Posted by ImproveCareNow™ on November 30, 2023
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 đź‘€ back at our top stories of 2023!
ICN Research Explained: the COMBINE TrialÂ
“Anti-TNF biologic medications like infliximab and adalimumab are commonly used to treat pediatric Crohn’s disease. However, they do not always work, and some patients stop responding to them. Some clinicians combine biologic medications with an immune-suppressing medication called methotrexate to try to boost response. Other pediatric gastroenterologists are hesitant to add a second medicine because of concerns that two medications might lead to more side effects. The COMBINE trial was launched by the ImproveCareNow network to study the safety and effectiveness of using these biologics and methotrexate together in pediatric patients with Crohn’s disease.”
Shehzad Saeed, Michael D Kappelman (first author), David Wohl & Lisa Pitch (parent partners) co-created this summary of the COMBINE Trial results.
IGNITE - A Parent's Perspective on Healthcare Learning Networks
“When I first heard about ImproveCareNow I was trying to make sense of all of the resources available. I had no intention of “joining” or participating, I just wanted to learn about how to take care of my daughter. I am a single parent, a working professional, and back then, I was traveling for work. Why would I want to listen to webinars, go to conferences, or be on committees? Because, as I came to find out, ICN works.”
At our Spring 2023 Live Online Community Conference, we were honored to listen as Jane Weyer shared her personal story as parent to a child diagnosed not only with Crohn's disease, but also Primary Sclerosing Cholangitis (PSC) - an autoimmune liver condition affecting around 30,000 people in the US.Â
The dreaded medications
“Medications are a big part of my life. They’re also a big part of the reason I haven’t flared in over a year! Whoop Whoop! And they also come with big feelings, with having to take so many, never having a break from taking them, and to have had to try so many of them.”
PAC member, Autumn, writes openly about the ups and downs she's faced with taking many different medications to manage IBD and IBS.
imPACt ep. 36 - IBD, the Gut Microbiome, and Nutrition with Dr. Suskind and Kim Braly, RD
“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.”
This post includes details about episode 36 of the imPACt podcast and links to listen to this conversation between PAC members and providers.
The impact a chronic illness has on someone's mental health is just as important as their physical health
“My therapist has been amazing in helping me through my medical trauma, and reminding me that "We may not know what the purpose of this disease in your life is, but we do know that YOU have a purpose." That spoke volumes to me. You are so much more than your IBD and there's so much more to life than the hospital and chronic illness. After hearing that, I have really been on a mission to try to work around my Crohn's and focus on living the best life I can, because Crohn's doesn't get to ruin my life.”
In her New Member Blog, Mikinzi introduces herself and shares her real life experiences with Crohn's disease and how her faith, therapy and connecting with the PAC have helped.
Welcoming new ICN care team members
“Once or twice a year, ImproveCareNow hosts an online training event called Immersion to welcome new care center staff to our community. Participants leave Immersion with a greater understanding of how ICN makes a difference; how their efforts at their care center matter; and how they can develop relationships and find support within our ICN Community.”
This Notes From the Field post shares how we welcome new members to the Network, and includes quotes from participants that highlight exciting and important aspects of ImproveCareNow.
ICN Research Explained: Using multiple imputation of real-world data to estimate clinical remission in pediatric inflammatory bowel disease
“An important outcome of this study will be that it has potential to speed up the FDA decision-making process which will make effective treatment available to more pediatric IBD patients sooner.”
Researcher, Nanhua Zhang, worked with parent Lisa Pitch to write this summary of completed research.
Finding my way to mindfulness meditation practices that resonated
“Mindfulness and meditation have helped me so much that I became passionate about sharing these practices with other parents dealing with their children’s chronic illnesses.”
In this post, IBD parent, Cheryl shares her journey to mindfulness and how she became a teacher of these practices so she could share them with the chronic illness community.
IGNITE - Community and having a relationship with patients is important
 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.
Living with IBD and a feeding tube doesn't define you!
"February 6-10, 2023 is Feeding Tube Awareness Week! I think it’s very clever to have something like this because it seems like most people are ashamed or feel insecure when having a feeding tube; it shouldn’t be like that. A feeding tube isn’t an embarrassing thing to have. We should be grateful to have such a thing when we need it, so we don’t get even more sick."
PAC member, Rachel, shares her feeding tube - including her three tips for maintaining an NG tube - to hopefully help others who might be struggling with the stigma of using these medical devices.
Whether you are a storyteller yourself or a supporter of IBD storytelling - reading and sharing stories helps connect people and reminds us we are not alone. It gives voice to experiences that are likely common, but seldom shared openly. It chips away at stigmas that can result in poor health outcomes. And is a celebration of the wins we are making in the field of pediatric IBD, which helps us all stay energized to keep pushing forward for healthier, thriving kids.
Storytelling is at the heart of what we do in ICN. In 2024 we want to make it even easier for people across our community to share their stories so together we can...
- continue to bring critical awareness to chronic illnesses (like Crohn's disease and ulcerative colitis) that can be misunderstood because they are not always visible
- encourage people to connect with each other, to share information and support, so no one feels alone on their IBD journey
- build passion and momentum for our shared work of improving health & care of young people living with IBD
- keep the lines of communication open so we can all feel empowered to keep #TalkingAboutIBD
#StoriesMatter đź’šđź’™Â
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