We know all caregivers can experience big feelings when their children are diagnosed with a chronic illness and face complex and ongoing medical needs. As part of coproducing the comprehensive Caregiver Coping Resource, the resource team reached out to caregivers who identified as dads for their insights into caring for a child with Inflammatory Bowel Disease (IBD) and/or Autoimmune Liver Disease (AILD). In honor of Men's Mental Health Awareness Month, we are highlighting some of those insights - from Chapter 5 of the Caregiver Coping Resource. 

The summer of my son’s diagnosis was one our family will never forget. While backpacking in California, my then 16-year-old son developed severe, life-threatening diarrhea. This would ultimately lead to a diagnosis of Inflammatory Bowel Disease (IBD) and within 18 months my son would have a total colectomy. We ended up at an ImproveCareNow care center - Children’s Healthcare of Atlanta/GI Care for Kids – and the rest is history as they say. Except that “history” has been long, overwhelming, saddening, frustrating, hopeful, and inspiring, full of questions.

Looking back over the journal I kept during my son’s diagnosis, I am reminded of what was missing - information for the caregiver.

When I was diagnosed with Crohn’s disease at 12 years old, I was inundated with thoughts and feelings about my new diagnosis – what did it mean, why did I need to take medicine, what did a chronic illness mean for my future, how was I going to learn to swallow pills? I was – understandably and developmentally-appropriately – focused on my own coping with a new illness as a young person. I remember feeling frustrated and impatient with my very supportive parents when they prompted me to take my new medication; I cried and was obstinate often in those early weeks and months, with my parents’ support unwavering and steadfast. My mom was my advocate and champion, she always made sure my voice was heard during medical visits. My dad helped me to feel less alone, including a sincere offer to also have an NG (nasogastric) tube placed when we considered enteral therapy.

Nutritional Therapy for IBD - an ICN partner organization dedicated to advancing evidence-based nutrition as part of IBD treatment plans to enhance the well-being and health outcomes of all children and adults with Crohn’s disease or ulcerative colitis, recently launched an IBD Nutrition Navigator^™ 

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 💚💙

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!

My name is Maddie and I was diagnosed with Crohn’s Disease when I was 13 years old. I’ve been a part of the ICN network for almost 8 years, and I transitioned from my role as PAC Co-Chair a year ago. Now I have the opportunity to share my passion project with the ICN community! Introducing: EATS for IBD™

For all children and teens, bone health is important. The amount of bone tissue in the body is known as bone mass. It keeps growing throughout puberty. By age 20, bones have reached their maximum strength. Ninety percent of bone growth happens before age 20.

Children and teens with IBD may be at risk for low bone density (LBD). Low bone density makes bones weaker. Patients with height delay and patients with low BMI (body mass index) may be at higher risk. Long-term use of corticosteroids is also a risk factor for LBD. Malabsorption of nutrients and active disease contribute to the risk of LBD. Low bone density may lead to osteoporosis and fractures. Osteoporosis is a disease that weakens bones and can lead to bones becoming thinner and less dense.

Bone density and improving bone health is something to talk to your IBD care team about. Here are some things to consider:

David Suskind, MD is an IBD clinician and researcher, as well as physician leader of ImproveCareNow at Seattle Children's Hospital. At our Fall 2022 Community Conference, Dr. Suskind shared the Professor NiMBAL comic, which presents important information about Crohn's disease and ulcerative colitis in a way that is easy to digest and feels less scary. Read more about how the comic came to be as Dr. Suskind answers our Challenge, Choice, Outcome interview questions.