Q&A: DIY fecal microbiota transplantation a risky game of ‘Russian roulette’
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Despite the availability of fecal microbiota transplantation and FDA-approved live biotherapeutics for recurrent Clostridioides difficile infection, some patients have turned to risky “homebrew” methods to correct their gut microbiome.
“FMT homebrew is a fecal microbiota transplant that is performed at home,” Paul Feuerstadt, MD, FACG, AGAF, assistant clinical professor of medicine at Yale School of Medicine and attending gastroenterologist at PACT Gastroenterology Center, told Healio. “An individual goes to the internet or YouTube and obtains information on how to perform a fecal transplant on themselves, most commonly via an enema. Essentially, they follow directions that are listed and perform a transplant with stool from somebody else.”
In a previous interview, Feuerstadt expressed concerns about the risk for perforation and potential disease and pathogen transmission with FMT homebrews, as well as other side effects such as distension, bloating, constipation, diarrhea, fatigue and chills.
In an extended interview, Healio spoke with Feuerstadt about FMT homebrews, the associated risks and how clinicians can approach conversations with patients who want to perform the procedure on their own.
Healio: What is the appeal of trying a homebrew FMT vs. going to a clinic?
Feuerstadt: In this day and age, a lot of the information circulating via the internet is questionable, and people do not know the true source of that information. There is a lot of information out there that might be incorrect.
But there is a lot of correct information, too. There is information as it relates to microbiota restoration therapy — that it might help a variety of different diseases and this procedure gives a lot of people hope, when all other providers have said, ‘No, there is nothing else that I can do to help you.’
There are a lot of people with conditions like leaky gut syndrome, refractory irritable bowel syndrome or other diseases and disorders, specifically things like neurologic diseases with no FDA-approved products for microbiota restoration. The potential microbiota restoration products are in either an early phase or nonexistent for these treatments where we are still defining the dysbiotic state and the microbiota.
Yet people will read online that there is an altered microbiota, and they want to correct that, so they do a home brew.
Healio: Are there indications other than C. difficile that homebrews are being used for?
Feuerstadt: There are several different disease states that people are using homebrews for. Ulcerative colitis is a big one, because we do know there are signals for alterations in the gut microbiota in patients with UC and these patients want to try to minimize their medications.
A lot of people also think there are connections between the microbiota and Alzheimer’s and Parkinson’s disease, among others. With these disease states some hypothesize that gastrointestinal microbiota alterations contribute to the clinical presentation. Therefore, some believe the microbiota problem potentially can be corrected with fecal transplant, and homebrew is the only method they could have now, because there are not a lot of clinical trials in a lot of these spaces. There are clinical trials in UC, but not in a lot of the other spaces.
People want to try to get these disorders corrected in a short and an expedited manner and a homebrew is one route they can take.
Healio: What specific resources are people using to research homebrews?
Feuerstadt: Any resource we go to for anything else is a resource for things like this. YouTube is one of them and also Facebook groups, specifically those that are devoted to various disease states and groups that look at functional diseases, including things like IBS and functional abdominal pain.
These are the resources that patients are using for the “how to” and to determine what the deficiencies might be. It is important that we, as clinicians and patients, take a step back and say: Where am I getting my information from? Has the problem been defined?
One of the biggest challenges with FMT is originally we put the cart before the horse. With C. difficile, there was an initial trial that showed that there was a deficiency in the microbiota, and we knew that antibiotics impacted the microbiota, leaving patients susceptible to C. difficile. So, it was logical that if we theoretically replaced what was deficient, patients wouldn’t get a recurrence of it in the future.
The problem was that then we said, ‘OK, there are several other diseases that we think might be associated with microbiota. So, let’s just treat it.’
However, in a true scientific process, we would define the problem and once we define the problem, we look for ways to solve it. That’s where we get into the more sophisticated approach of microbiota restoration therapy or precision restoration therapy, where we know what the problem is and we only define and try to restore that problematic element of the microbiota. If there is a deficiency, as is the case with C. difficile, Firmicutes and Bacteroides, we replace that.
Healio: What are the risks associated with FMT homebrews?
Feuerstadt: Homebrews are very risky because we are not screening the donors. We can say that someone looks healthy, but we don’t know what underlying autoimmune processes they have. If they are young, autoimmune processes may not have been fully developed yet and haven’t clinically appeared. Also, they might have risks for various malignancies over time.
The microbiota in these individuals is really not defined. They haven’t been screened for various things like HIV, hepatitis B or hepatitis C, or some other elements and infectious pathogens that could potentially be transcribed. Escherichia coli has been transcribed in people who have been screened for various things from stool from a major stool bank.
When you use a homebrew, it’s really a bit of Russian roulette. We essentially do not know what the risks are associated with the donor in that circumstance, and we don’t know what we are administering in terms of microorganisms from that donor.
One of the benefits of the FDA-approved live biotherapeutic products is not only do we know that they are safe and they have been comprehensively screened, but we also know the consortium of microorganisms that we are administering. That results in a more consistent effect. With a homebrew, we do not know what we are administering and we do not know the safety of what we’re administering. There’s a double-edged sword there and that is high risk to the recipient.
Healio: What advice should physicians give patients who are thinking about this?
Feuerstadt: What I say to patients is: Let’s look at the data. Let’s look at the literature and let’s understand it together. Typically, I will go to PubMed, and I will pull some manuscripts relevant to whatever disease state that patient is inquiring about with regard to fecal transplant.
When they come to me, they are expecting either a standardized fecal transplant from the stool bank or a live biotherapeutic product. As a policy, I do not administer fecal transplants outside of standard FDA indications or enforcement discretion, which would be for the prevention of recurrence of C. difficile. I share that with patients.
If our center isn’t running a clinical trial, then I would advise them to try to find a clinical trial. At our center, we run UC trials looking at fecal transplants and we are starting to expand some of the offerings we have available to other disease states that might be exploring this, including IBS.
Healio: What else should our readers know about homebrews?
Feuerstadt: I think that homebrews are dangerous. We really need to be mindful as clinicians to advise patients to not play with an organ — the microbiota — that we are just starting to learn and fully appreciate.
We need to advise patients that need to understand not just which microorganisms we are transcribing but how that metabolically impacts the patient. We do not necessarily care which microorganisms are in their system: We care about the orchestra, all those microorganisms working together, how that metabolically changes the environment within their colon and how that metabolic environment in the colon interacts with the rest of their body.
There are fascinating signals with regard to depression and the metabolic environment in the colon. We are just starting to scratch the surface understanding the impact of this and if we do a homebrew, then we could metabolically change a lot of things that we don’t necessarily intend to change. For example, if we are looking to change just the environment for UC, we might also alter the patient’s mental status and their ability to focus or concentrate.
These are all things that we’re just starting to unlock and understand, but it really is in its infancy at this point.
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