Surgical Care for Pediatric Inflammatory Bowel Disease at UPMC Children's Hospital of Pittsburgh

For children with inflammatory bowel disease (IBD), the question is often not simply whether surgery will be needed, but when surgery can provide the greatest benefit. At UPMC Children’s Hospital of Pittsburgh, pediatric surgeons are integrated into IBD care early — often long before an operation is planned — so that surgical and medical options can be considered together and families have time to understand what surgery may mean for their child.

The goal is to move away from the traditional view of surgery as a last resort after medical therapy has failed and instead consider it as one component of a child’s long-term IBD care.

“For years, surgery was thought of as a last resort. Textbooks would say that the reason a patient needs surgery is a failure of medical management,” says Kevin P. Mollen, MD, surgeon-in-chief, chief, Division of Pediatric General and Thoracic Surgery, and surgical director, Inflammatory Bowel Disease Center at UPMC Children’s. “We have tried to move away from that. I tell patients that surgery is often just part of their journey. The goal is not surgery as a last-ditch effort when someone is extremely sick. The goal is surgery at the right time.”

Dr. Mollen and Paul K. Waltz, MD, assistant professor, Division of Pediatric General and Thoracic Surgery, lead the surgical care of children and adolescents with Crohn’s disease and ulcerative colitis at UPMC Children’s. They work closely with the UPM Children’s IBD Center’s gastroenterologists and specialists in nutrition, psychology, radiology, pathology, and other disciplines to provide coordinated care throughout a child’s disease course.

Whitney Sunseri, MD, assistant professor, pediatrics, is Director of the UPMC Children’s IBD Center and oversees the care of more than 100 pediatric IBD patients. IBD patients represent a complex patient population in which surgical considerations are present from the time of diagnosis through long-term follow-up. The UPMC Children’s IBD Center functions on a longstanding multidisciplinary care model that organizes day-to-day patient management through close collaboration between the medical and surgical teams.

"These are extremely complex diseases that impact every aspect of a child's life, and it requires a number of people working together to deliver comprehensive IBD care," Dr. Mollen says. "The indications for surgery are often gray rather than black and white. The process of making a decision about an operation tends to go well when all of the disciplines involved in the patient's care, along with the patient and family, are aligned on the decision. That alignment is what we are working to support through everything the IBD Center does.

A model of shared decision-making is embraced within the UPMC Children’s IBD Center. The IBD surgical team routinely participates in endoscopy suite evaluations when there is concern for perianal or external disease at the time of a new diagnosis, allowing surgical assessment to occur in parallel with the gastrointestinal workup. Outpatient cross-referrals between the medical and surgical teams are handled directly between the physicians, often within the same day.

"If I am seeing a patient in clinic and I am worried about something beyond what I am evaluating for, I can fire off a couple of messages and get them connected with the GI team and into clinic visits quickly," Dr. Waltz says. "The integration on the inpatient and outpatient side is seamless."

The Surgical Landscape in Pediatric IBD

Approximately 15 to 20% of patients with ulcerative colitis will undergo surgery for their disease at some point, and approximately 30 to 40% of patients with Crohn's disease will require at least one abdominal operation over the course of their lives.

In ulcerative colitis, surgery is generally indicated when patients are struggling despite efforts to find the right medication, either because their current regimen has stopped working or because no regimen has brought their disease under adequate control. In some cases, the decision for surgical intervention is based on symptom burden that outpaces what medical therapy can manage, and in others the operation is elected because it offers the possibility of getting off medications entirely.

Surgery for Crohn’s disease typically works to deal with complications of the disease, including strictures, fistulas, and inflammation that cannot be controlled medically, with the goal of removing only what tissues is necessary to address the complication.

A small subset of patients present with very early onset IBD (VEO-IBD) in the first 6-years of life with aggressive disease that is challenging to manage. The condition often has an immune-modulated or genetic component and can be aggressive, requiring close coordination between gastroenterology, surgery, and additional consultants depending on the underlying contributors.

Repositioning Surgery in the Care Pathway

A large focus of the UPM Children’s IBD surgical program has been to move away from a long-standing framing of surgery as a failure of medical management in patients with ulcerative colitis or Crohn’s disease.

Earlier surgical involvement also gives families time to absorb what the procedures involved in IBD surgical care entail, which can be significant undertakings that benefit from preoperative education and rapport-building with the surgical team.

"You do not want to present these operations at a time when the family is sick, under pressure, and trying to sort through what is meant by a colostomy, an ileostomy, or a colectomy," Dr. Waltz says. "If you have time to develop a rapport with the family and walk them through it step by step, then when the time comes, they are well informed and know what to expect rather than being surprised by it."

Patients whose disease course suggests that surgery is likely within the next year are seen in the outpatient setting to begin the educational process, become familiar with surgical options, and discuss what an operation would involve. The program also takes the position that hospitalized IBD patients should generally be seen by a surgeon, even when the admission resolves without an operation, in order to keep surgical perspective in the conversation.

Pediatric-Specific IBD Considerations

A complication of IBD unique to pediatric patients is the effect of the disease on growth, particularly in the setting of Crohn’s disease. Ongoing inflammation and the systemic effects of IBD can produce growth failure or significant growth delay, and well-timed surgical intervention can change that trajectory for some patients.

"It is striking to see a patient's growth curve that has been steadily declining, and then watch it turn upward following a surgical intervention," Dr. Waltz says. "You can really make a dramatic change when you intervene at the right time."

Surgical decision-making in pediatric patients also requires thoughtful planning for the future. There is currently no cure for IBD, so children with a new diagnosis will live with their disease across decades, and surgical choices made today affect what is possible for them in the future.

In cases of indeterminate colitis, where it is not yet clear whether the disease will manifest as ulcerative colitis or Crohn's, the surgical approach is structured to preserve the option of a restorative procedure should the disease ultimately prove to be ulcerative colitis. In Crohn's patients who may face multiple surgeries over the course of their lives, the surgical philosophy is conservative, removing only what is necessary at any given time and preserving intestinal length to the greatest extent possible.

Perioperative Care and Recovery

The most significant changes in surgical management of pediatric IBD in recent years have come not from operative technique but from how patients are managed before and after surgery. The UPMC Children’s surgical IBD program uses enhanced recovery after surgery (ERAS) protocols, preoperative nutritional optimization, and multimodal pain management strategies designed to facilitate shorter lengths of stay and reduce reliance on opioids.

Pain management is supported by a dedicated pediatric pain team of anesthesiologists who work with the surgical team to develop individualized perioperative pain plans.

"Pain management is a real concern for a lot of families, and we have a dedicated group of anesthesiologists who focus on multimodal pain management to make sure these patients are approached thoughtfully and that their pain is well managed after surgery," Dr. Waltz says. "I have had recent cases where, the next day, it looks like nothing has happened to the patient. The benefit of using these approaches has been tremendous."

A Program Built Around IBD-Focused Surgeons

Dr. Mollen and Dr. Waltz perform the majority of IBD-related operations at UPMC Children's. When a partner in the Division of Pediatric General and Thoracic Surgery covers a semi-urgent or urgent IBD case, the operation proceeds with input from Dr. Mollen or Dr. Waltz, keeping the team's IBD-specific expertise embedded in the care of every patient.

"Pediatric surgeons are true generalists with broad expertise and are adept at managing the surgical needs of IBD patients. As an additional benefit to patients, we have built a program around specialists and thought leaders in the field," Dr. Mollen says. "These are very complex diseases, and the people involved in these patients' care need to understand what is happening with advances in medical management, novel surgical approaches, and research in the field to be able to have high-level collaborative conversations."

More Information and Patient Referrals

To refer a patient to the UPMC Children’s IBD Center for consultation, please call 412-530-4782 or use the website contact form. Visit the UPMC Children’s IBD Center website for more information about the program.