I've dealt with IBS symptoms for 17 years. I would love to try one of these pills. Digestive maladies can really hamper a person's life. The digestive system is poorly understood, and there aren't a lot of effective treatment options for IBS & IBDs like Crohn's & Ulcerative Colitis. The treatments which are effective for IBD are often invasive or can have serious side effects.
there aren't a lot of effective treatment options for IBS & IBDs like Crohn's & Ulcerative Colitis
I had IBS from the age of 10 to the age of 30. First off I have to say that IBS is not even remotely comparable to IBD. For most people, IBS is a very inconvenient life-altering syndrome. IBD is often 100x worse, increases the risks of colon cancer and can be life threatening. I wouldn't wish ulcerative colitis or Crohn's disease (IBD) on my worst enemy.
Beyond that, I'm not sure why you think this pill would help your IBS. It is specifically meant to treat one particular problem - a clostridium difficile infection. Typically the colon is populated by helpful or otherwise non-harmful bacteria. Clostridium difficile is an opportunistic infection that often takes hold after someone takes a course of antibiotics that kills all the helpful bacteria. The fecal transplant puts back the normal bacteria into your colon, attempting to crowd out the clostridium difficile bacteria. There is anecdotal evidence of fecal transplants helping IBS or IBD but it has not been studied well. Source: http://www.mayoclinic.org/medical-professionals/clinical-upd... I would suspect much of the benefit to IBS from a fecal transplant (or fecal transplant pill) derives from the placebo effect.
After 20 years of having IBS, the best cure I found for myself was to eat a lot of dietary fiber and drink a lot of water. I haven't had symptoms of IBS for over 12 years now since doing that. Unfortunately I find I have to eat about 40 grams of dietary fiber and drink about a gallon and a half of water per day. That takes actual work, but it's worth it. Source on dietary fiber treating IBS: http://www.aboutibs.org/site/treatment/diet/dietary-fiber
Perhaps you are too distant from your experience of IBS, or your symptoms were not as severe as some, but IBS can destroy someone's life just as well as an IBD can. Someone in remission with an IBD may have better quality of life than someone with uncontrollable IBS. Severity varies by patient, and while IBDs are usually more severe, that isn't always the case. Mentioning the two together does not mean that I am indicting they are equally severe. C.diff, IBS and IBD are all ailments with the potential to be treated via fecal transplantation.
The IBS issues I've dealt with have lead to some catastrophic effects. Twice after dealing with stomach flu/food poisoning I developed gastroparesis or severe gastric motility issues. I lost 60 lbs during the first bout in 2006 and 45 lbs during a second bout in 2012. My quality of life was horrible during these periods of time. I basically lost a year of my life each time.
Luckily you found a solution for your IBS, many people have not. If simply upping my fiber solved the problem then I would be set, but fiber lead to more gas and pain for me. Probiotics on the market often leave me constipated and nauseated. Even if I stick to a regimen irregularities continue, and my body still seems to ebb and flow. So far regular strenuous exercise seems to help me, but IBS often leads to fatigue.
This all happened to me after I went swimming in a river with friends and got ill later in the evening. I may have swallowed river water contaminated with agriculture run off. Nothing has been the same since then. This is similar to many people's stories about IBS. The hope is that the pill would restore whatever was killed off due to the initial illness, which might result in regulation and relief. Yeah it's a shot in the dark and not officially meant to treat ~anything~, but at least it's something with some promise. The doctors over the years haven't had an answer for me. Treatments are also used off label all the time and trials are often very narrow in scope to meet regulatory guidelines. Somehow I think you know this already and are being a bit of a smartass.
From the little you've written here, it doesn't sound to me like you have typical IBS or perhaps even IBS at all. The diagnostic criteria for IBS are here:
Dramatic weight loss as you've outlined is a sign you're suffering from something more serious than IBS. That makes sense since you list several other non-IBS related disorders ("stomach flu (sic) / food poisoning" as well as gastroparesis). The thing that doesn't make sense to me is why you attribute these things to IBS?
If simply upping my fiber solved the problem then I would be set, but fiber lead to more gas and pain for me.
There is nothing "simple" about increasing your fiber in a manner to solve IBS. As I mentioned in my original comment, it takes actual work. First, you have to eschew eating anything at all throughout the day that doesn't have dietary fiber. Second, you must gradually increase your fiber intake over a period of a year to avoid gas buildup and pain. Third, you must actively seek out fiber rich foods to eat throughout the day. As I said, there is absolutely nothing simple about it.
This all happened to me after I went swimming in a river with friends and got ill later in the evening.
Again, I'm questioning why you think this has anything to do with IBS. You don't catch IBS by swimming in a river.
I had IBS symptoms well before my severe issues with gastroparesis and digestive motility in 2006 and 2012. I feel my underlying issues with IBS made me more predisposed to additional further complications brought on by severe gastroenteritis from viral or bacterial origin. Often most people do not know what caused their "24 hour stomach flu", if it was something they ate or a virus.
I am not doubting the work it's taken you to achieve your remission of IBS, but I am saying your cure may not be the cure for others dealing with IBS.
>>You don't catch IBS by swimming in a river.
In a contaminated river you certainly can.
Have you really researched IBS fully? Post-infectious IBS is quite common. There have been major studies on it.
i think the taboo of talking about our shit is one of the main obstacles we face currently in the dialogue on personal and public health
because of this public silence i thought for the longest time that the way i shit was just the way all people shit: a roulette roller coaster ride through the whole bristol stool scale
once i removed wheat flour from my diet and began eating a quinoa`oatmeal hybrid everything changed for the better
it has to be tricolor quinoa because the three colors: white, red, and black; all burst at different rates when boiled
what you want is the whites to be fully popped, some reds to be beginning to pop and the blacks unpopped to pass through you like diamonds on a drill bit
cook the quinoa, then drop in an equal dose of oatmeal with some water and stir until the oatmeal is as soft as you like it
oatmeal alone is a poor rice substitute, but the mix gives a texture that makes the combination a perfect substitute for any meal where you might use rice
my body has since thanked me in all those wondrous popsci ways: more energy, better focus, less irratibility
i feel better and the difference was noticeable in days
We use something similar when we go traveling, basically tablets made from feces (active ingredient is http://en.wikipedia.org/wiki/Enterococcus_faecium), as a probiotic to prevent stomach infections and diarrhea. They are extremely effective and a very good alternative to having to go on antibiotics while on vacation. Available in pharmacies over the counter.
On another note I have a pet theory that the increasing prevalence of IBS is caused by the widening use of antibiotics everywhere, both as medicine but also in food production.
Where on earth do you travel if you have to go on antibiotics, just for traveling? Some people get a little sick from the different kind of bacteria cultures in different part of the world, but not something a doctor would put you on antibiotics for. A lot of people die every year for taking antibiotics they didn't necessarily need to take, so if your doctor prescribes antibiotics for a simple "vacation stomach", I'd change him or her out pretty quickly. [1]
> Where on earth do you travel if you have to go on antibiotics, just for traveling?
Anywhere in the 3rd world, especially around the equator. Not everywhere is too concerned with cleanliness and food safety, and even if it's OK for the locals, coming from a foreign country/continent you won't have immunity...
Even for these places I have never heard of doctors prescribing antibiotics simply as a precaution when traveling. Is this commonly done in the US?
At least to me this idea seems very strange. Not only are there side effects and antibiotic resistance to consider, but they also won't help you at all against viral diseases or protozoans (unless you take special antibiotics).
I know for the country I travel to, the doctors in that country will give you antibiotics if you go into the jungle. If you stay on the coast you might be OK, but they still recommend having antibiotics on you. The first time I went I didn't take antibiotics, and even though I was careful, I had an infection within a week...
Just an anecdote: When I went into a malarial area for only a few days on a field trip in South Africa, my doctor put me on doxycycline rather than anti-malarial medication.
Yes, I meant getting sick while traveling. Going to some third world countries you can get a stomach infection so bad that you have to go on antibiotics.
Believe me, you would get a queue around the block of people with IBS who would be willing to take this pill if there is scientific evidence that it works.
I find the framing of this nytimes article to be rather condescending, as if a reasonable person should have a problem with taking such a pill, if it is actually effective.
(though the science behind it, in itself, also still seems shaky at this point)
It seems like we could refine the fecal matter further until we get down to the active ingredient(s). Penicillin is made from mold, but we don't get repulsed by that, since it's so processed and pure.
The active ingredient is "unknown" at this point. Work is being done to figure out which microbes are useful, and in some cases you may need an orchestration of many different types.
The "active ingredients" are countless of microbiota, not all of which we've seen before. Even if we did know exactly what makes up the flora/microbiom of a healthy and happy gut, we'd likely never be able to get anywhere close to the same sampling and delicate balance that occurs through the natural equilibrium established in our stomachs.
Repulsion shouldn't play a factor. People will get used to it. Remember when pig heart valve transplants were a big issue?
Ari Meisel's Less Doing podcast devoted one episode to an interview with an expert in this procedure:
Podcast #59 Glenn Taylor - Fecal Microbiota Transplants
>For more info visit http://lessdoing.com/ Ari's book http://www.lessdoingbook.com In this episode Ari talks with Glenn Taylor of the Taymount Clinic. Glenn specializes in applying Fecal Microbiota Transplant (FMT) techniques to a broad range of gut conditions. FMT restores normal gut microbiota by implanting Standardized Gut Flora from tested and optimized sources. Listen to how Glenn has seen patients literally cured from debilitating illness such as Crohn’s, Ulcerative Colitis, IBS, Multiple Sclerosis, Rheumatoid Arthritis and other disease simply by restoring their gut bacteria to a normal balance.
The problem is that the answer may be "literally thousands of different types of bacteria".
Your digestive tract is a jungle, with more species than man will ever fully know about. When too many of certain types go extinct, the ecosystem breaks down, and bad shit starts to happen (come to think of it, literally).
It may take decades to figure out all of the specific species that matter most, and in what proportions. We aren't even certain which bacteria are common to all people, and which are specific to certain cultures / races / geographies / genders / who-knows-what-else. I bet people who eat a lot of KFC have a very different personal biome than I do.
In the meantime, here's 'one weird trick' that seems to just work.
Bacteria evolve faster than we can isolate and sequence them.
Even brewer's yeast is discarded after a few generations, usually, since it mutates enough to change the flavor of the resulting beer, and that's in an extremely well controlled environment.
Imagine that happening every six weeks in your gastrointestinal tract. Multiply by 6 billion people. I'd guess it's extremely unlikely we're going to thoroughly investigate all of those different variations on the theme.
Take a large sample of people and find out patterns in their gastrointestinal bacteria, and run the numbers.
Is it out of the question for people to be consistently pooping & supplying this data so we have ongoing tracking of the ratios of the various bacteria present in the population? Some clear patterns may arise.
This is actually really interesting, thanks for sharing.
They talk about mother's milk/breast milk being a source of microbes for babies at birth. I have heard this before and I wonder if it could be an alternative to this pill/fecal transplants?
It depends what you're using the feces to accomplish. Usually FMT is done for people suffering from CDiff infections. The healthy gut flora outcompete the CDiff, causing the infection to go away.
Mother's milk is mostly viruses, so it's unlikely this would work against CDiff. For other users is sounds interesting though!
We all eat small amounts of shit all the time. That's how microflora colonize your gut in the first place. Furthermore, many of these organisms can not be cultured outside the body or freeze-dried and preserved in a shelf-stable yet still viable form. Shit is the only game in town.
We're clearly at the very beginning of this. Using someone else's gut flora in the hope that it will sort out yours is on a par with pre-scientific herbal medicine: trial and error, and it often worked, but you don't know why.
In the future the medical system will analyse your gut flora and identify the specific mix of strains you need to take to remedy the situation.
Probiotics contain individual bacterial species, to help people who might be missing that one species, where we know that species serves an important function—they make sense for the same reason people missing one nutrient would take a supplement for that one nutrient (e.g. vitamin C.)
The alternative to taking one of these foecal pills would be to take lots of different probiotics, in appropriate portions, over time. This is, after all, what animals do naturally to create gut microbiomes in the first place. (It's hypothesized that this is why we like the taste of things like blue cheese: maximizing gut-biome biodiversity is apparently good for reproductive fitness, so we've evolved to enjoy the taste of things with novel bacteria on them.)
Yet another open-label study posted on HN. The placebo effect will play a large part in every patient treated with this, so how do we know if the pill had any effect over and above placebo? Really, this study is a waste of time and money.
It's a first step. Preliminary studies like this are important: before investing a huge amount of money into proper studies, it's fiscally prudent to take smaller steps.
Instead of going straight for the generic criticism, you might ask "what's cool about this study?"
It doesn't really tell us anything, like all open-label studies (except perhaps whether or not the treatment is dangerous and whether it might provide a benefit). Also it doesn't really cost any more to do a small-scale placebo-controlled trial vs an open-label study.
Overall open-label studies just give false hope to people who don't understand science and the placebo effect (i.e. most people).
I've never seen (although it might be possible) the placebo effect cure a bacterial infection. C. difficle infections are notoriously difficult to treat, even with specific drugs like Dificid.
If an open-label, uncontrolled study of fecal transplants cures a ton of people, that's very strong evidence that it works.
Closed, double-blinded clinical trials offer different value for different diseases.
That's why the FDA will accept an open-label, uncontrolled clinical trial for a drug that treats cancer.
The study didn't show that the treatment cured the infection. It just found that bowel movements decreased, and patient self-rated health increased. The placebo effect has been shown to have a significant effect on diarrhea for IBS:
Also, there are currently no RCTs showing the effectiveness of fecal transplant for C difficile, and a Nature review cautions that there will be a strong placebo effect for invasive procedures:
I didn't look into the details of this particular trial, so if in fact it did just look at patient self-rated health then yes, placebo effect could be a big factor.
I have seen other open-label uncontrolled studies for fecal transplant that had some pretty spectacular outcomes. Is such a trial as rigorous as a RCT? No, but it's a pretty positive signal.
I didn't say I understood how the placebo effect works (although perhaps I have a better idea than many people, as I've written a book about it).
What I meant is that - as I pointed out above - this study will have a siginificant placebo effect, and the results should therefore be treated with extreme caution.
We still have no idea whether this treatment actually works, and I'm constantly surprised that studies like this continually make the first page of HN.
I think the problem is that most people don't know that the placebo effect actually exists (or at least, they forget about it when they read a study like this, or downplay its significance). Even many researchers underestimate the placebo effect, and then we end up spending billions of dollars a year on a useless treatment until someone actually proves that it is no better than placebo.
"this study will have a siginificant placebo effect, and the results should therefore be treated with extreme caution"
You have no way of proving this. Let's face it, we do not have a good grasp on the factors involved in the placebo effect, for example we don't know whether someone needs to be susceptible to it for it to work, we don't know how to reliably trigger it, we don't know whether there are limits on its effects in the body. As you're an author of a book on the subject, you already know all this.
Regarding people's hope, there's no guarantee that people will read more into the study than they should, but we should give people the benefit of the doubt. It's fairly common to read about promising scientific studies that take a long time to develop into something more tangible, if at all (for example, here's a whole website full of such stories... http://phys.org/). Anyone with an interest in science is going to be used to these stories by now, but it doesn't mean there isn't something promising that can come of single research studies, once the data can be verified.
The study just looked at number of bowel movements and self-rated health, both of which have been shown to have a significant placebo effect. See for example:
A Nature review looking at fecal transplants for C difficile cautions that a strong placebo effect is common with invasive procedures. (This particular study isn't invasive, but it is highly novel, and that has also been shown to correlate with a large placebo effect).
From your second link: "FMT holds considerable promise as a therapy for recurrent CDI but well-designed, RCTs and
long-term follow-up registries are still required. These are needed to identify the right patient, efficacy and safety profi le of FMT before this approach can be widely advocated."
I don't disagree with this conclusion at all. The existing data is very encouraging, but more studies are needed before it can be considered for widespread use.
Also, it's worrying that the author says that they elected not to do a placebo-controlled trial due to the "efficacy" of fecal transplant. However there are no RCTs for fecal transplant, and Nature cautions that there is likely to be a large placebo effect.
Perhaps the difference is that falling at terminal velocity isn't likely to be affected by the placebo effect, whereas diarrhea has been proven to be highly amenable to it (see my comments above).
Anyway, thanks for helping to prove my point that most people don't understand the placebo effect (the downvotes also help to prove it :)
I don't understand your point. Just as the survivability of a fall from great heights is unlikely to be affected by the placebo effect, I would expect that kicking an antibiotic-resistant infection that's had you hospitalized for weeks/months would be unlikely to be affected.
I don't see how diarrhea factors into it. Are you saying that you think the patients will experience less diarrhea because they knew they were swallowing poop?
As I pointed out above, if you actually look at the study itself (not the NY Times article), the participants didn't "kick an antibiotic resistant infection" as you put it. All they did was have reduced bowel movements and better self-rated health.
Interestingly the study did a stool test for C dificile before the study (to see if the participants actually had the infection) but they didn't do any stool analysis after the study.
All in all, there are a lot of deficiencies with this study and it doesn't really tell us much.
And yes, the placebo effect has been shown to reduce diarrhea (as I pointed out above). This is expected, as the HPA axis (the body's stress system) is one of the systems that controls bowel movement.
