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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.

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Voices and Perspectives to Improve, Innovate and Inspire

ImproveCareNow (ICN) believes that when patients and parents/caregivers are true partners in the design and delivery of IBD care, we can achieve even better outcomes. One way our Learning Health Network fosters this partnership with our pediatric IBD families is through a Community Conference scholarship program. Scholarships cover the full costs for patients and parents/caregivers to attend our in-person meetings. 

Medical conferences have traditionally been designed just for medical professionals. Shifting this paradigm - offering enriching, content-focused meetings that engage and meet the needs of a diverse audience - is both a challenge and an opportunity. In ICN we are committed to continuously improving our conferences to better include all members of our community. Patients and parents/caregivers not only attend as full participants in our conferences, many of our sessions are also co-created and presented by these vital partners. 

Below are some reflections shared by patient & parent/caregiver attendees from our Fall 2024 Community Conference. If you would like to support this important work and bring more IBD family voices to our learning events, please make a donation to the Richard B. Colletti Family Fund.

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2024 Wrapped - Information, Knowledge & Know-How from ICN

At the end of 2024, we compiled all the wonderful information, knowledge, and know-how that was curated and shared by patients, caregivers, clinicians, researchers, and improvers across ImproveCareNow. This was our version of an "ICN wrapped" and we initially shared it with our CIRCLE eNews list. Folks quickly let us know they liked it and found it useful so we decided to share it #InTheLOOP with the hope that it will reach even more people 💚💙

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IGNITE - Bringing awareness to Very Early Onset IBD and helping other VEO families

This is Tori's story about her son's Very Early Onset Inflammatory Bowel Disease (VEO-IBD) diagnosis at just two years old. It's a story of misdiagnoses, frustrating dismissals, and the eventual discovery of a chronic condition that affects a growing number of very young children. More importantly, it's a story of resilience, hope, and the power of community. Enjoy Tori's powerful #IgniteTalk as she recalls the challenges and triumphs of raising a child with VEO-IBD and discovers how this journey has transformed her family and inspired them to advocate for others.

Be inspired by Tori's #IgniteTalk 🔥

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Crohn's Disease Exclusion Diet: Tips and Troubleshooting

In our overview post, ICN registered dieticians went over the Crohn's Disease Exclusion Diet (CDED), including when and how it may be used as part of IBD care, how the diet is structured, and what CDED users can expect to eat and drink when following the diet. In this post, we're sharing some common hurdles that patients and families may face, including tips for navigating when kids don't like CDED food or shakes, successfully shifting to a CDED lifestyle, coping with "giving up" favorite foods, what happens if things don't work out, and how to assess whether the CDED or another dietary therapy is right for you/your child.

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IGNITE - This too shall pass.

As a public speaker, it can be challenging to embody positivity while talking about such difficult experiences. Leela struck this balance in her Ignite Talk at our Fall 2024 Community Conference; she led us into the darkest moments of her IBD story and then turned on the light. During her recovery from abdominal surgery, when the stress, fear, and pain was palpable and all she wanted to do was cry but couldn't because "if I did, my stomach would feel like lava," Leela's Mom never gave up on her or left her side. In a pivotal moment involving a 🐞 ladybug, Leela felt her Dad's words "This too shall pass..." spring into her mind. Those comforting words woke her up and she was hit with the realization that this was her defining moment; "a moment in your life that you look back on and it fills you with motivation to keep moving forward - a time in your life where you went...yeah, I did that! 

Be inspired by Leela's #IgniteTalk 🔥

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PAC Moment - New patient-developed one-page resources

Patient Advisory Council members have been crowdsourcing their wisdom, tips, and tricks about IBD topics that are timely and important to them. Using their insights, they have been developing brief, helpful one-pagers that are then reviewed by various members of the ICN community such as dietitians and psychosocial providers. Take a PAC Moment to check out new patient-developed resources!

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Crohn's Disease Exclusion Diet: An Overview

The Crohn’s Disease Exclusion Diet (CDED) is a dietary therapy that may be utilized to help manage some forms of Crohn’s disease. In this post ICN Registered Dietitians give an overview of the CDED, when and how it may be used as part of IBD care, how the diet is structured, and what CDED users can expect to eat and drink when following the diet.

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