Bowel Incontinence Plagues Grandmother. ‘I Was So Desperate’

The poop problems began the year Cindy Gardiner turned 76. One day, she would have  diarrhea; another, constipation. In between, she had regular bouts of intense discomfort. Then the leakage started. She was almost afraid to leave her house.

Gardiner has lived an active life, yet suddenly she had to always plan for a fecal accident.

It’s not like if you wet your pants and just go home and change. This is a mess.- Cindy Gardiner

“I couldn’t go out of my house without wearing a diaper,” the grandmother says. Even a trip to the supermarket involved a stealth black bag filled with fresh underwear and a diaper, along with hospital-sized bath wipes. “It’s not like if you wet your pants and just go home and change. This is a mess.”

Gardiner’s journey began slowly as she noticed rectal bleeding and other concerns. “Being older, I found changes in my bowel habits to be quite alarming,” she says, acknowledging fear of a cancer diagnosis. She got a colonoscopy with Dr. Andre Fialho, a gastroenterologist at the Orlando Health Digestive Health Institute’s Windermere office. It showed polyps, which were removed, and hemorrhoids, the bleeding source.  

That was good news, yet she was not at ease. “The bad incontinence had not started yet but was progressing into a problem,” she says.

Using vocabulary she’d found during research about how food passes through the human system into the toilet, she told Dr. Fialho, “My gastrointestinal system lacks motility.” That gave Dr. Fialho a “lightbulb moment,” she says. He sent her to Orlando Health Digestive Health Institute’s Gastrointestinal Motility Center in downtown Orlando.

That led to two first steps: taking a medication called tenapanor, and doing on-site, then at-home, pelvic floor therapy to strengthen the muscles that support the core, the colon and nearby organs by squeezing various parts of the body. “It’s more intense than Kegels,” she says, referring to vaginal-strengthening exercises. “It’s more times a day, and you hold in your stomach muscles, your rectum and your urethra.”

The combo helped. “Things became regular,” Gardiner says. “I could count on a bowel movement.” However, when free samples of the tenapanor ran out, Gardiner couldn’t get more. It’s a new pill introduced in 2022 for irritable bowel syndrome, her diagnosis along with dyssynergia, meaning she wasn’t controlling the muscles in her anus well.

Before providing more tenapanor, insurance and the manufacturer required Gardiner to try two older medications for six to eight weeks apiece before approving her for tenapanor moving forward. Her situation worsened.

Adding Biofeedback to the Mix

Still struggling, she began anorectal manometry, or pressure-based biofeedback, at the motility center. Under the guidance of motility specialist Dr. Huy Tran, the center’s team worked directly with Gardiner six times, about 10 days apart. The goal was to get their determined patient in touch with cues so she could better control her anal sphincters, the muscles involved in holding poop in and letting it out.

Two friendly, supportive nurses worked with Gardiner each session, making the experience comfortable and playing Taylor Swift songs, the music she chose. She arrived each time after completing two enemas at home.

“They put gel-covered tubes a third of the size of a tampon into my rectum,” she says, noting that she was on her side facing a wall. “They’d ask me to squeeze for 20 seconds, saying, ‘Hold it, hold it, hold it.’ Twenty seconds is a long time to hold your fanny. We’d do that three times, then they’d fill my rectum with warm water, and at one point a balloon. They asked me to tell them when I felt the urge, then when I thought I’d need to look for a bathroom, and then when I didn’t think I would make it because the urge was so great.”

Dr. Tran explains: “This process helps patients identify when they feel the need to poop too intensely and when they are numb to cues and don’t know it’s time for the toilet. This biofeedback retrains the muscles and nerves. It cycles the pushing and relaxing reflexes to the brain. By doing that again and again, patients improve their ability to coordinate between the rectum and the anus.”

The process also involves informing patients about better ways to defecate, such as elevating feet on a footrest, elbows on knees, abdomen bulged out and core straightened while seated on the toilet.

This may sound horrifying, Gardiner acknowledges, but she’d do it again in a flash. “I was so desperate, I was open to trying anything,” she explains. “It is not a cure; it’s an aid to help you with your problem. If you poop in the diaper in your pants in a store, you’ll feel pretty desperate to find help.”

Moving in the Right Direction

Today, Gardiner is back on the tenapanor and also has better control of her body.

“Because of the biofeedback, I understand my body’s signals and that, when I get a signal, I should go to the bathroom wherever I am.” She now flies worry-free cross-country to visit with family, watching grandkids and cooking family dinners.

She has accidents far less frequently. When she does, the trigger is likely a certain food.

“I can no longer eat beef or pork. Most fatty foods lead to bowel issues for me, and dairy, too. I figured it out by trial and error plus reading and research.” A bite of meatloaf recently caused a setback that kept her up all night. Back to a bland diet until the episode passed.

“I still have to pay attention to my body,” she has learned. When she does, she is almost always OK.