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Partnering for better pediatric IBD outcomes

ImproveCareNow (ICN) believes that when patients and caregivers are true partners in the design and delivery of their IBD care, we can achieve even better outcomes. One way our learning health network fosters this commitment to partnering with our pediatric IBD families is through our Community Conference scholarship program. Scholarships allow patients and/or caregivers to attend our in-person meetings at no cost to them.

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Snack Ideas for Children and Teens with IBD

Some people enjoy the tradition of setting a New Year’s resolution. While adding healthy, balanced snacks into your diet sounds like a good goal for most of us, these small meals can help young people with IBD meet their nutritional needs. If solid food is currently part of your/your child's eating plan this list of snack and smoothie recipes, and dietary exceptions may be useful to you.

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IGNITE - The impact and importance of listening

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 🔥

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#InTheLOOP with our most impactful stories of 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 👀 back at our top stories of 2023!

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Join ICN at our 2023 Virtual Community Conference on Dec 6

We are hosting our Fall 2023 Virtual Community Conference as a way for us to quickly connect with each other, share information and updates, and learn together. This event is online, and is free & open to all who want to attend. We are keeping it brief (90 minutes), conveniently timed (6:30-8pm ET/3:30-5pm PT) and flexible - making it easy for you to drop in for some or all of our sessions. Our content is intentionally focused toward patients and parents/caregivers living with IBD. So, please join us (and invite someone to come along, too) for #ICNVCC on December 6 from 6:30-8pm ET/3:30-5pm PT. 

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A Void...Filled

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.

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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 🔥

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Sleep, Pain, Anxiety, Depression, and Fatigue in Pediatric IBD

Symptoms including Sleep, Pain, Anxiety, Depression, and low Energy/fatigue, also known as the SPADE pentad, can be debilitating for people living with IBD. Research with adults with IBD has found that SPADE symptoms can be particularly distressing and disruptive, even for patients in disease remission. SPADE symptoms are believed to be multidimensional, complex, and multifactorial in nature, suggesting a number of interacting clinical, demographic, and psychosocial characteristics contribute to symptom severity. However, we have yet to explore the relationships among these symptoms in the pediatric population living with IBD.

A new research study seeks to explore SPADE symptoms in teens with IBD.

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ICN Research Explained: Variability of Psychosocial Services Within the ImproveCareNow Learning Health System: Opportunities for Optimization

Why was this study done?

The purpose of this study was to understand the availability of psychosocial services across ImproveCareNow.

There have been calls by ImproveCareNow, medical providers, and young persons living with Inflammatory Bowel Disease and their families for increased access to psychosocial services. Psychosocial services are provided by social workers and psychologists with specialized training and skills to support the unique needs of young people living with Inflammatory Bowel Disease and their families. For example, psychosocial providers can teach coping skills to manage and navigate through everyday stressors that accompany living with Inflammatory Bowel Disease (for example, learning how to swallow pills, or screen for symptoms of depression or anxiety), provide coaching for techniques to tolerate symptom flares during treatment (for example, learning relaxation strategies), and help young people prepare for medical procedures (for example, create a coping plan before scopes). Psychosocial providers can also connect patients and families with important resources in the community and support young persons in gaining more independence in their care as they transition into adulthood (for example, learning how to speak up in a doctor’s visit). Understanding the availability of these psychosocial services helps us know how the psychosocial needs are being met for our young persons living with Inflammatory Bowel Disease and their families.

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