Stronger Together
A toolkit and information resource by patients for patients to help those living with Inflammatory Bowel Disease.
This helpful resource is brought to you by the Patient Advisory Council of ImproveCareNow.
Get the information you need.
Get the information you need.
Your personal resources here.
Health Literacy Toolkit
Education on IBD related health topics, including medications, common tests, and a glossary of common IBD terms.
Lifestyle Toolkit
An interactive webpage about IBD and social life, coping with treatment, mental health, and more.
Nutrition and IBD Toolkit
Nutrition tips and ideas + working with an expert as part of treatment and management.
Travel Toolkit
Stories and helpful techniques for travelers with Crohn’s disease and Ulcerative Colitis.
Disordered Eating Toolkit
Get expert advice about disordered eating behavior in IBD patients and ways to help.
College and IBD Toolkit
Helpful resources to make the process of transitioning to college with IBD less stressful.
Accommodations Toolkit
Available accommodations for IBD patients to make life easier and less stressful.
More resources for you
Toolkits
Lifestyle Toolkit
An interactive webpage about IBD and social life, coping with treatment, mental health, and more.
Health Literacy Toolkit
Education on IBD related health topics, including medications, common tests, and a glossary of common IBD terms.
Crohn’s and Colitis Storybook
Helpful perspectives, self-care, and education from others living with IBD.
Accommodations Toolkit
Available accommodations for IBD patients to make life easier and less stressful.
College and IBD Toolkit
Helpful resources to make the process of transitioning to college with IBD less stressful.
Disordered Eating Toolkit
Get expert advice about disordered eating behavior in IBD patients and ways to help.
Materials on this webpage are created by members of the ImproveCareNow Community. Do not rely on the information in these documents or resources to diagnose or treat any health condition. This information does not constitute medical advice and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. All disclaimers found on this page apply to documents on this webpage.
Supporting Each Other
Living with Inflammatory Bowel Disease is hard enough. Doing it alone is even harder. The Patient Advisory Council in partnership with ImproveCareNow has created this resource for young people to be educated and empowered. By sharing ideas, tips, and resources, we become a force of knowledge against IBD. As a voice for IBD patients, PAC members contribute to research studies to improve health care innovations and develop better treatments for all of us.
Let’s rely on each other because we’re stronger together.
Featured Posts
Why was this study done?
Pediatric patients with IBD have a higher rate of psychosocial needs than young people without IBD, including anxiety, low mood, fatigue, and body image complexities. Multidisciplinary care, including psychosocial providers (psychologists, social workers), is considered the standard of care in pediatric IBD. However, there is limited research exploring how medical providers (e.g., physicians) think about and engage with psychosocial providers in pediatric IBD.
My name is Missy Ketchum, and I am the incoming Chair of the Board of Directors of ImproveCareNow (ICN). I have served on the Board for five years, an experience that has deepened my admiration for ICN’s mission. I begin my new role as Chair on July 1, 2023.
Why was this study done?
Depression is the number one health problem in adolescents, and by age 18, 20% of adolescents will experience a major depressive episode. For kids and teens with inflammatory bowel disease, the risk for depression is high. One in three adolescents struggle with some form of depression. Depression is linked to (associated with) difficulty adhering to medication, worsened disease activity, and higher healthcare costs. Yet, little is known about depression screening practices in pediatric IBD care. An improved understanding of current screening practices is an important step toward promoting mental health in pediatrics.
Diagnosed at age 15 with severe IBD, my daughter’s journey with illness was bumpy, but manageable, until the summer after her sophomore year of college. Her colonic health had been on a slow decline for some months, and that’s when cDiff took advantage. Though her health worsened over the summer, she was able to convince her doctor to let her go back to college in the fall. There, cDiff continued to recur and stopped responding to all medications. An oral fecal microbiota transplant finally shut down the cDiff but sent her into her worst flare ever. She was hospitalized on the opposite coast from where we live. I flew out to be with her, thinking it would be for a few days and ended up staying a couple of months until she was stable enough to get her home to California, where she was admitted to a hospital there. Of all the challenges we’ve faced over the course of her illness (she’s now 27), the time we spent on the East Coast, far from all our supports was the most difficult. She was on an adult ward there, and they didn’t seem to understand why I insisted on staying with her.
It was the first time my stoic child became depressed. And I found myself overwhelmed, afraid, and alone.
I remember feeling so alone in my illness. I was diagnosed with at age six and I grew up alone with this disease I was told I had and would never go away. I was surrounded by so many people but felt so peculiar because I was the only one with this disease. I always wondered to myself, “why doesn’t anyone else have this thing called Crohn’s disease?” and “why am I the only one with it?”
You have just met someone who also has...
May 19, 2023
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