“By asking the right questions, I hear answers that they haven’t told to other people or that they’ve been too ashamed to say.” - Ellen Stein
Johns Hopkins gastroenterologist Ellen Stein focuses on caring for patients with complex motility disorders. As one of the relatively few women in her specialty, her practice tends to attract female patients. She’s often the first doctor they’ve ever told about their fecal incontinence.
“Doctors sometimes hint at it, but oftentimes patients can’t bring themselves to talk about what happens to a lot more people than they suspect,” she says. “By asking the right questions, I hear answers that they haven’t told to other people or that they’ve been too ashamed to say.”
Many of these patients are women who gave birth when episiotomies or forceps births were more common, or those who had tearing with births of larger children. Consequently, with age, they often suffer from pelvic floor weakness that impacts multiple systems, including the bowel.
The consequences can be devastating, Stein says. Many patients with incontinence issues have accidents multiple times a day, spurring the need to bring several changes of clothes everywhere they go. For those who work, having even a single accident can affect their professional lives. Eventually, she says, leaving the house can become too difficult. “Their quality of life plummets,” Stein adds.
To treat these patients, Stein starts with a complete workup. This always include a rectal exam to investigate a patient’s anatomy and reflexes, anorectal manometry to determine muscle strength, and in some cases, a dynamic pelvic MR defecography to assess for structural problems, such as a rectocele or prolapse. Once a problem is detected, she works closely with other specialties, including physical therapy, gynecology and urogynecology, to develop a personalized treatment plan.
On the opposite end of the spectrum, she and her colleague Shreya Raja also recently presented some initial data at a Digestive Disease Week meeting on an anxiety-related condition known as shy bowel disorder, or parcopresis. Similar to the better-known shy bladder disorder, or paruresis, sufferers have trouble initiating bowel movements in public restrooms—and many can’t have bowel movements anywhere other than the familiarity of their own homes. By developing a better understanding of how this condition is connected to other aspects of mental and physical health, she and other physicians can develop better treatments.
In the future, she says, her research might be able to further customize treatment for patients based on a factor that’s received little direct attention in health care thus far: personality. Based on a growing body of research suggesting that personality characteristics play a role in health, Stein and her collaborators are in the early phases of looking for connections between various aspects of personality and bowel disorders—research that could not only assist with diagnoses, but also with tailoring interventions.
“Motility disorders can be extremely debilitating,” she says. “When we help patients regain control, they get their lives back.”