LOOP Blog

by Autumn

When I received a MyChart message from my GI, suggesting we consider changing my Crohn's treatment, it hit me like a bullet straight to the gut. I wasn't expecting it. I did not have any symptoms of a flare yet, but labs and scope biopsies said otherwise. I received that message while waiting for an appointment, just one minute before my doctor came out to get me.

We are excited to be hosting our Fall 2024 Community Conference in Baltimore, Maryland from September 25 to September 27. We look forward to engaging with healthcare providers, patients, parents/caregivers, researchers and improvers from across ImproveCareNow to all teach and all learn, to share and develop new and innovative approaches to improve pediatric IBD care and outcomes, to further our research, and to build our community. Download our draft agenda to check out topics and sessions for this event ⬇⬇

The American Heart Association recommends 25 to 38 grams of dietary fiber from food sources each day to help achieve a healthful diet pattern¹. However, the most recently publicly available National Health and Nutrition Examination Survey (NHANES) data suggests Americans consume an average of 16 grams of fiber daily².

Not long ago, a low fiber diet was often recommended for patients with Inflammatory Bowel Disease (IBD). It was once thought that consuming foods high in fiber could worsen IBD symptoms such as diarrhea and abdominal pain; for this reason patients were told to avoid high fiber foods. However, recent investigation into the role of fiber in IBD has provided evidence that dietary fiber is beneficial for patients with IBD and should be consumed in adequate amounts.

🍌 What does the evidence say about the role of fiber in IBD?

Hi! I am Emma and I want to share the story of my IBD diagnosis because I think it could help others who have less common IBD symptoms and locations of inflammation. It all began when I was a senior in high school. I had this pain in my chest and upper abdomen whenever I ate or drank so I decided to go to the doctor.

Obesity is common among patients with pediatric Crohn's disease (PCD). Some adult studies suggest obese patients respond less well to anti-tumor necrosis factor (TNF) treatment. This study compares anti-TNF response and anti-TNF levels between pediatric patients with normal and high body mass index (BMI).

Camp Oasis transformed our daughter and became an "oasis" in her IBD journey. I am honored to share my experiences as a parent and provide tips and takeaways to providers and parents about sending your child or teen to a safe and transformative place.

ImproveCareNow Research Committee member and pediatric IBD psychologist, Jennie David PhD, recently shared her answers to some questions about the state of IBD research, emerging trends in ICN Research, significant recent discoveries, and the value of being involved for psychosocial professionals.

I first started as a volunteer physician for the Minnesota/Dakotas chapter of Camp Oasis shortly after finishing fellowship almost 20 years ago. I have since been the co-medical director in Minnesota, and now serve the North Texas/Oklahoma chapter. I have also served on the Camp Oasis advisory board for the past 6 years.

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 🔥

This study aims to characterize pediatric inflammatory bowel disease (IBD) patients who change diagnosis and describe the characteristics of that change.