Do you suffer from painful belly bloating? You’re not alone. Up to 30 percent of people with MS report having indigestion symptoms, compared to 8 percent of the general population. Many people with multiple sclerosis (MS) experience gastroparesis, a feeling of fullness, nausea, vomiting, or abdominal pain shortly after consuming food. Women are more likely to develop gastroparesis than men.
A serious but treatable disease, gastroparesis occurs when the stomach doesn’t empty normally, leaving food to sit in the gut. Because this gastrointestinal (GI) disorder has not been well studied in people with MS — and doctors often overlook or misdiagnose it — many people struggle with debilitating symptoms for years.
Members of MyMSTeam say gastroparesis makes it hard to eat, get sufficient nutrition, and maintain weight. “Gastroparesis is really taking a toll on me,” said one member. Another said, “I have zero appetite, but when I do eat, the food literally just sits in my stomach, causing terrible pain, bloating. (I look pregnant at times!)”
Those with severe symptoms feel that gastroparesis is worse than MS itself. “I suffer more from stomach problems than MS,” said one member. “I was in the hospital twice, not responding to diet or medication. We were seriously beginning to question whether this would finally do me in,” shared another.
Gastroparesis, which means partial paralysis of the stomach, is a condition that disrupts the contraction of the stomach muscles that move food through the digestive tract. When that mechanism slows down or doesn’t work at all, undigested food lingers in the abdomen too long, causing severe digestive problems.
Signs and symptoms of gastroparesis include:
Complications from gastroparesis include dehydration, malnutrition, and reduced quality of life. Undigested food can sometimes form a solid mass in the stomach that can worsen GI symptoms and possibly be life threatening.
Here are experiences of gastroparesis in MyMSTeam members’ own words:
Members of MyMSTeam often share the impact of gastroparesis on their health and daily lives.
Staying nourished is a daily challenge with gastroparesis. Most members have no appetite or desire to eat. Not only that, finding a healthy diet that doesn’t trigger symptoms is challenging, because foods on the safe list tend to be those with the least nutrition. “All the foods that nourish your body, my body can’t process,” said one member.
Not being able to eat nutritious foods, or keep meals down, has caused significant weight loss for many members. “I only weigh 100 pounds. My normal weight should be 125,” said one. Another had a 40-pound weight drop and was struggling to prevent further weight loss.
Gastroparesis can cause major swings in blood sugar levels. One member said, “I always carry glucose tablets because I get severe drops in blood sugar.” Another experienced heartbreaking “hair loss and weakness since a gastroparesis diagnosis.”
Many members feel so weak, it’s hard to get out of bed or perform household chores. “Today I tried to surprise my husband by mowing the lawn. Afterwards I suffered, throwing up a lot,” one member shared.
Scientists haven’t yet unlocked the cause of gastroparesis. It’s believed to be triggered by damage to the vagus nerve, the longest in the autonomic nervous system, which also controls stomach muscle movement. If the vagus nerve is damaged, transfer of food from the abdomen to the small intestine is disrupted because the muscles don’t work properly. There are several risk factors for gastroparesis.
Diabetes is the most commonly known cause of gastroparesis. Other diseases — such as MS, Parkinson’s disease, cerebral palsy, systemic lupus, and scleroderma — are also thought to be risk factors for gastroparesis, but the cause and effect is unclear (idiopathic). Scientists think both diabetic and idiopathic gastroparesis may be linked to changes in the stomach’s pacemaker cells, known as the interstitial cells of Cajal (ICCs), which help control its muscular contractions.
Gastroparesis can result from damage to the vagus nerve during stomach or intestinal surgery. “I’ve had 12 different abdominal surgeries, and being opened up that many times may have caused damage to my vagus nerve,” explained one member.
Certain medications can interfere with gastric emptying. These include some antidepressants, opioids, and medications for high blood pressure, allergies, and diabetes. Bulking agents like Metamucil and antispasmodic drugs that treat other GI conditions can also contribute.
Acid reflux, which is common in people with MS, may also be a factor. Up to 40 percent of people with reflux experience some kind of delay in gastric emptying.
Primary care physicians — and some gastroenterologists — tend to underdiagnose gastroparesis, according to experts at the Cleveland Clinic. The disease is often misdiagnosed as heartburn, an allergic reaction, or an ulcer. It can take an average of five years after symptoms begin for a proper diagnosis, according to a 2017 survey conducted by the International Foundation for Gastrointestinal Disorders (IFFGD).
Members of MyMSTeam express frustration at the delays in their diagnoses. “Nobody suggested this could be a complication of MS. I recently learned of this possible connection and am still wondering why I’m the first person on my MS team to be aware of it,” complained one member.
Another fought with her doctors for answers. “They told me I didn’t have gastroparesis even as the headaches and nausea got worse, I could only tolerate water and sweets, and I lost 36 pounds. Finally, I took my health records to a surgeon who ordered an updated test and found that the gastroparesis had worsened.”
Gastroparesis is typically diagnosed with a gastric emptying study. This exam involves eating a light meal that contains a small bit of radioactive material, followed by an abdominal scan that monitors the food as it leaves the stomach.
Although there’s no cure for gastroparesis in MS, the disorder is treatable. Treatment options, which include dietary and lifestyle measures, medications, and surgical procedures, aim for long-term symptom management.
Diet, in conjunction with medication, can help manage mild symptoms that come and go. A dietitian or nutrition specialist can design a plan to meet your unique needs. If you have diabetes, your blood glucose levels will need to be controlled as well.
General dietary recommendations include:
Many of the foods to avoid are those typically recommended on healthy diets — fresh fruit and vegetables, nuts and seeds, whole grains, and beans. Making diet adjustments seemingly in reverse of standard nutritional guidelines worries many members of MyMSTeam. “My gastroenterologist told me I’ll be living on junk food the rest of my life. Now I eat Hot Pockets or Pop-Tarts. I miss real food,” lamented one member.
When symptoms are harder to control, nutritionists suggest pureed foods, soups, and other blended meals. “I may be drinking smoothies forever,” said one member.
Stumped about what to eat? The IFFGD provides sample meal plans.
There are many medication options to treat both moderate and severe symptoms of gastroparesis.
A first-line therapy and the only drug approved by the U.S. Food and Drug Administration (FDA) for treating gastroparesis, Reglan (Metoclopramide) has been shown to improve symptoms in 40 percent of people who take it. It belongs to a class of drugs called prokinetic, or promotility, agents that help the stomach empty more quickly. It may also improve nausea, vomiting, and bloating. Reglan carries a black box warning highlighting the risk of developing tardive dyskinesia, a serious muscle disorder, with long-term use.
Another prokinetic agent, Domperidone is frequently prescribed off-label to treat nausea, vomiting, and delayed gastric emptying in people who don’t respond to Reglan. It has fewer side effects, but does carry serious risks of cardiac arrhythmias, cardiac arrest, and sudden death. The drug is also excreted in breast milk and can pose risks to a breastfeeding infant. Domperidone is not marketed in the U.S., but is available via custom compounding pharmacies.
Members of MyMSTeam report good results with the medication. “I've been on Domperidone almost a year with no problems. It has made a big difference in my life along with diet,” shared one member, echoing comments of others.
Various drugs, including Benadryl (Diphenhydramine), Zofran (Ondansetron), and Compazine (Prochlorperazine), can help ease nausea and vomiting. Low-dose Nortriptyline, a tricyclic antidepressant, may also be prescribed. Possible side effects for each of these drugs should be discussed with your doctor.
In some studies, Botulinum Toxin (Botox), a nerve-blocking agent, has been shown to provide modest improvement in gastroparesis symptoms. The drug is injected directly into the pylorus, the opening from the stomach to the small intestine. Although Botox is not generally recommended for gastroparesis, some members of MyMSTeam report success with the treatment. “A Botox injection did the trick. I can now eat anything I want and have regained my weight,” said one member.
Severe symptoms that are harder to treat may require surgical procedures to maintain nutrition and reduce symptoms. A feeding tube through the nose can bypass the stomach to provide nutrition. A jejunostomy tube (J tube), another type of feeding system, is placed directly into the small intestine through the abdominal wall via minimally invasive surgery. If these options fail, intravenous feeding — called total patient nutrition –– may be considered.
Gastric electrical stimulation may be considered when medications fail to relieve symptoms. A gastric pacemaker is implanted in the stomach using minimally invasive, laparoscopic surgery. The small device uses gentle electrical impulses that stimulate stomach muscles to move contents through the digestive tract and relieve symptoms. The device has been approved by the FDA as a Humanitarian Use Device for diabetic and idiopathic gastroparesis.
There’s some evidence that alternative treatments, such as acupuncture or cannabis and cannabidiol (CBD) where legally available, can help ease nausea and other symptoms. Researchers have also found that STW 5 (Iberogast), an herbal formula from Germany, and Rikkunshito, a Japanese herbal formula, also may ease digestive symptoms. Ginger, a traditional Chinese treatment for nausea, may also be helpful. Ginger root in small doses has almost no side effects. Always check with your doctor before starting any new food, medication, or supplement.
By joining MyMSTeam, the social network and online support group for those living with multiple sclerosis, you gain a support group more than 150,000 members strong. Gastrointestinal issues are some of the most-discussed topics.
How does gastroparesis affect your daily life? Has your doctor found the right medication to manage your symptoms? What helps you successfully get through each day? Share your tips and experiences in a comment below or on MyMSTeam.