The latest approaches can help reduce frustration and embarrassment.
by Aviva Patz
Terry Greentree was walking her dog on a beautiful evening recently when she realized in a panic that she needed to use the bathroom, and then seconds later, it was already too late. “It was like a septic tank exploded,” says Greentree, 49, who was diagnosed with multiple sclerosis in 2006. She thought, “I can’t believe this is happening. Again.”
Bowel problems, such as constipation and urgency, are among the most common—and most emotionally upsetting—symptoms of MS, likely affecting some 70 to 90 percent of people with the disease, according to a 2014 issue of MS in Focus, a publication of the MS International Federation (MSIF). The exact number is tough to pin down because people with MS are hesitant to raise the issue with their doctors. Some may not even realize that their bowel symptoms are related to MS. According to a 2014 MSIF survey of more than 3,500 people with MS in 73 countries, 48 percent reported that bowel problems affect their day-to-day life, including their work, socializing, family and hobbies.
“We know that the higher the degree of disability from MS, the worse the bladder and bowel problems seem to be,” says Dr. Marlene Murphy Setzko, a urologist and director of Urologic Services at the Mandell Center for Comprehensive MS Care in Hartford, Connecticut. And though bladder issues are a more frequent complaint, the two go hand in hand. “Don’t think of the bladder and bowel as separate entities—if you have problems with your bladder, it’s going to impact your bowel,” Dr. Murphy says, explaining that the muscles that support the two organs are linked anatomically, forming a sort of figure eight in the pelvis. “They have to be addressed together,” she adds, “or you’re just spinning your wheels.”
The good news is that the diagnosis and treatment of bowel dysfunction are increasingly successful. “I have definitely gotten people on regimens where they have a regular, predictable schedule, where they are evacuating their bowel easily, comfortably and without anxiety,” says Dr. Amanda Ayers, a colon and rectal surgeon affiliated with St. Francis Hospital in Hartford, Connecticut, who has been working with people with MS for five years. “They can go out and do normal activities. They can get their life back.”
Here, we take a candid look at these toilet troubles and suggest the latest tips and treatments that can put you back in control.
How ‘stuff’ happens
The most common bowel symptom is constipation, cited by 37 percent of the MSIF’s survey respondents. Other common symptoms include bowel urgency, incontinence and diarrhea. Here’s how—and why.
Constipation. Normally, when the rectum is full, it sends a cue to the brain—“time to go!” But when MS damages the nervous system, scrambling or slowing signals to and from the brain, that message may not get delivered. As a result, waste backs up in the colon, where it becomes dehydrated and hard—and more difficult to pass. Constipation is defined as having fewer than three bowel movements a week or having stools that are small and hard. You might also feel bloated or have pain in your abdomen.
- Risk factors: Fatigue and difficulty walking can slow the journey of waste through the system; weakened abdominal muscles can make it harder to push; and spasticity of the pelvic floor muscles (another symptom of MS) can prevent them from relaxing enough to have normal bowel function. Constipation can also be a side effect of anticholinergics (medication to reduce bladder urgency, ironically), as well as antacids, antidepressants and diuretics. Not drinking enough fluids and eating a poor diet—lots of processed foods with few fruits and vegetables—can also raise your risk for constipation.
- In real life: “I don’t have the strength to push, so it takes forever; slow is an understatement,” says Pat Marino, 62, of Lakeworth, Florida, who was diagnosed with MS in 2002. “I sit there with my Kindle and am grateful to have more than one bathroom in the house so nobody is banging on the door.”
Fecal incontinence. Normally, the digestive system absorbs water from waste as it travels through the intestines, eventually reaching the rectum as a solid stool. But occasionally food speeds through the system too quickly; overactive muscles may shuttle intestinal contents along without enough time for water to be absorbed, causing loose stools or diarrhea. For people with MS, diarrhea may lead to loss of bowel control. Fecal incontinence can also happen with severe constipation, Dr. Murphy adds, as the bowel is stretched to capacity, causing the liquid part of the stool to leak out.
- Risk factors: Certain MS symptoms can be triggers. Weakened capacity of the rectum, less sensitivity in the rectum and loss of voluntary control of the anal sphincter can all contribute to unplanned, involuntary release. Sometimes constipation, which aggravates muscle spasticity, can trigger fecal incontinence.
- In real life: “It’s a frightening aspect of MS that most people won’t discuss, and the fear and frustration go deep,” says Greentree, who lives in Central New Jersey. “There are moments when I am so overwhelmed by the degree to which my body can betray me, I wonder if it would be easier to just give up now and have a catheter and colostomy bag put in so I don’t have to keep going through this.”
There’s a small arsenal of effective solutions for bowel issues in MS, and many are inexpensive and noninvasive. The best way to address your symptoms will depend on your level of MS and the medications you’re taking. It takes a bit of trial and error and a generous dose of patience. In the 2014 survey of people with MS, a third of respondents successfully managed bowel symptoms with dietary changes, 22 percent made lifestyle changes and 21 percent
Diet and lifestyle changes. “Fiber, fluids and fitness” is the mantra of registered dietitian Denise Nowack at the National MS Society. “Fiber is nature’s broom,” says Nowack. “It works hand in hand with fluids and activity to sweep things through the body.” Try these tweaks to improve traffic flow in your nether regions.
- Fiber. Nowack recommends building up to 25 to 30 grams a day, spread out among meals and snacks. Start the day with a high-fiber cereal with fruits and nuts; sprinkle sesame seeds or wheat germ onto salads and soups; choose whole-grain products over refined flour; fill your plate with high-fiber veggies such as kale, spinach, broccoli, carrots and beets; and snack on whole fresh fruit with edible peels. If fiber makes you bloated or gassy, use a product like Beano that helps prevent formation of gas in the intestinal tract.
- Fluids. Fiber alone can cause constipation because it absorbs water, but if you also drink more water, the combination will help move things along. Aim for eight 8-ounce glasses a day of water or other liquids (as long as they’re not caffeinated, carbonated, alcoholic or acidic, all of which can irritate the digestive system).
- It may sound counterintuitive to drink more if you’re also battling urinary urgency and incontinence, but drinking less makes things worse. “When you restrict fluids, you get constipated—you get a huge bowel sitting on the bladder, like a baby’s head,” Dr. Murphy says. And over time, Dr. Ayers adds, when you’re not filling your bladder to capacity, it may literally shrink, exacerbating the problems of urgency and frequency.
- Fitness. You don’t have to train for a marathon. Any activity you can manage—whether it’s walking, chair yoga or weight lifting—can help keep things moving, Dr. Ayers suggests.
- Scheduling. To establish a regular bowel routine, eat breakfast and drink a warm beverage at the same time every morning; then try to go—ideally within the next 20 to 30 minutes, when the emptying reflex may be strongest. Relax on the toilet for at least 10 minutes to encourage movement. Your goal should be to go easily and comfortably every one to three days.
- Positioning. To help the bowel empty, sit fully on the seat—don’t hover. And consider placing your feet on a stool to improve the angle of elimination, suggests Dr. Murphy.
- Journaling. Keeping a diary that tracks your food and drink intake and any changes in bowel habits can help you identify triggers, says Dr. Ayers. For example, Greentree learned that spicy and greasy foods made her incontinence worse, and that drinking the fermented beverage kombucha and the probiotic drink kefir seemed to make it better.
Medications. When diet and lifestyle changes aren’t enough, your doctor may adjust the medications you’re already taking or suggest adding some of the following.
- Stool softener. A safe, over-the-counter (OTC), non-addictive pill such as Colace (docusate) will draw water into the stool to make it softer. “It won’t cause cramping or send you running to the bathroom,” says Dr. Ayers, who recommends taking two daily. “It needs to be a consistent regimen, though,” she adds. “Don’t wait till you’re really constipated and then take a whole bunch of pills and have to stay in the house for a few days.”
- Laxatives. More powerful than stool softeners, laxatives might be indicated if you haven’t gone in three to four days. Dr. Ayers recommends Miralax, a tasteless powder you can mix into coffee, oatmeal or another food two to four times a day.
- Suppositories. A glycerin suppository, which you or a care partner insert along your rectal wall, can stimulate bowel activity within 20 minutes. “I see patients who get stuck and just can’t empty,” Dr. Ayers says. “A suppository gets muscles remembering what they’re supposed to do.” A suppository may create a sense of urgency, so it’s a good idea to stay near a bathroom until it goes to work, usually within 15 minutes to an hour.
- Prescription drugs. Several newer medications, including Amitiza (lubiprostone) and Linzess (linaclotide), can help relieve chronic constipation. “The drugs work by pulling water into the colon, kind of the way stool softeners do, but much more effectively,” she says. Side effects can include nausea, diarrhea and abdominal pain, but most of Dr. Ayers’ patients have not experienced them.
- Fiber supplements. If you’re not getting enough fiber from fresh, whole foods, Dr. Ayers recommends an OTC fiber supplement such as Citrucel, Benefiber or Metamucil. She recommends this natural option for diarrhea as
well as constipation. She says to think of soluble fiber as a sponge, absorbing extra fluid to bulk up a loose stool, but also helping to make a hard stool softer and easier to pass.
- Imodium. This anti-diarrheal OTC medication slows down the movement of intestinal contents through the digestive system so that more fluid can get pulled out, which makes bowels more solid. It’s not typically a long-term solution, but Dr. Ayers has seen patients take it successfully for years.
Other therapies. Short of surgery to repair damaged muscles and nerves, a handful of techniques can help restore healthier bowel function and control. Always check with your health insurance plan about coverage before starting a therapy.
- Pelvic floor therapy with biofeedback. A specialized therapist guides you in doing exercises that strengthen the entire pelvic floor—the figure eight of muscles supporting the bladder, bowel (and for women, the uterus)—to improve your control. Electrical sensors monitor your movements so you can get feedback immediately on whether you’re contracting and relaxing the right muscles. This treatment, which helps both constipation and incontinence, has no known side effects and is usually covered by insurance.
- Sacral nerve stimulation (SNS). Approved only for incontinence, not constipation, this procedure involves surgically implanting a stopwatch-sized device under the skin near the buttocks. It acts as a kind of digestive pacemaker, jolting the bladder, sphincter and pelvic floor muscles into action and improving reception of messages from the brain. Side effects include pain and soreness at the incision site for up to two weeks, as well as possibly a slight tingling, tapping or pulling sensation in the “bicycle seat” area (anus and vagina or scrotum). Complications, though rare, include pain, infection and technical problems with the device. Medicare and many other private insurance companies typically cover this therapy. Out-of-pocket costs vary by insurance plan.
- Acupuncture. Some people with MS have seen improvements with this complementary therapy, says Dr. Murphy, whose center employs a dedicated acupuncturist to help people with MS symptoms. Although it’s not known to work on any pelvic function directly, acupuncture is thought to help by allowing the body to relax, reducing muscle spasms.
Bowel problems can be inconvenient, messy and embarrassing, to say the least. But smart management strategies, loving support and a positive attitude can mean the difference between hiding at home and living a full life. Greentree believes it’s important to stay calm and be kind to herself when she has an accident. She tells herself, “This isn’t my fault—it just happened, and it’s going to be OK.” Her goal is to clean up quickly and get back to living her life as soon as possible. “This too shall pass,” she says.