Posted by ImproveCareNow™ on December 15, 2022
LOOP is an important place for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, build confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.
So far, in 2022, 41 stories have been published by patients, caregivers, clinicians, collaborators, researchers, staff & leaders from across the ICN community sharing their unique perspectives on and experiences with IBD. Our top stories this year have covered a variety of topics, including: research on diet and fatigue, innovative IBD projects, new member introductions and top tips for newly-diagnosed patients, conversations about medical trauma, collaborating with IBD caregivers, and gratitude for leadership and learning together so we can all improve the health and care of people living with IBD.
Without further ado, here are our top 10, most read stories of 2022!
ICN Research Explained: Personalized Research on Diet in Ulcerative Colitis and Crohn’s Disease (PRODUCE)
“The role of diet in managing IBD was identified as an important research question by patients, parents, and providers in ImproveCareNow (ICN). The Personalized Research on Diet in Crohn’s Disease and Ulcerative Colitis (PRODUCE) study was designed to begin to look at this research question.”
Heather Kaplan, MD, MSCE worked with the Parent/Family Advisory Council to prepare this ICN Research Explained post, summarizing the results of the PRODUCE study.
iVHOODIES - An Update on The IV Sweatshirt
“When we set out to create a sweatshirt that was comfortable and provided IV access to both arms for people receiving infusions, during the height of a global pandemic, we could barely imagine producing a successful prototype let alone delivering 55 iVHOODIES - but here we are!”
Emily and Ella, who began their iVHOODIES journey with a Patient & Parent Innovation Fund award from ImproveCareNow, are back with their third update on the sweatshirts they developed to help keep folks warm and comfortable during infusions.
I was given this life because I’m strong enough to live it!
“I was given this life because I'm strong enough to live it!”
Autumn writes about living with IBD and IBS and how confiding in close friends felt like a huge step that resulted in her being overwhelmed by their support.
Top 4 Things to Know When You're Diagnosed with IBD
“IBD is a complex disease, so here are some things I found helpful while learning to navigate those first few months after my diagnosis.”
Shira lists four important things that patients newly-diagnosed with IBD need to know.
Exploring Fatigue in Pediatric IBD
“While fatigue and sleep are known to be important factors in supporting optimal psychosocial and medical outcomes in pediatric IBD, it is unknown how these topics are talked about in IBD care with patients.”
Fionna shares updates and information on a research project focused on learning more about sleep and fatigue in pediatric IBD. The post includes surveys for health care professionals and pediatric patients with IBD to participate.
The story of "Up and Adam" - my picture book for kids with IBD
“I wrote Up and Adam to offer a relatable role model for young IBD patients. Also, I wanted to make something that kids can hold onto and remind them they are not alone.”
Adam was diagnosed with ulcerative colitis at age 2. Now a medical student, he shares the story of creating a children's book based on his own childhood experiences facing IBD, which he hopes can help other kids by offering them support and connection.
The Spark That Set The Flame
“It all started six years ago, when my care center asked me to join a small local meeting where we would be discussing what we would change to improve IBD care if time and money were not factors.”
Parent/Family Advisory Council member, Jill writes about the experience of, as a parent of two children living with IBD, joining her local care team and ImproveCareNow and using her lived experience to help improve care for kids.
Episode 26 of the imPACt podcast - IBD and Medical Trauma
“...you'll hear first-hand insights from PAC members on how medical trauma has impacted them and how providers have experienced and seen medical trauma as well.”
Get #InTheLOOP with Autumn and episode 26 of the imPACt podcast, which includes patient & provider perspectives on medical trauma in IBD.
A Thank You Letter to Jill Horan
“I have read many blogs by IBD patients, and while many of them talk about their experiences with IBD, I thought that it would be practical to blog about something that may help people cope with their IBD.”
This reflection was written by incoming parent co-leaders, Heidi and Ildiko, as a celebration of the dedication, creativity, passion and kindness that Jill has brought to her careful tending of the ICN Parent/Family Advisory Council (PFAC).
It feels darn good to have ICN holding your hand
"Without ICN, my brother’s story would have been much more traumatic, lonely, and frustrating. That's an outcome no one would choose."
This is Cori's story about her brother being diagnosed with IBD two months after she left ICN, but how her experiences in this community helped her help her brother.
We are thankful for each and every one of the stories shared by folks across our ICN community! It is our hope that as more people stay #InTheLOOP with our posts we can:
- continue to bring critical awareness to chronic illnesses (like Crohn's disease and ulcerative colitis) that can be misunderstood because they are not always visible
- encourage people to connect with each other, to share information and support, so no one feels alone on their IBD journey
- build passion and momentum for our shared work of improving health & care of young people living with IBD
- keep the lines of communication open so we can all feel empowered to keep #TalkingAboutIBD
We look forward to sharing even more stories and perspectives in 2023 💚💙
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