LOOP Blog

Pediatric patients with IBD can have challenges with fatigue (feeling tired a lot of the time) and difficulties with sleep. 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.

A new research project aims to learn more about Sleep & Fatigue in Pediatric IBD.

I was diagnosed with Crohn's disease at six years old, a year after I started experiencing symptoms. I have now been managing this chronic illness for 16 years! In addition to being diagnosed young, I was living in the Netherlands at the time -- while I wasn't born here, all of my family is from here and Dutch was my first language.

Medications and biologic drugs are often a big part of managing IBD. Shira and I (Fionna) were texting about our personal experiences with meds and biologics when we realized others in the IBD community might benefit from being able to listen in on our conversation. So, we decided to make a podcast episode about it! 

The ICN Research committee encourages everyone to submit research proposals even if you think the research process might be too intimidating or difficult. Because when we ask and answer questions about IBD together as a community, we can get even better results.

Hi, my name is Adam, and I am a 24-year-old medical student. I was diagnosed with ulcerative colitis when I was two years old and had my colon removed when I was 12. Recently, I published a children's picture book, Up and Adam, about my childhood experiences facing IBD with a positive attitude. This is the story of how and why I created Up and Adam and how I hope my book can help young kids by offering a tangible connection to someone who knows what they're going through and can remind them they are not alone. 

The Patient Advisory Council (PAC) is continuously focused on advocating for IBD patients and promoting the patient perspective in IBD care. PAC Projects (like toolkits and podcasts) are one way we do this. Here are some of the things we've been working on lately:

Hello everyone - it's Fionna from the Patient Advisory Council communications team. I'm excited to share that after a bit of a break the PAC is back with an exciting new episode of our imPACt podcast where we chat about a commonly used, but often not discussed, IBD nutritional therapy.

Hi! My name is Sanjana and I was recently diagnosed with Crohn’s disease in April 2021. A fun fact about me is that I love doing art!

When I was diagnosed with ulcerative colitis at 14 years old, I was shocked. I was lucky enough to already have some familiarity with the disease, but I never thought it would happen to me. I had every single textbook symptom, but I still felt so numb and so distant from the new reality I had to face. This isn’t an uncommon feeling, and it can be really hard to know where to start. IBD is a complex disease, so here are some things I found helpful while learning to navigate those first few months after my diagnosis.