LOOP Blog

Hi! My name is Becca, and I’m a junior in the School of Nursing at UNC Chapel Hill. I was diagnosed with ulcerative colitis at age fifteen, and my life has been tremendously impacted by it. I hope to use all that I have learned from my own journey to change the lives of pediatric patients in my dream job as a nurse in an IBD center.

Hello! My name is Nour (means “light” in Arabic). I graduated from college, where I majored in Cognitive Science and minored in Communication. Since 2011, my diagnosis has changed a few times from Crohn’s disease to ulcerative colitis, and then back to Crohn’s disease. It has been quite a roller-coaster! There was nothing I wanted more than to be symptom free and respond positively to medication. It definitely required patience. To share one interesting fact about me…I have been graying since I was five years old! No, it did not all just suddenly happen in my 20’s! As for my age, I will give you a hint. I was born on the same day and year a historical event occurred in East and West Berlin.

My name is Quint. I am 20 years old and attend college in Massachusetts. I was diagnosed with Crohn’s disease when I was 17, but had symptoms the year leading up to my diagnosis. A fun fact about me is that I love driving. In fact, I drove with my dad around the U.S. the summer before my first year of college. The trip was about 9000 miles and took three weeks. 

My name is Mary and I’m head of the Stanford Children’s Hospital Parent Working Group. In 2017 my team and I received an ImproveCareNow Patient and Parent Innovation Fund award to host a fun and interactive cooking class to teach members of our center how to cook healthy meals for people with IBD. Through this project, we hoped to build self-management skills and help strengthen our center’s sense of community.

Hi, my name is Jen, and my 11-year-old daughter was diagnosed with Crohn’s disease in late January 2019. Thankfully, a family friend recommended Seattle Children’s and mentioned that they have been successfully using the Specific Carbohydrate Diet (SCD) as all or part of many patients’ treatment plans. Because nutrition therapy was something we were interested in, we decided to make an appointment there right away.

Remember potty training your precocious toddler?

Remember running to the bathroom to teach your child the proper way to use the potty? Now, imagine potty training your recently diagnosed IBD toddler. Who would have ever predicted that we would be dashing to the bathroom about 20 times in ONE day? This was our introduction to the world of Crohn's!

Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our purpose to improve health and care for all children and youth with Crohn’s disease and ulcerative colitis. We invite all people wishing to learn more about and get involved with ImproveCareNow to join us on May 2 between 6 and 8pm eastern for our Spring 2019 Virtual Community Conference. Read more to see the agenda for this event.

The MassGeneral Hospital for Children (MGHfC) Parent/Patient Advisory Team (PPAT) was honored to be selected for an ImproveCareNow (ICN) Patient and Parent Innovation Fund award in the fall of 2017. As a team of parents, patients and healthcare providers, this award enabled us to work together to provide valuable educational programs aimed at increasing and family knowledge of IBD, and much-needed opportunities for patients and families to network with others to share information, knowledge and know-how.

As a team, we have chronicled our collaborative, year-long journey of working together to increase the number of participants enrolled in our PPAT engagement group and formalize a model that others across the ICN Network can steal shamelessly. Our project has culminated in a “How to Manual”, which we are excited to continue sharing across the ICN Network at our upcoming Virtual Community Conference. This manual shares our lessons learned, challenges, tips, and strategies to achieve success in growing a local engagement program that will connect, support, and engage IBD patients and their families. Our hope is that the manual will serve as a catalyst to help other centers achieve similar partnerships, which will result in improved IBD care and outcomes.

Transition of care is a hot topic in our Pediatric Gastroenterology division. We have many patients with lifelong diagnoses, such as Inflammatory Bowel Disease, who will eventually need to move to adult care. In the past, transition and transfer of care have been a bit like an elephant in the room as patients near their 18^th birthday. Questions are nervously broached by parents at the end of office visits: “How much longer will you see my son/daughter? Where do we go? What if we don’t want to see an adult doctor?” These encounters made our team realize that we needed to do a better job preparing patients and their parents for transition and transfer of care. The question was, where do we start?

My name is Erin, and my daughter Caroline was only 9-years-old when she started losing weight, stopped growing and was exhausted all the time. As she grew sicker, she could not keep up with school, play with her friends, or participate in the activities she loves most: soccer and ballet. It took us almost 18 months to arrive at a diagnosis of Crohn’s disease.