C. diff no longer just a hospital superbug

Susan Gottlieb recalls being wracked with unspeakable pain.

Donna Gerek talks about the loneliness of a hospital isolation unit.

And David Gould says he was considered a Typhoid Mary when fellow emergency room patients accurately guessed why he was there.

All three Long Islanders had contracted Clostridium difficile -- C. diff -- a bacterial infection that has been increasing in health care facilities even as other hospital-related infections have declined.

About 14,000 people die annually in the United States from C. diff, and its presence increasingly is marked by a hypervirulent strain.

"I can't begin to explain the pain it causes," Gottlieb said of the infectious organism that leads to raging fevers, severe abdominal cramping and diarrhea.

"It's violent pain. They had me on Dilaudid because of the pain," said Gottlieb, 61, referring to the potent narcotic painkiller. "I was crying out because it was so painful."

While Gottlieb, of Smithtown, believes she was infected with C. diff while hospitalized last November, her physician, Dr. Donna Lesser, doesn't think so.

The bacteria can be anywhere, said Lesser, adding that infections are no longer limited to exposures in hospitals.

"In recent years, several continents, including North America and Europe, have seen dramatic outbreaks with increased frequency," said Lesser, a Smithtown infectious disease specialist.

Newly published federal data concur with Lesser. C. diff is no longer just a hospital-associated microbe but one that can be found in any kind of facility where medical care is administered. But hospitals, experts say, remain a major source of infection.

The microbe is an ancient bacterium capable of forming a so-called spore characterized by a waterproof, heat-resistant, protein wall that guards its genes like armor.

That wall allows C. diff to persist for months on environmental surfaces, said Dr. Clifford McDonald of the Centers for Disease Control and Prevention.

Almost half of all infections occur in people younger than 65, the CDC found, but more than 90 percent of deaths occur in those 65 and older.

McDonald, author of the new CDC report, characterizes the microbe as a major public health threat.

"C. diff is a formidable opponent that is causing people to suffer and die," said McDonald.

The microbe is so pervasive that all of the 177 hospitals -- including 23 on Long Island -- submitting data to the New York State Health Department reported cases. "C. diff is very common in hospitals," department spokesman Jeffrey Hammond said.

State health authorities said they are aware of C. diff's marked prevalence in nursing homes and other health care facilities, but they officially tabulate its presence only in hospitals, where more than 16,000 cases were tallied, based on 2010 reporting data, the most recent statistics available.

New York differentiates C. diff cases between those brought into a hospital by a patient and those contracted by patients in the reporting facility.

New York is the only state in the country that collects C. diff data; all others base prevalence on estimates. Updated New York C. diff data is expected later this year. New York, Hammond said, does not collect statistics on C. diff-related deaths.

The CDC's mortality figure -- 14,000 deaths -- comes from analyses of death certificates.

A growing threat

The number of deaths from 2000 to 2007 increased by 400 percent and is continuing to rise, CDC experts say.

In addition, between 2000 and 2009, the number of C. diff diagnoses more than doubled, according to the CDC, from 139,000 cases to 337,000.

The microbe's prevalence has reached unprecedented levels worldwide, McDonald and other experts say, driven largely by imprudent antibiotic prescribing practices and ineffective cleaning in medical care facilities.

C. diff spreads as a direct result of improper toileting hygiene among infected patients. Health care personnel, who constantly touch patients, can transfer the invisible spores from one patient to the next.

Once spores are in an environment, they are further spread through ordinary human activity.

Many people become infected, McDonald noted, when they touch contaminated surfaces then touch their mouths, swallowing the spores.

Virtually everyone who becomes infected has two things in common: recent antibiotic use and treatment in a health care facility.

Antibiotics can destroy normal bacterial populations in the large intestine; undergoing care in a contaminated medical facility allows exposure to the spores.

Gottlieb said she had been prescribed an antibiotic as part of her treatment for diverticulitis, an inflammatory digestive tract disorder. Her medication advice changed, Gottlieb said, when C. diff was diagnosed.

"They told me to stop taking the antibiotic because it was making the situation worse," she said.

Her husband, Ed Gottlieb, a dentist familiar with techniques to prevent infection, said he became his wife's advocate when she had to be hospitalized to treat the infection.

"I personally scrubbed down her room with Clorox wipes. The place smelled of bleach," he said.

Other Long Islanders who've contracted C. diff also report a pattern of antibiotic use and medical treatment.

Gerek, 56, of West Islip is repeatedly on antibiotics for hypogammaglobulinemia, a rare immune deficiency disorder. She was infected with C. diff last fall.

A registered nurse, Gerek noted that because she so frequently undergoes medical care, she's uncertain where she might have come in contact with the spores.

"I have no idea," said Gerek, who estimates being hospitalized at least 40 times in various Long Island hospitals during the past five years.

When hospitalized for C. diff, Gerek said she was put in an isolation unit where she had ample time to contemplate problems with hygiene.

"I was astounded how many doctors and nurses came into an isolation unit without washing their hands," said Gerek who brings along a personal hygiene kit to clean surfaces when hospitalized.

Shunned by patients

Gould, 65, an attorney who lives in Port Washington, said he developed C. diff in 2010 after being on antibiotics following removal of a small basal-cell skin cancer.

As a consequence, he spent nearly two weeks in isolation at North Shore University Hospital in Manhasset.

Gould said he arrived at the hospital's emergency department dehydrated, having waited days before seeking medical care.

When a nurse discovered he had used restrooms in the ER, Gould said he was barred from leaving the examination area and given a personal commode. A fellow ER patient, also waiting to see a physician, told Gould he probably had C. diff, which doctors later confirmed.

During his frequent rest-room trips, Gould said he had chatted with other patients thinking he was making friends. But they became distraught when they heard the words C. diff, he said.

"And just like that, I went from the Belle of the Ball to Typhoid Mary," he said.

In most cases, C. diff is effectively treated with the powerful antibiotic vancomycin. The CDC estimates the cost to cure a patient runs anywhere from $5,000 to $ 7,000.

Answer is in hygiene

McDonald said the enormous costs in lives and medical care could be avoided if health care workers simply washed their hands -- and facilities stepped up efforts to keep surfaces clean.

In the spore phase, C. diff resists numerous disinfectants -- but succumbs to bleach, said McDonald who is calling on hospitals, nursing homes and other stakeholders in patient safety to heed stringent hygiene practices.

"When it is not in the spore form it dies quickly," McDonald said. "In the spore form it can persist for months, possibly longer."

Alcohol-based hand sanitizers, he said, do not kill C. diff spores. Hand-washing with soap and water and sterilizing surfaces with a bleach solution, McDonald said, minimize infection.

The CDC estimates C. diff costs the nation about $1 billion annually.

Starting next year, McDonald said, hospitals nationwide will have to report rates of C. diff both as a measure of a facility's cleanliness and as a basis for reimbursement for Medicare and Medicaid patients.

"Patient safety is something we're really emphasizing," McDonald said, adding that health care facilities will have to relearn what cleanliness means with an emphasis on strict hand-washing and cleaning surfaces, he said. "Just because something looks clean doesn't mean it's really clean," he said

About C. diff.

-- C. difficile infections are linked to 14,000 U.S. deaths annually.

-- Between 2000 and 2007, deaths linked to C. difficile increased 400 percent.

-- Almost half of infections occur in people younger than 65, but more than 90 percent of deaths occur in people 65 and older.

SOURCE: Centers for Disease Control and Prevention