“I was a nurse for 39 years,” she says, “but that didn’t help me figure this out at all.”
Mrs. C has been haunted by debilitating symptoms for more than a decade — since her mid-50s, she says. She’s been seen by several doctors and has wracked her own brain for answers, considering various exposures, angles, and ailments.
Mrs. C is a lively, resilient, and adventurous woman. “My husband’s job often required him to travel,” she says. “We were chaperones along with another couple for a group of 20 teenagers on a trip to Haiti. The other lady had severe dysentery while there. She thought it was from eating salad containing unwashed lettuce. She’s the one where I first heard the expression about passing ‘cut glass’ with diarrhea. That’s how I’d describe my episodes as well.”
For more than a decade, Mrs. C has had random, intermittent, and worsening episodes of diarrhea.
“There’s no warning,” she says. The episodes occur completely out of the blue, with no preceding cramps, nausea, or vomiting. She never passes blood or has much gurgling or indigestion. What she eats doesn’t seem to matter. “Theworst part was it became a social problem.” Always on the move, Mrs. C describes her numerous responsibilities — a part-time nurse, a mother of three, a church-goer and volunteer. “I was very active,” she says, “and now I had to bring extra sets of clothes wherever I went, and heavy pads in case there was an accident. Things were horrible whenever I had to travel or fly.”
Things became almost unbearable within the last year. She lost more than 30 pounds, with no appetite. “And I started having these episodes at night — sometimes I was on the toilet for more than an hour. It felt just like that lady in Haiti had said — like passing cut glass.” While she was sitting there on the toilet, there was only one thing that kept circling in her mind. “This is no way to live,” she thought.
Mrs. C had thought about getting evaluated several years earlier, when her symptoms had gone on for so long. Unfortunately, she was diagnosed with breast cancer, which required a mastectomy, chemotherapy, and radiation. “It took a year to get myself back together after that,” she says, explaining that she sort of let her gastrointestinal symptoms go over that period. But in the past year, as her symptoms got increasingly disruptive, she needed to find an answer.
At the gastroenterologist’s office, she awaited the results of several tests. One of them was an endoscopy (see results at right). Her mind reeled with the possibilities. She thought back to her travel experiences: “We were very careful about what we ate [in Haiti] even to the point of refusing Coca-Cola that had been poured into glasses in the Haitian homes we visited.” She remembered her trip to China and Inner Mongolia. “I was in China in 1990, before the symptoms had started. I had eaten several things from the street vendors — none of which I liked — and by the time we returned to Beijing, I’d lost seven pounds. But I don’t recall worrying about any one particular incident,” she says. That trip to China, she points out, was the trip closest to the onset of her symptoms.
Last year, her gastroenterologist started her on several antibiotics, none of which worked. All the tests for infectious diseases returned negative. She was treated with Asacol, a medication used for inflammatory bowel disease — with no effect. She tried yogurts, probiotic capsules. Nothing helped — in fact, over the last few months, things just kept getting worse. Finally, for the first time, her doctor had a breakthrough. The gastroenterologist ordered a single test that led Mrs. C to experience severe stomach pain, burning, and gas. Fortunately, the same test also pointed to the answer to a decade-long mystery.
Diarrhea needs to last more than four weeks before it can be considered chronic. Mrs. C more than meets the definition — she’s had diarrhea for probably more than a decade. In developed countries such as the United States, people who have diarrhea off and on over a long period of time often suffer from irritable bowel syndrome (IBS), a disease that leads to an overactive and sensitive gut thatmay squeeze more often than it should. However, what raised flags for Mrs. C’s gastroenterologist, Dr. Jacqueline Wolf at Beth Israel Deaconess Medical Center, was that these episodes started affecting her at night. Because stress is thought to be related to IBS, patients with this condition rarely present with diarrhea at night, when stress levels drop.
“When someone has unexplained chronic diarrhea,” Dr. Wolf says, “or diarrhea occuring in the middle of the night, one has to think beyond irritable bowel syndrome.” Colonoscopy and endoscopy results can showchanges in the gut wall. But Dr. Wolf did not see striking changes, ruling out inflammatory bowel disease, an autoimmune disorder. She tested for celiac disease, lactose intolerance, and chronic infections — including parasites she could have picked up in China or Haiti — but every test came back negative. With Mrs. C losing weight and with no end to her diarrhea in sight, Dr.Wolf became increasingly frustrated.
On a hunch, Dr. Wolf ordered a test of the gastrin level in her blood. The hormone gastrin is a fascinating protein, released by the stomach during a meal to stimulate the production of stomach acid to help digest the food that is on its way down the esophagus. In response togastrin, we make almost 3 liters of stomach acid per day. That’s a lot of fluid. Mrs. C’s gastrin level was abnormally high, meaning she was telling her stomach to make volumes of stomach acid that passed out of her body as diarrhea.
But why was Mrs. C’s gastrin level high? Dr. Wolf suspected the Zollinger-Ellison syndrome, a disease that refers to a tumor in the gut that produces abnormally high levels of gastrin. To confirm her thinking, Dr. Wolf administered secretin, another hormone, which would nudge a tumor to makemore gastrin. In response to the secretin, Mrs. C’s gastrin levels multiplied almost 20 times, confirming that she did indeed have a tumor, hidden somewhere in her gut.
Following a series of scans, Mrs. C went to surgery, so doctors could hunt for the hidden cancer. Her surgeon found a mass in the duodenum, the part of the gut that receives food from the stomach. Not only that, the surgeon found the tumor had metastasized to the liver. Dr. Wolf was right — the pathology from the surgery confirmed that Mrs. C had Zollinger-Ellison syndrome.
Since undergoing surgery and starting medications that shrink the tumor, Mrs. C’s diarrhea is almost gone. She no longer needs to worry about having accidents.
Now, Mrs. C is back on her feet again. In fact, she has already planned a cruise on the European seas with her husband this summer; she can’t wait to set sail.