Bowel Continence Across the Lifespan in People With Spina Bifida
The goal of this observational study is to learn how different enema programs affect bowel control in children and adults with spina bifida. An enema program involves putting liquid into the large intestine (colon) to help someone poop. The main questions it aims to answer are: 1. How well do different enema programs prevent bowel accidents? 2. How do these enema programs affect independence, bowel symptoms, and quality of life? Researchers will compare two types of enema programs to see which works better and is easier for participants to manage. Participants starting a new enema program will answer online survey questions at 3 different timepoints over the course of 1 year.
Inclusion Criteria:
- Minimum age 5 years old
- Myelomeningocele diagnosis
- Starting a retrograde or antegrade enema program (or switching from one enema program to the other)
- English or Spanish speaking/literate
Exclusion Criteria:
- Other types of spinal dysraphism (e.g., lipomyelomeningocele, fatty filum)
PROCEDURE: Retrograde Enema, PROCEDURE: Antegrade Enema
Spina Bifida, Neurogenic Bowel, Bowel Incontinence
retrograde enema, antegrade enema, bowel management program, bowel continence program, self-management, quality of life