Patient Perspective: Everything I Wasn’t Told About CDI

Key Takeaways

• Patients with Clostridioides difficile infection may not receive appropriate education about the disease, how to prevent its spread, available treatment options, or strategies to reduce the risk of recurrent infection.
• Healthcare professionals should fully educate patients, take the time to listen to their questions and concerns, and work together with them to develop treatment plans.

My Story
My initial diagnosis of Clostridioides difficile infection (CDI) was in the summer of 2017 after receiving an antibiotic during an extended recovery from spine surgery. CDI recurred 3 times, and I was hospitalized each time for sepsis, including several ICU admissions.

During my second recurrence, I received a fecal microbiota transplantation (FMT) from my husband, but within 10 days I was back in the emergency room with sepsis and spent 10 days in the ICU. When CDI recurred a third time, I was finally referred to an infectious disease doctor, who administered a monoclonal antibody, and CDI finally stopped recurring.

CDI Burden
The burden CDI has had on my quality of life is enormous. It completely changed my life. My digestive system has changed with CDI. I can’t eat a lot of the foods that I used to. This is something I was left to discover and learn on my own. My symptoms mimicked that of CDI, and you can imagine the mental toll that took on me.

I deal with an ongoing battle with anxiety and have spent countless hours in therapy coping with posttraumatic stress disorder. The symptoms of postsepsis syndrome left me baffled, and when I discussed this with healthcare professionals, I often was not taken seriously. It made me feel as if I were crazy. My symptoms included chronic fatigue and lethargy, poor appetite, flashbacks, depression, and decreased cognitive functioning. It wasn’t until someone took the time to listen to me that postsepsis syndrome was explained as an issue many people experience after sepsis and numerous stays in the ICU.

CDI also has taken a toll on my family. I thought my kids were too young to remember what happened, but I was wrong. My youngest child developed anxieties, and the older she gets, the more they show. Anytime that I’m ill, her anxieties come out. My oldest child bottled everything up and only recently started discussing it.

Everything I Wasn’t Told About CDI
When I had CDI, nobody told me what C difficile was, how to care for myself, how to prevent its spread to other people, or how to clean. The worst was that no one ever told me there was a risk of CDI recurring, let alone ways I could try to reduce that risk.

I found out that CDI recurs when I saw an infectious disease doctor, and even then, I was told only the likelihood of another recurrence. I was never told how to prevent a recurrence, which feeds my fears about taking antibiotics.

I only learned how to reduce my risk of recurrence by rebuilding the microbiome in my gut through the Peggy Lillis Foundation and talking to other survivors of CDI. No physician has ever discussed recurrence prevention with me. I don’t believe it’s the patient’s responsibility to find this information out on their own. It’s not okay that we aren’t told how to prevent its spread to family members and loved ones. More needs to be shared with patients with CDI from the onset of infection, through every step of the illness, and into the recovery phase.

What I’d Do Differently
Looking back, I wish I knew that I could speak up for myself and ask doctors questions. I know now that I am my best advocate.

I never knew it was okay to ask a doctor why they were prescribing something, what the purpose of a drug was, or what the side effects were. I always went along with what they recommended because they had training and knowledge.

The most important advice I have for patients struggling with CDI is to ask questions. Patients should be informed of every treatment option available and, together with their healthcare professional, make the best decision for themselves at that time.

When I went through CDI, I had no idea that anything like FMTs or a monoclonal antibody existed, or that you can do things like give an enema with one drug and orally give another. Patients don’t realize that these options exist. Yes, maybe the first round of doctors can’t give these comedications, but all the options need to be laid out for patients with recurrent disease. If I had known there were options other than taking the same drug 2 or 3 times, maybe I wouldn’t have had sepsis 3 times. It’s a big “what if,” but it could have saved me and my family a lot of heartache.

What Healthcare Professionals Should Know
Healthcare professionals need to take a step back and seriously look at each patient when making decisions. Our lives are in your hands, and we are looking to you to guide us. We want our thoughts and concerns to be heard. Take a minute to actually see us—see who we are, see our pain, and realize that we deserve to know our options.

When we slip through the cracks and feel like our opinions don’t matter, we don’t say anything. Our opinions do matter. We are the ones who live in these bodies, feel the pain and illness, and have to will ourselves to fight through another day.

As you present a patient’s options, work together to make decisions rather than saying, “Here is your option—this is how it’s going to be.” Patients need to have a say in their care and need to know what’s happening. They need education at every step—from onset of CDI to the end—including information on how to prevent future recurrences.

Learn More
To learn more about the importance of incorporating the patient’s voice in clinical decision-making and hear expert faculty discuss strategies to reduce CDI recurrence, join our live, virtual symposia.

Missed the event? Check out the on-demand video.

Your Thoughts?
How do you educate your patients about the risk of CDI recurrence? Join the discussion by posting a comment.