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Many pediatric and adult patients born with Spina Bifida, myelomeningocele, tethered spinal cord, or with acquired spinal cord trauma suffer from true fecal incontinence. Fecal incontinence represents a devastating problem; it is often a barrier to social acceptance at any age. Bowel issues are frustrating to manage on a daily basis. Families struggle to find a bowel management program that works for them--and they struggle even more to stick with it. Many patients and families prefer to live in denial rather than deal directly with bowel issues. Many even prefer constipation because it is more socially acceptable than having bowel accidents.
Derived from over 40 years of experience with treating patients with colorectal issues, we created a Bowel Management Program to help patients with fecal incontinence achieve bowel control. Held at the Colorectal Center at Cincinnati Children’s, this week-long, intensive program has a 95 percent success rate.
We recently adapted the Bowel Management Program for patients that have Spina Bifida and related incontinence issues. We have found that patients with both Spina Bifida and fecal incontinence have been using widely accepted treatments such as digital stimulation, glycerin suppositories and tap water enemas via cone enema devices without much success. Our week-long, intensive approach through the Bowel Management Program has helped these patients achieve a better quality of life and new sense of independence by getting them into normal underwear. Patients have commented that this program has given them their life back.
We start off the Bowel Management week by evaluating each patient’s colon usually with a contrast enema. A tailored treatment plan is created based on each patient’s need. We then use daily abdominal X-rays and patient reports to determine the exact enema solution which cleans the patient every 24 hours. We use normal saline and mild irritants such as glycerin or castile soap as the enema solution. This intensive daily monitoring and evaluation involves meetings with our doctors and nurses, some radiologic tests and thorough education of parents and patients. We also provide continued support to families after the patient returns home. 95 percent of patients attending the Bowel management Program are in normal underwear by the end of the week.
For patients whom mobility is a challenge we offer an alternative to the rectal enemas. A continent appendicostomy or Malone is a procedure where the surgeon uses the existing appendix, or surgically creates one if it doesn’t exist, to make a one way valve inside the umbilicus. The enema is then given antegrade through this opening via a small tube which is passed once daily. The patient then sits on the toilet for the administration of the enema and the transfer to the toilet for evacuation following the rectal enema is eliminated. This method of administration also offers independence for the older child or adult patient.
Appendicostomy illustration: The appendix is connected to the belly button so a tube can be passed through it for the enema administration.
Jason Frischer, MD, presented recent findings on "Bowel Management for Neurogenic Fecal Incontinence" at the Second World Congress on Spina Bifida Research and Care held March 12, 2012 in Las Vegas, Nevada.
Abstract InformationKeith Webb, Andrea Bischoff, Artur Chernoguz, Cathy Bauer, Kimberly Cain, Jen Hall, Monica Holder, Lyndsey Jackson, Patty Kern, Dana Koehler, Teri Martini, Carol McKenzie, Belinda Hsi Dickie, Michael Helmrath, Alberto Pena, Marc Levitt, Jason Frischer Background
Fecal incontinence is a significant problem in patients with spina bifida, myelomeningocele, and spinal trauma. Many treatments have been tried with variable success, and laxatives often cause more soiling. Issues such as limited mobility and laxity of the sphincter mechanism can present significant barriers to bowel management. Some of these issues may be addressed by antegrade enemas via a continent appendicostomy. We have reported on our bowel management program in over 700 patients, primarily for anorectal malformations, and achieved success 95% of the time. We postulated that application of the same principles to patients with neurogenic fecal incontinence would yield similar results. Methods
We treated 34 patients with neurogenic fecal incontinence and reviewed their experience. Sixteen patients had myelomeningocele, 14 had spina bifida occulta, and 4 had spinal cord trauma. Their age ranged from 3 to 34 years. Our bowel management program consists of identifying colonic characteristics on contrast enemas in each patient, finding the specific enema that will clean the colon, monitoring the process during one week with daily adjustments to the enema based on the patient's daily report and abdominal X-ray. Success was defined as being consistently clean for 24 hours. Results
Our bowel management program was successful in 30 of 34 patients (88%). One patient was never clean with a consistent enema, one had technical problems with enema delivery, and two were non-compliant. Thirteen patients (38%) have an appendicostomy or cecostomy. Mean follow-up was 18 months. Conclusion
Fecal incontinence causes significant morbidity and psychosocial angst among spina bifida occulta, myelomeningocele, and spinal trauma patients. Particular difficulties encountered in administration of enemas with poor sphincter tone may account for the lower success rate compared to our previous experience and may be resolved by an appendicostomy. Through our bowel management program, patients with neurogenic fecal incontinence can remain clean for 24 hours.
Listen to the archived livestream broadcast of Colorectal Center Director Marc Levitt, MD, and Teri Martini answer questions about fecal incontinence related to spina bifida.
Listen to the archived livestream broadcast of Colorectal Center Director Marc Levitt, MD, answering questions on solutions for fecal incontinence related to spina bifida.
Appendix before connection to the belly button.
Appendix connected to the belly button.
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