How to Prevent and Survive C. diff Infections

Before Peggy Lillis died from a Clostridioides difficile (C. diff) infection in 2010, she had no way of knowing that her death would be the inspiration for a foundation bearing her name.

Peggy, a 56-year-old kindergarten teacher from Brooklyn, New York, had had a root canal and her dentist prescribed clindamycin for a suspected abscess. She started having diarrhea almost immediately after starting the medication but she didn't connect it with the antibiotic, instead suspecting that she caught a virus from a student. As a result, she delayed seeing a doctor. Peggy died six days later from a C. diff infection.

"The first time I heard of C. diff was in the emergency room when the ER [doctor] told us that my mother had toxic megacolon caused by a life-threatening infection from something called C. diff," says Christian Lillis, Peggy's son and cofounder and CEO of the Peggy Lillis Foundation.

Lillis was familiar with health care. He'd spent years working in administrative roles and as a fundraiser, but he'd never heard of C. diff, an aggressive bacterial infection that affects about a half a million people every year in the United States, killing about 30,000.

Your gut is full of bacteria and other microbes, both good and bad. This is your intestinal microbiota, or flora. For about 5% of people in the community (more in health care settings), one of the bad bacteria in their gut is C. diff. This means they are colonized with C. diff, but it's not making them sick and it won't as long as nothing changes in their intestinal flora and the good bacteria keep the bad ones in check.

But if something happens to upset the balance, things can change quickly, as Carol Raye, a 66-year-old in Boise, Idaho, learned in 2012. Like Peggy, Raye took a course of clindamycin after having a root canal. What she didn't know was that 10 months earlier, she was colonized with C. diff when she had wrist surgery. The clindamycin from her dentist killed off some of the good bacteria in her gut, allowing the C. diff to spread and make her sick.

"I thought at first maybe I had the flu because I just felt fatigued, and then the diarrhea set in," Raye says. "And I didn't really read the instructions on the clindamycin that said if you get diarrhea, get medical help. I was confused, had head fog, was running to the bathroom frequently, and could barely even get to the kitchen to feed myself." Raye finally saw a doctor and was diagnosed with C. diff, something she'd never heard of before either.

Years ago, C. diff was an infection that mostly affected people in health care facilities. Outbreaks weren't uncommon because patients are already vulnerable to infections in general. Risk factors for C. diff include being older, being in a health care setting, and being ill or having a surgical procedure. Now though, over 40% of C. diff cases develop in the community and the rate is rising. People with an active C. diff infection can spread the bacteria, but so can those who are just colonized with it. The result is more people are getting sick.

C. diff spores are spread through feces, so someone with C. diff in their gut sheds C. diff spores when they go to the bathroom. If they don't wash their hands thoroughly with soap and water (alcohol-based hand cleansers aren't effective against C. diff), they can carry the spores on their hands and leave them on any surface they touch or in food they prepare.

Once the spores are on a surface, anyone who touches that surface can pick them up. Later, when they touch their mouth, food, or drink, they can become colonized. To make matters worse, the spores are very hardy and can live for months outside the body, even years. They're also difficult to clean off surfaces. Researchers found that even if you use a disinfectant wipe, that wipe can just spread the spores to other areas rather than get rid of them.

You wouldn't know if you're colonized as there aren't any signs or symptoms. The main symptom of an infection is diarrhea, but diarrhea is so common and has many causes, including food intolerances, viruses, medication side effects and more. So if you have diarrhea, how do you know it might be something more serious, like C. diff?

"The only historical clue would be that you've recently had some antibiotics, or perhaps you were recently in a hospital," says Charles C. J. Bailey, M.D., medical director of infection prevention at Providence St. Joseph Hospital Orange and Providence, Mission Hospital in Orange County, California. "Those are the two major factors for getting this infection and that should prompt the concern of the health care provider. They can run a specific [stool] test to see if you have the C. diff."

C. diff can start anytime you are taking antibiotics, but it can also happen up to three months after, which is why you should mention any antibiotic use within the past few months if you start having diarrhea.

Treating C. diff early is important. "The first is to stop whatever antibiotic caused it, if you're still on it," Bailey says. "If the symptoms don't stop, or are more severe, there are a number of antibiotic treatments that can be used on an outpatient basis." Oral vancomycin or fidaxomicin are usually the first ones and treatment could last several weeks for some people.

If your symptoms don't go away or worsen, contact your doctor again. You might need to be hospitalized. There, they can give other medications, like metronidazole (Flagyl), and IV fluids to keep you from becoming dehydrated, all while monitoring you for complications. A C. diff infection can cause life-threatening toxic megacolon or sepsis, which is what killed Peggy. "My mother's death certificate says that she died from toxic megacolon from disseminated intravascular coagulopathy, which is the outcome of sepsis," Lillis says.

Once you've had a C. diff infection, you're at higher risk of getting it again. So aside from taking care of yourself to reduce the risk of bacterial infections, it's very important that any time you do have an infection, your doctor knows about your C. diff history, Bailey advises.

Some antibiotics have a higher risk of causing C. diff, too. "In other words, if you have a urinary tract infection, or bacterial bronchitis or pneumonia, there are usually a number of antibiotics that could be chosen [that have a lower risk]. If a doctor knows somebody has a history of C. diff, they would choose one of the less risky antibiotics," Bailey says.

Repeat infections can be treated the same way as the first one, but if they keep recurring, your doctor might recommend a fecal microbiota transplant (FMT). It may sound like an odd kind of treatment, but it's quite effective in helping restore the intestinal flora. Raye had FMT after she had several rounds of vancomycin that didn't help. "It was tough before that," she says. "I was sick for six months before. I lost so much weight I was just skin and bones."

FMT involves transplanting healthy stool, obtained from screened donors, into your intestine. The stool is processed and administered by colonoscopy (a tube inserted through your rectum) or, less commonly, through an endoscopy (a tube inserted through your mouth or nose).  In 2023, the U.S. Food and Drug Administration approved the first fecal microbiota capsule product, Vowst, that can be taken by mouth. Patients can take daily it for three days, making treatment much easier.

Although Raye is better now, the illness left a toll on her. "I think most C. diff survivors have some level of PTSD afterwards," she says.  "That's probably the one thing that people don't really take seriously, the mental toll that it takes on you. And there's this weird level of fear and guilt that I had because I was infected for a period of time before I knew. I was using a public restroom at the grocery store and things like that."

You can't be guaranteed not to get C. diff, but there are some things you can do to lower your risk and the risk of spreading it to others if you have it.

• Discuss antibiotic use with your doctor or dentist to see if it’s really necessary.
• Don’t use someone else’s antibiotics because you think you have the same infection.
• Wash your hands well with soap and water after using the toilet, before preparing food and before consuming anything.
• If you have C. diff, if it’s possible, use a different bathroom from the rest of the household.
• If you are caring for someone with C. diff, wear disposable gloves while providing intimate care and wash your hands well after.
• Use a bleach-based cleanser to wash common surfaces if someone in your home has C. diff.

If you're worried at all, contact your health care provider as soon as possible. C. diff is a serious infection, but the sooner it's detected and treated, the greater the chances of successful treatment.