C difficile Survivor and PLF Board Member Describes the Counseling Gap Pharmacists Can Close

At 34 years of age, Caitlin McClain, a nurse, army veteran, and mother, was prescribed ciprofloxacin and metronidazole for diverticulitis. She then went 5 months with worsening symptoms before she was diagnosed with Clostridioides difficile (C difficile), by which point she was in septic shock. She went on to have recurrent infections, several fecal microbiota transplants, and a donor-directed procedure at Mayo Clinic, and she has been C difficile-free since February 2025.

During this interview, McClain describes how pharmacists helped her get treatment when it was hard to find. She discusses antibiotic stewardship, her advocacy with the Peggy Lillis Foundation (PLF), and the long mental health toll of the disease.

Pharmacy Times: Can you introduce yourself?

Caitlin McClain: My name’s Caitlin McClain, and I am a C diff survivor. I am a mom and a wife. I’m a nurse. And more recently, my background is in microbiology, public health, and epidemiology, and I’m an army veteran, and a lot of other things. C diff is probably the least entertaining part of who I am, but it has become a very large part of who I am.

Pharmacy Times: Walk us through how your infection started. Was there a triggering event, such as an antibiotic course or a hospital stay?

McClain: So, I do want to share something. Health care workers are already at risk for being colonized with C diff because it’s on every working surface in a hospital, in a clinic, and cleaning doesn’t take care of it. I mean, it can live on a surface for 5 years. So I was predisposed for this infection. I didn’t know that at the time.

So in March of 2024, I had acute uncomplicated diverticulitis out of nowhere. I was 34 years old at the time, a healthy weight, no risk factors for it. I just went to sleep and woke up with the worst pain in my abdomen that I’ve ever experienced in my life. I actually didn’t know what was going on, clinically. I just knew that something really was not okay. And so I went to the emergency room, and they did blood work, and they scanned my abdomen, and they found that diagnosis.

And so I was a little bit puzzled because I was so young and had no risk factors for this, that that was the diagnosis. But the ER doctor is like, “Yeah, these things happen, and the treatment is basically a combination of 2 antibiotics. We’re going to give you ciprofloxacin and [metronidazole (Flagyl Pfizer;)], and it kills the 2 types of bacteria that we are concerned about in your intestine. You’ll take them for 10 days, and it should resolve. Get a colonoscopy. You haven’t had one before.” And they were just like, “Good luck. It should be fine.” And again, my background is in nursing, and I am not a doctor, and this physician is telling me that this is what I need, so I followed the instructions exactly as you should.

And I knew at about day 5 that something was not as it should be, because they had sort of made me think that I take the medication, clear liquid diet for a few days, and then the medication should take care of it. I started having a lot of abdominal pain, cramping, lots of diarrhea, and just generally not feeling well. And so I go back to my primary care physician, and she’s like, “Yeah, the inflammation can last quite a while with this. Finish the antibiotics, and you’ll feel better probably in a few weeks, maybe not as soon as what they anticipated.”

And so I went home. I continued to try and live my life as best as I could, and the symptoms were still ongoing. And so I went back to my primary care and was like, “Hey, I’m having diarrhea every time I eat, and I’m not able to eat a whole lot, and I just feel really tired.” And she’s like, “Okay, I’ll place a consult for GI. It’s probably [irritable bowel syndrome] (IBS).” And I was like, “Okay, sure, that is reasonable.”

And then unfortunately, my appointment was scheduled 9 months out for the outpatient clinic, which just is the reality of specialty care sometimes. There’s a lot of patients, not enough providers, and mine was really not emergent at the time. And so I went the whole summer with generally the same kinds of symptoms, like just a lot of disruption in my bowel habits, feeling really tired. My coloring was really poor. I remember going to the pool with my kids and grabbing my, at the time, 5-year-old, and saying, “You have to come with me right now. Mommy needs the bathroom.” And I remember thinking, “This should not be happening.”

And I was starting to get a little bit concerned for the possibility of C diff and/or another gastrointestinal infection. I’ve treated a lot of patients with C diff, and my symptoms were not quite that severe yet, but it was starting to become more problematic.

And so, my children went back to school in August, and they brought home COVID for their start-of-the-year gift. And it was a rough 7 days. My kids were very sick. I was very sick, but then I didn’t get better. And so I couldn’t get an appointment with my primary care physician, and I just really felt awful. So I went to the emergency room, and I was like, “You know, this is what’s been going on. We did get COVID. I just feel really bad, like my whole body is tingling. I’m very dizzy. I’m very run down. I’m going to the bathroom a lot.”

And they’re like, “Yeah, we see the consult for GI, and sometimes people have viruses that are worse than others.” And they were like, “Are you feeling anxious? Have you considered talking to a therapist? We’ve seen you’ve had a lot of appointments for the same things.” And I was like, “Well, therapy’s great. I love therapy. I think therapy is a really helpful tool, but I don’t think that therapy is going to help me with what I have going on.” And they’re like, “Well, you just have to wait for GI.” They gave me some fluids. They didn’t draw my labs, and they sent me home.

My daughter then went to soccer practice 2 days later, and it was about 40 minutes away from our house, and I remember really not feeling well on the way up there, and I got really sick in the bathroom. I was vomiting. I was having a lot of diarrhea, and it was extremely painful. And in my mind, I’m like, “Ooh, something is not right. I just need to hang on until she’s done. We’ll get in the car. I’ll go home, and either I’ll be back in the ER tomorrow, or I’ll see what the doctor can do.”

And on the drive home, I felt like this impending sense of doom. My body did not feel like I was attached to it. I know that sounds really strange, but I was very hot and tingly. My heart rate was really high. And I remember looking in the rearview mirror and seeing her face, and I’m like, “I feel like I’m going to die.” And I’m looking and I’m like, “I’m on the interstate. I don’t know what to do. If I pull over and call an ambulance, will somebody take care of her? Do I just get off the interstate and try and find a hospital?” I was a little bit away from where my home was, and I’m like, “No, no, I just have to get home.”

And so I made it home, and the next day I went to a different emergency room where they checked my labs and I was in septic shock, renal failure, and tested positive for C diff. And I had toxic megacolon at that time. And so I was officially diagnosed with C diff the very last week of August, and I had my first hospitalization.

And I’m allergic to vancomycin, so my only option was fidaxomicin. At the time, I didn’t realize how very lucky I was to be offered that antibiotic. It’s very expensive. And I was able to see the GI on call in the hospital. I was supposed to see them outpatient, and they said, “Listen, with C diff, it usually recurs. It recurs in a lot of our patients. Very rarely do we give them one round of antibiotics and then they’re fine. And looking at your history, you’ve basically gone 5 months with symptoms that are progressively getting worse. And my thought process is, you’ve had C diff this entire time. And so because you’re untreated, and your colon is so inflamed, you need access to a fecal transplant.”

And I had read about it. I knew what it was. My mom had had one years previously for C diff as well. And so I’m like, “Okay, let’s do that.” And I was very lucky because this is before OpenBiome was shut down due to regulatory issues. I received 2 fecal transplants in the same week, one after the other, and I had about a month where I didn’t have symptoms and I was starting to feel like, “Okay, this was really scary, but we’re going to be fine. I’m going to be okay.”

I had Thanksgiving with my family, and the next day, the diarrhea came back, and it came back very badly. And I instantly knew at that time that the C diff was back. So I went back to the emergency room. I brought a bag with me because I knew I would be admitted. And that was their assessment as well: the C diff was back. I was toxin positive, PCR positive.

And so basically at that time, we were sort of in the last month or 2 where OpenBiome could distribute the stool for donation for fecal microbiota transplant (FMT). And I had a really hard conversation with the GI doctor on call. He said, “I am a little concerned. We have given you the best antibiotic for this infection. You have received a fecal transplant. You’ve had 2 of them, actually, and now you’re back and it’s still really bad. I think that we are ending where we can give you adequate treatment, and I’m not sure what that looks like.”

And so my poor husband is gowned up, gloved, and he looks at me and he’s like, “Well, what does that mean?” And I said, “What he’s saying is if I cannot receive treatment at a higher-level facility, I’m going to die.” And then my husband looked back at the doctor, and the doctor shook his head, like, “Yes, that’s what’s going to happen.”

And because I am very lucky to have health insurance through the VA and through the military, I actually was able to start facilitating referrals to outside facilities. So I ended up going to see Monika Fischer at [Indiana University] in Indianapolis, and she actually has done more fecal transplants than most physicians in the entire country. She really is a pioneer in the microbiome world, and she is very proactive with C diff care.

And so I went and saw her, and she basically said the same thing. Like, “Yeah, I’ve had patients where I’ve had to do 11 fecal transplants, over and over and over again. And what I would say to you is, normally, we just go in a row and do as many as it took to save your life. But I am hoarding as many bags of donor stool as I can, because when they can’t distribute any more and my patients can’t get access to [fecal microbiota spores, live-brpk] (Vowst; Seres Therapeutics) or [fecal microbiota, live-jslm] (Rebyota; Ferring Pharmaceuticals), or it doesn’t work, then they’re going to start dying. So I’m going to give you everything that I can, and then I’m going to have to send you out to Mayo Clinic.”

And I think I was having a disconnect in processing what was happening because I have 3 children; I will not die. This doctor’s telling me to do this, I’m going to do it. But it didn’t really settle in until I was driving to Mayo Clinic. Like, you read about it when you’re in medicine. You know doctors who’ve trained there; they’re some of the best providers in the world. It is the mecca of medicine, and I am driving to Minnesota in the middle of winter, and I’m just like, “Wow, okay. If we get here and they can’t help, I’m dead, and I’m going to die in a really undignified way. I’m going to die in a pile of my own feces, and I’m not going to let my family in the room because I can’t have them die. I can’t have them touch me, bring this home, and have it kill them. So I’m going to end up saying goodbye to my family on FaceTime.” These are the things that I’m thinking about while I’m driving to Mayo Clinic.

And I get up there and I meet Sahil Khanna, and he is the kindest doctor I’ve ever met in my life. Not only is he very knowledgeable in the world of C diff, he just genuinely is a very kind human being. And he’s like, “You know, you had a risk factor. You’ve been a nurse for many years.” No one ever discussed that with me, and it never occurred to me. I wear my PPE. I do what I’m supposed to do. Wash my hands. And he’s like, “It doesn’t matter. And in fact, you probably can never return to bedside nursing. It would probably cost your life.”

And I asked him, I was like, “So what are we doing?” And he’s like, “I think the best way forward for you is a donor-directed FMT. We’re going to deliver it through endoscopy in the top and through colonoscopy on the bottom, because you likely are colonized in various parts of your intestines, and we need to attack that area as best as we can. I’m going to send you home on 10 days of antibiotics, and then you’re going to come back, and we’re going to do this procedure, and I will do it as many times as I have to to keep you alive.” He’s like, “I’ve had a patient on clinical trials for 3 years, and I’m waiting for the science to catch up to what he needs.”

But he’s like, “First, let’s do some labs. Let’s just make sure you’re stable.” Well, I wasn’t stable. I had a potassium that was almost nonexistent. I could have had a cardiac arrest. What happens is, essentially, when you have sepsis, your blood count increases because your body’s trying to fight the infection, so it sends all of its little worker cells to go attack the infection. When you’ve had an infection for so long, you actually stop making enough cells. Your bone marrow starts failing, and you can’t keep up. I actually had almost no white cells at all, and so that was really alarming. I was not expecting that.

And so I went home and did 10 more days of antibiotics, and thankfully, I had a friend from the military willing to take me back, and I had to prep him ahead of time. Like, “You can’t touch this. You can’t touch this. You can’t go anywhere near me. You must wash your hands. You must bleach everything.” And I had it down to a science. I mean, there’s probably no human DNA in my house still, because I obsessively cleaned, because there was no way I was going to let this happen to my children.

And I also found out, for people that are going through this, if you have a pet, apparently you have to scrub your pet, because as they’re walking around, they’re picking up spores that could be in your house. And so then you’re petting your animals, and they’re lying on different things, and then it’s spreading the spores everywhere. So, almost lost my life to giving my cat a bath. She really did not enjoy that, and I had to do that pretty consistently until I had the fecal transplant, just trying to get rid of as many spores in my home environment as possible. I had to decontaminate my vehicle. That was really interesting. My neighbors probably had some really interesting thoughts about what I might be doing in my car. I have a little bit of a sense of humor. It’s my coping mechanism. But looking back, it was pretty insane.

And so I drove back to Mayo Clinic and got ready for my FMT. And I remember being in the endoscopy suite, and they’re trying to figure out which medications they want to give me to help me relax, because I’m very anxious at this point and trying to just think about my kids, think about my family, and focus on what is in front of me.

And the doctor comes over, and he pulls his mask down, and he said, “Hi.” And he introduces himself with his first name, and he takes his gloves off—which really he probably shouldn’t have done, but of course, he went and washed his hands—and he just grabs my hands. He’s like, “I’m just going to stand here until you’re asleep, because you’re a health care worker, and this could be me, and I think that you just need someone to stand here with you.” And I start crying at this point. I said, “Yeah, I really do.”

And he said, “Hey, I saw that Dr Martinez and Dr Fischer took care of you in Illinois and in Indiana.” And I said, “Yeah.” And he said, “I was a baby doctor with them. They both trained me, and then I ended up here.” And it was such a nice moment to see that we come from different places, but we were all connected. And he’s like, “It’s going to be okay. You’ve got this. You’re going to be okay.”

And so I had the procedure done, and actually, it didn’t go exactly as planned. They had kind of a hard time maintaining my blood pressure and other things because my body was very weak. So what would’ve normally been an outpatient procedure that was relatively simple was less simple, because my body had just been through so much. And so that was February 3, 2025, and I’m very thankful to say that I have been C diff–free since.

Pharmacy Times: Did a pharmacist play a role in your care? Looking back, what do you wish one had told you?

McClain: Yes, I did have a couple of pharmacists that I worked with. I was a little bit of an unusual patient just because I was on antibiotics for so very long. I think I was on fidaxomicin for about 10 or 11 months, and so that’s a lot of medication.

But what I will say is, sometimes you discharge, and it’s a Sunday night, and you’re trying to find your medication. You have to have it. You can’t wait. Even delaying 24 hours or 12 hours to get your medication can be very dangerous, and fidaxomicin is a very expensive drug, so not every pharmacy has it in stock. And so I was really lucky, because I had pharmacists that would call around to other locations, send couriers, or fill 1 or 2 tablets for me until they could get the rest of the medication that I needed. They were very helpful with that. They made sure that my insurance had the proper authorizations. To be quite honest, I’m surprised my insurance did not deny that medication. Again, I have a pretty severe allergy to vancomycin, so I think that may have been why.

For patients that are going through this process, a pharmacist is actually a really important part of this entire picture, because they really are the first step—well, maybe the second step—in antibiotic stewardship. You have your ordering provider, who’s trying to pick an appropriate medication for your condition. And I want to be clear: antibiotics, when used appropriately and only when necessary, are lifesaving, but they also are dangerous. They are not benign.

And so my pharmacists were very helpful in answering all of my questions about the medications. And now that I’m on the other side of C diff—I call it a recovery period, because really and truly, it takes a very long time—I have to ask them a lot of questions about my medications now. What is safe? What is not safe? Do they have a recommendation? It was actually a pharmacist that recommended Florastor, which is a probiotic that actually helps rebuild the microbiome. So I was very lucky to have access to great pharmacists.

I’ve had some pharmacists who are very knowledgeable about the risks of C diff, and there are certain antibiotics that are much more likely to cause C diff in populations. But to be clear, it can be any antibiotic. It can be 1 dose. It could be 10 doses. It’s very individual.

Pharmacy Times: What should pharmacists say when counseling patients who are starting antibiotics, or patients who have had C diff before?

McClain: I can’t say that I’ve ever been counseled by a pharmacist about C diff. They have never used the words, “This medication could cause C diff.” “If you experience diarrhea, it’s likely a side effect of the medication”—that’s more of what I’ve heard. “If you become dehydrated from the diarrhea, please contact your prescribing physician” is sort of what I’ve heard.

Since having C diff, I have to tell everybody, “Hey, I’ve had C diff.” I have to remind them that this is something that I have in my personal history. And once I do say that, I would say they’re pretty proactive about making sure that we’re making safe medication choices. I also have to do that for my children as well, because they lived in the same house as me. And so even though I was very careful—probably obsessively so—the risk was still there.

And I do think that one way we could maybe prevent C diff, or have people be diagnosed sooner, is to actually explain the difference between antibiotic-related side effects—nausea, vomiting, diarrhea—and what C diff actually is, because there is a difference.

Pharmacy Times: What has PLF’s advocacy, including meeting with lawmakers, meant to you personally?

McClain: I think PLF is doing work that I don’t even know if there’s words to describe. And it’s not just because I’m involved. It’s because they saved my sanity.

I told my husband when I was really sick, “I just need one story. I need to know one person lived, because what I’m seeing and what I’m being told, it doesn’t look very good for me.” And he actually is the one that found PLF. And so I’m reading through patient stories. I’m like, “Oh, okay, we can do this. We’re going to make it.” And I’m seeing that they have peer support, and so I use peer support. And she is literally the most wonderful person. She has the kindest heart. She was made for it.

And as far as policy goes, policy changed my access to treatment. Policy puts roadblocks in place for patients getting access to the FDA treatments that are available. They didn’t work for me. I did receive 2 rounds of Vowst. And I’m an individual patient, and I deserve individual care, and they are working really hard at ensuring that every person is treated as the person they are, with the situation that they have.

They are bringing a voice to a really disgusting disease process that people are uncomfortable talking about. They are forcing providers to take a step back and look at the patient, and look at what they’re prescribing, and decide whether the risk is worth the benefit. And then they’re providing a place for patients and their families to go when they don’t have anyone else to discuss this with. Even some of my providers are a little bit puzzled about what to do sometimes. And then I could take the information from the site: “Well, here are the peer-reviewed articles that discuss treatment options. Here are the clinical trials that are available.” And PLF gives those things to patients.

And they are also working and partnering with other agencies to provide care to patients sooner. You should not have to have C diff 2, 3, 4, 10-plus times to be given microbiome restorative therapy. The data shows that if you get C diff once, you must put good bacteria back in in order for your gut to heal. If we started doing that with the initial infection, we would have much less recurrence. We would have a much lower rate of death. We would have many more patients returning back to work, back to their lives sooner. We would be reducing the rate of spread.

And PLF is doing this because the Lillis family lost their mom, and they took their pain and their anguish, and they put it to a purpose, and the purpose is to make sure that other mothers like myself don’t die. That I don’t leave my children without a mom, or a husband without a wife, or a friend without their best friend. I mean, every patient is someone’s everything, and PLF has never, ever forgotten that. That foundation knows that, and they take that with them in everything that they do.

Pharmacy Times: PLF has backed the PASTEUR Act, a proposed antibiotic-related law. Why is it important to the C diff community?

McClain: So I’m in support of the act. I actually took some time to really read about it, because I wanted to understand it fully. The reason why it’s important is we need new antibiotics now. For C diff in particular, there are 3 that are prescribed, and really one of them isn’t very effective anymore, so that leaves 2. If resistance continues to develop with this bacteria, as it does with every other bacteria, then we start running out of options.

Antibiotic resistance is a huge issue anyway. Even if you’ve never had C diff, we have bacteria, we have fungi that are very difficult to treat, and a lot of patients are losing their lives from infections. And this act would enable companies to, I guess, be a little bit more motivated to start working on making more of these drugs that we need right now. We don’t need them in 5 years. We need them right now. And so it incentivizes that research. It incentivizes that dedication. It incentivizes the distribution of these drugs that people need right now. We need them right now. And so it’s really important.

And it also discusses antibiotic stewardship, and really, that is where C diff prevention starts. Are we overprescribing antibiotics? Are we creating resistance in our patients by doing this? And then on top of that, the outcome is C diff. That’s just not great for the patient. That’s too many things that their body is having to overcome, and so we have to do things differently. We cannot just keep prescribing broad-spectrum antibiotics for things that do not require it. If we continue to do that, we’re going to create superbugs. They’re already there. They’re in the hospitals. They’re in doctors’ offices. They’re in the soil. They’re in our food. And if we continue to consume them, then more people like me are going to end up with these antibiotic-resistant infections, and then the only option is more and more and more antibiotics, and the outcome is C diff. And then the problem just continues to get worse.

Pharmacy Times: Any final or closing thoughts?

McClain: There is one subject I wanted to touch upon, and that’s the mental health aspect of being a patient with C diff, or a family member. I’ve seen it in my own family. The people who know me, they would describe me as very resilient. They’re not wrong. I am a resilient person, but I am because I had to be. I’ve been through a lot of things in my life, as most people have. We’ve all had our individual challenges. But C diff is the thing that took the most from me. It broke me in ways I can’t even describe.

I spent a lot of time in therapy talking about it. I just started EMDR, because sometimes when I get in my car, I remember looking back at my daughter, and I start to panic. The other unfortunate part of C diff is, if the infection’s gone, almost everybody develops postinfectious IBS. Guess what? The symptoms are nausea, vomiting, diarrhea—same symptoms as C diff. So for 15 months, every time I’d have diarrhea, which was almost every day, I would hyperventilate into a paper bag and have a panic attack about 3 to 5 times a day. Had to get medication for that.

I do peer support now, and a lot of the people that I’ve talked to, they feel very isolated. You can’t be near other people when you’re sick, and then sometimes we don’t look as sick as we are, and so people are just like, “Well, you just have diarrhea. What’s your deal? Take an Imodium. You’re going to be fine.” You’re not fine. It’s not fine.

My children, every time they got an upset stomach or had nausea, vomiting, diarrhea while I was in treatment, I went off the absolute deep end. My poor husband—I couldn’t even function. I was literally monitoring every single bowel habit they had. And looking back, I’m like, “Well, that’s not healthy. That’s creating an anxious environment.” But I was so afraid. I was so afraid that my infection would kill my entire family, and every person I’ve spoken to, that has been what they’ve communicated to me: “I don’t want to hurt my family. I don’t want to hurt my friends. What if I go back to work and I make everybody sick and they all die?” That’s not living.

And then on the physiological side, C diff irritates the nerves in our intestines, and then it talks to our brain, so the actual disease causes depression and anxiety. It’s studied; it’s linked. And then the condition itself causes depression and anxiety. I’m still working really hard to pull myself out of that place. I am not who I was before, and I am okay with not being exactly who that person is, but I also don’t want to carry this heaviness with me for the rest of my life.

Because I like to have control, I have a contingency plan in my phone, printed out in my car. My husband has a copy. I know every single doctor in the entire country that does donor-directed FMT. I follow every single clinical trial, and this was before I started volunteering for PLF, because I had to have a plan in place so I don’t die. That is a huge thing to carry with you in your 30s, but it just doesn’t really matter your age. It’s a lot. There are children with this, and for those parents—I know how I feel about it with me. I cannot imagine being somebody’s mom or dad and knowing what their reality is.

And so I think that’s the most devastating part of the disease. It’s not the stomachache. It’s not the disgusting diarrhea. It’s not the bleach. It’s not a fecal transplant, which just sounds disgusting to other people. It is losing the parts and pieces of you that make you experience joy without waiting for the other shoe to drop. I have not figured out how to do that yet, and I have been C diff–free for a long time.

I don’t know what that emotional, mental recovery—what the end result of that is. I’m hopeful it’ll get better. And I think sometimes people look at me, and because I’m very proactive, I picked something to do. But I’m not okay, and every other person I’ve talked to, they’re not okay either. I think that needs to be discussed more.