Parents tend to do most of the talking at their child’s doctor’s appointments. While the child is almost always present, their participation is often minimal. When it comes time to transition into adult care, the patient may feel unprepared to speak about their disease, let alone manage it on their own. Front-line staff at The Hospital for Sick Children (SickKids) recognized this problem among patients with inflammatory bowel disease (IBD) and took action.
SickKids has launched a free mobile app to empower teens and parents of young children with IBD to take control of the disease. myIBD app allows patients to track their food, stool, pain and frequency of washroom visits all on their mobile device. It also provides educational tools to help manage these symptoms.
IBD is a condition that causes inflammation in the gastrointestinal tract. There are two types: Crohn’s disease and ulcerative colitis. While Canada has the highest incidence of IBD with more than 200,000 people living with the disease, it remains a relativity misunderstood and unknown disease.
“Some days I’d go to the washroom up to 20 times. I was exhausted, in constant pain and afraid; I didn’t know what was happening to me,” says Calandra Carkner, 18, who was diagnosed with Crohn’s disease in June 2010.
Like other chronic conditions, IBD requires close monitoring to maintain a good quality of life. “Without proper tracking, patients and families often miss the ‘red flags’ which lead to an exacerbation of the disease, or in other words, an unexpected flare-up,” says Karen Frost, one of the Project Leaders and IBD Nurse Practitioner in the Division of Gastroenterology, Hepatology and Nutrition at SickKids. “myIBD app offers a visual tracking system so patients can monitor their disease activity and seek help when necessary – sooner rather than later.”
When symptoms are caught early, flare-ups and hospital admissions can be avoided. Frost, along with colleagues Dr. Johan Van Limbergen and Meaghan Wright, created myIBD app after noticing that their patients and families needed this kind of tool.
“We support our patients and their families as they adjust to the lifestyle changes required to effectively manage IBD, whether it be diet and lifestyle changes, medication, or simply monitoring symptoms. The app provides patients with immediate, round-the-clock access to current, reliable and educational IBD information to supplement the information they get in the clinic,” says Frost. “With education comes a good foundation for long term remission of disease. We stick to our mantra that the ‘remission is the mission’.”
Calandra was a competitive soccer player, an A student and a social butterfly before she was diagnosed with Crohn’s disease. “Living with Crohn’s and keeping track of my symptoms can be hard,” she explains. “myIBD app has helped me understand triggers like stress, lack of sleep, or a particular food and this helps to give me a sense of control. It’s an easy tool to use and helps me share accurate information with my doctors. It remembers all the details for me so that I can focus on life.”
With a better understanding of her disease, Calandra is managing her symptoms and was able to return to the soccer field, school and her friends. She’s now getting ready for the fall when she’ll be going away to start her first year of university.
myIBD app can also benefit adults with IBD and is currently available for free in the App Store for iPhones, iPad, and the iPod touch. It should also be available to Android devices later this year.
myIBD app was made available through a grant from Abbott Laboratories.
For more information www.ibdacademy.ca