Adapted from episode 152 of The Perfect Stool podcast and edited for readability with Christian John Lillis, co-founder and CEO of the Peggy Lillis Foundation, and Lindsey Parsons, EdD.
Lindsey:
So why don’t we start with what C. diff is and how you got involved in advocating for C. diff awareness.
Christian John Lillis:
C. diff, or Clostridioides difficile, which is still difficult to say, so we generally call it C. diff, is a spore-forming bacteria that is found all throughout our environment. When a bacteria is spore forming, that means that when it’s under stress or outside of the body, it moves from its vegetative state to like a seed state, or like an acorn state, and when it’s in that state, it is really difficult to kill. Antibiotics may not kill it. In order to kill it on surfaces, you have to let it lay in bleach, and so one of the things I recommend for C. diff is not to use hand sanitizer, but to actually wash your hands with soap and water, not because the soap kills C. diff, but because the hand washing removes the spores from your hand, and they go down the drain.
It’s also obviously a microorganism. You can’t see it. Most people get it through what they call the fecal-oral route, meaning it came out of somebody’s butt and you touched it and it ended up in your mouth and you swallowed it. So there’s a proportion of us, some say it’s 2%, some say it’s 10%, that have this bacteria in our body. I’m sure your listeners are very familiar with the gut microbiome, so it’s there alongside all of these other bacteria, viruses, all kinds of microorganisms. And as long as your gut is healthy, it’s kept in check. But what happens often is when we take antibiotics or take something else that disrupts our microbiome, the C. diff now has all this space to grow because the other bacteria have been washed away or killed off by the antibiotics, and as it reproduces, it gives off a toxin, and that toxin is harmful to humans. So in reproducing itself, it gives off a toxin that harms the cells of our colon. This results in what we call a C. diff infection.
You have urgent and frequent diarrhea, fever, nausea, those are the main symptoms, and if it’s left untreated, C. diff can severely damage the colon, leading to a condition called toxic megacolon, which is frequently deadly. So patients who progress to toxic megacolon, or if they have multiple recurrences of C. diff, which I’m sure we’ll get into, they’re at a very high risk for sepsis and for death.
A feature that distinguishes C. diff from a lot of other opportunistic infections is what we call recurrence, meaning you’ve been treated, it seems like you’re clear, but then it comes roaring back. And the reason that happens is because until the microbiome of your gut is healthy again, the C. diff does not waste an opportunity to regrow, right?
So, a recurrence is you have a first infection, typically treated with antibiotics, most people experience either a lessening or sensation of symptoms during their course of antibiotics. But then for 30 to 40% of people who have that first treatment, somewhere between two weeks to up to three months after they finish their course of antibiotics, the C. diff comes roaring back. So, now you’re in a recurrence. We have about again, 30 to 40% of people, so maybe 180,000 Americans every year, will get recurrent C. diff. And once you had a recurrence, if that gets treated, and you seem to be out of the woods, your likelihood of a second recurrence goes up to like 50 -60%. To get a third recurrence, it’s now at 80% and also, there was a study that came out last year, led by Dr. Paul Feuerstadt that showed that for every recurrence you have, your chances of sepsis and death increase significantly. So it’s something we really want to, pardon the pun, sort of nip in the bud and kind of catch it and treat it as early as possible.
In terms of why we got involved with this, you know, you mentioned the organization I run, the Peggy Lillis Foundation. So Peggy was my mother. She was a 56-year-old kindergarten teacher. She was a single mom for most of our lives, and in April of 2010 she went to the dentist to get a root canal. The dentist prophylactically gave her Clindamycin, and a few days later, she developed severe diarrhea, fever, nausea. Being a kindergarten teacher, she didn’t think anything of it. She was a pretty healthy person, but if you spend five days a week around 20- five-year-olds, your chances of getting, like, at least one, you know, she’d get a bad bronchitis or a bad head cold, but again, like just once or twice a year, and she would joke and say, the kids slimed me. So she just thought she got something from the kids. It was only when it persisted into the fourth or fifth day that we became concerned. And I was mostly concerned about dehydration, because I’m sure people who listen, who have, maybe even IBS, like if you’re constantly having diarrhea, it’s really hard to stay hydrated.
So we were initially going to take her to a GI appointment, but when I got there, she seemed so fatigued, and, you know, her color was off and she was very listless that I said, I think we just need to go to the ER and get you hydrated and then they can test you there. You know, I’d worked in healthcare in other ways before this. And so I kind of knew, if you show up and they can’t help you in the office, they’re just going to send you to the ER.
Anyway, we get to the ER, my mother’s white blood cell count is over 40,000 and normal is around 10,000 so four times normal. This is a the indication you have a severe infection, and about within an hour of getting there the attending ER visit and the attending infectious disease specialist asked to speak to me and my aunt, who had met me at the hospital. And they basically tell us that my mom has a life-threatening infection. They believe she has toxic megacolon, and that it’s caused by this thing called C. diff. I had never heard of C. diff before.
My aunt, who was an oncology nurse, said, how can my sister have C. diff? She hasn’t even been hospitalized in like 30 years, and she’s 56. So she was already going into septic shock. Her kidneys weren’t functioning. And, you know, I guess from watching TV or whatever, I thought that if people were in septic shock, that they were, like, in a coma, like I didn’t know you could be up and talking and arguing with me that you want Diet Pepsi and not more ice chips and be in septic shock, right? So they told us at that point that she was the sickest patient in the hospital. And these doctors really did everything they could. I mean, this was a small hospital in Brooklyn. It was not a Mount Sinai or NYU, like it was a small hospital in Brooklyn, because we just thought she needed fluids. But they really did everything. They contacted colleagues at the leading institutions and leading academic medical centers. We talked about moving her, but they were afraid she wouldn’t survive the trip.
So to sort of shorten the story, that evening, they came to us and said we would perform a colectomy, but we don’t know that your mother would survive it right now. So what we want to do is keep her overnight, try to arrest the sepsis, try to reverse the sepsis, and then in the morning, if that hasn’t worked, we will do a colectomy in an attempt to save her life. If it has worked, hopefully she’ll regain consciousness. But either way, we can decide what the next steps are.
So we go home, we go to bed, we don’t sleep very much, as you can imagine. 6 a.m. the phone rings. It’s the surgeon. He says she has not improved overnight, and we have to meet him because we have to consent to surgery, because I’m her next of kin, and this is despite overnight, they gave her broad-spectrum antibiotics through a central line: they were giving her vancomycin enemas, IV immunoglobulin. And so around 10 a.m. they perform the surgery, she does much better than anyone expected her to, in terms of her vital signs, and they move her back to ICU. And my mom had eight siblings, most of whom still lived in the New York area, so the waiting room by ICU is like 50 people. It’s a complete clown show.
And you know, we go in two by two to sit with her, to talk to her, and I remember telling her, you’re so strong, like, if anyone can beat this, it’s you, like you got through a divorce. You raised me and my brother, who are not easy kids, like you’re tough as nails. But then around four o’clock, they asked to speak to us, and they said that despite everything that they were doing, her brain wasn’t getting enough oxygen. And my mother would have taken a colostomy bag and she would’ve been fine, but brain damage, you know, these are things she wouldn’t want. So they said they were going to do their best. People continue to go in and sort of talk to her and try to encourage her.
Lindsey:
She was awake?
Christian John Lillis:
No, no, no. She was unconscious. No, she wasn’t awake. She was never awake again after the surgery. So they asked us to ask everyone to step out of the ICU so they could do something for her. And around three minutes later, the ER attending came and told us that our mother had passed, that they had tried three times to resuscitate her, and that she was gone. We were very, very close to our mother. My mother had 13 God children. She was a very beloved person in our community and in our neighborhood, and so the grief was overwhelming and inescapable and really hard to believe. You know, like so quickly, so quickly and again, like someone who, I mean, she was tough as nails, you know, even when she became a teacher, she still waitressed on the weekends. The woman worked six days a week and went to school almost the entire time, from the time I was, like, 10 years old until the day she died, you know, so it was crazy.
So what happened to her is the inspiration, but the secondary inspiration is for us raising C. diff awareness is that I was a college-educated person who had already, at that time, been a fundraiser for NYU Langone. I wasn’t working there anymore, but I was a savvy person, and for me not to have heard of C. diff, and then to go home and start doing research and find out that it was killing at that point, they estimated 15,000 people a year. It’s now been revised to 30,000 people a year. And for context, you know only about 17,000 people die of AIDS every year now. Less than 10,000 die of drunk driving. So when you think about all of the attention, deserved attention, to those public health crises, for us to have a disease that’s killing twice as many people and really nothing was being done about it was unacceptable to us.
Lindsey:
Yeah, wow. That is horrible. So now, with what you know, what should someone do if they have some kind of severe diarrhea like that? How quickly should they see a doctor?
Christian John Lillis:
So, C. diff diarrhea, it is urgent, and it was very frequent, like, you or I might eat something bad. And so maybe the next day we wake up, or we’re going all the night, and we have to go, you know, like, within six hours, we might feel crappy, but it’s gone, it’s out of us.
Lindsey:
Right? Maybe throw up too.
Christian John Lillis:
Yeah, like you might feel it might be loose for another day or two, but yeah, and with norovirus, it might be two or three days, but it’s not that you’re not going 20 times a day with norovirus, you know, right? So if you have this urgent 10-20 times within 24 hours, if you have a fever, and especially if you if you’re somebody who’s being treated for cancer or any immune-suppressant drugs or have recently taken antibiotics, those are all risk factors for C. diff. So in that case, get to the hospital, get to a doctor as soon as possible, ask to be tested for C. diff. If you’re younger, if you’re under 60, most doctors will not think of you having C. diff, so you have to be proactive.
Lindsey:
Okay and better to go to the doctor or straight to the ER?
Christian John Lillis:
I mean, unfortunately in this country, you know, we have this crazy system where people go to the wrong ER, and they get a bill for $20,000, so I think you kind of have to, like, I think if you go to urgent care or an ER or if you can get an appointment the next day, but I think, I wouldn’t wait.
Lindsey:
Yeah, because I’m just wondering how quickly the test results come back if you see a doctor?
Christian John Lillis:
Like, I would go to the ER if I thought I had C. diff, yeah. I’ve been doing it for 15 years. So I have a list of doctors of who I would start with, and . . .
Lindsey:
You’ve got your preferred doctors.
Christian John Lillis:
Yeah
Lindsey:
Okay.
Christian John Lillis:
I would just show up on one of our board members’ doors and be like, Dan, we’re going to your hospital ER.
Lindsey:
So how prevalent is C. diff in the US and worldwide?
Christian John Lillis:
So the most recent estimates, which are now about four or five years old, there probably would be more recent estimates, but Covid, the CDC does the estimate, and Covid kind of threw everything out of whack. So back in 2019, around that time, they estimated around half a million infections every year, and about a third of those people get recurrences, around 180,000 people that experience recurrence, and about 30,000 deaths. 15,000 of those deaths are directly attributable to C. diff, they’re septic, and then the other half are someone has cancer, someone’s had surgery, they get C. diff, and C. diff is kind of what pushes them over the edge on something that they might have otherwise survived. So it might be considered like a contributing cause of death, as opposed to the primary one. So we say about 30,000 were C. difficile, the direct cause or the indirect cause.
Worldwide, unfortunately, it’s pretty unclear. Many countries do not publicly report their healthcare associated infections. There have been efforts in the EU and in Canada, but there aren’t even back 20. Probably in the last maybe 5- 10 years ago, pre-Covid, the EU estimated data of about 80,000 cases throughout the EU every year. I don’t, in my head, know the number. How many people that is? But it’s equivalent, but once you get outside of the West, it’s pretty difficult. The other thing that I would say is this brings us in that we talk about a lot as patient advocates, is like in preparing for this, I knew you wanted to talk about this, I did research on worldwide estimates, right? And the ones that I could find, they didn’t talk about how many people. They talked about the percentage of 10,000 patient days.
Lindsey:
Oh, okay. And so, like, how many, how many hospital days are taken up?
Christian John Lillis:
Or, yeah, like how many. Like, as an advocate, right, as somebody who’s trying to raise awareness, you as a podcast host, that is useless information to us, because it doesn’t tell us anything. It’s like an insurance measurement, right?
Lindsey:
Yeah.
Christian John Lillis:
And it also doesn’t help us, as people who are trying to raise awareness of a disease, articulate what that data means to the public, because the public doesn’t care how many days you were in the hospital. The public wants to know how likely am I to get C. diff, or my loved one or my friend who’s in the hospital, right? So 600 out of 10,000 patient days mean, you know, patient hospital days means nothing to us. So I could find some of that for other countries, but I couldn’t tell you how many people.
Lindsey:
Okay, no worries. So I actually just recently heard a podcast and I should get the name, because it was really interesting about the fact that many people think that they are allergic to penicillin, when in fact they are not. And because of that, these heavier-duty antibiotics like clindamycin, vancomycin, etc., are used for infections unnecessarily, and that something like 97% of the people who think they’re allergic to penicillin, it was from something that might have happened. Maybe you had a viral infection that was attributed to . . . well, it was coming from a virus, you took an antibiotic, and you had a rash, therefore they said you were allergic to it. And it’s some sort of thing your mom told you when you were young. And therefore, anyway, so that people can get cleared of their allergies to penicillin by going and seeing a doctor, getting a skin test, and then doing a test, a secondary test . . .
Christian John Lillis:
If they react to the skin test, so they don’t react to the skin test, they’re fine.
Lindsey:
Right and so I wonder, are there particular antibiotics that are associated with C. diff?
Christian John Lillis:
So this whole penicillin allergy thing is very important, and it’s something that people should be aware of. Because, as you said, many people, especially as kids, I’m a Gen Xer, but like millennials and Gen alpha, whatever they’re called, people younger than me, Dr. Martin Blaser is a brilliant person in this field. He did a study, probably 10-15 years ago, in nature that estimated that millennials and the generations after them, by the time that they had reached the age of 18, they’d had 20 courses of broad-spectrum antibiotics. And this is unprecedented in human history to have our to have to have our bodies shot through with antibiotics so much and often for no reason, for colds.
Lindsey:
I just don’t get that because, like my kids, have literally never had antibiotics other than my son, before I adopted him, they gave him a couple courses. But after that, neither of them, other than no, I think my older son, when he had his wisdom teeth out, I think it was two days’ worth.
Christian John Lillis:
I mean, I had scarlet fever when I was six, so I was given tetracycline. And, you know, before antibiotics, scarlet fever killed half the kids that got it. So having these things is really incredible, but they’re really being overused. Then what happens in a case like with penicillin is somebody was given antibiotics and they were a kid, they got a rash, they got some reaction. The doctor said, your kid’s allergic to penicillin. The parent tells the kid you’re allergic to penicillin, that kid then for the rest of their life, or that adult, then tells everybody they’re allergic to penicillin.
Lindsey:
Yeah.
Christian John Lillis:
. . . which is a whole branch of antibiotics.
Lindsey:
That’s amoxicillin.
Christian John Lillis:
It’s yeah. So then what happens? And I’ve talked to dentists who believe, like, right now, if you go to the dentist and they either think of an infection or want to ward off an infection, they’re likely to give you clindamycin, which is what my mother had. A much more powerful drug than penicillin.
Lindsey:
Yeah, or if you have a heart murmur, they’ll want to prophylactically give you that before you have treatment. But I think now that maybe the rules have changed.
Christian John Lillis:
They have moved back from that. And so people should again, my brother has a mitral valve prolapse, and for years he had to be premedicated for a cleaning. And so again, this is how we end up with people having 20 courses for no reason. So I do think, yeah, if you’ve been told you have an allergy to penicillin, you should investigate that as an adult, because if you don’t have it, there is a lot less risk.
Lindsey:
Yeah, but in terms of C. diff, are the broad-spectrum antibiotics like Cipro or vancomycin, clindamycin, are these more dangerous?
Christian John Lillis:
Fluoroquinolones are correlated, in the UK, the NHS, they did an antibiotic stewardship program where they restricted fluoroquinolones only for certain very severe infections, and they saw their C. Diff rates drop 80% throughout the system.
Lindsey:
Which ones are the fluoroquinolones? Is it Cipro?
Christian John Lillis:
Cipro is a fluoroquinolone. So moxifloxacin, basically anything that ends in oxacin,
Lindsey:
Okay.
Christian John Lillis:
Like Cipro is ciprofloxacin? Yeah. So all the -floxacins are fluoroquinolones.
Lindsey:
Okay.
Christian John Lillis:
Those are the ones to avoid. But, I mean, I think it’s just generally, if you don’t need an antibiotic, don’t take an antibiotic, right? Of course, yeah, if you do really need it, but there is just such overuse, particularly in this country.
Lindsey:
Yeah, and one of my mentors and people I follow in the gut health world, Lucy Mailing, she put out a recent article, and she said, if you’re going on antibiotics, my recommendation is taking butyrate daily, usually in the form of either like Probutyrate* (low dose for constipation) or Tributyrin ( high dose for loose stools). I can’t remember the dosage, but for me it would depend on whether you had loose stool or if you were constipated to begin with, I would probably suggest different dosages. But then to take Saccharomyces boulardii* two pills, which is 500 milligrams, three times a day, as preventatives, and that those can help you to avoid these kind of opportunistic infections while you’re on antibiotics.
Christian John Lillis:
Yeah, I don’t know.
Lindsey:
Do you have any suggestions in those areas based on your work?
Christian John Lillis:
So the challenge with supplements is that it’s very hard to know the quality of them, and so we kind of steer away from suggesting things. What we actually tend to suggest is that people try to get more probiotics through food. So like drinking kefir without sugar, low or no sugar yogurts, fermented foods, like you could be adding sauerkraut. So things that are going to give your body the building blocks and the good probiotics. Of course, you can always supplement them. But actually, one of our most popular articles on our website is how do you choose a good probiotic?
Lindsey:
Okay.
Christian John Lillis:
And I think that’s like, a very American thing where we want like, well, give me a pill that will solve my little, fix my stomach. And it’s actually, the best thing you can do is eat whole foods and things and we do have a lifestyle and nutrition guide. People that that have had C. diff have C. diff., as you can imagine, it’s difficult to eat when you’re that sick, but it’s really more about once you’re past the acute stage, how do you make yourself less likely to get it again?
Lindsey:
Yeah, so one of the one of the cycles that happens, you know, like when you have a gram-negative bacteria, which C. diff is [Lindsey: correction – C. diff is a gram-positive bacteria, I misspoke, but I checked in Consensus and it said that “Yes, butyrate shows protective effects in C. difficile infections, mainly by reducing inflammation and supporting gut barrier function, but it may also increase C. difficile sporulation and toxin release.”], is that you start to pull oxygen into the colon, and then it promotes the growth of these facultative anaerobes that can live in the presence of oxygen. And then you get more and more of them. So the butyrate turns that process around by feeding the cells lining the colon, therefore creating a hypoxic or oxygen-free environment in which those bacteria don’t thrive. So that’s one of the reasons that butyrate is protective in that scenario. I incidentally, have a butyrate product called Tributryin-Max.
Christian John Lillis:
I’m like, this sounds good. I want some. I’ve never heard of it before.
Lindsey:
Yeah, on a daily basis, it’s good for loose stool, or people who tend towards, you know, if you have, IBS-D, that kind of thing. So, so that was one of the things that anybody who has . . .
Christian John Lillis:
Where you when I was in college, Lindsey? I could have used the all the butyrate I could get when I was in college. I knew where every bathroom was between my house and the college and every one near my classrooms.
Lindsey:
Well, yeah, so because I gave it to everybody, I ended up making a product called Tributryin-Max. And it is a reasonably high-dose butyrate, so you don’t have to take so many pills. So anyway, you mentioned that people wouldn’t suspect that C. Diff was in a younger person. So is it primarily in older people then, like, who are hospitalized? Or what’s the typical . . .
Christian John Lillis:
So, historically, that’s true. Historically, C. diff was almost – what they used to call a nuisance disease, meaning that it wasn’t terribly fatal. But you know, you’re in the hospital, you’ve had surgery, now you have diarrhea all the time, like it just made life difficult and it did primarily affect elderly people and people with immune-compromised systems. However, that changed in the early aughts. It was first detected in Canada. So it’s called the North American pulse one strain, or the NAP1 strain, and that started showing up in Canadian hospitals in 2004 -2005 and it was far more virulent, meaning that it was much more toxic. It caused many more deaths, especially among the elderly, but it was also then increasingly seen in younger and younger people. So it’s thought now that the NAP1 strain is the primary strain that we see in the west. So that’s why you see so many more people getting it and getting sick. Over the past 10 or 15 years, we have also seen, and it’s hard to know, is this the disease, or is this changing medical practice?
But I think as more and more people are having outpatient surgeries, we are seeing much more C. diff that is community onset, where, like women who give birth and they’re released within 36 hours, and then two weeks later, because they had a C section, they were shot through with antibiotics, they now have C. diff. I hear that story a lot, so it really doesn’t discriminate. Like they’ve even done studies looking at Black Americans versus white Americans, and white Americans have a slightly higher rate of C. diff, and then black Americans have a slightly higher rate of poor outcomes. And I think in both ways, that’s sort of institutionalized racial capitalism, you know, which is like black people don’t get health care as often as white people do, so we’re going to have slightly more chance of a health-care associated infection once we get it, they get then get a poor outcome, because, again, they don’t have access the way that we do.
So it’s nothing to do with our race. It’s everything to do with society, right? But one of the things that has been concerning is that we are seeing it more and more in the community, and we’re seeing it among younger people, even children, and they haven’t necessarily taken an antibiotic or been in the hospital recently. And in my brain, there’s this big question of like, what is this change? Why are we seeing this? Has the bug changed? Is it that those people that had 10 to 20 courses of antibiotics as kids are now adults, young adults? You know what I’m saying. So, being older is a risk factor. Taking antibiotics is a risk factor; but it can happen to anybody.
Lindsey:
Yeah, yeah. And I’m sure that the compromised microbiome that is coming from, because I do see so many people with their comprehensive stool tests, and I see, you know, they have no Faecalibacterium prausnitzii which is one of your primary butyrate producers that sits in the colon. They don’t have any Akkermansia muciniphila, which eats that mucin layer and helps regenerate it and keep it healthy. So those two are working together. They’re in the colon, and they don’t have any of those. So obviously getting rid of the bad stuff, but then eventually you’ve got to rebuild the good stuff with prebiotics, things like, well, they love all the polyphenols, pomegranate and cranberry and matcha and things like that. So getting people on gut shakes and getting them eating beans and lentils so that they can build up those bacteria again. And now, of course, you can even get Akkermansia probiotics. So I see that a lot with people who’ve been through a lot of antibiotics.
Christian John Lillis:
Yeah, and I think, you know, we also have a ton of processed food that is impacting our guts, and, yeah, it’s calorically dense and nutrient light and so I think when you and I were growing up, a lot of our meals were cooked at home and using more or less whole ingredients. I mean, I know that that’s the way I cook, but I’m very lucky and privileged in that way, because I work from home.
Lindsey:
Right. No, the biggest problem, I think. I mean, obviously there are bad things in processed food and just sort of poor-quality food, but it’s just that there’s not nutrients. That’s the thing is, they’re not, right? If you look at, say, the typical school cafeteria, the vast majority of the calories are coming from gluten and dairy. They’re not getting a lot of vegetables and fruits or if they’re offering them, they’re poor quality, and students don’t eat them. So at the end of the day, these processed food diets are just simply lacking in the things that make you healthy.
Christian John Lillis:
Yeah, the kids are also shot full of sugar, and then they’re like, sit still for eight hours. Good luck.
Lindsey:
So what is the standard of care currently for C. diff?
Christian John Lillis:
So in reverse of this question, I was like, well, the standard of care is bad. But what I mean by that is, based on the clinical guidelines, most doctors will prescribe either Vancomycin, which, as we talked about earlier, has a 30 to 40% failure rate, meaning people get a recurrence, or Fidaxomicin, which has a lower failure rate, but it’s not as widely used. Vancomycin is completely generic now; it’s not on patent. Fidaxomicin is still branded, and it costs a lot more money, but it has the lower rate of failure, of having, like, maybe 10% of people have a recurrence. To me, it’s worth it.
Lindsey:
Yeah.
Christian John Lillis:
As a patient, it’ll also be worth it in terms of our healthcare system, because if we have fewer people’s recurrences, fewer people are spreading C. diff, etc., but insurance doesn’t want to pay for it. And then, besides that, you know, because I knew we were going to talk about FMT, but like, there’s a lot of doctors out there who, and it’s not just doctors, I don’t want to drag doctors – my father-in-law is a doctor. People get used to how they practice something. And so, you know, even before the FMT craze, like a lot of doctors are like, oh, you got recurrent C. diff, I’m going to give you 10 days of vancomycin. I’m going to give you 14 days of vancomycin. Oh, that didn’t work. I’m going to give you 30 days. And then a 60-day taper, where you take vancomycin every day every other day for 60 days.
And you know, there are doctors out there, that’s what they do. And the thing of it is, the whole time that’s happening, the person is suffering, you know, the person is worried about the C. diff coming back, or the C. diff is back, or, you know, they took their last vancomycin pill last night, and they know in the next three or four days, it’s going to come right back again. And you know, by the time you get diagnosed, particularly if you’re a younger person, like you might have been sick for weeks, you know, and now you’re going to spend the next three months being put on and off of antibiotics. And you know, if you think you’re going to have diarrhea, it’s like you don’t want to leave the house because you want to be near a toilet.
And obviously there are many people whose job involves them having to be outdoors, having to work someplace. I talked to a young man a few months ago who lives in Wisconsin, and he is an engineer who works on cell phone towers. Now imagine being worried you’re going to poop your pants, and you have to be outside in the cold, there’s no bathroom. So it’s a very torturous disease in that sense, and the guidelines don’t even suggest any sort of microbiome restoration until at least the second recurrence. So we’ve had people ask me, like, well, why don’t we just give everybody an FMT that’s ever had C. diff? And there are reasons why we don’t do that either.
So I think it’s a combination of what the insurance doesn’t want to pay for, and then plus doctor’s sort of clinical, habitual clinical practice. So this thing where people have to really advocate for themselves, because generally, you’re going to be given 10 days of vancomycin or fidaxomicin, and for 60% of people, that’s going to resolve it. It’s the other 30 to 40% of people who that’s going to be the beginning of a journey.
Lindsey:
Yeah. So, if people can do anything for themselves, the first thing would be advocating to get the Fidaxomicin?
Christian John Lillis:
Dificid is the brand name in the US.
Lindsey:
Okay, so advocating for that as your first line treatment because it has a lower recurrence rate, and then if it comes back, what do you think is the best thing from your research compared to what might be the standard of care of going back onto another antibiotic?
Christian John Lillis:
So when it’s an acute infection, right? So like when you’re having the chronic diarrhea, what you want is that antibiotic, and then what is going to follow that, that’s going to help restore your microbiome, right? So over the past 15 years or so, there’s been a growth in the use of fecal microbiota transplant. This is essentially taking highly tested for pathogens, for transmissible diseases, but minimally processed stool, like literally put in a blender with saline and then via colonoscopy or enema or, God forbid, nasal gastric tube, putting it back into your colon. And this is not a new idea. As far back as fourth century China, they were using some form of fecal microbiota transplant. It’s also used widely in veterinary medicine.
So basically, we’re giving you the stool of a healthy person to sort of kick start your own gut microbiome. So, but it was also hard to get because it’s considered experimental, for a whole host of reasons. Thankfully, in the past couple of years, we’ve had two FDA-approved, they’re called live bio therapeutics, LBP, Live biotherapeutic products, and one of them is basically a more refined version of the typical FMT. So they’re getting donor stool, they’re testing it highly, they’re processing it, making sure that it doesn’t have anything transmissible, and they’re sort of standardizing the dosing and stuff, so we know what we’re getting. That’s one option.
Lindsey:
Is it delivered by enema, or is this now a pill?
Christian John Lillis:
The first one that I’m talking about is delivered by enema. They are some doctors who are doing it via colonoscopy. Technically, it’s off label, but there are some that are; they’re studying it. There’s a paper out there that shows it’s actually even more effective when it’s done by colonoscopy, just because it gets where it needs to go, better than enema.
Lindsey:
And what’s that one called?
Christian John Lillis:
So the technical name is almost unpronounceable. So the brand name is Rebyota.
Lindsey:
Okay, yeah, I’d heard of that one.
Christian John Lillis:
We try to stick to technical names or not promoting products, but oh, the name, the names are bizarre. Like, it’s not like fidaxomicin versus Dificid. It’s like, LG, s, dash, j, i s, m, yeah, it’s a terrible name. Sounds like you’re speaking a different language, like I’m an alien. And then, as you’re starting to say, after Rebyota was approved, they approved another drug called Vowst. And Vowst is a pill form, and Vowst is also, where Rebyota is sort of the whole, you know, again, more processed, more tested version of a standard FMT, Vowst is actually selected like they’re using specific Firmicutes. And so when you take it orally, it’s designed to store that, by the time it gets to your colon, and the capsules release, it then sort of seeds your gut and helps your gut to restore itself. Neither I nor Peggy Lillis Foundation have any opinion on which of those is better for you, or if you need a standard FMT, which for people with severe and fulminant disease, they may need a standard FMT. Because if you’re that sick, you can’t wait for the pill. You take the pills like over three or four days, you need something more immediate.
So, but what we do think, what we are happy about, is that there are now options, but right, like any new drug, they are more expensive. You are going to have to fight with your insurer to get it covered. We are advocating for greater access to the extent that we can, but it’s the kind of thing where, you’re going to have to go in there and – but if I had C. diff, and if I had a recurrence, I would go to my doctor, I’d say, okay, so I want fidaxomicin, and then I want either Rebyota or Vowst, you know, depending on what we think is best, because I don’t want a third recurrence.
Lindsey:
Okay, so what was the success rate with FMT prior to these other options?
Christian John Lillis:
So NIH did a prospective study in 2021 of 229 patients who are part of the national fecal transplant registry, which is run by the American Gastro Association, and they found that about 86% of people had a sustained cure of between one to six months. Some of them missed the one-month visit. So the data is just a little skewed there. I do think I hesitate to directly compare antibiotic treatments versus FMT because when we’re getting down to people getting FMTs, and some of these were in pill form, some of them were enemas, and most of them are colonoscopies. You know, we don’t really know the exact mechanism of why an FMT works, right? Like, I mean, we know that it’s that we’re replacing bacteria, but not exactly which bacteria you know.
Lindsey:
It needs to be different because it’s coming from a different donor.
Christian John Lillis:
Yeah and what we do know is that, and something that you know you’ve been talking about from your own perspective, is a healthy microbiome is a diverse one, right? You know that has a lot of different ones, and oftentimes, when you see people who are very susceptible to C. diff, they have low species variation, you know they’re missing something. So then, of course, if you look at different cultures in Asia, their microbiomes look different than Western microbiomes, but they’re both healthy microbiomes. I’m talking about a healthy microbiome, not one that’s degraded, right? So we’re not giving FMT to two thirds of patients who’ve responded to the antibiotics to begin with, so the 86% rate, it’s great for people that have recurrence, but it’s just hard to directly compare the two, and especially because you’re going to get antibiotics before you get either of them, right?
Lindsey:
So the standard of care is – how many courses of antibiotics do you have to try before you can access FMT or one of these other pills or other treatments?
Christian John Lillis:
And so typically, your second recurrence.
Lindsey:
So you have to have two courses of antibiotics before you can get a hold of these other treatments?
Christian John Lillis:
Well, three, because before they give you one of these, they give you antibiotics to reduce the acute infection, and then . . .
Lindsey:
. . . they give you that, okay, but you’ve failed antibiotics.
Christian John Lillis:
Yeah, the FDA actually lists them as preventatives, not treatments.
Lindsey:
Okay, so in theory, you could get them sooner.
Christian John Lillis:
No, no, okay, it’s the prevention of recurrence. It’s like, do prevention of recurrence, right? Yeah, it’s just, it’s a weird thing.
Lindsey:
Okay, and what about the success rate with with Rebyota and Vowst, do they have any data yet?
Christian John Lillis:
They both do. I don’t work for either company, so I tend to stay away from those things. They both do have good efficacy, and they both have very minimal side effects.
Lindsey:
And are they pretty accessible, like, whereas it used to be. I mean, you’ve got to find somebody who does fecal transplants and all that. Like people have trouble sometimes finding that. Does every hospital do that at this point?
Christian John Lillis:
Yes and no. So they are so in my world, in the way that I always saw this from the time that we started really hearing about FMT in 2011 and 2012, sadly, too late for my mom, but I always imagined it as like an interim step, right? Like there was a period. And there are places now where, you’ll just get a whole blood transfusion, right? But there are also things where, like, you need platelets, you need volume. So I kind of imagined, eventually they would figure out, and they would have different options for whatever was going wrong with you. Like, not just for C. Diff, but then, what are the other applications? Right? So both Rebyota and Vowst are out there. They can be prescribed. They’re easy to order.
Typically, a gastroenterologist would perform, especially if it’s enema, or if you can get them to do in a colonoscopy, when it’s with Rebyota and then with Vowst, because it is pills, it’s even easier, because you just take them while you’re home. You know, right? In terms of the patient, the difficulty is getting them covered, right?
Lindsey:
Yeah. And if they’re not covered, how expensive is something like Vowst?
Christian John Lillis:
So the list price for Vowst is $17,500.
Lindsey:
Oh, my Lord.
Christian John Lillis:
And for Rebyota, it’s just under $10,000. That said, both companies have really good patient assistance programs, and we’ve worked with a lot of people where, if you’re uninsured, they’ve given it for free, they’ve waived the copay. So they’ve really been trying to work with people, because they also understand that a lot of times, if you’ve had recurrent C. diff, like you might not have been able to work, like people lose their jobs with this disease, you know? And then I think some of it is like you have to fight with your insurance company a little bit, like you have to be willing, and if you’re not well enough, then have somebody who can do that for you.
Lindsey:
Yeah. Time is of the essence. So a lot of times, insurance companies sit on these decisions for a while. So it’s like, you get it and then you fight, or what?
Christian John Lillis:
Sometimes that happens. Yeah, sometimes that happens. And then, you know, you might get a bill, or threaten and you have to fight because it should be covered. I mean, this is, again, something that we’re also working on as an organization in terms of advocating, because, like I said to you $17,500 and you’re like, whoa, right, that sounds like a lot of money. In terms of our healthcare system, which is like $3 trillion a year, it’s actually not a lot of money.
Lindsey:
A day in the hospital is what, at least 10,000 I would think, right?
Christian John Lillis:
But if you end up hospitalized with C. diff, the average hospital stay for C. diff is going to be $70,000.
Lindsey:
Okay, exactly so it’s in their interest, to some extent, to make sure you get better.
Christian John Lillis:
And my mother, who died, like the cost of her being hospitalized, having surgery and those treatments for 36 hours was over $70,000 and she died. So this may be for a separate conversation, but one of the things that I feel like in this country, in particular, but in the west more generally, is that we think we’ve conquered infectious disease, and we think that everything related to it should be cheap. I think HIV might be the exception, right? But, like, we want a free flu shot. We wanted this, you know, like, ever since they stopped giving away the Covid vaccines for free, uptake has dropped precipitously, right? And my feeling is like, if this was cancer, if it was heart disease, if it was a joint replacement, nobody would – five figures, nobody would even blink their eyes. But an acute infectious disease, people are like, well, $10,000? It’s like you’re saving somebody’s life, like it is literally a life-saving treatment. Do you know much money I would have paid to have my mother live?
Lindsey:
Of course. So I know that in the early days, people were just getting fecal transplants from a family member, but they were doing it in the hospital. Are they still doing that?
Christian John Lillis:
That is still an option. There are still some doctors who offer that. That is probably going to be an option for people who have severe inflammation disease. Also, perhaps it will be an option for kids, because, unfortunately, neither of these products is approved for pediatrics, and so that’s something that we have been and we’re continuing to advocate at FDA to figure out, like, can we carve out an exception where FMT could be used more broadly in kids, because these drugs are not approved for them.
But, you know, it, it’s a sticky widget because the FDA, yes, they take public commentary, yes, they use this, but like, they’re kind of oblique in terms of why they’ve decided, what they’ve decided, right? And I don’t think that they take into account the sort of public health impacts and population health impacts of their decisions. Like, if you even mentioned the cost to them, they won’t talk to you about it anymore. But it’s like, we live in a for profit healthcare system; cost is going to matter.
Lindsey:
Yeah. So yeah, I guess that that leads me to the final question, which was, what are the current obstacles in the world of C. diff advocacy, and how could my listeners be of help?
Christian John Lillis:
So I would say we have two primary obstacles. The first is low public awareness. You know I talked to you earlier. I said HIV. There have been studies. 85% of Americans know what HIV is, only 30% have heard of C. diff. Oddly, 95% have heard of Ebola because there was a movie about it with Dustin Hoffman in the 90s, right? Everyone’s seen that movie. So being that there are many other things that people are much more aware of, including Zika, which, yes, I don’t want to malformed baby, but like, it’s not killing people. You know what I’m saying? A lot of it has to do with the press. And I think because this was historically a disease of old people, we’re not great to elderly people in this country. Like, we should just be really clear about that.
So I think if you’ve had C. diff, or a loved one has had C. diff, getting them to talk about it, being open about it, sort of forgive the language, but like coming out about it. And I think because the primary symptom is diarrhea, people are embarrassed. But it’s like, if you needed blood transfusions, would you be embarrassed? You know, you’re just sick. Like us having a poop thing is, like, that’s just us being weird. You know, you said you have kids. I’m the oldest of 19 first cousins. I have a six-year-old nephew. I’ve changed many, many diapers in my day. Like, there are lots worse things than poop happening in the world, so awareness!
And then the secondary thing is that I think this is applicable to a lot of infectious diseases, is that people get treated for it, and then they forget about it, and they don’t think about all the other people who weren’t as lucky as they were. And so what we noticed is that people who have had recurrences that have lasted for months or years, they’re the ones who join us, become volunteers, stay in the fight.
But if more people, people listening to you, who have had C. diff maybe, maybe it was cured in a couple of weeks, like if they signed up for our mailing list, wrote their congressperson, shared stuff on social media. Though I’m not crazy about social media lately, but if they were just more open about it and talked about it, that would be very helpful, because, and I understand, like who wants to think about the last time they were sick? But this is a disease that we’re increasingly building the tools for and getting more tools for it, but no one knows the tools, because they don’t know the disease exists.
Lindsey:
Is there a C. Diff Awareness Day?
Christian John Lillis:
November is C. Diff Awareness Month?
Lindsey:
Okay.
Christian John Lillis:
C. diff campaign the entire month of November.
Lindsey:
Okay in November I can relink to the episode.
Christian John Lillis:
Yeah, those are the two biggest ones. And then there are things that are downstream from that, you know, like, there’s not adequate public health funding anywhere in this country. So any communicable disease we struggle with, I think asking your hospital or the place that you get healthcare, like, what their infection rates are, just to keep them thinking about it. Because I work in this world, and I’m sure you have something corollary, but like, there was just pre-Covid, like in 2018 and 2019, they were finding people were getting CRE [Carbapenem-Resistant Enterobacterales], which is a very antibiotic-resistant, dangerous infection, and they were getting it from colonoscopy and endoscopy scopes that weren’t properly cleaned.
And so I had to have a colonoscopy/endoscopy. I called the doctor’s office like three times, and I was like, and how are they cleaned? And who cleans them, and how are they packaged, and who opens the package? And, I mean, I went, but the point is, more people have to question, do I need this antibiotic? What is it for? You know, have you isolated the infection? What do you think I have? You know what I’m saying? And worst of all, if you’re sneezing and you’re coughing or whatever, and it’s cold and flu season, do not go and ask for an antibiotic.
Lindsey:
Yeah, that’s viral. It’s not bacterial. Will not help.
Christian John Lillis:
I mean, you know, if it persists for more then we can go to the doctor and say, like, test, you know you can, they can test you, but have them test you. Yeah, you know exactly right? Don’t assume it’s strep throat, because you woke up with a sore throat one morning. Maybe the heat was on too high the night before; you slept with your mouth open, I don’t know.
Lindsey:
Postnasal drip and it made your throat sore. You have acid reflux or a lot of other reasons, right? Okay, so where can people find Peggy Lillis Foundation?
Christian John Lillis:
So we make it really easy for you. You can obviously Google Peggy Lillis Foundation. We’re pretty easy to find. It’s very uncommon last name, but you can find us at C. diff.org.
Lindsey:
Oh, okay, great.
Christian John Lillis:
And then on most social media, if you look up Peggy Fund or just look up Peggy Lillis, we’ll come right up.
Lindsey:
Okay, great. Well, we will link to those in the show notes. Thank you so much for sharing about this. This is a topic that’s long overdue for this podcast.
Christian John Lillis:
I know it’s interesting that you guys hadn’t tackled it yet, but, but you’ve been tackling a lot of stuff that other people are not talking about. So good for you. And I’ve been listening, and I’m going to go back and listen more, because obviously we both care a lot about gut health.
Lindsey:
Well, thanks.
Christian John Lillis:
Thank you for having me, Lindsey
Lindsey:
My pleasure.
If you’re dealing with gut health issues of any type (diarrhea, constipation, bloating, SIBO, IMO, H2S SIBO/ISO, IBS, IBD, gastritis, GERD, H pylori, diverticulitis, candida, etc.) or have an autoimmune disease and need some help, I see individual clients to help them resolve their digestive issues or reverse autoimmune disease naturally, You’re welcome to set up a free, 30-minute breakthrough session to see if you’d like to work with me. I also have my own two products, Tributyrin-Max, which is particularly helpful for loose stool and diarrhea as it slows your motility and firms up your stool, and SBI powder, which is an all around gut pathogen binder, which is super safe and won’t harm beneficial bacteria, and is usually the first line of treatment I educate my clients about in order to avoid stronger antimicrobial herbs.
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