That simple body function is almost a miracle for a child who has experienced constipation, stool leakage and difficulty with bowel movements since shortly after birth.
“She was a fast learner, crawling at 4 months and then walking at 9 months,” said her mother Katherine. “But when it came to going to the bathroom, she just couldn’t.”
At 18 months, Kalista was severely constipated on a regular basis. Referred to SSM Health Cardinal Glennon Children’s Hospital, Kalista was first placed on over-the counter medications that would soften her stools. Increased doses and then a prescription laxative caused the opposite effect — diarrhea. Even changes in diet didn’t solve the problem. And whenever the doctors tried to wean her off the laxatives, the constipation returned. “There was no real normal between the two,” said Katherine.
Lucky for the family, SSM Health Cardinal Glennon had recently established a Neurogastroenterology and Motility Center, a highly specialized clinic that treats a wide range of diseases affecting nerves and muscles anywhere along the digestive tract. There are only 15-20 such centers in the United States, and SSM Health Cardinal Glennon has the only comprehensive pediatric motility center in the region and in the state of Missouri.
“Motility disorders can impact the movement of food from the mouth, through the entire digestive tract and out through the anus,” said SLUCare pediatric gastroenterologist Dhiren Patel, MD, medical director of the motility center.
Absorption of food and the body’s removal of waste byproducts require a careful coordination of nerve and muscle movements and the release of certain hormones as food is pushed through the system. When that process doesn’t work, Dr. Patel says, any number of symptoms can appear, including:
Dr. Patel leads a team that is specialty trained in advanced motility procedures to diagnose and then treat problems associated with abnormal motility. He came to SSM Health Cardinal Glennon with a vision to start the center three years ago. Already, hundreds of patients have come to the center from throughout Missouri and surrounding states.
“I’m amazed at the number of the patients we have seen in a short period of time, , but I knew there was a need for comprehensive services here to help children with these problems,” he said. “We’re already seeing a need for more support staffing and equipment to meet the demand.”
Advanced Diagnostic Testing
What sets the center apart is the team’s expertise and the availability of advanced motility evaluations, including high resolution manometry, a procedure that places pressure measurement catheters inside the digestive tract to determine if nerves and muscles are functioning normally. Doctors also look for diseases that affect the lining of the intestines, inflammation in the digestive tract or other motility problems that may block or slow the passage of food.
Donations made to the SSM Health Cardinal Glennon Children’s Foundation helped fund the purchase of the specialized manometry equipment. “The sophisticated catheters and monitoring equipment are expensive,” says Patel. “I’m grateful that with the donations so far, we’ve been able to purchase four of these. As our center’s volume continues to increase, I hope there is continued support.” Kalista first underwent a complete medical exam. Patel then conducted a sitz marker study. During this test, a pill is swallowed containing tiny silicone rings or markers. Several days later, an X-ray shows if the rings remain in the body or were passed. “They should have been out of her system, but the x-rays showed they stopped just above her rectum,” said Katherine. “She was severely constipated and actively trying to hold back her bowel movement because it was painful to go.”
Next, Dr. Patel did an anorectal manometry, using a balloon catheter to measure Kalista’s nerve and muscle coordination in the lower part of her digestive tract. He noted no physical damage but the test showed that Kalista pushed with her belly muscles during a bowel movement but either failed to relax or tighten her bottom muscles, resulting in constipation for years. He recommended a Botox injection into her lower pelvic muscle and anus valve to artificially prevent the muscle from contracting at the wrong time. While Botox has been used for cosmetic purposes and for the treatment of migraines and urinary incontinence, its use for anal/rectal problems is fairly new.
“By injecting Botox into the anus valve, that area doesn’t contract so tightly anymore,” Dr. Patel said. “The result is that children don’t hold their bowel movements back as long as they have been, the stool diameter gets smaller, and they pass them with less effort. With the ongoing use of some laxatives, they also have somewhat softer stools. In effect, we are retraining the nerves and brain of the patients to achieve relaxation of the pelvic floor and rectal muscles and make their pushing coordination better.”
Kalista received the shot while she was under anesthesia, and she was a trooper in handling it all. “I just went to sleep and I got up and it didn’t hurt,” she said matter-of-factly.
Specialized physical therapy followed to teach her how to relax and then push to have a bowel movement. Despite her young age, she was a quick learner, helped along the way at home by her sister, Lydia. “She had a doll named Sara with a toy potty,” said Lydia, age 7. “We all sat in the bathroom together for awhile while my sister learned how to poop again.”
Kalista underwent a second Botox injection after three months and continued muscle retraining exercises. This year, she hasn’t needed any more injections and is going to the bathroom regularly. “It’s been such a relief,” says Katherine. “It was really hard to see her when she was a baby and in so much pain, trying to go to the bathroom and pushing so hard. Now she’s on a high fiber diet and we’re working to wean her off the last of the laxatives. It’s been a remarkable change.”