Julie Gellert had spent a decade learning to cope with the miseries inflicted by a malfunctioning digestive system. She had undergone surgery, endured injections and taken a variety of medications — one of which is banned in the United States — to treat severe abdominal pain, chronic diarrhea and recurrent vomiting.
But three years ago when her episodic vomiting grew so unpredictable she had to stash emergency “barf bags” around her Arizona apartment, Gellert wondered how much worse things could get.
Four gastroenterologists had attributed her symptoms first to acid reflux and later to gastroparesis, a disorder in which food is processed too slowly. But nothing seemed to control Gellert’s incapacitating symptoms for long.
In late 2019, a specialized scan revealed the elusive cause of her long-standing problems, a delayed diagnosis resulting in harrowing treatment that may have saved her life. Gellert credits the interest of a new primary care doctor and her own tenacity in helping to ferret out the diagnosis.
“If it wasn’t for those things I’d still be living with this,” said Gellert, now 58, who says her health has improved significantly. “Sadly, part of it was also dumb luck.”
In 2010 Gellert, who had been struggling with severe acid reflux that did not respond to medication, underwent an operation to strengthen part of her esophagus and prevent the backup of stomach acid. Soon afterward she developed severe nausea and frequent diarrhea that resulted in several hospitalizations.
When her Phoenix gastroenterologist told her he didn’t know what was wrong, she saw a new specialist. The second gastroenterologist told her he suspected the surgeon had accidentally damaged her vagus nerve, which transmits signals between the brain and the digestive system. The result was gastroparesis, which slows movement of food from the stomach into the small intestine.
Because diarrhea is not typically a symptom of gastroparesis, Gellert said the new doctor speculated that Gellert might have an atypical presentation. That “didn’t make much sense to me but I accepted that answer for the time being,” she recalled.
She was referred to a GI specialist at another hospital who agreed Gellert had gastroparesis. She also saw a dietitian who suggested dietary changes, which provided some relief.
“Every test I did came back with no explanation for the diarrhea.”
— Julie Gellert
The gastroenterologist advised her to start taking domperidone, a drug that was taken off the U.S. market in 2004 because of concerns that it might be linked to cardiac arrest and sudden death. (It is available under restricted circumstances to some patients with gastroparesis and other intractable GI disorders.)
Gellert began ordering the drug from a company in Vanuatu, a tiny country in the South Pacific. At the doctor’s suggestion she underwent a procedure to implant a device called a port in her chest so she could self-administer an intravenous anti-nausea drug. She also began taking a prescription medicine to treat diarrhea.
After six months, the nausea and vomiting had lessened significantly and the port was removed. The diarrhea continued for reasons no one could explain. Gellert was hospitalized several times over the next few years as doctors searched in vain for a cause.
Repeated tests for a hard-to-eradicate infection caused by C. difficile bacteria were always negative. A colonoscopy found nothing and doctors ruled out Crohn’s disease, a serious GI disorder.
“Every test I did came back with no explanation for the diarrhea,” Gellert said.
Doctors were puzzled, but settled on a familiar explanation. They told her that diarrhea is not normally associated with gastroparesis “but in your case it must be,” she recalled.
Pain that was ‘worse than labor’
In 2015 Gellert developed severe abdominal pain that was attributed to gastroparesis; pain is a common symptom of the disorder. By then she was seeing a fourth gastroenterologist…
Read More: Years of pain, digestive problems preceded a diagnosis
