and has grown into an incredible patient advocate. In her #ICNCC23S Ignite Talk, Hannah shares the story of her diagnosis, what resilience and community mean to her, how asking questions and getting to know patients can open the doors to more inclusive and whole-body care.

Be inspired by Hannah's #IgniteTalk 🔥


imPACt ep. 36 - IBD, the Gut Microbiome, and Nutrition with Dr. Suskind and Kim Braly, RD

imPACt Podcast episode description: Dr. David Suskind and Kim Braly, RD join Maddie from the Patient Advisory Council for a discussion about diet, nutrition, the gut microbiome, & how it relates to IBD"

Maddie is joined by pediatric gastroenterologist David Suskind, MD and IBD-specialized dietitian Kim Braly, RD for a podcast about diet, nutrition, the gut microbiome, and how it all relates to Inflammatory Bowel Disease.


Episode 30 of the imPACt podcast - High School, College, Grad School & IBD

Join me (Vanessa), Hannah and Fionna for our conversation about IBD during different stages of schooling. Between the three of us, we have lived experiences with both Crohn's disease and ulcerative colitis, with being diagnosed at different life stages (during early education and in high school) and with balancing high school, college and grad school with IBD.


Exploring Fatigue in Pediatric IBD

Pediatric patients with IBD can have challenges with fatigue (feeling tired a lot of the time) and difficulties with sleep. While fatigue and sleep are known to be important factors in supporting optimal psychosocial and medical outcomes in pediatric IBD, it is unknown how these topics are talked about in IBD care with patients.

A new research project aims to learn more about Sleep & Fatigue in Pediatric IBD.


Episode 25 of the imPACt podcast - IBD, Meds, Biologics...Oh My!

Medications and biologic drugs are often a big part of managing IBD. Shira and I (Fionna) were texting about our personal experiences with meds and biologics when we realized others in the IBD community might benefit from being able to listen in on our conversation. So, we decided to make a podcast episode about it! 



The story of "Up and Adam" - my picture book for kids with IBD

Hi, my name is Adam, and I am a 24-year-old medical student. I was diagnosed with ulcerative colitis when I was two years old and had my colon removed when I was 12. Recently, I published a children's picture book, Up and Adam, about my childhood experiences facing IBD with a positive attitude. This is the story of how and why I created Up and Adam and how I hope my book can help young kids by offering a tangible connection to someone who knows what they're going through and can remind them they are not alone. 


Top 4 Things to Know When You're Diagnosed with IBD

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.


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