Treating Intractable Constipation with Sacral Nerve Stimulation
Contrast enemas. Daily Malone flushes. Specialized diets. Laxative trials. A sphincterectomy and a colon resection. By the age of 17, McCall Foy had pursued them all, without lasting relief for her severe constipation. Then, in 2016, an innovative therapy at Cincinnati Children’s called sacral nerve stimulation (SNS) changed the Utah resident’s life. McCall is now going to college, living in an apartment with friends and working as a certified nursing assistant – achievements she never thought would be possible before SNS.
Cincinnati Children’s is one of only a few pediatric institutions in the country to offer this innovative therapy. The procedure involves implanting a sacral nerve stimulator under the skin in the upper buttock area. This device delivers gentle electrical impulses through a probe that is placed near the sacral nerve. “The theory is that SNS restores the correct balance between excitatory and inhibitory impulses via reflex pathways to the pelvic organs at a sacral and supra-sacral level,” says Jason Frischer, MD, director of the Colorectal Center at Cincinnati Children’s and a pediatric surgeon. “SNS helps modulate “abnormal” afferent nerve impulses to these organs to restore more normal function. As we gain more experience with this therapy, we are seeing that it works well for patients with bowel and/or bladder issues, particularly fecal and urinary, as well as constipation.”
A long road When McCall came to the Cincinnati Children’s Colorectal Center in 2012, she was managing the constipation by taking laxatives and doing daily Malone flushes – as many as three flushes per day, with long evacuation times. A colorectal surgeon at a different institution had recommended a colectomy, but Frischer took a different route, suggesting McCall complete the center’s renowned Bowel Management Program. This led to a laxative regimen that was successful for a year. But symptoms – pain, bloating and long evacuation times – returned. In 2013, McCall had a partial resection of her sigmoid colon. The treatment team initiated another laxative trial, but two months later symptoms of extreme bloating and abdominal discomfort returned. The family opted to go back to daily Malone flushes.
For the next three years, McCall returned to the Colorectal Center occasionally for follow-up care. Her mom kept in close contact with Frischer and Patty Kern, RN, by phone and email as needs arose. McCall had multiple abdominal X-rays at a local hospital, and Frischer would review the images before making changes to her treatment regimen.
McCall’s junior year of high school was tough, with symptoms so intense that she missed more school days than she attended. Daily flushes kept her clean, but the pain was constant and debilitating. Frischer suggested SNS, and the Foys made the trip to Cincinnati Children’s for the procedure a week later. McCall noticed an improvement in her symptoms right away, and reported gradual yet significant improvement in the months after surgery.
Following patients for life “If SNS had been available earlier, we would have offered it before recommending resection, since it is less invasive and has a good success rate,” Frischer says. “McCall’s case really highlights the fact that we never give up on patients, even those with seemingly intractable problems. Our care team follows patients for life, and we continually adjust each patient’s treatment plan, using the latest technology to help them experience the highest quality of life possible.”
Today, McCall says, she is “doing awesome.” She is no longer taking laxatives and is having voluntary bowel movements. The gastrointestinal pain, when it returns, is not debilitating. She only does a Malone flush every nine days or so – with evacuations taking 40 minutes instead of 90. “Before SNS I was terrified I wouldn’t have a future, go to college, live on my own, get married or have kids,” she says. “When SNS really started working, it was a huge surprise. I finally feel like I can live my life.”
Frischer and colleagues at Cincinnati Children’s have developed the CINCY-FIS validated pediatric fecal incontinence quality of life tool and the Cincinnati Fecal Incontinence Severity Score. These use questionnaires to help any practitioner better understand how a patient with fecal incontinence is doing and monitor their response to therapy. The score system takes into account both objective data on fecal incontinence and subjective data on quality of life. The scoring system is validated by research, which will be published in the Journal of Pediatric Surgery in June 2018.