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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 

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Nicole Learns about Clinical Trials – Patient GuideNicole_Learns_about_Clinical_Trials_-_thumb.JPG

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The Mental Health Provider Guide was co-produced by the Psychosocial Professionals 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. 

Download The Mental Health Provider Guide 

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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.

 Download The Ostomy Toolkit 

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.

Talking about IBD 

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