Return to the Tools page to check out more IBD resources!
Having your body at the center of ongoing medical scrutiny is not the ideal situation in which to develop an individual and autonomous body image.
Here are some resources for Body Image & IBD.
David Wohl (parent of a child with Crohn's disease) and Mike Kappelman (pediatric gastroenterologist at UNC Children's), in collaboration with the Crohn’s & Colitis Foundation, ImproveCareNow, and NASPGHAN, have developed a slide set and pre-recorded webinar to help patients & families understand more about the purpose and process of clinical research, including clinical trials. The aim is to provide education to patients and families, and increase awareness about clinical research so that when they are approached and asked to participate in a clinical research project they can have an idea of what may be involved. Care teams can choose to incorporate the slides or webinar recording into local educational programs (i.e. an IBD education day), or share the resources with patients and families directly when discussing clinical trials. We hope these Clinical Research 101 resources are useful to patients, families, and IBD care teams.
Clinical Research 101: Patients and Clinicians Gearing up to Discover Together – View Presentation
Understanding the Importance of Pediatric Clinical Trials - Parent Guide
Nicole Learns about Clinical Trials – Patient Guide
The Mental Health Provider Guide was co-produced by the Social Worker and Psychologists (SWAP) group and members of the ImproveCareNow Community. It is a four-page guide for families and youth living with IBD.
The Mental Health Provider Guide includes detailed information about the importance of addressing mental health needs as part of comprehensive IBD care, how to find and work with a mental health provider, and what to expect during mental health counseling.
Check out this new Lifestyle and IBD web resource created by the Patient Advisory Council!
Download Patient Perspectives: Nutrition & IBD - full resource
Download Nutrition & IBD Highlight - a one-pager with highlights from the full resource.
The Ostomy Toolkit was created by the ImproveCareNow Patient Advisory Council's Advocacy Taskforce in collaboration with the whole ICN Community. The toolkit is designed for and by pediatric patients who have had, or are having, ostomy surgery (resting or permanent ostomy).
The Ostomy Toolkit includes tips, tricks and personal stories about school, travel, supplies, playing sports, clothing choices, and how to tell friends. It's an extraordinary tool to help lessen fears about ostomy surgery and life with an ostomy, and to promote awareness and understanding.
Parents and caregivers, as well as patients 18 years and older, are invited to join the Smart Patients IBD Community!
There are many social networks and online communities for Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD). The Smart Patients team has built custom, disease-specific forums, which offer a truly safe, warm and engaging online community experience.
Smart Patients introduces features like conversation tagging and a clinical trials search into a culture and a space for generous, information-rich sharing. Smart Patients gives people living with chronic illnesses like IBD a safe place to learn and share, and to help each other.
Members of the Patient Advisory Council (PAC) have shared their stories and together with ImproveCareNow the PAC has created resources to help others talk about their experience with IBD.
As healthcare providers, we want our young adults to successfully navigate the health care system as independent individuals. The process of transitioning from pediatric to adult-centered health care should be seamless, and should occur when the adolescent or young adult is in a stable place, both physically and emotionally.
Here are some resources to Transition and Transfer to Adult Care, including The Transfer Toolkit!
Download the Travel Toolkit - full resource
Download the Travel Toolkit Highlight - a one-pager with highlights from the full resource
The following IBD Resources have been created by members of the Patient Advisory Council (PAC) with input from ImproveCareNow. The PAC is a group of young (14+), passionate and motivated patients with IBD who support and uplift one another while also collaborating with ImproveCareNow to improve the care and health of youth with IBD. While patients & parents are involved in the coproduction of all the resources we share, we want to highlight these PAC-led resources because they have been created especially for patients by patients.
Accommodations Toolkit and Accommodations Highlight
Patient Perspectives: Nutrition & IBD and Nutrition & IBD Highlight