Janice Rohlf wasn’t easily fazed, displaying the indomitability of someone who grew up “dirt poor” in a house without running water, then went on to earn two graduate degrees and build a prosperous career. But for more than 40 years, she lived with an emotionally taxing condition, worried that something she ate might trigger a sudden digestive upset.
“I always had to be prepared,” said Rohlf, 73, former head of government relations at the State University of New York at Stony Brook. “It’s something that’s constantly on your mind — you’re always on alert.” For Rohlf, that meant scoping out the closest bathroom and avoiding a growing list of common foods — including lettuce, mushrooms and cheese — that seemed to trigger near-daily attacks of diarrhea.
What it did not mean, said Rohlf, now retired and dividing her time between homes on Long Island and Maui, was staying close to home. Determined not to let her gut rule her life, she regularly traveled abroad, including twice to Africa and once to India — the latter with predictable results for someone with a finicky gastrointestinal tract. Her husband, an academic biostatistician, was often invited to international meetings, and he wanted her to travel with him. “I have the most patient husband,” she said, adding that he was sympathetic to her difficulty.
For years, Rohlf said, she was told she had irritable bowel syndrome, a catchall diagnosis for digestive problems. It was only in the past 18 months, when a new gastroenterologist took a closer look at her case, that Rohlf received a different diagnosis and treatment that enabled her to tame the attacks.
“It’s been amazing,” she said. “I had forgotten what it was like not to have to worry about this” all the time.
Rohlf said she never had GI problems until her second pregnancy in 1967, when milk and milk products caused diarrhea. After her son was born, the problem disappeared. Because she was planning to have another child, Rohlf said, she asked her doctor for advice; he suggested a hospital stay to conduct tests for lactose intolerance, an inability to digest lactose found in milk and other foods. She underwent the three-day testing in 1970, but it failed to find a problem.
Two years later, while pregnant with her third child, the episodes of violent diarrhea recurred. But this time it didn’t disappear when the baby was born and seemed to be triggered by more foods, including broccoli, Brussels sprouts and one of her favorites — sauerkraut.
“I just learned to avoid those things,” Rohlf said, but it became increasingly difficult to tell what would trigger an attack. Sometimes she could eat a food with no problem; at other times the same thing would send her running to the bathroom soon after she ate.
In 1985, Rohlf consulted the first of several gastroenterologists. He performed an endoscopy, a test involving an instrument with a tiny camera that inspects the gastrointestinal tract for abnormalities such as blockages and growths; it found nothing. Later that year, Rohlf said, she suffered a bout of both vomiting and diarrhea so severe that she had to be hospitalized for a week. A test revealed gallstones — small deposits containing cholesterol and bile. A doctor who treated her in the hospital recommended that her gallbladder be removed.
Leery of surgery, Rohlf made an appointment several weeks later with a prominent Manhattan gastroenterologist who had treated a friend. The specialist told Rohlf she didn’t need gallbladder surgery; gallstones are common, and there was no evidence that her illness was gallbladder-related. He suspected the cause of her hospitalization had been a bacterial infection, probably shigella from tainted shellfish, not gallstones.
At the time, Rohlf had more immediate concerns. A few years earlier, while she was in the throes of a divorce from her first husband, she had been diagnosed with psoriatric arthritis, a serious autoimmune disorder that involves both psoriasis, a scaly skin condition, and joint-destroying arthritis. “My arthritis was frankly a bigger concern,” she said. “I was pretty crippled by it.” Doctors were using various combinations of powerful drugs to try to control it.
Through vigilance and trial and error, Rohlf said, she managed her gut problem and, after she remarried, was able to function well enough to travel with precautions. “I lived with it for years, but you get to a point where you think, ‘This is just ridiculous’. ”
By 2013, Rohlf was fed up: She loved to cook and give dinner parties, and felt increasingly hamstrung by the unpredictable nature of her condition, which doctors seemed at a loss to treat. Over the years testing had ruled out various maladies including problems with her colon and celiac disease, a genetic inability to digest gluten, a substance present in wheat.
A year earlier on a two-week trip to India, where she mostly lived on rice and bread, Rohlf had eaten some fresh vegetables she had thought had been prepared safely at a farewell dinner. She came home with a roaring intestinal infection that required a course of antibiotics. In previous years she had been beset by attacks of diarrhea in Vienna, Rome and Paris, where water quality isn’t an issue.
Rohlf asked a hospital executive friend for the name of an institution specializing in GI problems. He suggested the Mount Sinai Hospital in Manhattan. Rohlf was referred to a recently hired gastroenterologist, Gina Sam, a specialist in motility disorders, problems that occur as food passes through the digestive tract.
Rohlf first saw Sam in April 2013. Reviewing her history, Sam was struck by the fact that Rohlf’s symptoms did not fit the diagnosis of irritable bowel syndrome or ulcerative colitis, a serious, chronic disease caused by inflammation of the large intestine. In both disorders, pain is a prominent feature. Rohlf had no pain.
“At that point I suspected microscopic colitis,” said Sam, director of the motility center at Mount Sinai. Less serious than ulcerative colitis, the microscopic form can cause diarrhea and cramping; it is detected by inspecting cells under a microscope and typically requires a colonoscopy.
But Sam found no sign of microscopic colitis and turned her attention to a second possibility: small intestinal bacterial overgrowth, or SIBO.
The condition has received new attention as gastroenterologists have focused on the importance of the microbiome, the stew of bacteria and other microorganisms that comprises the gut’s ecosystem and is affected by diet. The function of the small intestine — to absorb and digest food — can be disrupted by an overgrowth of bacteria that feed on carbohydrates in foods containing high fructose corn syrup, the lactose in dairy products and the fiber in green vegetables; the result can be diarrhea, bloating and, in severe cases, nutritional deficiencies and even malnutrition.
The disorder has several causes, among them diabetes and other autoimmune disorders, and abdominal surgery, especially weight-loss operations such as gastric bypass. The problem can also be triggered by antibiotics, because the drugs alter the natural flora of the intestinal tract, Sam said.
“We’re not always sure why people develop it,” she added, “but it’s a diagnosis you have to treat” to avoid nutritional deficiencies.
Sam recommended that Rohlf undergo a breath test to measure hydrogen and methane in the digestive system. Patients drink a solution containing sugar and lactose, then breathe at regular intervals into a machine. Elevated levels of one or both indicate that fermentation is occurring in the small intestine, a sign of bacterial overgrowth.
Rohlf underwent the test on April 26; it revealed that while her methane levels were normal, her hydrogen levels were extremely elevated. That finding confirmed Sam’s suspicion that a bacterial overgrowth might be causing her diarrhea.
Sam prescribed a two-week course of rifaximin, an antibiotic not absorbed by the body that kills excess bacteria. “Once you treat it, some patients have a remarkable result, because they’ve been going to the bathroom 14 times a day,” Sam said. About 40 percent of patients respond to this initial treatment, but the condition can recur.
On a return visit a month later, Rohlf reported dramatic improvement. Her diarrhea had diminished to fewer than one episode a week.
“It was amazing,” Rohlf said. The new regimen enabled her to do something she had rarely attempted: Take a walk after dinner.
Since then she has had several recurrences — one severe enough to require a second course of the drug — but none as serious as previous attacks.
Recently, with the help of a nutritionist at Mount Sinai she has embarked on a special diet designed to eliminate high fructose corn syrup and lactose, to which, it turns out, she is intolerant; these are among the substances that cause bacterial overgrowth and trigger diarrhea.
“I think she has a good prognosis as long as she stays away from antibiotics” and on a diet that eliminates lactose and other problematic ingredients, Sam said.
Rohlf said that she is thrilled by her progress and happy to have a definitive explanation for her problem, even though it took decades. “So far, so good,” she said. “It’s such a relief not to have this constantly on my mind.”