ImproveCareNow mental_health


Being tube-fed is about finding ways to continue to thrive.

Hello, I am Caroline! I’m 20 years old and live with a feeding tube. Since I was diagnosed with Crohn’s disease at the age of 10, my experience with feeding tubes has taken many forms. What can that look like? There are a variety of types of tubes which include nasal and surgically placed tubes, with many different reasons and uses such as nutrition, hydration, medication, or drainage. For me, the process of learning more about feeding tubes with my providers started when I was 12 years old.


IGNITE - It is OK if your illness changes you.

In a matter of days, Caitlyn went from being a full-time student athlete (following her dream of running at a D1 college) to being a full-time patient (diagnosed with IBD and severe visceral hyperalgesia). She went from balancing a rigorous training schedule and school, to managing doctors appointments, meds and nearly constant pain and fatigue. In the midst of this, she turned 21 and was pushed to find an adult care provider who would take her complicated case. She wanted someone to fight for her, who took time to understand how her illness was affecting her life and mental health, who recognized how hard she was fighting and who would support and advocate for her. In time, she found those people. With new treatments, her health began to turn around and she was able to return to school. However, her collegiate running career had come to an end. "I found myself grieving for my past life. For a body that I no longer had."

Once known affectionately as the "runner girl," who was Caitlyn without running? It turns out she is many things! Read her story to find out.

Be inspired by Caitlyn's #IgniteTalk 🔥



Crohn’s and anxiety - it’s an endless battle.

Hi, my name is Emily and I was diagnosed with Crohn’s disease in December of 2023. Something interesting about me is that I met my idol, the voice actor of Ahsoka Tano from Star Wars, Ashley Eckstein. I joined the PAC in February 2024.


IGNITE - The impact and importance of listening

Kera has been seeking information and making tough decisions from a young age. She was just 10 years old when she, with support from her Mom and Dad, made the choice to use nutritional therapy to treat and manage Crohn's disease after surgery. Her path to emergent surgery, and ultimately her diagnosis, was long and paved with painful symptoms and emotional trauma. Some adults dismissed her pain as "normal" or even lies. In her deeply honest #ignitetalk, Kera reminded us that life is full of inflection points...the moment a stomach bug morphed into chronic pain, the moment her pain was validated and she learned she had Crohn's, the moment her care providers really listened and answered her questions, the moment she realized that succeeding at nutritional therapy helped her physical health but exacted a huge toll on her mental health, the moment it became clear her issues with body image and eating were not safe or healthy, the moment she discovered the Patient Advisory Council and people who she didn't have to 'downplay her trauma around', the moment (which came just before she took the podium at #ICNCC23F) when her PAC co-chair, Shira, told her that she is allowed to take up space.

If reading about or listening to real experiences with eating disorders and/or body dysmorphia does not serve you, please protect your own mental well-being by skipping this post and video.

Be inspired by Kera's #IgniteTalk 🔥


IGNITE - I made a conscious choice to become a part of something

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 🔥


ICN Research Explained: Variability of Psychosocial Services Within the ImproveCareNow Learning Health System: Opportunities for Optimization

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.


Social Workers & Psychologists (SWAP) - Notes from the Field

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.


Medication Roller Coaster

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. 


ICN Research Explained: Pediatric GI Health Care Professionals’ Perceptions of and Engagement with Psychosocial Providers in Pediatric IBD Care

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.


ICN Research Explained: Practice Survey - Depression Screening in Pediatric Inflammatory Bowel Disease

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.


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