My decade-long struggle began with a tiny piece of popcorn hull stuck under my gum, which led to a visit to the dentist and an antibiotic, prescribed just in case that persistent irritation behind a tooth was an infection. The antibiotic, clindamycin, cleared my gut of healthy microbes to make way for a dangerous outbreak of Clostridioides (formerly Clostridium) difficile, leaving me with severe diarrhea that nearly killed me.
I suffered at home alone for more than three weeks, feeling so weak and confused that I did not understand that I was seriously ill. I was on a seasonal break from work, but my boss happened to call, realized I was in deep trouble, and got me to a doctor. Months of failed treatments followed. I was weak and felt isolated and terrified of making others sick. Finally, I received a fecal microbial transplant, which resolved the C. difficile, but more than 10 years later, my gut is still constantly inflamed, and I am still working to re-learn to eat foods less bland than bananas, rice, and toast.
As devastating as this illness has been for me, C. difficile infections can be even worse, leading to septic shock, kidney failure, bowel perforation or death. It’s not just a gastrointestinal infection. It impacts the quality of life and overall well-being of anyone affected for many months, years or even the rest of their life.
C. difficile used to be thought of as a hospital-associated illness, but, more and more often, cases like mine occur outside the hospital after a course of antibiotics. In the U.S., there are 170,000 cases a year outside hospitals, and that number is growing.
Even though it’s reaching epidemic proportions, public awareness and even health care provider awareness is low. People remain oblivious to the relationship between C. difficile infection and inappropriate antibiotic use – using antibiotics when they won’t help or failing to choose the most targeted antibiotic for the condition being treated.
Looking back, I wish I had known more about C. difficile when I first fell ill. I wish my dentist had alerted me to the possibility that the antibiotic prescribed could lead to a C. difficile infection and told me about the symptoms to look for in the following days. Initially I thought the extreme diarrhea was just a stomach bug. Had I known that it could be a side effect of the antibiotics, I could have received treatment much sooner before my body became overwhelmed by the infection.
People don’t question antibiotic prescriptions, and they often ask for them when they may not need them. We follow what we’ve been taught for generations – to dutifully finish any antibiotic prescription we start. As patients, we should ask questions and engage our providers in a discussion about the pros and cons of antibiotics and how to use them safely and effectively.
My experience led me to be active in supporting other patients and serving as a patient advocate for the Peggy Lillis Foundation, a national non-profit aimed at raising awareness and shaping policy around C. difficile. We partner with the Society for Healthcare Epidemiology of America, which promotes antibiotic stewardship among health care providers and shares our goals of making sure C. difficile infections are tracked and new treatments are developed.
Since C. difficile is not a notifiable illness that requires mandatory reporting in all 50 states to the Centers for Disease Control and Prevention (CDC), the impact it is having on people’s lives tends to not get the attention it deserves. Patients and their loved ones can’t routinely research settings like hospitals and long-term care facilities to determine current and historic rates of infection when making a decision about where to receive care. There should be more transparency for patients.
Treatment options for C. difficile are limited. Congress should encourage investment in the development of new antibiotics to combat infections like C. difficile. With the rise of antibiotic resistance, it is essential to build the pipeline to improve treatment options. The Pioneering Antimicrobial Subscriptions To End Upsurging Resistance (or PASTEUR) Act would establish a subscription-style model to provide antibiotic developers an upfront payment in exchange for future access to their treatments.
My experience with C. difficile taught me more about antibiotics and the health care system than I ever expected. As an informed and engaged patient, I now know how to navigate the complexities and share that information with others. Antibiotics are one of the greatest medical breakthroughs of our time, yet, to paraphrase the superhero Spider-Man, the great power of antibiotics must be used with great responsibility.
Carol Raye is a patient advocate.