In this episode of theHoly Gut Health podcast, we interview Rita with her daughter Tamar who came from the United States to have the FMT treatment. We discuss the health problems, the decision-making process she went through to decide to have the FMT treatment, her inital concerns, the experience of the procedure and more.
Nick: Welcome to episode three of The Holy Gut podcast. In this podcast, we will discuss the FMT program with Nicole, who is the practice manager of Moonee Valley Specialist Centre, Jody, who runs the FMT program, and Rita along with her daughter Tamar, who came all the way from the United States for the treatment.
Nick: Hello. It's Nick Kemp here, co-host of the Holy Gut podcast with my co-hosts, Dr. Nathan Connelly and Nicole Starbuck-Connelly. Nathan is a gastroenterologist, and Nicole is a registered nurse and practice manager of the Moonee Valley Specialist Centre here in Melbourne, Australia. Moonee Valley Specialist Centre provides a number of services related to gut health, including FMT and bowel cancer screening.
Nick: As mentioned in the introduction, I'm here with Nicole, the practice manager and owner of Moonee Valley Specialist Center, Jody, who manages the FMT program, and mother and daughter Rita and Tamar, who came all the way from the U.S. for the FMT treatment. Rita, you came over here for the treatment. Do you want to begin by telling us about your health problems?
Rita: Yes. I have multiple sclerosis, and my daughter Tamar heard something that this FMT works on people who have this disease. After telling me that, I did my own research a little bit. I read that this FMT, this gut problem, has a lot to do on many diseases, actually. I knew that I have a gut problem because I experience constipation, sometimes diarrhea, so I have this problem. So I said, “why not try this one,” because I've tried every single medicine on the market for MS. None of them worked on me.
Nick: I see. So you try lots of other treatments, lots of medication.
Rita: Lots of medications, which they had very bad side effects, and I want to try this one. At least I know that it's not going to harm me.
Nick: Okay. I understand. So your daughter Tamar was really the driving force behind suggesting to you and maybe encouraging you to try FMT. Tamar, do you want to talk about how you stumbled across FMT?
Tamar: Sure. This was really the culmination of several years of research on my part. I had observed my mom try all of these different drugs that are available on the market, incredibly expensive drugs, and she used every single thing. She did all of the treatments that the doctors prescribed and recommended, and none of it seemed to be stopping the disease in any way, shape or form.
So I went to the Internet, essentially, and I started researching. I literally Googled cures for multiple sclerosis, and I stumbled upon a medical article that was published by an American scientist in one of the universities in California talking about the connection between multiple sclerosis and gut bacteria. They had done some research with rats or mice, and they had seen that there were differences in the gut bacteria of mice that had multiple sclerosis versus the mice that did not. But that research didn't go anywhere. They basically published that article, and then there was nothing being done about it, which was really frustrating to me, at least in the United States.
Tamar: So then, that led me to do further research about multiple sclerosis and gut bacteria, and then I stumbled upon some further articles, a publication that came out of Sydney. It was basically, serendipitously it seems, three patients had gone in for gut treatment problems like constipation and whatnot, and their multiple sclerosis symptoms improved after that, after getting the FMT treatment, which then made me research further and further to see if that's being offered.
Tamar: Then we found out that in the United States, the FDA has basically banned doctors from doing this procedure on anybody that does not have C. difficile. That is the only medical illness where that's allowed, and none of these other illnesses that could benefit from it, the doctors can't do anything about it. They are allowed to advise you on basically do it at home type of procedures. They can help you with that, but they can't do the colonoscopy for you. They can't do the enemas for you. All of the things that need to be done that you would hope would be the most effective, they're not allowed to do in the United States.
Tamar: So then I started researching, where can we get this done? Where can we try this treatment? And then I stumbled upon another website, which was The Power of Poop or something like that, and they list a whole list of doctors throughout the world who do this treatment. Now, not everybody is allowed to do it for anything other than C. difficile. For example, Canada, the United States, those are all C. difficile. But in other countries such as Australia, the Moonee Valley Specialist Centre was listed as providing this treatment.
So then I started reading up. I went on their website. I talked to my mom about it. I said, “You know, let's do our research. Let's call up. Let's see if maybe this is a trip that we should be taking.” Because it is pretty daunting, if you think about it, to take a 16-hour journey all the way from the U.S. to Melbourne. My mom is handicapped. She's in a wheelchair. She needs a hoist. These are all big things, and we need to make sure that this is going to be worth it.
Tamar: We talked to the doctor, and he was great. He was fantastic. He said, “We will offer you this treatment. You've tried everything else. We shouldn't be denying you this opportunity to see what happens with you, and we will make the effort to make sure you have your hoist so we can transfer you.” We'll make sure the hospital that was used, that they are going to be able to accommodate my mom's needs. That's why we made the journey up here, or down here, I guess, and we don't regret it. It's been tough, but it's been a great experience.
Nick: I see. So, if we summarize, in the States, you were at your wit's end. You were very concerned about your mother. You were obviously spending a lot of money on medication. I think in Australia compared to the U.S., our medication is far more affordable, so I think you could have been spending hundreds of thousands of dollars on medication. And you heard about this treatment. It's something you wanted to explore, but obviously, because of the FDA in America, doctors hands are tied. They can't provide the treatment, so you explored whether or not you could do it outside the U.S., and you found that Australia was an option. And then you were willing to obviously invest the money and time to try the treatment.
Rita: May I say something?
Rita: Money is not the reason I came here, because I have insurance over there. I was not paying a dime for those medications.
Nick: I see.
Rita: But I can tell you how much that medication, the recent one that I was using, how much it costs. It's $69,000.
Rita: $69,000 for six months.
Nick: How can a treatment be that expensive? Gee, that's ...
Rita: That's the U.S.
Nick: That's crazy.
Tamar: Well, you've got insurance companies, pharmaceutical companies, the FDA. There is a lot of red tape, a lot of bureaucracy, a lot of moving parts happening there that make it difficult. There are phenomenal scientists and doctors there. Everybody wants to help patients. They want to do things, but when you've got all these different organizations money ends up being a huge factor, marketing drugs and whatnot. I wouldn't be surprised if at some point if this were to be approved for illnesses other than C. difficile, that they are going to try to put it just in pill form so that they can charge a lot of money for a pill versus doing actually FMTs. I wouldn't be surprised if that is what is approved and not the actual FMT process. It would be phenomenal if they can approve the FMT process, but who knows?
Nick: Okay. If we go back to the FMT procedure, when you first started reading about it, how did you both react to the idea of the procedure?
Tamar: There's a definite weird and yuck factor to it, but [inaudible 00:09:50] the research ... Rita: I didn't want to [inaudible 00:09:53].
Tamar: Yeah. In the beginning, my mom was very, very hesitant about the whole idea, especially if we didn't leave the country, then we would have to do it at home ourselves. So there was a lot of hesitation around that.
Nick: Now that Rita, you have had the procedure maybe several times, how was it for you?
Rita: It was very good, actually, because they made me very comfortable here in the office. For colonoscopy, I cannot say ... Well, actually, I was very comfortable with colonoscopy, with the anesthesia, with the procedures here in the office. It was very comfortable for me.
Nick: That's positive. You weren't embarrassed or a bit scared?
Rita: No. I was not scared. I was not embarrassed because they made me laugh all the time, so I was not embarrassed in any way.
Nick: That's wonderful to hear.
Rita: Yeah. They are great people here, Nicole, Jody, and the doctor, Dr. Connelly. They are so great.
Nick: Tamar, what about yourself? Obviously, being Rita's daughter, you would have had concerns about the procedure.
Tamar: Did I have concerns about the procedure?
Nick: Yeah, did you have concerns? Any worries?
Tamar: Honestly, considering the fact that my mom has used drugs with such side effects that are still on the market that can even kill you, that can cause all sorts of damage to your organs, in light of the fact that she has had to use those drugs, I did not have any additional concerns about this procedure because we've tried everything else. So it was a risk worth taking.
Nick: I see. Nicole or Jody, is there something you would like to add?
Nicole: I would, actually, because Nathan always has initial conversations with patients to determine whether they are going to be appropriate people to have the treatment, and there's a lot of things that go into that. And then we make sure that we have followup conferences with these patients, often through Skype, to make sure that we get to know them and they get to know us as well. I know that when Rita first made her decision to go ahead with the FMT program, and Dr. Connelly asked me to start the process rolling, it was a challenging process for me because we hadn't had a patient like Rita in our clinic before. It seemed like it was going to be quite difficult for us with the hoist involved and managing everything that we had to manage from our end. But honestly, this has been really good for us.
Nicole: I'm a registered nurse, and Jody has done nursing in her past as well. I think that's been really, really important for us in the practice because as I'm sure you can appreciate, the whole FMT process isn't just about what a doctor can provide. It's about what a clinic can provide. It's important for us to make sure that we see each and every patient as someone's family member and as someone who is potentially going to be embarrassed and upset about a procedure. Likewise, that's to do with all of our patients that come to the clinic. But I think that we've made a lot of progress in this, and I think as a team we've done a really good job. And I think as a team, when I talk about team, that team is not just Nathan and Jody and myself. We have reception support, and our team includes Rita and Tamar as well. We've all had to work together, and it's been a really great time. It's unfortunate that they have to go back.
Nick: I see. So with the procedures, there's also a level of service and care that you value, and as you just mentioned, you're not just providing a service. You're actually working with your patients, in this case, Rita and Tamar, to make sure they're happy and comfortable and they sort of experience something positive and that will hopefully deliver the result they want.
Tamar: Yes, and they've actually shown a great deal of humanity in this. It's not even just about doing a medical procedure. There was a lot of humanity involved in this. There was a lot of kindness and compassion involved in this with everybody here at this office. That is something that's absolutely priceless and can't be found just anywhere, so that's very, very special. I will even give one example. We had a couple of problems with the hoist that had been rented here, and Nicole and Jody tried very hard to [inaudible 00:15:18] get them replaced and make sure we got the right equipment. Jody even used her own personal car and drove all the way to the city with me. We picked up the right hoist, brought it back, just so they could do the procedure in a timely manner. That is not something you would find in every single medical office. These folks have gone above and beyond in treating us with kindness and compassion and care, and that's just something... Like I said, it's absolutely priceless. There's no amount of money that can compensate for that kind of humanity.
Nick: That's certainly pleasing to hear. Going back to you, Tamar, you did a lot of research on FMT, and I'm sure there are people out there who are considering the procedure. Do you want to touch on the amount of research you did and why you believed in FMT as a possible solution?
Tamar: Sure. I did an extensive amount of research. Like I mentioned before, I stumbled upon actual scientific articles, some published in the United States, about the connection between gut bacteria and multiple sclerosis, which is the disease my mom has, so that's what's of interest to me as something that I would like to see a cure for that we haven't yet seen a cure for and we were hoping that there would be. In that research, I've also discovered that this idea of using FMT on multiple sclerosis is being taken seriously now finally for the first time, also in the United States, in the sense that I know that the University of California in San Francisco has now started researching the impact of using FMT on people with relapsing-remitting types of multiple sclerosis. They are not doing that research yet on secondary progressive multiple sclerosis, which is the type my mom has, so that's not available still in the United States. But it is hopeful to see and find out that it is being taken seriously, not just in one part of the world or a couple of parts of the world, but hopefully universally. So that's what's going on, and we're hoping they will continue to do the research and work on people and that people will have access to treatment that they need and deserve.
Nicole: It will only be a matter of time before everything starts to get looked at seriously and they take FMT seriously, which by the way, has been going on since at least the 1980s in Australia, and a lot longer if you look back in other cultures. Unfortunately, in the meantime, there's not many avenues that people can go to, and I think people doing things at home can and always will be a little challenging because if you're not given the right information, there are a lot of ways that you can do things wrong. So I think it's important that if you are going to look at doing things at home [inaudible 00:18:26] that you have the right training, which of course, we are also able to give because we've narrowed our program down to a fine art.
Nick: Okay, Nicole, a few questions about that. With FMT becoming more and more common, and I guess an increase in demand in Australia, do you see the procedure eventually being controlled to the point where it's going to be more difficult for you to provide it, let's say in the next couple of years?
Nicole: Yes. That started to happen last year. There's been a lot of conversations about how FMT is being classified at the moment in Australia. It's not currently classified as anything, and as Tamar mentioned before, Australia followed suit with the United States and clostridium difficile. The treatment of recurrent clostridium difficile is still gold standard to have the fecal microbiota transplant. Unfortunately, everything else [inaudible 00:19:32] is experimental. And the Therapeutic Goods Administration, which is basically Australia's version of the FDA, are not sure whether to classify it as a drug or as an organ or as something different. I think this conversation was started in October 2018. Unfortunately, Nathan and I were unable to be at the conference, but we have spoken to numerous doctors that were at that conference. I guess it's important for us to maintain a little bit of ... independence I guess is the wrong word, but a little bit of our own flair on things, because when things start to get regulated too heavily, unfortunately, patients miss out.
Nicole: I guess the flip side to that is that maybe there are some doctors that are not doing things the way that we do things. We screen very heavily. We are careful with the patients that we allow to have this done. But the bottom line for us is not about a financial gain. It's not about a status to be held in society. It's about the fact that we have a desperate patient in front of us, and it's not the right thing to say no. This is for right or for wrong, how we run our practice.
Nick: You mentioned that obviously, somebody could be listening to this thinking maybe I want to try this treatment, and you're offering, obviously, a solution. And as you just mentioned, you have a general concern and care for your patient above anything else. But there might be someone thinking, well, I'll try this at home, which I find hard to imagine. But people actually do that, don't they? They do try and self-medicate or self-treat.
Nicole: They do. Yeah.
Nick: What's the problem with that?
Nicole: I guess the biggest problem is that they may not be choosing the right donors and that they may be putting themselves in harm, and that's really important to get around that issue. We don't just offer a one-off FMT program. In fact, we are very strong in this matter, and I won't do it as a one-off because I think that it really needs to be run as a program. If we do have a patient that has a one-off FMT via colonoscopy, it's very important to our practice that everything is managed over a 12-month period so that there are appointments in place and that patients know that they always have us to come back to at the end. That's been something that we've learned along the way, and that's what Jody has been really important with her part of everything and making sure that all of that happens and helping me create the best program that we can create, which is always a work in progress. We are always happy to talk about better ways to run the program, but we think at the moment that it's run quite well and quite patient-focused because no two patients are the same.
Nick: Okay. So you're basically saying you don't have people come and do the procedure, then get them out the door. I believe you do several procedures, and then obviously, you'll have aftercare. And you're also wanting to improve your service and procedure.
Nicole: Yeah, absolutely. It's all individual. It's not like there's just a way of doing it, and every patient gets the same thing. Everything is decided on a case-by-case basis with the doctor, which of course, we will speak about in a different podcast.
Nick: I see. I think we've covered quite a lot, and we are almost at I guess about 20 minutes, so maybe we should wrap up. But I would like to wish Rita and Tamar all the best, and I hope they also enjoyed their stay in Melbourne, Australia. Is there anything else that you would like to say, guys?
Rita: We are very happy. Actually, I am very happy that I came and I tried this FMT. It's my first clinical trial. To me, I feel that I am in a trial because I don't know what it's going to do for me. But even if it does, I know that it's going to take a long time, like months maybe, to work on me because I have secondary progressive MS and I have had this disease for 42 years, actually. I am very happy that I am here. I now know these amazing people, and I am very happy with my treatment.
Tamar: And Melbourne is a great city, so we're happy to have visited on that end as well.
Rita: And now I am planning maybe to come every year.
Nick: I was just going to say I hope you guys come back again, but just for a holiday rather than for a treatment.
Tamar: That would be great.
Nick: Thank you so much for joining us.
Rita: Thank you.
Tamar: Thank you.
Nicole: Thank you.
Nick: This episode of The Holy Gut podcast was sponsored by the Moonee Valley Specialist Centre. For more information about Nathan and Nicole, please visit mvscentre.com.au. If you have any questions related to gut health that you would like answered on the podcast, please let us know via the contact form at mvscentre.com.au.