Navigating C. Diff During the COVID-19 Pandemic, The Impact of Antibiotic Usage and Surgeries

Erin Hunter, assistant editor for Pharmacy Times sits down with Jenny Feldman to discuss her experience with C. difficile (C. diff). Feldman notes how her experience was influenced by the COVID-19 pandemic, her surgical history, and antibiotics. Feldman also begins to detail her experience with a fecal microbiota transplant (FMT).

Jenny Feldman: Hi, my name is Jenny Feldman. I live in New York City, and I am a C. difficile (C. diff) survivor. I'm actually finishing up my master's in public health.

Pharmacy Times: I wanted to start this conversation with you walking through your experience of first being diagnosed with [C. diff].

Feldman: It's interesting, because we were in the middle of [the COVID-19 pandemic] when I first started having symptoms of C. diff, and I immediately thought [that] this was a COVID-19 symptom. I hadn't had COVID-19 yet. I had recently had some oral surgery—which was not uncommon for me—I have a long history of a lot of oral maxillofacial surgery, so it didn't even occur to me that this gastrointestinal (GI) [flare-up] was connected to my oral surgery, I immediately thought [it was] COVID-19. Everyone talked about having GI issues, and I had just recently received my first COVID-19 vaccination, so I thought this is an [adverse effect (AE)] of the vaccine, or I have COVID-19, and I didn't get my vaccine in time. So, I didn't think anything of it…that's not true, I thought this is horrible, this is painful, I have stomach cramps, but I wasn't having any diarrhea.

I live in New York City, as I said, with my daughter, and we were on lockdown, and she was being homeschooled…that was the mandate. So, she was sitting in the living room, I had set up…a temporary desk situation for her, and she was all day on Zoom with a bunch of kids sitting in their homes. And she heard…a thud in the bedroom and came running in, I was on the floor and she immediately called 911. She was only in middle school at the time, but all she knew was I had been complaining my stomach hurt, and so, she just called 911. They immediately just took me to the emergency room, and I was begging them not to because we were in the middle of [the pandemic] in New York City, and…in New York at that time, [the hospital] was like a mass grave. When I got there, they tested me for everything in the world, and they [asked me about my] symptoms, and I said diarrhea, and they kind of dismissed it. And I explained that, for me, that was really abnormal because I had a history of chronic pain, and at the time, I was on pain medication—opiates—which are known to constipate you. So, I not only wasn't going to the bathroom regularly, but this was crazy amount of going to the bathroom and I was pretty much living on the bathroom floor.

So, they tested me for everything, and the woman in the bed next to me was so [freaked out thinking I had COVID-19]…and my [COVID-19 test] was negative, so, she should have been more worried about what I did have. But that was the point, is that I didn't even know how dangerous what I ended up having was, but everyone in the hospital at the time was [saying], “Stay away from me, you could have COVID-19.” What happened was, they did a CT scan on my stomach, they ran blood, they took an EKG, they finally after all the thousands of dollars in tests they [asked me to] give [them] a stool sample. And I kind of looked at them, like, “That's the only thing I can definitely give you, whenever you need it, you know, just say the word!”

And then they came back, and they said [that I had C. diff] and they gave me some vancomycin, which is like the 1 antibiotic—and I've been on every 1 in my life—that I'd never heard of or been on…They said, “Oh, by the way, [C. diff is] contagious.” And I went into a taxicab because nobody wanted to come and pick me up because they thought on top of COVID-19, [they would] get diarrhea. So, I went home in a taxi by myself. My daughter stayed with her dad, and I was just alone. And I couldn't an appointment with the doctor because doctors weren't calling into the office. So, they [told me to] follow up with [my] gastroenterologist and I don't have a gastroenterologist. Getting an appointment with a gastroenterologist in New York, when you don't have one on your rolodex is like…we'll see you in 2 years. And I was like, “I'll be dead in 2 years!”

Luckily, I'm not shy…I just started calling everyone that I knew that ever had irritable bowel syndrome (IBS), or Crohn's, or colitis, until I found somebody who said, “This is my doctor, call him and say that I said to call.” And they said [they needed me to give them] a stool sample, and their reaction was [that] the test was probably wrong…those PCR rapid tests, always give a false positive, I bet you don't have C. diff. And I'm thinking, well…give me another reason why this is happening. [They told me that it] probably [was] not see C. diff, [and to] just take the vancomycin. And at this point, I've already I've done a deep dive, I'm on the phone with the Peggy Lillis Foundation, I'm on the phone with everyone I know, and I'm finding people who have had C diff. And they're telling me, the only thing that's going to help is a [fecal microbiota transplant (FMT)]. And I'm [wondering] what's an FMT, and my daughter laughs, and she goes, “Remember on Grey's Anatomy?” My 11 year-old is figuring this out with me!

So, I start calling doctor’s offices that I find in New York that do this, and again, [the first] appointments [are] in 2 years…and finally I got through and they said, “Well, you need to fail 3 rounds of vancomycin.” And I said, “Well, I already failed the first round. Why don't you put me on the schedule, because it's not looking good for the second round.” I called the gastroenterologist and he said [he would] send [me] a second round, and I took it, and after I finished it, 2 days later, it was back again. And I [called and] said, “Call in the third round, because I need to fail it before I get on the list.” And what I found out after I went through all this is there are people that lived through what I lived through, but over a period of years before they get to the FMT. But because I had years of living with health problems where I learned, be aggressive, be assertive, go for what you believe you deserve or what's indicated, I was willing to push through doors that other people thought, “Well, the doctor knows what's best.”

I've had 35 surgeries in my life. I've never advocated so hard for anything as I have for this that lasted 2 months. And the surgeries that I've had have all been for the same condition—and I'm an advocate for that—but never have I felt so strongly that this would have been this was avoidable and that the—I don't want to say ignorance—but lack of education and awareness…and I'm still having this conversation. It's like when you feel like you just keep coming up against a wall. I felt like Sisyphus, I was like, “This is crazy.”

When I spoke to the guy who gave me the FMT, he explained to me that dentists are his bread and butter that the over-prescription by dentists are what keeps him in business because—and this is one of the things that I'm working on in my public health program—there's no linking of your dental records, but your electronic health record. They're 2 totally separate systems, so if your dentist gives you an antibiotic, it's not going to show up at a hospital record, because those 2 systems are siloed.

Pharmacy Times: How did it eventually go from you taking the antibiotic to [saying,] “Oh, whoa, how did I get C. diff after taking this antibiotic?”

Feldman: What I started to learn about what causes C. diff, and they started to ask, “Have you taken antibiotics in the past?” And I started to look back and I thought, well, yeah, I've been taking antibiotics my entire life. But then I realized they were looking through my medical records, and they're like, “We don't see that you had any antibiotics written to you.” And I said, “Oh, I did. I went to the dentist, right before…” and it kind of clicked.

There's no way to really link “Oh, it was that antibiotic that led to that.” So I can't say with 100% certainty that that caused that, because look, I was at the hospital for my COVID-19 shot, I could have picked it up while I was at the hospital…so, it is it is a community-acquired disease and a hospital-acquired disease…but based on the timeline of when [it began,] it just makes the most sense that it was from the antibiotic, and the dysbiosis of my gut microbiome when my symptoms started to come about and when I took the antibiotic.

Pharmacy Times: So, your experience—and we'll delve in more into the FMT—even going back to the dentist, did it give you any hesitation to go back to a dentist? Is there now a little voice in your head that's raising alarm bells? Or what else has happened because of you contracting C. diff that you never thought would happen because of this?

Feldman: It's such a good question, and it's 1 of those pervasive things that people just don't even recognize…it's like there's this trigger in my memory, whenever I have to go in for any appointment, and I know that there's the potential for an antibiotic to follow the treatment, so, whether it's a dentist or anything else…I had elbow surgery following the C diff, and I know they run antibiotics…people are like, “How would you even put those 2 things together?” Because it was an emergency thing, it had to be done, but while they're doing an operation, obviously, they run a prophylactic antibiotic, and then they send you home with a few days of antibiotics. And it's very simple…they say finish the antibiotics, and it's so simple to just not finish the antibiotics. And I think back to in the past, how many times I thought, “I feel fine, it healed, I'm okay.” And now I take antibiotics, I time them, I take them exactly when they're supposed to be taken, I finish them, I take them with a probiotic…and to that end.

So, that was the first time I had to take an antibiotic after the C diff, but then I had to have a bunch of surgeries…in 2023, I had surgery in June, July, August, and September because I had an implant that failed, and they had to repair it. And so—I actually called somebody in the pharmaceutical field who specializes in C. diff—I called my FMT surgeon, and I called a bunch of patient advocates in the Peggy Lillis Foundation, and they said, “You really need to tell the surgeon to chase your antibiotic with vancomycin to prevent it.” There's no evidence that that's going to help, but at least you're kind of protecting yourself, if they're going to give you an antibiotic, [they should] give you the 1 that's best used on C. diff. That's not medical advice that I'm giving to the world, I'm just saying [that] this is where my head is. And most people would be like, “Are you nervous you're going into surgery?” and I wasn't nervous about the surgery, I was nervous about recovering from surgery, and then having a bout of diarrhea on top of the recovery process. And that's kind of where I sit right now…anytime I have anything done, it's not, “Oh, how's that going to go?” It's the recovery and the antibiotics that might follow it.

So, to answer your question—in a very long way—is yes, it's all I think about all the time. And I think back to my childhood, how every time I had a sore throat, the doctor threw antibiotics at me, and how grateful I am that my daughter didn't grow up living on antibiotics. And it's scary to think of a world where antibiotics don't work anymore. What would we do?

Pharmacy Times:A lot of doctors and conditions are running into that exact issue, is antibiotic resistance. And from what I can hear of your story, is it just strikes me that there is not so much research—still—about, not only to treat C. diff because there is more happening, but what do you do afterwards? …You beat C. diff, but did you? …Is this something you beat? It seems like there's a lot of questions, is that a correct assumption?

Feldman: It's totally correct. It's almost when people are like, “Oh, you're cured.” I'm like, it's in remission, because it's never really gone. We all could test positive for C. diff, but it's not whether or not [C. diff is] in your system, it's whether or not you're having a flare.

…I hate to use cancer as an example, but diabetes or cancer, you could keep it under control [to some extent,] but it's a daily lifestyle choice. I don't just go and eat a bunch of fried food and drink a bunch of dairy because it will cause a flare, so your diet is affected by [C. diff] and your lifestyle choices, and thinking about going on long trips and all the activities start to get affected by what could happen.

And again, like you said, all the infections, so when I go in for surgery, I have friends [who say they have] caught MRSA, and they're like, “Oh, don't worry, it's not the bad MRSA.” I'm like, “I didn't know there was a good MRSA.” Or I have friends that have a biofilm infection on the implant…so, if you catch 1 pathogen, it just leads your body to be susceptible to other infections that are resistant to antibiotics.

I'm just grateful that I had the FMT because hopefully, it kind of restarted my system, but again…there's no real evidence. I'm kind of a living lab rat, for lack of a better word.