Bowel management is a subject that most 14 year-old boys can’t have a serious conversation about. But Mathew, a 14 year-old pediatric colorectal patient at Shriners Hospitals for Children – Northern California, has the vocabulary to talk about his colorectal condition with poise and confidence. Mathew has been a Shriners Hospitals for Children – Northern California Pediatric Colorectal Center patient since he was ten years old, and he willingly shares his story with kids and parents who might benefit from it.
Mathew’s mother Tiffany first noticed something different about Mathew when he was two years old. He was having trouble potty training. His bowel movements were infrequent and unpredictable. The family, who lives in a rural community outside of Reno, sought care from a nearby gastroenterologist. The next seven years would be filled with physical and emotional hardship for Mathew. Mathew’s care routine required that he drink large volumes of liquid medicine and sports drinks to flush his bowels every four days. The routine was time consuming and uncomfortable. Tiffany noticed Mathew’s mental health was suffering. He couldn’t participate in school activities and trips, and sleepovers were out of the question.
When Mathew was nine years old Tiffany decided to seek a second opinion. She hoped for a better life for her son, and visited a few different doctors before turning to Shriners Hospitals for Children – Northern California. At Shriners, Mathew’s team would be led by Dr. Payam Saadai, M.D., a pediatric surgeon who specializes in pediatric colorectal disorders.
“Dr. Saadai is amazing,” said Mathew. “He’s a friend. And this may sound strange, but Shriners is like a second home to me.”
Dr. Saadai and the Shriners care team – which included social workers, child life specialists, nurses, dieticians and physicians – evaluated Mathew. Mathew and his parents were then presented various treatment options.
“It was really a collaborative process,” said Tiffany. “The whole team of experts sat down together to discuss Mathew’s case and then they presented different options to us. They included us in the treatment decision and welcomed our questions and concerns.”
Mathew would undergo surgery to repair his large intestine, which had suffered damage over the years. After lots of deliberation, Mathew and his parents decided on an ACE Malone that would enable Mathew to flush his bowels through his belly button. This option meant Mathew would no longer need to drink large volumes of medicine and fluids to flush his system. It would also save him from needing a colostomy bag – so he would be able to swim and do other physical activities without worries.
“Our care team was really amazing,” said Tiffany. “The doctors gave so much thought to Mathew’s different treatment options, so that he could live like any other kid. The doctors and nursing staff did so much to educate us about how to care for Mathew once we were home.”
Today Mathew’s quality of life is greatly improved. He sees his Shriners doctors twice per year. He can participate in school trips, sleep-over at friends’ houses, and can do pretty much anything other kids his age can do. He trains in karate, plays video games with his friends, and loves to swim.
Tiffany credits Dr. Saadai and the Shriners team for Mathew’s quality of life today.
“His quality of life today is so much better than it would have been if we never found Shriners,” said Tiffany. “He is doing so much better emotionally and mentally. He’s now this confident kid, willing to share his medical journey with others who might benefit from his story. I credit the Shriners team, the Shriners family, for giving him that confidence.”