diagnosed with gastroparesis: seeking out specialist treatment and finding support
4 minute read
gastroparesis can present with vague symptoms like abdominal pain, bloating and nausea.
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dr. christopher andrews, a gastroenterologist at foothills medical centre in calgary, alberta and clinical professor at the university of calgary, is an authority on gastroparesis, a disease that is not well understood, with a lot of “greyness” when it comes to diagnosing. he specializes in gastrointestinal motility, which covers the diseases of the nerves, muscles and sensation of the gut—a rare field but much needed in the quest to help clinicians and patients manage gastroparesis.
the disease causes paralysis of stomach function, where the muscles in the stomach don’t move food as they should for it to be digested. it’s described as delayed gastric emptying, where food breakdown and absorption can take many hours, if not days, longer than normal digestion.
“it’s very common for patients with gastroparesis to get quite a lot of nausea or vomiting,” andrews explains, but symptoms can mimic other conditions, and standard testing is not definitive. “for example, something called cyclic vomiting syndrome or cannabis hyperemesis syndrome, which is a vomiting disorder that people who smoke a lot of cannabis on a regular basis can get. those symptoms are almost identical, and they’re all just based on symptom patterns.”
here’s how you can manage a diagnosis of gastroparesis.
see a gastroparesis specialist to learn more
if you have a diagnosis of gastroparesis, get a second opinion and make sure to see a doctor who has special training in digestive diseases.
“there’s a lot of disorders of the guts that give people a lot of symptoms and some of them are very well known like irritable bowel syndrome or functional dyspepsia, which is like ibs of the stomach essentially,” andrews says. “functional dyspepsia is abdominal pain and bloating in the upper gut area just below your ribs. generally, it doesn’t have nausea or vomiting, but sometimes in very severe cases it can.”
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getting the correct diagnosis is critical to patient treatment and monitoring.
“i see this all the time where people languish in a diagnostic limbo for years, maybe labelled with something that they don’t have or not being diagnosed with something they do have.”
while gastroparesis is becoming more common, rising in young adults in their 20s and 30s, the standard gastric emptying test isn’t definitive, and results have a lot of variability. typically, there’s a gastric scope procedure first to make sure that there’s no blockage or cancer present. next, the gastric emptying test has patients eat eggs and toast with a tracer to convey a picture of what’s happening in the stomach. but like measuring urine output, results change depending on the day. people who have slow emptying on one day might have normal emptying on another day.
further, the test doesn’t reveal what is actually going wrong with the stomach.
some cases of gastroparesis are linked to the nerve damage that can happen with diabetes. there’s also a connection to gastric surgery, where nerve damage is a result. most cases are idiopathic, meaning the cause isn’t known. andrews, who is a leading researcher in the field, says the latest findings look at the electrophysiology of the stomach to understand its inner workings. he talks about the brain-gut connection and how the vagus nerve connects the brainstem to the gastrointestinal tract with electrical signalling.
“the stomach has electrical activity in the same way the heart does, except it’s about 100 times more faint, you know, like lower voltage, so it’s much harder to pick up … stomach contractions happen three times a minute, and it’s a slow wave that starts at the top of your stomach and goes to the bottom. that’s how it grinds up the food, almost like a food mill. it requires a combination of muscle, nerve and other pacemaker cells.”
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in gastroparesis, cells are damaged, so the electrical activity is malfunctioning. andrews has helped develop a novel diagnostic device called body surface gastric mapping, not yet available in canada, that gives a more specific picture of what’s happening with the stomach.
understand your unique gastroparesis symptoms and treatment options
there’s a spectrum of severity in gastroparesis, so understanding your unique situation is important. connecting with your care team will help with answers and facing the challenges of a disease where symptoms can be episodic, flare up and then quiet down.
in severe cases, certain patients end up on feeding tubes or may need surgery to improve gastric motility and quality of life.
“there are many people who have just milder symptoms that never actually progress, which is good,” andrews notes, but symptoms like nausea, vomiting, bloating and abdominal pain are not easy to manage. er visits are not uncommon with disease flare-ups for pain, nausea relief and rehydration.
there are therapies that can be helpful, often beginning with dietary changes. when you think of stomach problems, people jump to fibre to help digestion. in gastroparesis, fibre is limited because the roughage is difficult to process and expel.
“often we talk about what’s called a low particulate diet of softer foods or even going completely to a liquid diet because liquids can often empty by gravity mostly,” he says.
when medication is recommended, the two main types are prokinetics, which help speed up and facilitate stomach emptying, and anti-nausea medications. these treat symptoms, but not the underlying condition.
connect for support
the uncertainty of symptom flare-ups and range of severity can impact quality of life, including employment, with time off work and missed social interactions. for some people, finding a support group and resources makes a huge difference in how they cope. andrews points to the canadian digestive health foundation as an organization to connect with.
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sharing personal experiences with professionals or people with the same diagnosis can help you stay positive.
“in some cases, it can get better over time in the same way nerve damage can sometimes heal. sometimes we see that with gastroparesis as well. so there’s hope, it’s not all doom and gloom.”
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