Sacral Nerve Stimulation Implant Gives Young Colorectal Patient Newfound Freedom
Everybody gets constipated once in a while. But for Jon Morton, at age 10, constipation and fecal incontinence were daily occurrences—and had been for seven years of his life.
Jon’s parents, Brian and Amanda, began to notice his condition when he was three years old, around the time he stopped wearing diapers. Jon was chronically constipated, and leaked liquid stool without any warning. Countless visits to his local pediatrician and specialists in Greenville and Charleston, S.C., and Charlotte, N.C., yielded few clues and no solutions.
The Mortons tried “every diet and every laxative out there,” and had Jon tested for about 30 different diseases and genetic abnormalities. Amanda spent hours researching constipation and incontinence, searching for answers. “Around where we live, there aren’t very many doctors who are trained in this field,” Brian says. “It was so frustrating to hear them say ‘well, we’re sorry. He’s just constipated. We can’t really help.’”
Daily enemas, accidents
To keep Jon as clean as possible, Amanda and Brian used enemas to “flush out” his system at least once a day. This was a messy, time-consuming process, and Jon was still having accidents on an almost daily basis. Wanting to protect him from public embarrassment, Amanda decided to quit her job as a pharmacy technician to homeschool him and his older brother, Andrew.
Over the years, Jon was hospitalized many times for severe constipation, and his family continued to seek help from specialists, sometimes driving hundreds of miles to do so. In 2014, one of Jon’s nurse practitioners in Charleston told Amanda about the Colorectal Center at Cincinnati Children’s Hospital. The Mortons corresponded with the medical team by email, and decided to participate in the center’s highly successful Bowel Management Program. This intensive, one-week outpatient program helps children achieve bowel control through the use of laxatives and/or enemas and, in some cases, medication and an individualized diet.
From the moment they arrived at the Colorectal Center, Amanda and Brian noticed a difference. “The doctors and nurses weren’t saying ‘we don’t know,’ they were saying ‘we have options,’” Amanda says. “For once, I didn’t feel like I had to go find information—everything was laid out. The staff took pride in educating parents and children. Plus, families from all over the world were participating in the program with us. It was great talking with them about the challenges we all face.”
Jon continued to follow the regimen he learned at the Bowel Management Program for about a year. But as is the case with a small percentage of patients, he was not able to achieve bowel control. The Mortons tried to accept that he never would, but kept in touch with nurses at Cincinnati Children’s. In early 2015, they learned Jon could be a candidate for surgery that only recently has been performed on children. It involves implanting a sacral nerve stimulator under the skin in the upper buttock area. This device delivers gentle electrical impulses through a probe (a thin wire) that is placed near the sacral nerve. The technology is similar to a pacemaker, but instead of regulating a person’s heartbeat, it stimulates the bowel, sphincter and bladder muscles to work normally.
Jon’s surgery took place in September at Cincinnati Children’s, when he was 10 years old. The result? Immediate success! For the first time in his life, Jon is having normal bowel movements—he no longer needs enemas, and is about 95% accident free. The Mortons are adjusting to their newfound freedom, and recently celebrated with a family vacation to Tennessee.
Amanda admits that Jon’s illness caused her a lot more stress than it caused him. But now that his bowel movements are normal, she notices a big change. “Before, we could always tell when he was backed up—he was moody and sluggish,” she says. “After using an enema, he would be full of energy again. Now, he is full blast all the time!”
Today the Mortons are passionate about encouraging other families with similar medical challenges to find the help they need. “You can spend a long time getting nowhere,” Brian says. “If we had come to Cincinnati Children’s first, we could have avoided a lot of unnecessary steps.”