Do you ever experience painful bloating and stomach pain along with multiple sclerosis (MS)? You’re not alone. Up to 30 percent of people with MS report having indigestion symptoms, compared to 8 percent of the general population.
For some people, these symptoms may be caused by gastroparesis, a condition where 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, it is often misdiagnosed.
Gastroparesis is a condition in which the stomach muscles are partially paralyzed. It disrupts the normal movement of food through the digestive tract. This can cause undigested food to stay in the stomach longer than it should, causing digestive problems that can become severe.
Signs and symptoms of gastroparesis include:
Complications of gastroparesis can include dehydration, malnutrition, and reduced quality of life. In some cases, undigested food can form a solid mass in the stomach that can worsen GI symptoms and possibly become life-threatening.
Gastroparesis can be caused by several factors, including neurological conditions, one of them being MS.
A study found that about 16 percent of people with MS experience gastroparesis, which includes symptoms like a feeling of fullness, nausea, vomiting, or abdominal pain shortly after eating. Females are more likely to develop gastroparesis than males, according to research in U.S. Pharmacist.
Members of MyMSTeam say gastroparesis makes it hard to eat, get enough nutrition, and maintain weight. “Gastroparesis is really taking a toll on me,” said one member of MyMSTeam. Another said, “I have zero appetite, but when I eat, the food just sits in my stomach, causing terrible pain and bloating. I look pregnant at times!”
Those with severe symptoms even say that gastroparesis can feel worse than MS itself. One shared, “I suffer more from stomach problems than MS.” Another said, “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.”
Here are additional descriptions of gastroparesis and MS abdominal pain in MyMSTeam members’ own words:
Members of MyMSTeam often share the daily struggles of living with both MS and gastroparesis.
Staying nourished is a daily challenge with gastroparesis. Most MyMSTeam members have no appetite or desire to eat. In addition to that, finding healthy foods that don’t trigger symptoms is hard, as the foods on the safe list for gastroparesis often have the least nutritional value. “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 led to serious weight loss for many members. “I only weigh 100 pounds. My normal weight should be 125,” said one member. Another lost 40 pounds and is trying to prevent further weight loss.
Gastroparesis can also cause major swings in blood glucose (sugar) levels. One member shared, “I always carry glucose tablets because I get severe drops in blood sugar.” Another described experiencing “hair loss and weakness since being diagnosed with gastroparesis.”
Many members feel so weak that it’s hard for them to get out of bed or do everyday tasks. “Today I tried to surprise my husband by mowing the lawn. Afterwards I suffered, throwing up a lot,” one member shared.
Scientists still don’t fully understand the cause of gastroparesis. Some researchers think it may be triggered by damage to the vagus nerve. The vagus nerve is the longest in the autonomic nervous system, and also controls stomach muscle movement. If the vagus nerve is damaged, food can’t move from the stomach to the small intestine because the muscles don’t work properly. There are several risk factors for gastroparesis.
Diabetes is the most common cause of gastroparesis. Other diseases are also thought to be risk factors for gastroparesis, though the cause-and-effect relationship is unclear. These diseases include MS, Parkinson’s disease, cerebral palsy, systemic lupus, and scleroderma.
When the cause of a disease is unclear, it’s referred to as “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, pacemaker cells help control the stomach’s muscular contractions.
Gastroparesis can result from damage to the vagus nerve during stomach or intestinal surgery. “I’ve had 12 different abdominal surgeries. 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 hypertension (high blood pressure), allergies, and diabetes. Bulking agents like psyllium fiber (sold as Metamucil and other brands) 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. Around 41 percent of people with reflux experience some kind of delay in gastric emptying.
Gastroparesis can be challenging to diagnose in people with MS who also have other symptoms. The condition is often misdiagnosed as heartburn or an ulcer. One study found that it can take an average of five years after symptoms begin to receive a proper diagnosis.
Members of MyMSTeam often express frustration at the delays in their gastroparesis diagnoses. “They told me I didn’t have gastroparesis, even as the headaches and nausea got worse,” one member shared. “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 through a gastric emptying study. This exam involves eating a light meal that contains a small amount of radioactive material. The care team then performs an abdominal scan to track how the food moves through the stomach.
Although there’s no cure for gastroparesis in MS, the condition is treatable. Treatment focuses on long-term symptom management, and may include dietary changes, lifestyle adjustments, medications, and in some cases, surgical procedures.
Diet, along with medication, can help manage mild symptoms of gastroparesis that come and go. A dietitian or nutrition specialist can create a personalized plan to meet your needs. If you have diabetes, it’s important to also control your blood glucose levels.
General dietary recommendations include:
Many of the foods that are typically recommended in healthy diets should be avoided with gastroparesis — including fresh fruits and vegetables, nuts and seeds, whole grains, and beans. While this may be concerning to some, it is still possible to maintain a healthy and varied diet, especially with the guidance of a nutritionist. For example, fruit and vegetables can be consumed when well-cooked, while high-fiber vegetables should be avoided.
When symptoms are harder to control, nutritionists may recommend pureed foods, soups, and other blended small meals. “I may be drinking smoothies forever,” said one member.
There are many medication options to treat moderate and severe symptoms of gastroparesis. One class of drugs called prokinetic or promotility agents help the stomach empty more quickly. Other medications can help ease nausea and vomiting. Be sure to discuss potential side effects of these medications with your doctor.
Use of botulinum toxin (Botox) has been studied in gastroparesis with controversial results. The drug, a nerve-blocking agent, is injected directly into the pylorus, the opening from the stomach to the small intestine. Although the most recent studies do not recommend this drug 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.
If symptoms are severe and hard to treat, surgery might be needed to help with nutrition and reduce symptoms. One option is a feeding tube, which can be placed through the nose or directly into the small intestine to bypass the stomach and provide nutrition. If these options fail, intravenous feeding — called total parenteral nutrition –– may be considered.
Another option is gastric electrical stimulation. This treatment is considered when medications don’t help. A gastric electrical stimulation device is implanted in the stomach using minimally invasive, laparoscopic surgery. The small device sends gentle electrical impulses to the stomach muscles, helping food move through the digestive tract and relieving symptoms.
There’s some evidence that alternative treatments, such as acupuncture, can help with symptoms such as bloating. Researchers have also found that some herbal options may help people manage gastroparesis symptoms. Always check with your doctor before starting any new food, medication, or supplements.
Here are some tips shared by members of MyMSTeam that may help ease symptoms:
If you need to see a gastroenterologist about gastroparesis, ask your neurologist or primary care provider for a referral.
MyMSTeam is the social network for people with MS and their loved ones. On MyMSTeam, more than 217,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Have you experienced MS and stomach issues? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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