“You need to go back to the hospital,” the visiting nurse declared shortly after entering the 68-year-old woman’s bedroom. The patient’s hair was matted, her face pale and dotted with sweat. She moaned softly as she shifted in the bed, the tangled sheets a testament to her search for a comfortable position.
The woman knew the nurse was right. The terrible pain in her gut started a week earlier, and she had already been to the emergency room twice, even though the pandemic had recently invaded her suburban Long Island town. She had to go back; something was horribly wrong with her.
On her first visit, the E.R. was crowded with people in masks. When she was finally examined, the doctor offered reassurance and sent her home with a recommendation to follow up with her gastrointestinal doctor. But she couldn’t follow up with anyone — she could barely get out of bed. She called her son in California and begged him to come help his father take care of her.
Before her son could get there, she was back in the E.R. This time she was admitted. Her blood tests and CT scan were normal, but an endoscopy suggested that she had gastritis, an inflammation of the stomach lining. She was prescribed a strong antacid, a medication to coat her stomach and another to increase her gastrointestinal motility. The woman was dubious. She’d had gastritis before; that pain was different and certainly not this severe.
Her son arrived the day she was discharged from that hospital stay. He was shocked when he saw his mother being wheeled out. She was so thin, so pale and so very weak. It took both him and his father to support her into the car, then into the house.
The medications didn’t help. The woman spent four days at home in bed in pain. She couldn’t eat and could barely drink. And then the nurse came and sent her back to the E.R. a third time.
Worrying Scan Results
This time, her husband drove her to a different hospital. She knew she looked a mess — hair unbrushed, face unwashed, still in her pajamas — but she was beyond caring. The 10-minute drive to NYU-Langone Hospital — Long Island in Mineola was agony. Every little bump knifed through her gut. Her husband helped her into triage, and she was seen almost immediately.
A young woman, a physician assistant, was in charge of her care in the E.R. She listened as the patient described the stabbing pain that never left and got so much worse when she moved or ate. She’d vomited a little. Had some diarrhea. And her legs were weak. The P.A. examined the patient gently. The woman groaned when she felt the stethoscope press into her belly. They took her blood and her urine. She was given medication for the pain.
This time, the test results were abnormal. Her white-blood-cell count was elevated — which could indicate infection but could also be caused by the stress of her illness. The normal chemicals in her blood were out of whack, probably because she hadn’t been eating. But it was the CT scan of her abdomen that made the P.A. and then the E.R. doctors reluctant to send her home. For years, the woman had suffered with extensive osteoarthritis in her joints, and doctors had recently implanted a spinal-cord stimulator in her abdomen to help manage those aches. The stimulator and battery were visible on the CT scan, their metal casings radiating white amid the gray of the images, obscuring the surrounding tissues. But instead of dampening her chronic pain, the device caused a burning, buzzing pain bad enough that she’d turned it off. Could that device somehow be the cause of her symptoms?
But there was something else: The radiologist noted that one part of the blood vessel taking oxygenated blood from the aorta to the intestines, the mesenteric artery, looked strange: The walls were thicker than normal, and the interior wall was lumpy and narrowed. Was this atherosclerotic disease, the so-called hardening of the arteries, where plaques of fat and cholesterol build up inside blood-vessel walls? She was in her late 60s, after all.
A Stream of Doctors
The neurosurgical P.A. who came to assess the spinal-cord stimulator was dismissive. The hardware was tucked between the skin and the muscle wall, not inside the abdominal cavity where the pain was.
That P.A. was followed by a stream of doctors. The general-surgery team came by, pressed on her belly and moved on, unimpressed. The vascular surgeon arrived to tell her she needed medication and not an operation. The internal-medicine team visited briefly to let her know they would be coordinating her care.
It wasn’t until the following morning that the patient met a doctor who stayed to ask questions and provide some answers. Dr. David Yaich was the rheumatology fellow and had been asked to see her because of the possibility her symptoms were signs of an autoimmune disease.
Yaich asked to hear her story and then examined her carefully. Her legs were weak, and moving them was quite painful. The rheumatologist suspected that had more to do with her osteoarthritis than this new issue, but he had to make sure. Blood tests showed that the woman’s markers of inflammation were high. Given that and the strange appearance of her blood vessels on the CT scan, it seemed she might have another, less common cause of thickening and irregularities in the vessel walls: vasculitis, an inflammation of the arteries.
Vasculitis would explain her belly pain. Eating and drinking require increased blood flow to the digestive tract, and the narrowed, inflamed vessels caused by vasculitis would reduce that flow, resulting in pain and damage to the intestinal walls. Yaich checked for rashes and tender bruiselike nodules on her legs, often seen in one of the deadliest forms of vasculitis, called polyarteritis nodosa. There weren’t any. But other forms of the condition could be more subtle, and Yaich still suspected that the patient had vasculitis. His job, he explained to her, was to look for the cause of the inflammation and see if any other vessels were involved. They would have to get imaging of her brain, neck and chest. And they would check her blood for signs of autoimmune diseases known to cause mesenteric vasculitis.
No matter the cause, vasculitis is a dangerous disease and, if untreated, often fatal. The usual treatment was high-dose steroids. But the patient had osteoporosis, a thinning of the bones that could cause devastating fractures, and high doses of these medicines can cause bone loss over time, so Yaich had to be certain that steroids were worth the risk. The follow-up scans showed terrible arthritis, most likely explaining the weakness in her legs. There were no areas of vascular inflammation beyond the one in her mesenteric artery, and the blood tests looking for other causes of vasculitis were unrevealing. This was unusual, but Yaich figured that vasculitis was still the most likely cause of the woman’s pain. But they would only know for sure if her pain disappeared after the first couple of doses of steroids.
And so, on the third day of her third hospital visit, the patient was started on intravenous high-dose steroids. Almost immediately, her appetite came back. More important, she could eat without the terrible spasms of pain that had been a constant companion for nearly two weeks. Once she was able to eat, she was eager to go home.
But once she was home, the pain and weakness in her legs persisted. Additional testing confirmed that she had severe osteoarthritis in her hips, and a few months later, hip-replacement surgery helped with that pain. Despite the extensive testing, the cause of her vasculitis was never identified. The high doses of steroids were slowly lowered over the next nine months. She was warned that the vasculitis could come back — that it often did. But that was four years ago, and she has had no hint of a recurrence. She still has lots of aches and pains, of course. Her osteoarthritis continues to make her active life a symphony of discomfort at times. But the memory of that terrible belly pain helps her keep those old familiar aches in perspective.
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