Diagnosing Daisy: A long road to endoscopy and answers
Three years ago, Daisy Varga, then 15, began experiencing worrisome symptoms, starting with unexpected blood traces in the toilet. At first, Daisy didn’t dwell on these symptoms due to the absence of other issues. However, the situation escalated as she faced changes in her bowel movements, including increased urgency, gas, bloating, and pain, which was significantly disrupting her daily life as a high school student and competitive hockey player.
In pursuit of answers, Daisy and her family sought various solutions to improve her gut health including dietary adjustments and probiotics, a medical consultation that suggested hemorrhoids, an MRI and blood tests, and treatment for parasites as recommended by a homeopathic practitioner.
As a result of this funding, the waiting list for adolescents has been significantly reduced from 200 to 30 patients since the program began.
When there was temporary relief, it was short-lived as Daisy’s symptoms would return with increased severity.
“The big question was always, ‘What is this?’ That was the most frustrating thing for me. I was told it was different things and received treatment; however, the symptoms would still come back,” said Daisy. “I had to take time off school at times and missed the last month or so of hockey, missing out on my senior game,” she added.
Not knowing is the worst
By January 2024, Daisy’s condition deteriorated markedly. Her symptoms not only returned but also intensified, leading to increased blood loss, a significant drop in energy, weight loss, and an overwhelming need for frequent bathroom visits.
After an emergency room visit, Daisy’s father, Robert, insisted that his daughter receive a colonoscopy as a crucial next step towards finally uncovering the root cause of her health issues.
“This journey has been gut-wrenching. You would do anything to take away the stress and pain for your child. It’s also a challenge to have your loved one be made a priority in the medical system as this issue is so prolific in today’s world which is concerning in and of itself. Not knowing is the worst, and not knowing how to help is close to it,” said Robert.
MCH Centre for Child and Youth Digestive Health
Dr. Tse, Daisy Varga and endoscopy nurse Chona Arellano at McMaster Children’s Hospital. The team is glad life is getting back to normal for Daisy.
Daisy was referred to McMaster Children’s Hospital Centre for Child and Youth Digestive Health which provides specialized gastroenterology services for children requiring specialty care for digestive health problems. The Centre serves a community of over 2.3 million people in south-central Ontario and is staffed by a team of health care providers, including five pediatric gastroenterologists.
Wait times for MCH’s specialized gastroenterology services for children were already long before the COVID-19 pandemic and worsened with province-wide hospital service reductions. The wait list peaked in 2023, when there were more than 200 adolescents with suspected inflammatory bowel disease waiting for endoscopies, some for up to a year.
“Reducing wait times for diagnostic endoscopies improves quality of life for children.”
While other types of imaging and testing can identify gastrointestinal diseases, in many cases endoscopy is required to make a diagnosis and begin treatment. Endoscopy is a non-surgical procedure in which a long, flexible tube with a lens at one end and a camera at the other. The scope is inserted into a patient’s rectum and then carefully moved along the digestive tract while watching on a video monitor looking for signs of inflammation, bleeding or abnormality.
Older teens get access to endoscopy from physician who treats adults
Dr. Tse displays an endoscopy tool used to diagnose conditions like Daisy’s severe ulcerative colitis.
Thanks to a historic provincial investment of more than $48 million in more than 24 programs at MCH, the hospital has been enabled to grow services and staff to improve access to care including tackling the endoscopy waitlist with a special approach created for adolescents.
Since September 2023, 16- and 17-year-old teenagers on the waiting list can receive the procedure by Dr. Frances Tse, Head of Service for Gastroenterology at Hamilton Health Sciences and staff gastroenterologist. While Dr. Tse’s patients are normally adults, funding is making it possible for her to work with MCH to provide endoscopy to older adolescents under moderate sedation.
This approach reserves the limited resources of pediatric gastroenterologists and anesthesiologists to support younger children who must be put to sleep completely using general anesthesia to ensure they stay safe, still and comfortable during the procedure which may take up to an hour to complete.
As a result of this funding, the waiting list for adolescents has been significantly reduced from 200 to 30 patients since the program began.
However, Tse notes an increased incidence of inflammatory bowel disease in children and the need for continued support for the program to prevent wait times from growing again.
“The extra funding is helping to diagnose and treat teenagers experiencing painful and debilitating gastrointestinal issues. Without ongoing support, we will be back again with a long wait list when the funding runs out,” suggests Tse. “Reducing wait times for diagnostic endoscopies improves quality of life for children.”
A long road to answers for Daisy
Once in the care of the Centre, Daisy was able to receive her scope within a week.
Daisy was diagnosed with severe ulcerative colitis, a chronic inflammatory bowel disease (IBD) that causes inflammation and ulcers (sores) in the digestive tract.
“We got Daisy on medication immediately. If there was any further delay, Daisy might have required more aggressive steroid treatment or surgical colectomy, which would have altered her quality of life significantly. Daisy improved very quickly — within a couple of weeks, the bleeding stopped, and she was feeling better,” said Tse.
Pursuing her dreams
Now that Daisy has some answers, she is able to pursue her dreams of a career in hockey. (Provided photo)
While ulcerative colitis has no known cure, several new treatments can greatly reduce the signs and symptoms of the disease and bring about long-term remission. In addition, changes in diet and lifestyle may help control symptoms and lengthen the time between flare-ups, which may involve diarrhea, belly pain and cramping, rectal pain and bleeding, fatigue, and urgent bowel movements.
“Although we were somewhat relieved to know Daisy’s condition now had a name, it was a harsh reality and worrisome, as there is a lot to learn and consider and a lot to change in your life if you want to manage it well,” said Robert.
“It really is a constant worry because I want to prevent any flare-ups. I don’t always have an ice cream cone with my friends or have that piece of pizza from our favourite shop. I have to remember to take my medication on time. All I can think about is if I’m doing the right thing,” added Daisy.
With her health now under control, Daisy looks forward to living a healthy lifestyle and pursuing her dream of becoming a professional hockey player in the Professional Women’s Hockey League (PWHL). In September 2024, Daisy will attend Dalhousie University to study kinesiology and play on the varsity women’s hockey team.
“I am beyond thankful for the support of my family. I would not have been able to get through it without them. And I’m also extremely grateful for the care at McMaster Children’s Hospital. I would sometimes be scared of certain procedures, however, the staff at McMaster always made me feel comfortable,” said Daisy.
