Key takeaways
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This study assessed our standardized bowel management program.
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Data helped identify predictive factors for bowel control in patients with spina bifida and spinal cord injuries.
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Urinary control was found to be predictive of bowel control.
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Fecal incontinence risk factors: needing a VP shunt, urinary incontinence and wheelchair usage.
Background: impaired bowel control in patients with spina bifida, other spinal cord injuries
Patients with spina bifida and other spinal cord injuries often experience impaired bladder and bowel control. In 2020, the team at the International Center for Colorectal and Urogenital Care at Children’s Hospital Colorado, including Andrea Bischoff, MD, Luis De La Torre-Mondragon, MD, Alberto Pena, MD, and Lauren Schneider, CPNP-AC/PC joined the hospital’s Multidisciplinary Spinal Defects Clinic to implement a standardized bowel management program to improve quality of life for these patients. The goal of the program is to keep the patient clean in the underwear for stool.
Overview of spina bifida and spinal cord injury
Spina bifida is a common birth defect caused by the neural tube not completely wrapping around the spinal cord, often resulting in significant long-term disabilities related to damage to the spinal cord and nerves.
Spinal cord injury is a common event, impacting about 54 people out of every million in the U.S., and approximately 10,000 new cases are reported each year. Spinal cord injury changes the systemic physiology of an individual in various ways and leads to several complications impacting quality of life. The impact of neurogenic bowel and/or neurogenic bladder on spinal cord injury patients is unknown.
This study assessed the bowel management program at Children’s Colorado to:
- Identify factors predicting bowel control in patients with spina bifida and patients with spinal cord injury
- Examine how bowel control is impacted by fetal repair in patients with spina bifida
Methods: review of Multidisciplinary Spinal Defects Clinic data
A single-center, retrospective, cross-sectional, descriptive study:
- All patients seen at the Multidisciplinary Spinal Defects Clinic from September 2020 to January 2023
- Review of electronic medical records for patients and mother's records for patients who underwent fetal repair
- Participants were divided into two groups:
- Fetal repair group
- Non-fetal repair group
Patient management protocol
Patient visits include:
- Age 3, 6, 9, 12 months, then
- Every 6 months until age 5, then
- Annually
Patients are seen by these specialists during same-day visits:
- Colorectal
- Urology
- Orthopedics
- Neurosurgery
- Physical medicine/rehabilitation
- Nutrition
- Social work
- Psychology
Bowel evaluation by the colorectal team includes:
- Abdominal radiograph at each visit to assess amount of stool in the colon
- Treat constipation in 3-month-olds to 3-year-olds with polyethylene glycol or glycerin suppository
- Formal bowel management begins at age 3 with laxatives or enemas
- Discussion with family when patient reaches age 5 about need for combined antegrade continence enemas ± Monti/Mitrofanoff procedures with or without bladder augmentation/bladder neck reconstruction
- Yearly follow-up visits to determine if bowel regimens need adjustment
Outcomes evaluation
Bowel control is defined as:
- Patient on dietary modification or laxative treatments and clean in underwear
- No involuntary bowel movements
- ≥1 bowel movement on the toilet within 24 hours
- Clean abdominal radiograph
Urinary continence is defined as:
- Patient dry in the underwear for ≥3 hours
- No clean intermittent catheterization is needed
At Children’s Colorado, bowel management program success is defined as:
- ≥2 follow-up visits documented in the Multidisciplinary Spinal Defects Clinic
- Patient clean in underwear (regardless of treatment)
- No involuntary bowel movements
- ≥1 bowel movement in the toilet in the past 24 hours
- Clean abdominal radiograph
Lesion levels were grouped according to the Management of Myelomeningocele Study. In the analysis, study authors correlated lesion level with:
- Walking independence
- Need for ventriculoperitoneal (VP) shunt
- Bowel and urinary continence
Outcomes compared between the fetal repair group and the non-fetal repair group included the same factors listed above.
Obstetrical risks were analyzed in patients who received fetal repair, including:
- Gestational age at birth
- Choriamniotic membrane separation
- Preterm premature rupture of the membranes (PPROM)
- Oligohydramnios
- Spontaneous onset of labor
Results: all patients with urinary control had bowel control
There were 336 patients included in the study:
- 170 were female
- 166 were male
- 265 patients had spina bifida
- 71 patients had a spinal cord injury
- 24% trauma-related
- 18% transverse myelitis
- 17% ischemia event
Bowel control findings
There were 288 patients over the age of 3 when bowel management begins.
- 70% had fecal incontinence
- 30% had bowel control
Patients with spinal cord injury had a higher rate of bowel control.
- 48% had a spinal cord injury
- 24% had spina bifida
Non-wheelchair users had a higher rate of bowel control.
- 47% of patients were non-wheelchair users
- 21% of patients were wheelchair users
Patients who did not require a VP shut had a higher rate of bowel control.
- 43% of patients did not require a VP shunt
- 15% of patients required a VP shunt
All patients with urinary control had bowel control, but only 18% of patients with urinary continence had bladder control.
Prevalence of fecal incontinence in study participants:
- 84% with VP shunt
- 82% with urinary incontinence
- 79% of wheelchair users
Bowel management findings
Of the 233 patients over age 3 who participated in bowel management:
- 90% remained clean for stool after completion
- 66% used enemas
- 27% used laxatives
Urological management
Of the 233 patients over age 3:
- 85% had urinary incontinence
- 88% needed clean intermittent catheterization
- 16% had bladder reconstruction
Lesion levels
- 80% of patients with L3-L4 lesions had fecal incontinence
- 93% of patients with L1-L2 lesions had urinary incontinence
- 7% of patients with cervical lesions had fecal and urinary incontinence
Of the 323 patients over age 1:
- 64% needed a wheelchair
- 86% had thoracic lesions (highest need)
- 29% had L5-S1 lesions (lowest need)
- 58% of spina bifida patients needed VP shunt placement
- 65% had L3-L4 level lesions (highest need)
- 11% had cervical lesions (lowest need)
Fetal repair
Of the 265 patients with spina bifida, 10% underwent prenatal repair. The average age at the time of the procedure was 23.9 gestational weeks.
- 34% had L3-L4 lesions
- 31% had L5-S1 lesions
- 17% had L1-L2 lesions
- 10% had thoracic lesions
- 6% had cervical lesions
When comparing both groups, there were no findings of significance for bowel and urinary control.
The fetal repair group was less likely to need a VP shunt and were more likely to walk than patients in the non-fetal repair group.
Pregnancy and delivery outcomes
- 93.1% delivered preterm, with 33 weeks average age of delivery
- 58% ≤34 weeks
- 13% <30 weeks
- 79% experienced pregnancy complications
- 43% preterm labor
- 39% preterm premature rupture of the membranes
Discussion and conclusion: urinary continence predicts bowel control
The study authors noted their previous findings on the importance of having a dedicated colorectal team in managing this patient population.
They concluded that urinary continence is a predictor of bowel control in patients with spina bifida and spinal cord injury. Fecal incontinence risk factors include:
- Need for a VP shunt
- Urinary incontinence
- Wheelchair use
Study findings demonstrate that while fetal repair in patients with spina bifida improves motor function and decreases the need for a VP shunt, there are no positive effects on bowel and urinary control.
Featured researchers

Andrea Bischoff, MD
Pediatric surgeon
International Center for Colorectal and Urogenital Care
Children's Hospital Colorado
Professor
Surgery-Peds Surgery
University of Colorado School of Medicine

Luis De la Torre, MD
Pediatric colorectal surgeon
International Center for Colorectal and Urogenital Care
Children's Hospital Colorado
Associate professor
Surgery-Peds Surgery
University of Colorado School of Medicine

Alberto Peña, MD
Founding Director
International Center for Colorectal and Urogenital Care
Children's Hospital Colorado
Professor emeritus
Surgery

Lauren Schneider, CPNP-AC/PC
Certified Pediatric Nurse Practicioner
Center for Children's Surgery
Children's Hospital Colorado