Changing messy diapers is a fact of life for anyone who has a baby. But for Mike and Kim Sipowicz, this task was beyond messy—it was epic. Since the day he was born, their son, Saul, had explosive bowel movements that soiled his clothes, his sheets, the furniture and carpet. And that wasn’t all. Saul was bloated and uncomfortable and vomited frequently.
Tests at a local hospital in west Texas led to a diagnosis of Hirschsprung disease. This complex condition causes partial or total obstructions in certain sections of the bowel, and problems passing gas and stool.
Saul’s first surgery
Like most children with Hirschsprung disease, Saul needed a “pull through” surgery. This involved removing the diseased section of the colon, and connecting the end of the healthy section to the anus. Saul had the surgery as a baby. His symptoms eased at first, then worsened. “Saul’s surgeon said he could do another pull-through procedure, but that a repeat surgery carried a lot of risk,” Kim says. “It was beyond his comfort zone. He recommended that we see Dr. Jason Frischer at the Cincinnati Children’s Colorectal Center. A few months later Saul, my husband and I traveled to Cincinnati for our first appointment.”
Dr. Frischer, a pediatric colorectal surgeon, performed the repeat pull-through in October 2014. Pretty soon Saul’s cheerful personality began to shine through. “Saul was a different kid after his surgery,” Kim says. “Before, his stomach was so bloated it looked like he had a basketball in there. The care he received at Cincinnati Children’s made a big difference in how he felt and acted.”
Looking for clues
Saul’s symptoms improved at first, but within a year or so the explosive bowel movements were back. In the spring of 2016 Dr. Frischer ran a series of tests to find an explanation. But Saul’s anatomy didn’t provide any clues.
“We don’t know why some children who have Hirschsprung disease still experience symptoms after a successful pull-through procedure,” says Dr. Frischer. “Additional surgery may be needed. But doing more surgical repairs in an area where there’s already scar tissue and a lot of structures in a closed space, you run the risk of injuring nerves and other urinary tract structures. I decided to share Saul’s case with our multidisciplinary motility team, which we had established a year earlier. The goal was to find non-surgical ways to help Saul achieve continence and a much better quality of life.”
The multidisciplinary motility team—which includes Dr. Frischer, four other pediatric colorectal surgeons, three pediatric neurogastroenterologists and several nurses—meets weekly to discuss patients with complex conditions such as Hirschsprung disease who have ongoing issues with diarrhea and constipation. Together the specialists develop a unified treatment plan for each patient. They offer four clinic days per month. Patients and families can see the entire care team in one place, rather than make a separate appointment with each specialist. When a child needs to undergo a procedure, have testing or go through bowel management, appointments are scheduled in a coordinated way to streamline care.
A new direction
Confident that Saul did not require another surgery, the team recommended he complete the Colorectal Center’s Bowel Management Program. The goal of the one-week, intensive program is to help children achieve bowel control through the use of laxatives and/or enemas and, in some cases, medication and an individualized diet.
Saul completed the program that week and returned home with a treatment plan that included laxatives and colonic irrigations. A year later the care team changed his regimen to include daily enemas to further improve his bowel control. And in July 2019, Saul had another surgery (called a Malone procedure) that has simplified his daily routine of colonic irrigations.
“Before we came to Cincinnati Children’s, we would get a lot of ‘well, it could be… we don’t really know…” from Saul’s care team,” Kim says. “At Cincinnati Children’s, it’s different. The doctors and nurses are so knowledgeable, and every time we come back we hear ‘this is what’s going on, and here is our recommendation to make it better.’ The doctors communicate so well with each other that I never have to re-explain what is going on with Saul.”
After all her family has been through, Kim says she feels a special bond with Dr. Frischer, whom she describes as “Saul’s hero.” “Dr. Frischer always makes us feel very important to him,” she says. “I tear up sometimes thinking how much he has done for our son.”