Julie Gellert spent ten years learning how to cope with the affliction caused by a malfunctioning digestive system. one of which is prohibited in the United States.
But three years ago, things took a turn for Gellert when her episodic vomiting got so unpredictable that she had to stash an emergency “barf bag” around her Arizona apartment. I thought it could get worse.
Four gastroenterologists initially thought of her symptoms as: acid reflux and later gastroparesis, a disorder in which food is processed too slowly. But nothing seemed to control Gellert’s helpless symptoms for long.
In late 2019, a specialized scan revealed the elusive cause of her longstanding problem, leading to a delayed diagnosis and disastrous treatment that may have saved her life. We owe it to the primary care physician’s interest and her own persistence in helping us find the diagnosis.
“Without these things, I would still be living with this,” said Gellert, now 58. “Sadly, part of it was also ridiculous luck.”
In 2010, Gellert, who was suffering from severe acid reflux that did not respond to medication, of surgery Strengthens part of her esophagus and prevents stomach acid backup. Soon after, she developed severe nausea and frequent diarrhea, necessitating several hospitalizations.
When her Phoenix gastroenterologist told her he didn’t know what was wrong, she saw a new specialist. I told her vagus nerve, which carries signals between the brain and the digestive system. The result was gastroparesis, a slow movement of food from the stomach to the small intestine.
Because diarrhea isn’t typically a symptom of gastroparesis, Gellert speculated that the new doctor may have had atypical Gellert’s symptoms. , I accepted that answer for the time being,” she recalled.
She was referred to a gastroenterologist at another hospital, who agreed that Gellert had gastroparesis. She also met with a nutritionist who suggested changes to her diet.
“All the tests I’ve done have returned no explanation for diarrhea.”
— Julie Gellert
Gastroenterologist advised her to start taking Domperidonewas withdrawn from the US market in 2004 over concerns that it could lead to cardiac arrest and sudden death. (Limited to patients with intractable gastrointestinal diseases such as gastroparesis.)
Gellert began ordering drugs from a company in Vanuatu, a small South Pacific country.At her doctor’s suggestion, she underwent a procedure to implant a device called her chest port As such, she was able to self-administer intravenous anti-nausea medications. She also started taking prescription drugs to treat diarrhea.
After 6 months, the nausea and vomiting were greatly reduced and the port was removed. Diarrhea persisted for reasons no one could explain. Gellert was hospitalized several times over the next few years without doctors ever trying to find out what was wrong.
Repeated testing for hard-to-eradicate infections C. difficile Bacteria were always negative.Colonoscopy found nothing, doctor ruled out Crohn’s diseaseserious gastrointestinal disturbances.
“All the tests I’ve done have returned no explanation for diarrhea,” Gellert said.
The doctors were puzzled, but settled on a familiar explanation. They told her that diarrhea isn’t usually associated with gastroparesis, but “it must be the case in your case.
Pain ‘worse than childbirth’
In 2015, Gellert developed severe abdominal pain caused by gastroparesis. Pain is a common symptom of disability. By then she had seen her fourth gastroenterologist closer to her home. He advised her to discontinue domperidone and recommended her domperidone injections. botox To pylorus, a valve that opens and closes during digestion. Botox should allow food to pass through the small intestine more quickly. The treatment described as Widely used but of questionable effectiveness He told her it might help.
Gellert said she felt better immediately after the outpatient procedure. But the next morning she woke up in pain “worse than labor pains.” After a few days, her stomach pain was much relieved, but her diarrhea continued. Gellert added that she had Botox treatments at two-month intervals with similar results.
A fourth gastroenterologist was “very sympathetic and worked hard to figure out what the problem was,” Gellert said. After scans showed her GERD surgery had reversed, he offered her to have her re-operated, but Gellert flatly refused. I will not enter.’
So the cycle started. When the stomach pain became unbearable, Gellert said she called the clinic and made an appointment with one of her physician assistants to get help.
“I kept telling them this was debilitating,” she recalled. According to her, their reactions became less and less sympathetic. It was obvious they thought she was exaggerating. She said one PA sternly told her, “We’re doing the best we can,” and another reminded her that pain was to be expected with gastroparesis.
She had regular X-rays and CT scans, but they found nothing new or meaningful. Gellert said she did the best she could and was relieved that her employer understood her absence.
“It was really hard,” said Gellert, a single mother who works as an online tutor for a university. “I felt very sick and spent a lot of time in the bathroom.”
In 2018, a change in insurance resulted in Gellert seeing a new family doctor. She found him to be very empathetic. He seemed determined to figure out what was wrong.He wondered if her recurring symptoms were a cue diverticulitis, inflammation involving the lining of the digestive system, This has been excluded. By then, the vomiting had changed, he said, Gellert. He appeared to have no trigger. Occasionally awakened her from her deep sleep.
“It was so fast,” she said. “There was no running” to the bathroom. “I needed to be prepared,” so she barfed her bag.
Gellert was also plagued with new, seemingly unrelated problems. She had gone through her menopause years ago, when she developed hot flashes, unexplained hot flushes, and extreme fatigue. In late 2019, her primary care doctor sent her for yet another CT scan of her.
This time the results were different.
“I was really shocked,” Gellert said, remembering bursting into tears. “The idea that I might have cancer certainly crossed my mind,” she said, unable to understand why nearly six previous scans had found nothing. (She was later told that the size and location of the malignant tumor made it difficult to see on a conventional CT scan.)
PNET Formed in the hormone-producing cells of the pancreas, about 7 percent Pancreatic cancer; about 4,300 Americans will be diagnosed with such a tumor this year. PNETs kill Apple co-founder Steve Jobs and a singer Aretha Franklinboth lived about 8 years after diagnosis.
These tumors usually grow slowly, tend to grow rapidly, and have a much better prognosis than adenocarcinoma, which is usually discovered after metastasis. Treatment includes surgery and may include chemotherapy and hormone therapy, depending on the stage of the cancer. Most pNETs are nonfunctional and do not release hormones, but such tumors can grow before they are discovered and spread to the liver and lymph nodes, making them more dangerous and difficult to treat.
Gellert’s doctor sent her to an oncologist. Special PET/CT A scan known as a dot-vertical scan that confirmed the diagnosis.
“This scan is very specific for neuroendocrine tumors,” said the oncologist. Satya DasHe is affiliated with the Neuroendocrine Tumors Program at Vanderbilt University Ingram Cancer Center and specializes in treating patients with advanced gastrointestinal cancer. “If you just did a CT scan, you’d miss it.” Doctors said Gellert’s tumor was Functional gastrinoma, due in part to her flushing and hot flashes. Such tumors overproduce gastrin, a hormone involved in the production of stomach acid.
“Patients are sometimes told for seven or eight years that they have nothing wrong with them.”
— Satya Das, Oncologist
The average time from symptom onset to pNET diagnosis is about seven years, Das said. Both neuroendocrine tumorszebra– medical slang for a rare disease – and the “great mimic”, oncologists observed, because some conditions, such as diarrhea, have many causes.
“Patients are told for seven or eight years that nothing is wrong, and then they are sometimes diagnosed with metastatic cancer,” he said. In Gellert’s case, a specialized PET scan performed three to four years ago may have led to the diagnosis. Das said he suspects the severe acid reflux Gellert had for surgery in 2010 may have been caused by cancer, but it’s impossible to know.
“Small tumors sometimes cause severe and debilitating symptoms,” Das said.
Gellert said her oncologist presented her with two options. Surgery to remove the cancer or close observation since her tumor is small and difficult to operate. Gellert opted for surgery.
In March 2020 she distal pancreatectomy, Surgery to remove the tail and body of the pancreas.Gellert said she felt lucky: her cancer Grade 1, the most favorable prognosis; there was no metastasis to the liver or lymph nodes. Surgery was the only treatment needed. Gellert will be monitored for her 10 years because pNETs can recur.
But the surgery nearly killed her.Within days Gellert developed her pancreas leak As a result, abdominal abscesses, blood clots, severe sepsis, an overwhelming systemic infection with a high mortality rate. Her recovery took her six months, but she said, “I made it through.”
Although she developed the form of pancreatic insufficiency She had been warned before surgery — treatment would require lifelong enzyme replacement medication — and Gellert’s abdominal pain had disappeared. Her diarrhea and vomiting were occasional, manageable and no longer dominated her life. there is no.
“I feel so much better than I used to,” she said.
The fact that her small tumor made her sick was a boon, Gellert said, because “it kept me looking”. I feel incredibly lucky to have found this, but I hope the doctors thought her intractable symptoms could be the result of “zebras.”
“I don’t know if there was more I could have done. I pushed my doctor pretty hard,” she said. “Finding a doctor determined to get to the root cause of the problem is very important.”
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