ImproveCareNow Resources
2024 Wrapped - Information, Knowledge & Know-How from ICN
At the end of 2024, we compiled all the wonderful information, knowledge, and know-how that was curated and shared by patients, caregivers, clinicians, researchers, and improvers across ImproveCareNow. This was our version of an "ICN wrapped" and we initially shared it with our CIRCLE eNews list. Folks quickly let us know they liked it and found it useful so we decided to share it #InTheLOOP with the hope that it will reach even more people 💚💙
PAC Moment - New patient-developed one-page resources
Patient Advisory Council members have been crowdsourcing their wisdom, tips, and tricks about IBD topics that are timely and important to them. Using their insights, they have been developing brief, helpful one-pagers that are then reviewed by various members of the ICN community such as dietitians and psychosocial providers. Take a PAC Moment to check out new patient-developed resources!
Making nutrition a tasty, accessible, and nourishing option for all families living with IBD - the story of EATS for IBD
My name is Maddie and I was diagnosed with Crohn’s Disease when I was 13 years old. I’ve been a part of the ICN network for almost 8 years, and I transitioned from my role as PAC Co-Chair a year ago. Now I have the opportunity to share my passion project with the ICN community! Introducing: EATS for IBD™
Improving Bone Health
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:
Professor NiMBAL is helping IBD patients and their families get better care
David Suskind, MD is an IBD clinician and researcher, as well as physician leader of ImproveCareNow at Seattle Children's Hospital. At our Fall 2022 Community Conference, Dr. Suskind shared the Professor NiMBAL comic, which presents important information about Crohn's disease and ulcerative colitis in a way that is easy to digest and feels less scary. Read more about how the comic came to be as Dr. Suskind answers our Challenge, Choice, Outcome interview questions.
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.
PAC Moment - Patient Perspectives in IBD Care
The Patient Advisory Council (PAC) is continuously focused on advocating for IBD patients and promoting the patient perspective in IBD care. PAC Projects (like toolkits and podcasts) are one way we do this. Here are some of the things we've been working on lately:
Lifestyle and IBD - A New Web-Based Toolkit for Patients by Patients
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.
Episode 20 of the imPACt Podcast - PAC Toolkits Recap
One of the opportunities that active PAC members have is to work on the creation of PAC toolkits. These resources cover many different topics related to life with IBD, but they all share one important thing in common - they are for patients, by patients.