When going gets tough

Bowel issues affect many people with MS, but lifestyle changes can help.

by Vicky Uhland

When Marie Namey started her career in multiple sclerosis nursing in 1985, disease-modifying therapies (DMTs) for MS didn’t exist, making disease management a challenge for both patients and practitioners. Even after DMTs became prevalent, Namey found that her patients tended to focus on major symptoms like mobility and cognition issues while downplaying another common symptom: bowel issues.

Namey retired from the Cleveland Clinic’s Mellen Center for Multiple Sclerosis in 2020 and now works as an independent MS nurse consultant. She says there are a variety of reasons why people with MS don’t bring up bowel symptoms like constipation and diarrhea with their healthcare providers — and why providers don’t ask about those symptoms.

First of all, people may not realize that bowel issues can be a direct symptom of MS. “They see advertisements about constipation and diarrhea on television and in magazines and think a lot of people have it, so they just normalize their bowel symptoms,” she says.

Older people with MS may think constipation is a natural part of aging. Younger people who have lived with undiagnosed MS may not know what normal bowel habits are like. And people of all ages may simply be too embarrassed to discuss bowel issues with their healthcare providers.

But talking about your bowels and asking for help is important because, unlike some other MS symptoms, simple diet and lifestyle modifications can offer significant relief.
“People remember the day they were diagnosed with MS, but also remember the first day they soiled their clothes,” Namey says. “Don’t be afraid to talk about it.”

The link between nerves and bowel
Bowel, bladder and sexual dysfunction issues tend to go hand-in-hand for people with MS, says Gabriel Pardo, MD, director of the Multiple Sclerosis Center of Excellence at the Oklahoma Medical Research Foundation. Bladder dysfunction is more common, but Pardo estimates that between 20% and 50% of his patients also have bowel dysfunction.

A 2018 study published in the Degenerative Neurological and Neuromuscular Disease journal reported that 39% to 73% of people with MS have bowel issues. A 2022 study published in the International Journal of MS Care further breaks down the numbers. The researchers cite a study that found 35% to 54% of people with MS in Western populations have constipation, while 29% to 51% have fecal incontinence, defined as diarrhea or loose stools.

Pardo says lesions in the spinal cord are the culprit behind bowel dysfunction in people with MS. These lesions damage the nervous system, which can affect the communication between the rectum and brain.

Normally, when your rectum is full, the nervous system sends a signal to the brain that it is time to make your way to the bathroom. However, when your nervous system is damaged, that signal can be delayed or derailed.

“The spinal cord information goes up and comes down,” Pardo says. “When there’s disruption of information coming from the lower body, the brain doesn’t know there’s rectal fullness.”

That can lead to constipation, which is defined as having fewer than three bowel movements a week. Your stools may also be hard and small, and you may feel bloated or have abdominal pain.

Fecal incontinence can also be related to constipation in people with MS. An overflowing rectum can leak out liquid waste, which looks and feels like diarrhea. And lack of communication between the rectum and brain can cause muscles to expel waste before it has time to absorb water in the intestines and become solid.

Muscle spasticity, which is another common symptom of MS, can also contribute to both constipation and diarrhea. Spasticity can interfere with the function of pelvic floor muscles, disrupting their ability to relax, contract and dispel
waste normally.

“Constipation is much more common in people with MS, but I also see patients with a pattern of alternating diarrhea and constipation,” Pardo says.

7 steps for bowel health
That’s the bad news. But Pardo says the good news is that for most people, MS-related bowel complications can be easily managed.

He and Namey recommend the following steps to address issues with bowel dysfunction.

1| Drink up. People with bladder issues may not want to drink much, but that can 

lead to constipation, Pardo says. He recommends around 48 ounces of water or other liquids a day as a compromise between overfilling the bladder and parching the rectum. But be careful about drinking caffeine, which can irritate your bladder.

2| Eat fiber.

Fruits, vegetables and whole grains contain fiber, which helps whisk waste through your gastrointestinal system. The specific amount needed varies from person to person, Pardo says, so it’s best to consult your practitioners. If the fiber in your diet isn’t enough, your doctor may recommend fiber supplements like Metamucil or, in rare cases, suppositories or enemas.

3| Keep a journal. Certain foods can trigger constipation or diarrhea, Namey says, so writing down when and what you eat can help you and your healthcare providers identify food intolerances. In general, spicy foods and gluten can play havoc with your digestion and elimination.

4| Exercise. Activity helps keep the muscles that push out waste strong. “Anything can help,” Namey says, including walking, marching while seated in a chair, upper-body exercises or isometric core exercises. A caregiver can also manipulate your legs or feet, or a physical therapist can aid you with pelvic-floor exercises.

5| Review your medication list. Certain medications can have constipation side effects, including antibiotics, opiates for pain relief and some antidepressants. Pardo says laxatives can be a temporary solution for constipation, but long term, they can irritate the lining of the colon and lead to more gastrointestinal issues. He prefers bulk-forming supplements like Miralax. Medications like Amitiza (lubiprostone) and Linzess (linaclotide) can help relieve chronic constipation. And baclofen, which is sometimes prescribed for spasticity, may affect bowel muscles and loosen stools, Namey says.

6| Try mind-body therapies. “Every time I read about bowel concerns, there’s some reference to stress,” Namey says. Stress-reducing activities like meditation and yoga can have an indirect effect on your bowels. Namey says there’s some evidence that abdominal massage might be helpful, as well. And acupuncture can help you relax and may reduce muscle spasms.

7| Keep it regular. Establishing a regular bowel routine can retrain your nerve-bowel-brain connection and signal to the colon it’s time to push down feces, Pardo says.

Visiting the bathroom after eating or drinking something hot can stimulate peristaltic activity, which is a cooperative effort between the nerves and muscles that moves food through the digestive tract. That’s why some practitioners recommend scheduling your daily bathroom break in the morning, after coffee or breakfast.

But if you’re trying to get out the door quickly, that may not work. The key is to pick a time when you can relax and not feel rushed. “I joke that haste does not make waste,” Namey says.

She recommends trying to go for 10 to 15 minutes, but Pardo says it could take as long as 20 to 30 minutes to have a bowel movement. If you’re not successful, keep trying. It may take a month or more for some people to get into a routine of regular bowel movements, Namey says.

If diarrhea is more of an issue for you than constipation, your doctor may recommend you see a gastroenterologist. Conditions other than MS, including irritable bowel syndrome, diverticulitis or infections, could be the culprit.

“Treating one problem in isolation of others might result in management of symptoms but won’t alleviate the issue,” Pardo says. “That’s why self-advocacy with your doctors is important when it comes to bowel issues.” 

Vicky Uhland is a writer and editor in Lafayette, Colorado.