Who should a spina bifida patient be referred to for colostomy placement?

Referral for Colostomy Placement in Spina Bifida Patients

Patients with spina bifida requiring colostomy placement should be referred to a pediatric surgeon or colorectal surgeon with experience in managing neurogenic bowel dysfunction. 1

Understanding the Need for Colostomy in Spina Bifida

• Bowel dysfunction is a significant concern for spina bifida patients, ranking as the second most common major concern after lower urinary tract dysfunction 2
• Approximately 60% of spina bifida patients experience severe fecal incontinence, which significantly impacts quality of life and emotional wellbeing 2
• Fecal incontinence has an even greater impact on quality of life than urinary incontinence due to more noticeable odor 1

Treatment Algorithm for Bowel Management Before Considering Colostomy

A stepwise approach should be followed:

1. First-line approaches (try these first):

   • Dietary modifications, laxatives, suppositories, and/or manual evacuation (successful in ~50% of cases) 1
   • Retrograde enemas (75% success rate when medical treatment fails) 1

2. Second-line approach:

   • Antegrade Continence Enema (MACE) procedure
   • Provides improved social confidence, hygiene, and independence
   • Achieves complete or near-complete fecal continence in 77% of patients 3
   • However, still labor and time-intensive (20-60 minutes for instillation and washout) 3

3. Third-line approach:

   • Colostomy when other approaches have failed or are unsuitable 1
   • Most definitive solution that eliminates time-consuming bowel routines 1
   • 84% of patients who received colostomy for fecal incontinence would choose to have the procedure again 1

Specialist Referral for Colostomy Placement

• Pediatric surgeon: The primary specialist for colostomy placement in children with spina bifida 3
• Colorectal surgeon: An appropriate alternative for adult patients with spina bifida 1

Considerations for Successful Transition of Care

• Patients with spina bifida face challenges transitioning from pediatric to adult care 4
• Parents are significantly more aware of transitioning than patients (88.9% vs 40%) 4
• Only 34% of eligible patients have a transition plan 4
• Satisfaction with transition of medical care can be greatly improved with a structured transition program 3
• Meeting with both adult and pediatric medical and nursing staff together is a key component of successful transition 3

Benefits and Risks of Colostomy

Benefits:

• Provides definitive management of fecal incontinence 1
• Patients report higher social function scores and improved coping, embarrassment, lifestyle, and depression scores compared to those with fecal incontinence 1
• Eliminates need for time-consuming bowel routines 1

Risks:

• Approximately 2% mortality rate associated with the procedure 1
• Potential complications include bleeding, cardiopulmonary events related to anesthesia, parastomal hernia, skin rashes, leakage, and ballooning 1

Recent Evidence on Alternative Approaches

• Cecostomy tubes have shown effectiveness in improving bowel continence in pediatric spina bifida patients 5
• Patients with cecostomy tubes demonstrated higher bowel continence compared to those without placements 5

Factors Associated with Bowel Dysfunction

• Male sex, obesity, urinary incontinence, and constipation are independently associated with severe fecal incontinence 2
• Patients with soft stools have significantly less severe bowel dysfunction 2
• Neurologic level and other neurologic features of spina bifida are not associated with severe fecal incontinence or severe bowel dysfunction 2