LOOP Blog

Imagine being diagnosed with a chronic illness in the midst of a global pandemic and lockdown. How does a young person develop resilience and thrive when facing incredible health challenges in isolation? How can they connect with people who understand, who can normalize IBD and offer support and validation about experiences that are still very stigmatized? Not only was Hannah able to develop resilience (on her own terms) and thrive (in the face of difficult surgeries and complications), she also found a community in ICN and the PAC and has grown into an incredible patient advocate. In her #ICNCC23S Ignite Talk, Hannah shares the story of her diagnosis, what resilience and community mean to her, how asking questions and getting to know patients can open the doors to more inclusive and whole-body care.

Be inspired by Hannah's #IgniteTalk 🔥

The ImproveCareNow Network has been focused on improving outcomes for young patients with Crohn's disease and ulcerative colitis (also called Inflammatory Bowel Disease or IBD) for more than a decade. The success of our shared work is rooted firmly in our foundation of data and healthcare quality improvement (QI) science. In 2022, we piloted a new Introduction to QI (IQI) training course for clinicians at participating ICN centers who were interested in expanding their QI knowledge and practice.

What was the key study finding?

The COMBINE study compared the treatment of pediatric Crohn’s disease with an anti-TNF biologic alone versus an anti-TNF biologic combined with low-dose oral methotrexate.  The study found that adding methotrexate reduced the risk of treatment failure for adalimumab, but not for infliximab. Methotrexate did lead to more side effects, but these were mostly mild and rarely led to the stopping of treatment.

In November of 2021, I was diagnosed with IBS or irritable bowel syndrome. I had an uninvited, new irritable friend that became a part of my daily life, just like my IBD. Leading up to being diagnosed, I had been experiencing gut-wrenching belly pain, nausea with pain, and fluctuations between painful constipation and uncontrollable and very urgent soft stools. I knew something wasn’t right. I had experienced fluctuations of stool type from my IBD, but this time it was different. 

On Thursday, April 27 and Friday, April 28, ICN is hosting a Live Online Community Conference (LOCC). Sessions begin on April 27 at 10 AM ET (9 AM CT, 8 AM MT, 7 AM PT) and continue through 4:50 PM ET. Sessions resume again on April 28 at 10 AM ET and continue through the early part of the day, with a wrap up scheduled at 2:30 PM ET. 

All are welcome to join us for this interactive, online event and we are proud to be able to offer FREE registration to patients and parents/caregivers. When you register for the LOCC you have the option to attend sessions live or enjoy them later when it is convenient for you. All registrants will receive 60-day access to session recordings which will cover topics such as: diet & IBD, new therapeutics, whole person care, data driven improvements in care & outcomes, IUS, healthcare equity, pediatric IBD research, transition clinics, improving injection experience, A-LiNK, patient empowerment, new Ignite Talks. 

Once or twice a year, ImproveCareNow hosts an online training event called Immersion to welcome new care center staff to our community. Participants leave Immersion with a greater understanding of how ICN makes a difference; how their efforts at their care center matter; and how they can develop relationships and find support within our ICN Community.

I'm 19 years old, and I have Crohn's disease. I was diagnosed in 2012 when I was eight years old. One interesting fact is that I know how to surf even though I'm from West Virginia. I struggle the most with not letting Crohn's consume my life.

I have been surrounded by medications and taking pills my whole life. Between being diagnosed with Crohn’s disease at six years old and being diagnosed with IBS recently, with all the different medications I have to take every day and have had to try - feeling overwhelmed is an understatement!