Comparing Antegrade Versus Retrograde Enemas To Improve Bowel Continence Across the Lifespan in People With Spina Bifida
David Chu
Summary
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.
Description
Spina bifida is a rare disease affecting an estimated 166,000 people in the United States. Because of the birth defect in the spinal cord, many organ systems do not work properly. Included among these affected organ systems are the bowels or intestines, which can lead to bowel incontinence or bowel accidents. Bowel incontinence is very disruptive to the lives of people with spina bifida by affecting their ability to have romantic relationships, find jobs, and overall enjoy their lives. The spina bifida community has recognized bowel incontinence as a top priority for research. Typically, redu…
Eligibility
- Age range
- 5+ years
- Sex
- All
- Healthy volunteers
- No
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)
Interventions
- ProcedureRetrograde Enema
A retrograde enema is a bowel management technique in which the enema is given through the rectum (end of the colon). This includes cone enemas, foley balloon enemas, and Transanal irrigation (e.g. Peristeen, Navina).
- ProcedureAntegrade Enema
An antegrade enema is a bowel management technique in which an enema is given through a surgically-created tube that enters at the start of the colon. This includes MACES, cecostomy buttons, and Chait tubes.
Locations (24)
- University of Alabama at BirminghamBirmingham, Alabama
- Children's of AlabamaBirmingham, Alabama
- Phoenix Children's HospitalPhoenix, Arizona
- Children's Hospital of Los AngelesLos Angeles, California
- University of California San FranciscoSan Francisco, California
- Children's Hospital of ColoradoDenver, Colorado