LOOP Blog

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!

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. 

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.

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 🔥

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.

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.

ImproveCareNow brings together many different people in a diversity of roles across the spectrum of pediatric IBD care. Everyone contributes to our shared mission to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.

Today, we're highlighting the ICN Social Workers & Psychologists (SWAP) group, which brings together psychosocial professionals (including social workers and psychologists) across the network to ask & answer questions, learn from & support each other, share best practices & resources, and work together to continuously improve awareness of & access to psychosocial whole-person care for pediatric IBD patients and families.

We are excited to be hosting our Fall 2023 Community Conference in Louisville, KY from October 25 to October 27. We look forward to engaging with healthcare providers, patients, parents/caregivers, researchers and improvers from across ImproveCareNow to all teach and all learn about our ongoing pediatric IBD research and improvement efforts. Download our draft agenda to preview the full conference schedule ⬇⬇

I sit staring at what feels like a mountain of pills, my pillbox barely shutting. I just wish I could be a normal college kid. Taking daily medications sounds so simple and easy, but it’s often one of my biggest challenges. Trying to keep up with medications and even appointments gets very exhausting, especially since I’ve had to do these things from a very young age. I know nothing more than a life filled with pills and appointments. 

For all children and teens, bone health is important. The amount of bone tissue in the body is known as bone mass. It keeps growing throughout puberty. By age 20, bones have reached their maximum strength. Ninety percent of bone growth happens before age 20.

Children and teens with IBD may be at risk for low bone density (LBD). Low bone density makes bones weaker. Patients with height delay and patients with low BMI (body mass index) may be at higher risk. Long-term use of corticosteroids is also a risk factor for LBD. Malabsorption of nutrients and active disease contribute to the risk of LBD. Low bone density may lead to osteoporosis and fractures. Osteoporosis is a disease that weakens bones and can lead to bones becoming thinner and less dense.

Bone density and improving bone health is something to talk to your IBD care team about. Here are some things to consider: