If you build it, they will come,” says a voice in the movie Field of Dreams. That has been true of the colorectal surgical center at Johns Hopkins Children’s Center and its multidisciplinary bowel management clinic. Unique in the Mid-Atlantic region, the center was established in 2016 to treat children and adolescents with congenital and acquired diseases.
“As soon as we opened our multidisciplinary bowel management clinic, it started filling up every single week,” says center co-director and pediatric surgeon Isam Nasr. He and fellow co-director and pediatric surgeon Alejandro Garcia see two primary populations of patients through the center. One is children born with congenital malformations such as imperforate anus and Hirschsprung’s disease, in addition to those who have chronic constipation. The other is adolescents who develop acquired conditions such as inflammatory bowel disease, Crohn’s disease and ulcerative colitis.
“Congenital malformations are definitely a surgical problem — surgeons have to be involved in the management of these patients,” Nasr says. “Some patients require complex surgical care because of the rarity of their disease, and benefit from having their operation in a tertiary referral center like ours. They also need to be followed by surgeons — sometimes for most of their lives. This is where the bowel management clinic is important, because if you leave these patients without follow-up, they can develop complications ranging from constipation to incontinence that can become so significant they are difficult to salvage.”
The weekly clinic at the high-volume center handles all necessary pre- and post-surgical services. Nurse practitioner Margie Birdsong, a certified wound ostomy and continence nurse, coordinates the care of patients and guides parents on how to perform enemas and titrate laxatives for children at home to help achieve continence. She also teaches them how to use instruments to dilate their child’s rectum after surgeries for imperforate anus, conducts biofeedback testing to measure the level of anal rectal muscle control and prescribes at-home exercises to strengthen the muscle.
The clinic offers counseling help from psychologists as well.“Most families find it very helpful, especially during the potty training years,” says Birdsong. “For kids who are in school and having issues or potential accidents, it helps them to figure out ways of dealing with those issues.” The psychologists also help parents regulate their emotions around giving their child enemas or other treatments, she says.
Nasr and Garcia frequently discuss cases or share patient management with pediatric gastroenterologists, pediatric urologists and a pediatric nurse practitioner who directs a constipation clinic. Garcia also has been working with gastroenterologists and colorectal surgeons who see adults, to help transition older teenagers to their care.
In addition, Garcia and Nasr pursue research related to their patients. Garcia and pediatric gastroenterologist Carmelo Cuffari are using contrast ultrasound to better assess if patients with Crohn’s disease will need surgery. Nasr has been working with pediatric psychiatrists tracking the psychological and functional outcomes of patients before and after management in the clinic. Other studies are following surgical outcomes in patients with imperforate anus.
Over time, the center has become a source of social support for affected patients and their families, adds Birdsong. A group of parents recently organized a gala fundraiser to support the care of patients with motility disorders. This past June, the center held a picnic on the hospital grounds where families and patients could meet each other in a more relaxed atmosphere.
To discuss a case or refer a patient, call 443-997-5437.
Published in Surgery Winter 2020
