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FECAL TRANSPLANTS: A Guide

wildbill, can you update us on your status. Are you seeing any results?
I promised to update and its been over a week so I apologize. There have been no dramatic improvements for this second oral FMT, it's been 2 weeks post procedure, I was actually waiting a few more days to wait and see if i could notice at least any minor improvements because the last time it took me 2-3 weeks before i could say with confidence i had improved in any way, so it's still a little early to say, but what i can say is there have been no dramatic improvements, it's looking like ill be doing it again, this time with strict diet guidelines for my donor. I suspect having the donor follow a strict diet high in fiber is critical now, even though I always felt this way, The donor i'm dealing with isn't very keen on taking advice or following directions, so i didn't push the demands too hard, if I use the same donor again ill have to really push the issue.

For the record me as the patient i am following an extremely high fiber diet for example 3 cups of cooked broccoli and cauliflower , 300 calories of whole rolled oats, 600 calories of whole wheat this is what i eat daily made from scratch so im not eating "whole wheat" bread which is actually only 50% whole wheat and 50% refined wheat, im making foods products from 100% whole wheat which is about 6x higher in fiber.

Also, I've experienced very little negative side effects this second time compared to the first time, so i can only speak for my own experiences here but its generally been safe for me, that's not to say anyone should enter doing this without some knowledge or taking precautions, buts that another benefit of hearing about my experiences, to make it easier for other people to do it safely, diminish fears and in my own little way, advance our knowledge about restoring the microbiome with a fecal transplant.

There is still a slight chance i may have experienced some benefits from this recent oral FMT, I seem to be able to sleep longer but ill have to review my notes over the past 4 weeks to see what my averages are, but that's about it. But what i was hoping for was an ultra-efficiently performed fecal transplant with one orally administered dose leading to a dramatic turn around enabling me to digest normal foods again without increasing disease symptoms, a return of normal energy levels. I promise you i will find a way to do this and I'm much closer then ever before.
 
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...

But what i was hoping for was an ultra-efficiently performed fecal transplant with one orally administered dose leading to a dramatic turn around enabling me to digest normal foods again without increasing disease symptoms, a return of normal energy levels. I promise you i will find a way to do this and I'm much closer then ever before.
Your protocol does not include pre-treating with antibiotics, right? I was thinking that might be a good idea...knock DOWN (it's impossible to knock OUT) the current set of gut bacteria so the introduced set can get a foot hold. I know Borody's protocol includes antibiotics, and other protocols use 'rinsing' techniques including 14 doses of MiraLAX in just a few hours as well as colonic lavage. It seems like the idea is to drop the numbers of the existing microbiome as low as possible before the new microbiome is introduced.
 
Your protocol does not include pre-treating with antibiotics, right? I was thinking that might be a good idea...knock DOWN (it's impossible to knock OUT) the current set of gut bacteria so the introduced set can get a foot hold. I know Borody's protocol includes antibiotics, and other protocols use 'rinsing' techniques including 14 doses of MiraLAX in just a few hours as well as colonic lavage. It seems like the idea is to drop the numbers of the existing microbiome as low as possible before the new microbiome is introduced.
I do recall borodys FMT protocol for the first study on U.C. was similar to what you just described, I'm aware of all these things. I'm not sure how easy it is to obtain antibiotics from a doctor to do something that isn't regarded as a medical necessity, that may be considered malpractice in a doctors eyes, and they wouldn't take part unless they were specifically conducting research on FMT. So obtaining antibiotics for this purpose is kind of an unrealistic goal to achieve and seems difficult, but i haven't tried who knows what a doctor would say. For the time being I'm siding with the theory that the donors diet is very important to ensure a quantity of required bacteria to be restored with a FMT. My next attempt at an oral FMT will emphasize this variable. For the record I will remind everyone that my health improved about 15% form my first oral FMT but not the 2nd. Hopefully the end result of all this experiance, careful observations and reasoning will result in an effective protocol to share with others.

Miralax laxative would seem to be an easy option to add to the protocol though. Our bm's are separated by 24 hours time anyway so emptying the bowels may not be unnecessary as these bacteria would not be in the same vicinity with each other, the ingested dose of new bacteria would not come into contact the previous days meals. But i haven't thought about the idea of a laxative and whether or not that would be necessary or not. I think this would be more of a necessity if we were giving FMT enemas, because in this case the new bacteria would very likely come into contact with high numbers of the bad bacteria and cleaning out the colon with a lavage/enema before the FMT enema would make sense, but what I'm doing is an ORAL FMT so maybe this is a little different. I wanted to find an easier more convenient way to do FMT without doing 5-60 enemas, which is next to impossible to coordinate between two people that work and have families and busy schedules and such, doing an oral FMT one time is something we need to figure out especially when it comes to crohn's disease which seems the hardest to treat with FMT. I would have loved to find a way to make the pills but i had to give up on that.
 
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This is what we have been waiting for. A company has the money to further develop a mixture of clostridia species of bacteria to replenish the loss of diversity in the intestinal microbiome to treat and possibly cure both forms of IBD. This could replace the existing methods of doing a Fecal Transplant. They have $241 million to do this. This is Awesome. Thanks again to our fellow member william4 for giving us the heads up on this news story. Now we will wait for human trials.


News Release-Tuesday, January 13, 2015
http://www.xconomy.com/boston/2015/...marks-big-pharma-milestone-in-the-microbiome/
 
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I was under the impression that it would take AT LEAST 10 years for microbiome based therapies to hit the market, but now I am certain that we will have microbiome based therapies IN 10 years or less.

We must also take into consideration that fecal transplants will probably become standard practice in order to prevent gastrointestinal problems. This shouldn't take longer than few years.

The Second Genome is also recruiting patients for their microbiome based drug to treat IBD.

January 12, 2015:

http://www.xconomy.com/san-francisc...nning-drug-trial-based-on-microbiome-secrets/
 
I was under the impression that it would take AT LEAST 10 years for microbiome based therapies to hit the market, but now I am certain that we will have microbiome based therapies IN 10 years or less.

We must also take into consideration that fecal transplants will probably become standard practice in order to prevent gastrointestinal problems. This shouldn't take longer than few years.

The Second Genome is also recruiting patients for their microbiome based drug to treat IBD.

January 12, 2015:

http://www.xconomy.com/san-francisc...nning-drug-trial-based-on-microbiome-secrets/

One aspect moving things along is that these bacteria ALREADY exist in healthy people, which massively support their safety profile, so the bacterial preparation will move quickly to human trials. Well, this is one thing I read in an interview anyways. I'm generally aware that it takes quite a while to get to human trials but I'm no expert in this area.
 
First, thank you wildbill 52280 for making the effort to collect all of this info on FMT.

As much of the research info is a while back, and intimated that by now there might be some results. Any info on what is the current status of some of this research for Crohn's and FMT, and/or why it never did conclude?

Also, for myself, I think a pill would be the best route to go as my terminal ilieum is the site where the Crohn's is and going the other direction (up rather than down) would be likely more problematic. Any info on where/how one gets one's hand on a pill if one is doing this without a doctor?

Again, many thanks.
 
First, thank you wildbill 52280 for making the effort to collect all of this info on FMT.

As much of the research info is a while back, and intimated that by now there might be some results. Any info on what is the current status of some of this research for Crohn's and FMT, and/or why it never did conclude?

Also, for myself, I think a pill would be the best route to go as my terminal ilieum is the site where the Crohn's is and going the other direction (up rather than down) would be likely more problematic. Any info on where/how one gets one's hand on a pill if one is doing this without a doctor?

Again, many thanks.

Thanks for asking. Most of my posts in this thread cover the latest updates. In the initial first post of this thread I update section 2: History of fecal transplants with new information.

The conclusions of the studies so far are that fecal transplants are inducing remission in some patients with IBD without any need for drug therapy to maintain these remissions. In addition, there is good evidence to suggest some people are cured. But proving someone is cured with absolute certainty takes a while. To prove this logically, you would have to follow up multiple patients for their entire lives. So far we have been able to verify no sign of disease for up to 25 years with an ulcerative colitis patient and 12 years with a crohn's patient's whom had fecal transplants. So they have either achieved a very good remission or a cure, either one is fabulous in terms with what some patients have faced with this disease. So things are looking good for fecal transplants so far.

We have some knowledge about which bacteria are missing from the IBD patients which need to be restored, and we don't currently have the means to grow all of these species seperately to make a pill that contains only these species, so we are getting these bacteria from healthy donors stool sample. Doing it this way, its hard to predict what the actual dosage of bacteria the patient will recieve, and this is one factor that makes getting a fecal transplant a little unreliable although it seems to work from time to time. There is a way to put the whole range of fecal bacteria into a pill by filtering it and concentrating it with a centrifuge and one researcher has done this to treat c.difficle with success. I hope there will be more studies on IBD using this method of making a FMT pill. Otherwise there is a company that is developing a pill using 17 strains of clostridia which seem to be the most important bacteria that regulate inflammation and are missing ind IBD patients. http://www.xconomy.com/boston/2015/...marks-big-pharma-milestone-in-the-microbiome/

Until either of these things happen we wont have a FMT pill. You could try making one yourself I could share some ideas with you if you are interested in messaging me, other wise the simplest way to get the bacteria from a donors stool sample is to drink it, this is what I did 2x with some positive results and I'm doing it very soon again until I get it right.
 
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Since this is a "FMT Guide" thread, I thought I would add something that might make the task easier and maybe result in a more effective treatment.

Some FMT practitioners suggest doing a cleanse before FMT. I guess the idea is to eliminate as much of the competition as possible, since you want the new set of bugs to "win". If the FMT is delivered via colonoscope, then your scope operator (aka doctor) will be able to tell you the exact process, and perhaps, write a prescription for the colonoscopy preparation supplies. This post is about if you don't want to go through the trouble of a doctor visit, just to get the prescription. The supplies below are all over the counter (in the US, at least). I would clear this with your doctor before hand, but that should just be an email.

If you google "university of michigan colonoscopy preparation" you should see a link to the Miralax/Gatorade Prep (www.med.umich.edu/1libr/MPU/UMHS_Colonoscopy_Miralax_Gatorade_Prep.pdf). You must use the "G2" variety of Gatorade (no substitutions), but you can probably get away with the store-brand Miralax. The bottom line is the day before your FMT, first you take a couple of 5mg bisacodyl tablets, then wait for some "action". Then you mix 119g of PEG3350 (Miralax) with one bottle of G2, and chug it over a couple of hours (max). You can have clear liquids, after this, but only clear liquids. Given that your FMT is in the afternoon, the morning of your FMT, you mix another 119g into your other bottle of G2 and chug that over a couple of hours (max), making sure the last gulp (of G2 or anything) was at least couple of hours before your FMT. Being a little thirsty is good!
 
Since this is a "FMT Guide" thread, I thought I would add something that might make for a more effective treatment.

Some FMT practitioners suggest using prebiotics to help feed the beneficial types of bacteria within the introduced microbiome. This is thought to help the new set of bugs "win" over the bugs that could be furthering the disease process. Although galactooligosaccharide prebiotic compounds are found in some foods, larger amounts may be found in commercial supplements. These supplements are made through bacterial action on dairy, so could be a problem for lactose interant people. Also, I'd say these supplements were purposefully "high-FODMAP" (the "O" stands for oligosaccharide), so someone requiring a Low FODMAP Diet would not be a candidate. Studies I have read used 2.5g or 5.0g per day. Not only can one feed the introduced microbiome by ingesting a prebiotic, I understand that some practitioners feed the infusion solution with a small amount (1g?) of prebiotic before infusion. Bimuno is made in the UK by Clasado, but they will ship to the US. Galactomune is sold in the US by Klaire Labs, but this product is not supposed to be direct to consumer (although it still seems to be available that way). Although both are galactooligosaccharides, they probably differ in their structure. I have researched Bimuno and discovered it was beta 1-3 structure with a good bit of low polymerization (DP2 and DP3). I have not yet found data on Galactomune, but I suspect it's the more common beta 1-4 structure.
 
Since you are discussing poop pills,here is some info.
Another side of this is that opposed to rectal infusion, what if oral tolerance is a mechanism that also induces remission.
Anyhow drinking poo also might have some additional danger,such as aspiration into the lungs, where pills seem somewhat safer.

I have UC not crohns,anyhow as an aside, has anyone tried taking baking soda for crohns,since one of the problems with crohns is thick mucus in the crypts,not flushing bacteria from the crypts. One of the reasons that the mucus is overly thick is the lack of bicarbonate transport into the bottom of the crypts,which is needed to expand the mucus out of the crypts.
Old Mike
Overcapsulated with gel caps.


https://idsa.confex.com/idsa/2013/webprogram/Paper41627.html


http://thepowerofpoop.com/epatients...ctions/how-to-make-fecal-transplant-capsules/
 
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Spooky1

Well-known member
Location
South Northants
Hi MF,
I take bicarb of soda, admittedly with a teaspoon of sugar, each day. Not so much for the Crohns but to perhaps stave off cancer after having a few cancer scares. I still take it and am not sure whether it helps crohns at all.

It was interesting to read both the links and also for the extra knowledge on bicarb and crohns.
thanks
 
Since you are discussing poop pills,here is some info.
Another side of this is that opposed to rectal infusion, what if oral tolerance is a mechanism that also induces remission.
Anyhow drinking poo also might have some additional danger,such as aspiration into the lungs, where pills seem somewhat safer.

I have UC not crohns,anyhow as an aside, has anyone tried taking baking soda for crohns,since one of the problems with crohns is thick mucus in the crypts,not flushing bacteria from the crypts. One of the reasons that the mucus is overly thick is the lack of bicarbonate transport into the bottom of the crypts,which is needed to expand the mucus out of the crypts.
Old Mike
Overcapsulated with gel caps.


https://idsa.confex.com/idsa/2013/webprogram/Paper41627.html


http://thepowerofpoop.com/epatients...ctions/how-to-make-fecal-transplant-capsules/
thanks for the first link, I should really put that one in the initial post of this thread.
But unfortunately the power of poop website makes the claim of the small intestine supposedly being sterile, THIS is not true and they provided no references to support this claim anyways. although the ileum and large intestine contains the highest amount of bacteria, the small intestine still contains an astounding amount, and they are SUPPOSED to be there to maintain good health. Love to provide my own references for this claim,but i can only spend so much time upkeeping this thread as ive already dedicated so much, look it up!!
 
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don't forget to follow the donor selection criteria before doing an FMT!! or this could happen!! its important, i suppose that's why i made the guide, its safe but ONLY if you follow the guidlines. its not clear though that the fecal transplant caused this but considering her donor was known to be overweight, something which the medical professionals should have advised against, this happened. so much for the DIY fecal transplant being dangerous, medical professionals arent even taking enough precautions. ive used 3 donors and have had no bad side effects so far, but that's because i'm only selecting people who are healthy.

http://www.upi.com/Health_News/2015...ansplant-from-overweight-donor/1581423067944/
 
WB As far as I know the small intestine is not sterile, has some bacteria of course not the amounts in the colon.
With crohns,dysbiotic bacteria at early onset, with higher than normal counts.
As I said above part of the problem is not flushing the bacteria from the crypts with
thin expanded mucus,which is what should happen.
How FT might fix this, I have no idea,perhaps getting rid of dysbiotic bacteria fixes other
functional problems,don't know,or is it oral tolerance induction.
Been studying IBD now for about 35 years, still cant fix my UC, but at some point might go all in with FT. Eventually it is going to kill me one way or the other FT might be a solution for some.

Yea that doc is on the healing well UC forum I normally hang out at, but we have also had people who did Rectal FT and got very sick,with what was believed to be quality donors.
Old Mike
 

Spooky1

Well-known member
Location
South Northants
Wildbill, we do appreciate the efforts and information. It means a lot to some of us. I wish I knew a healthy person and I'd do home trial. Bit peculiar about getting fat from fat donor or skinny too. Was just reading in the paper how a man received a transplant from someone killed on his bike, he now can't resist cycling. I suppose even a gut flora transplant is a link to the previous person. Bit scarey thinking about it. Have you any new hobbies that you didn't have prior to FMT? ;)
 
... Have you any new hobbies that you didn't have prior to FMT? ;)
Lol! I totally get the fat/skinny thing is real. I'd rather be fat than sick, though.

My theory is that each of us has a set of microbes that have found a specific "détente" between microbial "armys". So when there's wheat around, you guys from army "A" bloom, and when there's fiber, you other guys from army "B" bloom, but nobody ever gets a total defeat. Obviously it's much more dynamic than two armys, but you get the idea.

So each of us has our own set of "armys", developed over our life times, and it's settled out into this "détente" arrangement. It's a stand-off that is probably very stable. The reason I say that is when people have PCR (genetic fingerprint of the microbiome) done multiple times over a long span of time, it doesn't change much (if left undisturbed by antibiotics or something). So while I certainly agree that there probably sets of microbial armys that are stable and that cause a person to consume more calories (by playing with hunger) or extract more calories from food, I have a hard time believing that someone who gets a new set of "bugs" would have any kind of personality shift.
 
Previously I presented two ways that could be used to enhance the effectiveness of FMT...introducing a new microbiome (cleaning out the old with a DIY "prep", and also providing the right kind of food to feed the new microbiome). As a third topic to enhance the "FMT Guide" aspect of this thread is the possibility of doing even MORE to clean-out the old before brining in the new: Colonic Lavage, aka Colon Hydro Therapy.

If you've never heard of this, it's basically a system where warm water is introduced to the colon, then allowed to drain out. It's repeated many times and the large intestine is typically massaged to release as much matter as possible. Both the introduction and removal of water is done through one, single-use plastic device placed in the rectum, so it's not typically very messy or smelly.

In Charlotte, there were many practitioners that are certified by the international association of colonhydrotherapy to choose from. If you are currently in any kind of flare, you probably shouldn't do this, and I doubt that when you report the specifics of your condition to the therapist (which you must), they would advise to continue anyway.

Of course we don't have any studies that prove that a new microbiome's chances of "sticking" are improved by colonic lavage (or doing a "prep", or feeding the new bugs, for that matter), but on the face of it, all three seem like, if precautions are followed, they couldn't hurt and probably would help to increase the chances of a successful replacement of a microbiome.
 
... I promise you i will find a way to do this and I'm much closer then ever before.
I just searched this thread for "enteric" and didn't get any hits. I'm not sure I've been watching this thread super closely, so sorry if you've already covered this but...

Have you thought much about filling enteric coated capsules, with the idea being, get past the hydrochloric acid of the stomach? The way I figure it (just an engineer, not even a chem-e, and certainly not a doctor), you take a bunch of bugs and run them through some acid, you're going to "select for" acid resistant bugs. That might leave the good ones, it might leave the bad ones, it might leave a mix. But the result will probably not be the same mix that you started with, since the ones that couldn't take the acid would be goners. I kind of presume that you want a mix that was like the ones you started with, since those are the guys that like the environment of the large intestine.

Again, wild speculation here, but on the premise that the stomach acid is protecting the rest of your GI tract, getting bugs that "should have" been neutralized into the small intestine, could that be "bad"? I have heard the term "bacterial overgrowth" in regard to the small intestine, but really don't know much about that at all. Just a thought on a possible risk associated with enteric coating.

I wonder if you could get-by with smaller amounts of bugs in the first place by taking an enteric approach, since many fewer would be killed-off by the stomach acid. Did I read somewhere that someone was coating the insides of gelatin capsules with raw coconut oil (solid at room temperature) to protect the gelatin from dissolving before it could be consumed? Because I see that as one of the problems with this; gelatin would begin to dissolve immediately upon getting filled, and could become a mess. That's probably less of an issue with you, since you, as I understand it, performed an almost super human feat: consumed the slurry unadorned. But I understand that if the do-nothing consequences of disease are bad enough, one will put-up with risks and inconveniences, even if the chance of payoff is not assured.
 
I just searched this thread for "enteric" and didn't get any hits. I'm not sure I've been watching this thread super closely, so sorry if you've already covered this but...

Have you thought much about filling enteric coated capsules, with the idea being, get past the hydrochloric acid of the stomach? The way I figure it (just an engineer, not even a chem-e, and certainly not a doctor), you take a bunch of bugs and run them through some acid, you're going to "select for" acid resistant bugs. That might leave the good ones, it might leave the bad ones, it might leave a mix. But the result will probably not be the same mix that you started with, since the ones that couldn't take the acid would be goners. I kind of presume that you want a mix that was like the ones you started with, since those are the guys that like the environment of the large intestine.

Again, wild speculation here, but on the premise that the stomach acid is protecting the rest of your GI tract, getting bugs that "should have" been neutralized into the small intestine, could that be "bad"? I have heard the term "bacterial overgrowth" in regard to the small intestine, but really don't know much about that at all. Just a thought on a possible risk associated with enteric coating.

I wonder if you could get-by with smaller amounts of bugs in the first place by taking an enteric approach, since many fewer would be killed-off by the stomach acid. Did I read somewhere that someone was coating the insides of gelatin capsules with raw coconut oil (solid at room temperature) to protect the gelatin from dissolving before it could be consumed? Because I see that as one of the problems with this; gelatin would begin to dissolve immediately upon getting filled, and could become a mess. That's probably less of an issue with you, since you, as I understand it, performed an almost super human feat: consumed the slurry unadorned. But I understand that if the do-nothing consequences of disease are bad enough, one will put-up with risks and inconveniences, even if the chance of payoff is not assured.
They were coating the inside of a gelatin capsule with beeswax, which I'm not sure is a good idea because beeswax may have some antibacterial properties. I highly doubt there is any scientific data on how human GI microbiota would interact with beeswax. But you could simply try it and find out if it works for you. But its better to have some scientific basis behind it. The reason for coating the capsule with beeswax was so that the gelatin capsule would not break down so quickly, the beeswax wasn't intended on protecting the bacteria from the stomach acid.

Nature has been inoculating our intestines with the required bacteria for a long time despite stomach acid, it's likely this is a non issue for FMT's. Dr louie at university of calgary canada has used regular gelatin caps to give people fecal transplants with c difficile infection with good results so far, so for those reasons, it doesn't seem like a big issue as to whether the good bacteria can survive an oral route trough the stomach acid and into the lower gi tract. In all likelihood, the good bacteria will survive the journey, if they are there in the first place, if they are alive in the first place, if they are high enough in quantity in the first place.
 
I guess I have a question I am not sure about.
People get sick with a coliform infection from swimming pools, and sewage leaks into the ocean. They are always checking coliform levels.
So if you eat pure poo, many/none perhaps do not get sick, so what is going on.
We also know that some with UC and with rectal FT do get worse
Old Mike
 
OM, My interpretation of why ingesting a large-intestine microbiome doesn't usually cause symptoms is because there are not high quantities of pathogenic bacteria in the FMT. Since healthy donors are selected, although they have billions of E.coli, those donors don't have high counts of E.coli pathotypes (the ones that cause disease). The most commonly identified "bad E.coli" in North America is E. coli O157:H7.
 
Inflamm Bowel Dis. 2015 Mar;21
(3):556-63. doi: 10.1097/MIB.0000000000000307.

Fecal microbial transplant effect on clinical outcomes and fecal microbiome in active Crohn's disease.
Abstract

BACKGROUND:
Crohn's disease (CD) is a chronic idiopathic inflammatory intestinal disorder associated with fecal dysbiosis. Fecal microbial transplant (FMT) is a potential therapeutic option for individuals with CD based on the hypothesis that changing the fecal dysbiosis could promote less intestinal inflammation.

METHODS:
Nine patients, aged 12 to 19 years, with mild-to-moderate symptoms defined by Pediatric Crohn's Disease Activity Index (PCDAI of 10-29) were enrolled into a prospective open-label study of FMT in CD (FDA IND 14942). Patients received FMT by nasogastric tube with follow-up evaluations at 2, 6, and 12 weeks. PCDAI, C-reactive protein, and fecal calprotectin were evaluated at each study visit.

RESULTS:
All reported adverse events were graded as mild except for 1 individual who reported moderate abdominal pain after FMT. All adverse events were self-limiting. Metagenomic evaluation of stool microbiome indicated evidence of FMT engraftment in 7 of 9 patients. The mean PCDAI score improved with patients having a baseline of 19.7 ± 7.2, with improvement at 2 weeks to 6.4 ± 6.6 and at 6 weeks to 8.6 ± 4.9. Based on PCDAI, 7 of 9 patients were in remission at 2 weeks and 5 of 9 patients who did not receive additional medical therapy were in remission at 6 and 12 weeks. No or modest improvement was seen in patients who did not engraft or whose microbiome was most similar to their donor.

CONCLUSIONS:
This is the first study to demonstrate that FMT for CD may be a possible therapeutic option for CD. Further prospective studies are required to fully assess the safety and efficacy of the FMT in patients with CD.
 
No or modest improvement was seen in patients who did not engraft or whose microbiome was most similar to their donor.

What is going on with a similar microbiome to the donor, I wonder.

Old Mike
 
No or modest improvement was seen in patients who did not engraft or whose microbiome was most similar to their donor.

What is going on with a similar microbiome to the donor, I wonder.

Old Mike
Perhaps the donors that have a similar microbiome do not have the host genetic defect, either way exciting that the ones where the donors microbiome did engraft reached remission.
 
Too bad we can't read the whole study. I'd like to know if it was just a one time NG treatment, and if the end of the NG tube was past the stomach. Only nine "kids" too...the details of the study might add credibility. If it was just one NG treatment, then super easy to get another if the first one didn't "stick". The suggestion that a non-similar donor is more likely to yield the best results is something I had heard before...nice to have this bit of proof on that. Makes it less easy for DIY'ers, but if they try it with an SO and it doesn't help, they shouldn't give up...they need to try again with a dissimilar microbiome.
 
Is there anybody who can help me...
My son has had a temporary ileostomy for 4,5 years now. His colon is bleeding very badly and he has CD and maybe also diversion colitis. Now his GI proposes FMT. I am quite scared what will happen when we inject the transplant into the colon that hasn't been used in 4,5 years and that is badly inflammated! Has anybody any experience in this? Any cases studies available?

Thanks a lot in advance!
 
Is there anybody who can help me...
My son has had a temporary ileostomy for 4,5 years now. His colon is bleeding very badly and he has CD and maybe also diversion colitis. Now his GI proposes FMT. I am quite scared what will happen when we inject the transplant into the colon that hasn't been used in 4,5 years and that is badly inflammated! Has anybody any experience in this? Any cases studies available?

Thanks a lot in advance!
I havent heard of FMT used yet in this specific situation so i cant say anything with absolute certainty, but in all probability, if the donor selected is screened very well to be healthy and free of diseases, and also follows a high fiber diet before donating, there isn't any reason to be scared of fecal transplants, safety profile is very good so far but ONLY if you follow screening procedures well.

I encourage you to view section 5 in the initial post under the section HOW TO SELECT A DONOR and view the two links and maybe print them out where Dr Borody and Dr Khoruts created a very strict donor selection screening process. Choose a healthy family member or a friend who is superbly healthy then work with your doctor to screen them properly. These guidelines are pretty strict and not all of them are absolutely necessary, but just so you know how strict you could be in the donor selection process to make it as safe as possible and limit your risks. Let us know how things go and we wish you the best!
 
This site lists research papers by Prof. Sonnenburg at Stanford Dept. of Microbiology and Immunology. He's one of the main sources referenced in the Scientific American article. His research evolves around the various mechanisms of symbiotic relationship between the host and its microbiome. Very interesting reading.
 

Lady Organic

Moderator
Staff member
Thats great news!

it seems multiple or maintenance treatments will be needed, as fecal calprotectine rose in most patients 12 weeks after treatment.

In the conclusion, they discuss about E coli :''Another possible predictor of disease activity and duration of efficacy seems to be the appearance or resurgeonce of E. coli. We notice a trend of increasing calprotectins with an increase in E. coli abundance. Although this finding may be a helpful predictor of efficacy of therapy, there is no clear casual affect. However, in patients with significant dysbiosis with E. coli, therapy targeted at its suppression followed by FMT could be another potential therapeutic trial in the future.''
 
I've cited this Scientific American article before, where they talk about some of the advances on microbiome research (including reference to Vedanta Biosciences proprietary "super-citizen" bacterial strains, which Janssen -- of Remicade fame -- just picked up for a cool $250 million).

In the article, Prof. Sonnenburg, a microbiologist from Stanford Medical Lab talks about how once the unhealthy microbiome establishes itself, an inertia sets in that is hard to overcome. This may be why FMT doesn't seem to take in Crohn's. He sees that treatment paradigm may evolve where you simultaneously treat the host and the microbiota, say using antibiotics to clear the slate, use immunotherapy to quell the inflammation, and then reintroduce the healthy strains that can take hold and re-establish homeostasis.

Exciting times!

Thats great news!

it seems multiple or maintenance treatments will be needed, as fecal calprotectine rose in most patients 12 weeks after treatment.

In the conclusion, they discuss about E coli :''Another possible predictor of disease activity and duration of efficacy seems to be the appearance or resurgeonce of E. coli. We notice a trend of increasing calprotectins with an increase in E. coli abundance. Although this finding may be a helpful predictor of efficacy of therapy, there is no clear casual affect. However, in patients with significant dysbiosis with E. coli, therapy targeted at its suppression followed by FMT could be another potential therapeutic trial in the future.''
 
I've cited this Scientific American article before, where they talk about some of the advances on microbiome research (including reference to Vedanta Biosciences proprietary "super-citizen" bacterial strains, which Janssen -- of Remicade fame -- just picked up for a cool $250 million).

In the article, Prof. Sonnenburg, a microbiologist from Stanford Medical Lab talks about how once the unhealthy microbiome establishes itself, an inertia sets in that is hard to overcome. This may be why FMT doesn't seem to take in Crohn's. He sees that treatment paradigm may evolve where you simultaneously treat the host and the microbiota, say using antibiotics to clear the slate, use immunotherapy to quell the inflammation, and then reintroduce the healthy strains that can take hold and re-establish homeostasis.

Exciting times!
Thanks xeridea, I did not realize Janssen made Remicade.

Just a reminder, the women with crohn's who seems to have been cured after FMT at borody's clinic which was verified with a follow up colonoscopy 12 years post FMT, received a large volume oral dose from 3 donors. Getting 3 donors stool at once would increase the probability of getting the right bacteria she needed. http://www.abc.net.au/news/2014-03-18/sydney-doctor-claims-poo-transplants-curing-diseases/5329836

It seems to be true that once severe dysbiosis sets in it is quite resistant to correction. low doses of good bacteria spaced over a long period of time is probably not an effective dosing schedule, and many studies have suggested that. 30 to 60 enemas is pretty inefficient compared to one oral dose or soon to come, a pill.

They are trying to standardize the dosages, but even if they give the same amount of stool to saline ratio to patients, the donors microbiota could still vary by alot depending on their diet. manipulating other variables like the patients microbiome with antibiotics before FMT and suppression of inflammation or immune system would help, but if we cant get the right amount of the right kind of bacteria in the dosage, those other variables just don't matter that much yet. If we ENSURE the right bacteria(whichever they are) in the high enough dosage then success would likely occur every time for everyone.After this is addressed, we don't have to put any effort into manipulating the other variables at all, but we could just to make things even faster, but addressing this prime variable precedes all others. Another variable is the diet of the patient. I always prefer the most natural manipulations before we start throwing in antibiotics again, haven't we learned our lesson yet? http://martinblaser.com/
 
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Mr. Bill, in the Discussion section of the study you cite above, they point out: "There was a significant difference in clinical outcome between the patient with the least and most microbial similarity between recipient and donor. This could indicate that the more divergent a Crohn's patient is from his donor the more the potential benefit of transplantation." (emphasis mine)

You seem to be spot on. It's not just a matter of samples from a healthy donor. It has to be the right and perhaps complementary bacteria. With the 16s RNA sequencing becoming readily accessible in the clinical setting, this may become easier and easier to fine tune. And I think there are companies now that can provide targeted samples. And outfits like OpenBiome, or perhaps other commercial ventures, may soon be able to provide donor matching based on such guidelines.
 
Thats great news!

it seems multiple or maintenance treatments will be needed, as fecal calprotectine rose in most patients 12 weeks after treatment.

In the conclusion, they discuss about E coli :''Another possible predictor of disease activity and duration of efficacy seems to be the appearance or resurgeonce of E. coli. We notice a trend of increasing calprotectins with an increase in E. coli abundance. Although this finding may be a helpful predictor of efficacy of therapy, there is no clear casual affect. However, in patients with significant dysbiosis with E. coli, therapy targeted at its suppression followed by FMT could be another potential therapeutic trial in the future.''
This wouldn't be the first observation of this relationship between ecoli and inflammation. But it seems that it's the inflammation that may precede the bloom of e coli as they can feed on nitrate.http://www.ncbi.nlm.nih.gov/pubmed/23393266

The idea of an e coli bloom further reinforcing the inflammatory response by another mechanism is also a possibility. http://en.wikipedia.org/wiki/Positive_feedback
 
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I will be travelling to the UK and the Taymount clinic in early May to do 10 days of FMT. Thought I'd share the preparation protocol and some of the details I have received of their methods.

I have Crohn's colitis, dx last year and have pretty much been in remission since then although I still struggle some days. Currently only on Pentasa, which I'm not sure even does anything. My calprotectin levels were in normal range (below 50) for almost six months but started creeping up around Christmas and is now at around 150.

The minimum amount of FMT transplants available at Taymount is 10 days, which means you have to spend two weeks there. They use samples from several donors, and also try to match so that donor samples are different from yours and can "fill in the gaps". You have to provide Genova stool testing before undergoing the treatment to check you gut health and see what your gut flora looks like. After the treatments are finished, they provide you with two samples to take home and administer at home. They also show you how to do this. If you want to buy further samples for home treatment, this is also available.

Taymount has developed a method to extract the microbiome, including the anaerobe bacteria. They do freeze it, so the samples are not fresh.

They are very strict about the preparation procedure you have to follow. Four weeks before the treatments begin you are supposed to start taking something called Oy-klenz, which is basically magnesium peroxide which re-hydrates your bowel. You are to increase your dose until you have very soft stool. This is to completely evacuate the bowel of any hardened material that may be stuck to the bowel wall, which otherwise takes up precious time in clinic. Two weeks before treatment, you need to have a colonic irrigation, and then finally 2-3 days prior to travelling you are to take a laxative similar to what you take for a colonoscopy prep (without the low residue diet). They don't propose a special diet before the treatments, although they do give advice on diet once you are there, but particularly afterwards.

Since you are a group of people that have looked into FMT alot, I'd also like t ask some questions.

1. I'm currently debating whether to increase my supplements of soluble fibers (inulin, GOS, acacia, psyllium, glucomannan) to try to improve my microbiome or completely stop fibers and go on a very low fiber diet (to starve my microbiome). Any idea which might be more beneficial for the FMT to be successful?

2. Have you read anywhere about the influence of diet on success of FMT? I suspect that some people who do the FMT don't feed their new microbiome properly, which might lead to a worse outcome.

I hope the above information was of some interest!
 

Lady Organic

Moderator
Staff member
I personally would fallow the clinic guidelines regarding diet.

Do you know already what is the diet they advice after FMT and for how long it has to be maintained or it is a lifelong diet? Im curious about that.

Good luck :thumleft:
 
Boax, I think the recommendation would be to keep your diet stable with foods and supplements that have agreed with you in the past. I'm no expert, but I seroiusly doubt that you can do much to alter a gut disbiosis with supplements.

If you want to deliver a one two punch to knock out your current microbiome, you could take a week or ten days of an antibiotic cocktail...that is, 3 to 5 antibiotics to reduce the numbers of your current microbiome. I would NOT do this unless I was scheduled for an FMT. I would stop taking the antibiotics 36 to 48 hours before the first treatment. I don't think Taymount recommends this, though. But since they are not doctors, I think they want to stay away from prescribing drugs. If you search, you can find studies where the specific set of antibiotics and dosages are defined. You could get your local doc to prescribe them (just show them the paper).

I believe that your number 2 is absolutely true. The go-to good gut bacteria food is thought to be galactooligosaccaride prebiotics .
 

Lady Organic

Moderator
Staff member
The go-to good gut bacteria food is thought to be galactooligosaccaride prebiotics .
could you expand on this please? what do you consume for prebiotics? I consume lots of onions and raw saukrates as proposed in the IBD-AID diet: ''strong emphasis on the ingestion of pre- and probiotics (e.g.; soluble fiber, leeks, onions, and fermented foods) to help restore the balance of the intestinal flora''
 
could you expand on this please? what do you consume for prebiotics? I consume lots of onions and raw saukrates as proposed in the IBD-AID diet: ''strong emphasis on the ingestion of pre- and probiotics (e.g.; soluble fiber, leeks, onions, and fermented foods) to help restore the balance of the intestinal flora''
You are on the right track with root veggies. I wrote a wiki page here: http://www.crohnsforum.com/wiki/Prebiotics

This forum site should be making the word "Prebiotics" into a link to that wiki, but for some reason, it has stopped doing that.

I consume one packet of Bimuno every day to feed the good guys.
 

Lady Organic

Moderator
Staff member
From the above article dr Suskind:

''To test the effectiveness of treating IBD with fecal microbiota transplant, Suskind designed a study that included patients with Crohn’s disease as well as patients with ulcerative colitis, all of whom were experiencing flare-ups of their symptoms. Each patient received a single treatment of stool (donated by their parent) mixed with saline, via a nasogastric tube.
While patients with ulcerative colitis did not improve significantly, the majority of those with Crohn’s did''

I guess he didnt publish those results yet...?
So now I am discouraged since my colitis is indeterminate and looks more like a UC...
 
From the above article dr Suskind:

''To test the effectiveness of treating IBD with fecal microbiota transplant, Suskind designed a study that included patients with Crohn’s disease as well as patients with ulcerative colitis, all of whom were experiencing flare-ups of their symptoms. Each patient received a single treatment of stool (donated by their parent) mixed with saline, via a nasogastric tube.
While patients with ulcerative colitis did not improve significantly, the majority of those with Crohn’s did''

I guess he didnt publish those results yet...?
So now I am discouraged since my colitis is indeterminate and looks more like a UC...
Don't worry, there is the 2003 study which showed FMT is effective in U.C, in fact these were the first reports of people seeming to be 100% cured, but they used multiple enemas which could possibly be slightly more effective for U.C. Refer to the first post of this thread.
 
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I personally would fallow the clinic guidelines regarding diet.

Do you know already what is the diet they advice after FMT and for how long it has to be maintained or it is a lifelong diet? Im curious about that.

Good luck :thumleft:
Thanks :)

The diet they recommend after FMT seems to be loosely based around Paleo and well aligned with the diet proposed in the book Grain Brain by Dr David Perlmutter. In their brochure they acutally have a few recommended books on diet:
The High Fat Diet - Zana Morris
Eat The Yolks - Liz Wolfe
Grain Brain
Wheat Belly - Dr William Davis.

Now, keep in mind that this is for ALL patients, I have not yet received any special recommendations for Crohns or IBD and likely won't until I'm at the clinic. But basically they seem to recommend to avoid gluten and refined starches, sugar and all kinds of processed foods. Eat animal proteins, a large variety of vegetables including raw, increase intake of fats such as ghee, coconut oil, olive oil. I'll ask them about adherence to diet, but I assume that they will want you to stay on such a diet through life. It's not very restrictive and probably good for you in many other ways if you can handle it.

I think the IBD-Aid diet which you follow is quite similar but more tailored to IBD obviously. IBD-AID is also very tailored to each patient with different diet for each stage, so quite different from most other diets.
 
could you expand on this please? what do you consume for prebiotics? I consume lots of onions and raw saukrates as proposed in the IBD-AID diet: ''strong emphasis on the ingestion of pre- and probiotics (e.g.; soluble fiber, leeks, onions, and fermented foods) to help restore the balance of the intestinal flora''
There's so much to say about prebiotics. I really recommend you read through the FIBER series on the blog vegetablepharm (and also somewhat on drbganimalpharm). He has a TON of interesting info there, and don't forget to also read the comments - this is were some of the most interesting information is.

Basically, prebiotics are foods for your benefical gut flora. There are many and can be found in a lot of vegetables, roots etc. E.g. leeks and onions contain a lot of inulin, whereas beans contain a lot of GOS. A typical person on a western diet eats around 15g of fermentable fiber per day at best. If you look at more rural societies such as the Hazda tribe in Africa and from petrified stool samples they have in excess of 100g of fermentable fiber day and suffer none of these kinds of conditions. There are plenty of interesting studies on prebitiocs and they seem very beneficial, particularly for UC.
 
From the above article dr Suskind:

''To test the effectiveness of treating IBD with fecal microbiota transplant, Suskind designed a study that included patients with Crohn’s disease as well as patients with ulcerative colitis, all of whom were experiencing flare-ups of their symptoms. Each patient received a single treatment of stool (donated by their parent) mixed with saline, via a nasogastric tube.
While patients with ulcerative colitis did not improve significantly, the majority of those with Crohn’s did''

I guess he didnt publish those results yet...?
So now I am discouraged since my colitis is indeterminate and looks more like a UC...
As Wildbill said, there's plenty of studies showing 100% cures of UC. Actually, UC in most procedures seem to actually respond better to probiotics, prebiotics and FMT than Crohn's which seems to be a more difficult disease. For example right now professor Borody of Australia is recruiting people for a big UC FMT trial. I'm sure that's because he has seen very strong results from his case studies, otherwise he probably wouldn't do it this way.
 
One packet? that works out expensive doesn't it?
I order directly from the manufacturer and with international shipping it comes to under a buck a day. If one spends the time, money, energy to get a replacement of their micribiome, that's pretty cheap insurance to keep those new guys as happy as possible.
EDIT: the price is actually $0.37/day,delivered from the UK. That is taking advantage of a buy 2 get 1 free promotion that the manufacturer is running.
 
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From the above article dr Suskind:

''To test the effectiveness of treating IBD with fecal microbiota transplant, Suskind designed a study that included patients with Crohn’s disease as well as patients with ulcerative colitis, all of whom were experiencing flare-ups of their symptoms. Each patient received a single treatment of stool (donated by their parent) mixed with saline, via a nasogastric tube.
While patients with ulcerative colitis did not improve significantly, the majority of those with Crohn’s did''

I guess he didnt publish those results yet...?
So now I am discouraged since my colitis is indeterminate and looks more like a UC...
Another reason why not to be discouraged is that many of these studies do FMT "wrong". NG tube is probably OK, but they don't do it more than once, and they don't get a good donor (healthy, young, eats paleo or otherwise few refined foods), and the donor should not be from your household unless the donor micribiome is proven to be highly divergent from the recipient.
 
Thanks :)

The diet they recommend after FMT seems to be loosely based around Paleo and well aligned with the diet proposed in the book Grain Brain by Dr David Perlmutter. In their brochure they acutally have a few recommended books on diet:
The High Fat Diet - Zana Morris
Eat The Yolks - Liz Wolfe
Grain Brain
Wheat Belly - Dr William Davis.

Now, keep in mind that this is for ALL patients, I have not yet received any special recommendations for Crohns or IBD and likely won't until I'm at the clinic. But basically they seem to recommend to avoid gluten and refined starches, sugar and all kinds of processed foods. Eat animal proteins, a large variety of vegetables including raw, increase intake of fats such as ghee, coconut oil, olive oil. I'll ask them about adherence to diet, but I assume that they will want you to stay on such a diet through life. It's not very restrictive and probably good for you in many other ways if you can handle it.

I think the IBD-Aid diet which you follow is quite similar but more tailored to IBD obviously. IBD-AID is also very tailored to each patient with different diet for each stage, so quite different from most other diets.
I'm going to have to disagree with the claim that wheat is bad for our guts specifically because of this study. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3023594/

GMO wheat on the other hand may present some issues, or wheat that contains some herbcide residues like glyphosate. http://www.ncbi.nlm.nih.gov/pubmed/23224412

Also, high animal protein diets have been linked to the development of IBD. I would restrict the meat to fish only and 2-3 times a week. You may also remove meat and eggs completely from the diet. http://www.npr.org/blogs/thesalt/20...d-dairy-alters-gut-bacteria-a-lot-and-quickly

high fat diets are also not very good on the gut bacteria.
Good bacteria love polysachrides or complex carbs/starches/fiber. Basically plant foods, whole grains, tubers,legumes,nuts, fruits and veggies.
 
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The problem with wheat isn't the effect on the gut microbiome, its the fact that in many of us, the proteins are potent antigens. Reading "Grain Brain" is worth the time.

The raw foods on the recommended diet are supposed to be organic and full of a wide variety of microbes. The recommendation includes lots of fermented foods (kraut, kefir, etc).

I'll take something a paleo person could have somehow got their hands on rather than ANYTHING that is refined!! No matter what a narrow study might suggest.

I'm sure there are people with genomes and microbiomes that do not tolerate raw foods and meat of the paleo diet, so I wouldn't say its for everyone.
 
The problem with wheat isn't the effect on the gut microbiome, its the fact that in many of us, the proteins are potent antigens. Reading "Grain Brain" is worth the time.

The raw foods on the recommended diet are supposed to be organic and full of a wide variety of microbes. The recommendation includes lots of fermented foods (kraut, kefir, etc).

I'll take something a paleo person could have somehow got their hands on rather than ANYTHING that is refined!! No matter what a narrow study might suggest.

I'm sure there are people with genomes and microbiomes that do not tolerate raw foods and meat of the paleo diet, so I wouldn't say its for everyone.

So I considered the information you suggested and did some more information and found this.
http://www.ncbi.nlm.nih.gov/pubmed/6502368

It doesn't mean that wheat is bad for humans though, just means that wheat might be bad for those with small intestinal issues. I'm wondering if this relationship isn't similar to other foods that affect other symptoms of IBD, like lactose and sucrose and select polysacharides which is all the basis for the specific carbohydrate diet. not in the sense that they all stimulate antibodies, but in the sense that they influence certain symptoms. There is good reason that all of these relationship between food and certain diseases symptoms are related to the bacteria in the gut. This is another reason why restoring the missing bacteria with fecal transplant is planned for the use in many diseases, there are FDA studies for FMT in diabetes and autism, and some reports of recovery from ALS and multiple sclerosis.
 
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Does anyone have concerns over fmt procedure? There are so many unknowns. We don't know what to expect, just hoping to get better. We can get worse; even unknowingly. For example, I have concerns over fmts effects on mental and neurological health. We know it can change them. Genetics play role on gi flora and how body handles the microorganisms. One's gut flora may make himself/herself healthy but can make another one sick or change him/her physically, mentally. We don't know how we are going to react to another one's microorganisms.

http://www.ucsf.edu/news/2014/08/116526/do-gut-bacteria-rule-our-minds
http://www.medicalnewstoday.com/articles/290747.php
http://ofid.oxfordjournals.org/content/2/1/ofv004.full
http://www.pri.org/stories/2014-09-...influence-both-our-physical-and-mental-health
 
Does anyone have concerns over fmt procedure? There are so many unknowns. We don't know what to expect, just hoping to get better. We can get worse; even unknowingly. For example, I have concerns over fmts effects on mental and neurological health. We know it can change them. Genetics play role on gi flora and how body handles the microorganisms. One's gut flora may make himself/herself healthy but can make another one sick or change him/her physically, mentally. We don't know how we are going to react to another one's microorganisms.

http://www.ucsf.edu/news/2014/08/116526/do-gut-bacteria-rule-our-minds
http://www.medicalnewstoday.com/articles/290747.php
http://ofid.oxfordjournals.org/content/2/1/ofv004.full
http://www.pri.org/stories/2014-09-...influence-both-our-physical-and-mental-health
Yes a few people have become worse after FMT, and this may be related to donor selection/ donor health. More to learn, this is why lots of studies are planned through end of 2016. But with many studies already done, we can say with some confidence that we know something about FMT for its use in crohn's disease, most of the time, it helps dramatically. the potential of developing a new disease is there and has occured, although very rare and that was in c. difficile patients that had FMT, not IBD patients. There was also the recent event a c. difficile patient developed obesity after fmt from a donor that was overweight.
 
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Yes a few people have become worse after FMT, and this may be related to donor selection/ donor health. More to learn, this is why lots of studies are planned through end of 2016. But with many studies already done, we can say with some confidence that we know something about FMT for its use in crohn's disease, most of the time, it helps dramatically. the potential of developing a new disease is there and has occured, although very rare and that was in c. difficile patients that had FMT, not IBD patients.
I am usually very critical of how some of these studies are structured, but was pleased to see that in the recent pediatric study we have been talking about here, they did a before and after gut microbiome "fingerprint" to ascertain if the old microbiome was replaced, or if it reasserted itself. The entire cohort might be used to see if getting a new micribiome has any statistically relevant correlation to negative outcomes.

With respect to what bad outcomes are possible, and maybe some of those are subtle, I did think a bit about that. My decision was to go on chemicals that would compromise my immune system, or give it a try on the immune system improvement side. There were so many cases where the maintenance of the disease with existing therapies was a constant downhill slide, and I'm not that old, so if I went and knocked down my immune system, I'd hit bottom. And with so many documented C.Diff cases with basically no really bad outcomes, it was an easy decision for me; when a very bad outcome is on the horizon with the traditional approach, a new solution that appears safe, but not all is known, looks much better.
 
So I considered the information you suggested and did some more information and found this.
http://www.ncbi.nlm.nih.gov/pubmed/6502368

It doesn't mean that wheat is bad for humans though, just means that wheat might be bad for those with small intestinal issues. I'm wondering if this relationship isn't similar to other foods that affect other symptoms of IBD, like lactose and sucrose and select polysacharides which is all the basis for the specific carbohydrate diet. not in the sense that they all stimulate antibodies, but in the sense that they influence certain symptoms. There is good reason that all of these relationship between food and certain diseases symptoms are related to the bacteria in the gut. This is another reason why restoring the missing bacteria with fecal transplant is planned for the use in many diseases, there are FDA studies for FMT in diabetes and autism, and some reports of recovery from ALS and multiple sclerosis.
Celiac, aka small intestine issues, is the worst way that a gluten sensitive individual is effected. Continual exposure to those proteins over a time span can manifest into symptoms that are recognized by tradition medicine practitioners. But others may also be reacting to gluten (ie an immune response), that is not manifested in the small intestine. There seem to be many cases where going gluten free had a huge positive effect on a wide variety of diseases., as you say. Now that more detailed gluten sensitivity tests are available, the research community will be able to better connect the dots. My guess is that in the future we will use someones genetics plus gut microbiota profile and maybe exposure to a pathogen will have some predictive power for disease susceptibility. You can't change genetics, but you can control gene expression to some extent, and once we learn how, we will be able to purposefully manipulate the gut bugs. And also we are getting better at finding pathogens (ie MAP virus). The future is bright, if you can live long enough for the research to be done.
 
consider adding sunchoke/Jerusalem artichoke and dandelion greens as excellent sources of inulin. or cold baked potatoes as an excellent form of resistant starches which are super foods for bacteria. add gradually though as metabolism of these prebiotic forms by bacteria do produce a bit of gas.
 
This is an interesting article

Because the safety of FMT has not been fully established, FMT anarchy is a problem from a public health perspective. DIY instructions are available online on websites such as The Power of Poop, but armchair practitioners still risk conducting FMT using poorly screened fecal specimens, suboptimal techniques and unhygienic equipment.

The status quo should also be disconcerting to the scientific community, which has been forced by the FDA to watch an abundance of potential DIY patient data pass by.

Given this uncertainty, it may be worthwhile to develop a network of supervised FMT clinics that bypasses regulatory requirements. Although far from being directly analogous, the concept of sites for supervised heroin injections could serve as a model for such a system.

Supervised FMT clinics could provide DIYers with educational resources and instruction on proper technique, while serving as access points through which people can obtain screened and standardized fecal specimens
http://www.gastroendonews.com/ViewA...=Blog&d_id=558&i=March 2015&i_id=1160&tab=RSS
 
FMT wasn't used for IBD, but this is just a touching story.

Biomed Rep. 2015 Mar;3(2):173-175. Epub 2014 Dec 15.
Pediatric severe pseudomembranous enteritis treated with fecal microbiota transplantation in a 13-month-old infant.

Abstract
Fecal microbiota transplantation (FMT) is a procedure used to restore the intestinal microbiota of a diseased individual using indigenous intestinal microorganisms from a healthy donor. The current case report presents the first case of a 13-month-old male with severe pseudomembranous enteritis (PME) treated with FMT. The infant was admitted to Shanghai Children's Hospital with a 2-month history of diarrhea, and a 1.5-month history of retractable edema, hypoalbuminemia, electrolyte disturbance and malnutrition. Besides necessary nutritional support, the patient was treated twice with oral metronidazole combined with or without vancomycin. Diarrhea was partially remitted. However, the infant had bloody or dark-green feces, and a distended abdomen. On day 96 from the initiation of the disease, a single FMT via a nasal jejuna feeding tube was performed. From day 2 until 4 months post-FMT, the patient presented with no diarrhea, normal feces and a satisfactory weight. To the best of our knowledge, this is the first pediatric PME treated with FMT. The current data show that FMT is an efficient choice for recurrent clostridium difficile infection and PME in adults and a few pediatric cases. Due to a lack of safety and effectiveness data, treatment should be cautiously applied in the pediatric population.
 
Link between lifestyles of indigenous communities, gut microbial ecologies discovered
"In our study, we show that these lost bacteria are in fact multiple species that are likely capable of fermenting fiber and generating short chain fatty acids in the gut. Short chain fatty acids have anti-inflammatory properties. This raises an important question, could these lost Treponema be keystone species that explain the increased risk for autoimmunce disorders in industrialized people?
http://www.sciencedaily.com/releases/2015/03/150325132615.htm
 

Lady Organic

Moderator
Staff member
Clinical, microbiological, and immunological effects of fructo‐oligosaccharide in patients with Crohn's disease:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856087/

From the research:
Patients received 15 g/day of FOS (Prebio 1; Nestlé, Switzerland) for consumption as a dietary supplement for three weeks. FOS contained a mixture of oligofructose (70%) and inulin (30%) provided in 15 g sachets to be dissolved in water or food.

I just bought Prebiotin : http://www.prebiotin.com/product/bone-health/
 
Clinical, microbiological, and immunological effects of fructo‐oligosaccharide in patients with Crohn's disease:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856087/

From the research:
Patients received 15 g/day of FOS (Prebio 1; Nestlé, Switzerland) for consumption as a dietary supplement for three weeks. FOS contained a mixture of oligofructose (70%) and inulin (30%) provided in 15 g sachets to be dissolved in water or food.

I just bought Prebiotin : http://www.prebiotin.com/product/bone-health/
The ingredients say "oligofructose enriched inulin", which makes me wonder how much the inulin has been enriched. The oligosaccharides are made, I think, from culturing milk with specific bacteria (ie not cheap to make), wheras inulin can be extracted from chicory (ie cheap to make). I'd rather take the various ingredients separately myself, so I know more precisely what I was getting, and not getting stuff I don't need or want. But maybe these folks have found the magic ratio of these ingredients.
 

Lady Organic

Moderator
Staff member
they've told me Prebiotin is from chicory root. At this time, i am more comfortable taking vegetal extract, as I no longer consume animal milk products. I cant find on Bimuno website the ingredients they use.

On Bimuno website, I found only this explanation: '' Fortunately, prebiotics can be extracted and concentrated from these natural sources. Examples include inulin from chicory and FOS (Fructo-oligosaccharides) which can either be extracted from plant sources or produced commercially.

A newer much more advanced form of prebiotics is now also available known as GOS (Galacto-oligosaccharides). GOS prebiotics are produced by combining the sugars present in milk in a way that mimics the structure of highly beneficial prebiotics naturally present in mother’s milk.''

but I cant find anywhere where they list the later ingredient in the composition of their products...?
 
The inulin in Prebiotin would most likely come from chickory root, that sounds about right. As confirmed by your quote from the Bimuno site, FOS products (but not Bimuno) are derived from plants, whereas GOS products are made starting with milk sugar. You could look and see if you could find the GRAS (generally regarded as safe) application for Prebiotin, that might tell you more.

I think that all the GOS products (not FOS, like Prebiotin) start with food-grade lactose, which is manufactured from sweet whey (a by-product during the manufacture of cheese). Then they use an enzyme (beta-galactosidase) to catalyze the transgalactosylation reaction. And although they all start out with lactose, the various manufacturers might use different microorganisms (bifodobacterium bifidum, bacillus circulans, sporobolomyces singularis, etc) to get the enzyme. That effects the fractions of mono, di, tri, and higher saccharides as well as the degree of polymerization and beta configurations.

I just bought more Bimuno for myself. I was wrong about the price before. I bought a 9 month supply (to save on shipping from the UK) and it came to $0.37/day. I'm not sure it's doing anything good for me, but it was recommended by folks I trust, so it's cheap insurance.

And finally, the link back to this FMT thread, for those that are skimming this stuff, is that there is a theory that one may alter the composition of the gut microbiota towards a healthier composition by feeding the good "bugs" something they like to eat. So if you do any kind of FMT, whether from the top or bottom, it might be wise to give those new good bugs something they like to eat.
 
I didn't think i experienced any benefits from my last fecal transplant attempt, but i actually gained 5 more pounds since december! I'm still on the same caloric intake and physical activity levels. Haven't weighed this much in 7 years. In total i gained 15 pounds in about 6 months without doing anything except FMT. haha I dont regret drinking it!! cant wait to improve upon my protocol for the next FMT!
 
Bill that's really encouraging. Sounds like it needs time to work and not just immediate results. Thanks for keeping us informed.
Yes time and also the donor has to follow a strict diet so it increases the quantity of the bacteria I need to control inflammation. if you read the first post and all the studies that have been done so far some cases have taken very little time at all to turn around, until we get a consistent quantity of bacteria in an FMT like a pill for example, the results will be more consistent as well.

EDIT: it is almost entirely certain that I replaced some bacteria in my gut that had been missing since taking antibiotics in 2008 right before my health declined, and it is helping to extract more energy/calories from my food, which is helping me maintain a normal weight.
 
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Spooky1

Well-known member
Location
South Northants
I for one so appreciate your efforts and info on this thread, Bill, that it does give me hope. for some reason I really feel there is now a silver lining in the stormy skies for people like me. I genuinely believe it is the way forward. they are also looking to FMT for diabetes, motor neurone and MS. I really believe, as 75% of the immune system is in the gut lining, that we need better gut flora. I'm so sure this will cure us and allow us out our houses and to do what normal people take for granted.

Thanks so much for all the info. And the best of luck with your own travels with FMT.
 
Ok here is something brand new, and not good on FMT, sad. At least for UC.

Cannot get the paper but can get supplement info which pretty much tells the whole story.

I cant help but wonder if the donor stool prep kills off important anaerobes.

These 3 people got up to 30 rounds of FMT, but all relapsed eventually.
But while taking the FMT, were doing well.

Old Mike

Serial Fecal Microbiota Transplantation Alters Mucosal Gene Expression in Pediatric Ulcerative Colitis

Came out this AM.



here is the supplement link just click on the doc

http://www.nature.com/ajg/journal/v110/n4/suppinfo/ajg201519s1.html
 
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Ok here is something brand new, and not good on FMT, sad. At least for UC.

Cannot get the paper but can get supplement info which pretty much tells the whole story.

I cant help but wonder if the donor stool prep kills off important anaerobes.

These 3 people got up to 30 rounds of FMT, but all relapsed eventually.
But while taking the FMT, were doing well.

Old Mike

Serial Fecal Microbiota Transplantation Alters Mucosal Gene Expression in Pediatric Ulcerative Colitis

Came out this AM.



here is the supplement link just click on the doc

http://www.nature.com/ajg/journal/v110/n4/suppinfo/ajg201519s1.html
Thanks!! I will read this later when I have time, but for now I would like to say in this thread we are always interested in examining any evidence of fmt, whether it contradicts or supports the theory that it could cure the disease, as in any issue, we will have evidence that seems to support and contradict certain facts, and we sort it all out to hopefully get to the truth of the matter. and just a reminder, in the beginning of the thread there are 2 cases of both forms of IBD that have been 100% free of IBD symptoms ranging from 13-25 years post FMT, as reported in medical journals by top researchers in the field of scientific medicine.
 
Has anyone ever heard of a FMT used following anti-MAP treatment? It seems to me a FMT would be useful in preventing re-infection, provided the bacteria hold.
 
Has anyone ever heard of a FMT used following anti-MAP treatment? It seems to me a FMT would be useful in preventing re-infection, provided the bacteria hold.
In alot of these studies they give antibiotics to the patient before hand to suppress/eliminate the existing microbiome which will have lots of bad bacteria. Its doubtful if its the same antibiotics that would be used for anti-map therapy though, but this is similar strategy to what you are suggesting, which is killing the existing bad bacteria before restoring the good bacteria with an FMT. It probably help the new bacteria take hold in the gut although I don't recall any specific studies that tried to answer this question. Perhaps antibiotics before hand aren't necessary, but i believe only when we have a fecal microbiota transplant pill will we get to that point because when the desired bacteria is in a high enough concentration, all the pathogens would likely be obliterated anyway.
 
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My understanding of this is limited, but I think that MAP may give the bacteria from any FMT a more difficult time in colonizing the ileum, and that removing MAP specifically may see better results from FMT, at least in those of us with Crohn's in the ileum.
 
My understanding of this is limited, but I think that MAP may give the bacteria from any FMT a more difficult time in colonizing the ileum, and that removing MAP specifically may see better results from FMT, at least in those of us with Crohn's in the ileum.

So far it seems IBD GI microbiome is very resistant to being corrected with a fecal microbiota transplant when compared to doing FMT for C. Difficile infection. Maybe one of the reasons is because of the type of pathogens that we harbor may be different like Intracellular MAP or AIEC, or perhaps just because there tends to be more inflammation involved with IBD.
 
This is EXACTLY what I´m planing to do.

1) AntiMAP-therapy - antibiotics
2) FMT

Results? Hopefully very good

Why? Because of this:
_____________

Dear Sebastian

XXX remounted the path block which had been displaced in the post to us and it went fine.

We ran the MAP test on the 2 skin biopsies obtained from your left lower leg (DDC1103/13 and DDC2083/13)

and the one from your scalp (522/13) and examined them today.

Result:

In the leg samples MAP infection was widely present in cells of the epidermis with scattered sub-epidermal foci.

The appearances in both biopsies were very similar.

In the scalp sample MAP infection within cells in the epidermis and sub-epidermis was conspicuous and much more prominent

than in the leg. Involvement of hair follicles and what looked like sebaceous glands was also seen.

Conclusion:

Together with my previous report (below) on your gut biopsies, this indicates you had a severe MAP infection of your gut

with systemic dissemination and metastatic skin involvement.
 
This is EXACTLY what I´m planing to do.

1) AntiMAP-therapy - antibiotics
2) FMT

Results? Hopefully very good

Why? Because of this:
_____________

Dear Sebastian

XXX remounted the path block which had been displaced in the post to us and it went fine.

We ran the MAP test on the 2 skin biopsies obtained from your left lower leg (DDC1103/13 and DDC2083/13)

and the one from your scalp (522/13) and examined them today.

Result:

In the leg samples MAP infection was widely present in cells of the epidermis with scattered sub-epidermal foci.

The appearances in both biopsies were very similar.

In the scalp sample MAP infection within cells in the epidermis and sub-epidermis was conspicuous and much more prominent

than in the leg. Involvement of hair follicles and what looked like sebaceous glands was also seen.

Conclusion:

Together with my previous report (below) on your gut biopsies, this indicates you had a severe MAP infection of your gut

with systemic dissemination and metastatic skin involvement.
Best of luck to you! Keep us posted, please :)
 
Just one pesky little hole I have to poke in this idea...

I can't find the article ATM, but I remember reading that people without Crohn's also have an abundance of MAP, and in the study the people without Crohn's had significantly more MAP than people with Crohn's, which the study posited was due to existing immunosuppressants possessing anti-MAP qualities.

Perhaps the Faecalibacterium prausnitzii found in healthy poo might cancel out the MAP, but it seems to me a FMT might actually have a chance of reinfecting the recipient.
 
This is EXACTLY what I´m planing to do.

1) AntiMAP-therapy - antibiotics
2) FMT

Results? Hopefully very good

Why? Because of this:
_____________

Dear Sebastian

XXX remounted the path block which had been displaced in the post to us and it went fine.

We ran the MAP test on the 2 skin biopsies obtained from your left lower leg (DDC1103/13 and DDC2083/13)

and the one from your scalp (522/13) and examined them today.

Result:

In the leg samples MAP infection was widely present in cells of the epidermis with scattered sub-epidermal foci.

The appearances in both biopsies were very similar.

In the scalp sample MAP infection within cells in the epidermis and sub-epidermis was conspicuous and much more prominent

than in the leg. Involvement of hair follicles and what looked like sebaceous glands was also seen.

Conclusion:

Together with my previous report (below) on your gut biopsies, this indicates you had a severe MAP infection of your gut

with systemic dissemination and metastatic skin involvement.

Seb, can you please pm me how you got the tests done, it really interested in getting some tests done, Though Borody himself told me I'd have little chance of getting anyone to do tests for me..
 
sir clausin,

another additional option is to take autophagy inducers, like resveratrol and lithium. This will killl the intracellular bacteria by activating autophagy. My experiments with these substances led to a momentary increase in symptoms and then slight improvement afterwards, highly suggesting something was killed off. i take about 2.5 mg of lithium once a week and resveratrol everyday. every 2 weeks i increase my dosage of resveratrol to the maximum dose, to again clear bacteria i may have accumulated over that length of time. I also believe higher doses of b12 methylcobalamin have a similar effect, but im not sure if its enhancing autophagy or just killing more bacteria in a different way but the experiance is similar to resveratrol and lithium so perhaps the biological mechanism is the same.
 
Rollinstone: You can´t, it´s not open to the public yet. It will become available further down the road.

wildbill_52280: That´s interesting, I will look into it. Thanks.

mrjustaguy: Nah, don´t think so, since a normal functioning immune system will clear out the MAP, not saying that healthy people have none. It´s just that it´s the main thing here, massively infection of MAP that can´t be killed of by our faulty immune system since it´s blind to it. Also, find the source please for your claim.
 
Rollinstone: You can´t, it´s not open to the public yet. It will become available further down the road.
Sir Clausin, with the report mentioning metastic skin involvement, would I be wrong to assume you had visible lesions on your lower leg and scalp that were biopsied? I'm curious whether CD presents with skin lesions so far removed from the GI tract like this. Did they exclude leprosy, also a mycobacterial infection but more typically involves the skin?
 
Bah! Having trouble finding that article, I'll post it as soon as I do.

I think it was on one of the main advocacy sites for the MAP vaccine, but I can't seem to get it.
 
Sir Clausin, with the report mentioning metastic skin involvement, would I be wrong to assume you had visible lesions on your lower leg and scalp that were biopsied? I'm curious whether CD presents with skin lesions so far removed from the GI tract like this. Did they exclude leprosy, also a mycobacterial infection but more typically involves the skin?

That is correct, I did have a big lesion on my leg (Pyoderma Gangrenosum) and scalp lesions (Scarring folliculitis). These were diagnosed by swedish doctors and they treat me as an EXTREMLY rare case. Most GI-doctors I´ve seen never have CD-patients with skin involvement. Nevertheless it´s not unheard of http://www.ccfa.org/resources/skin-complications-of-ibd.html

EDIT: MAP is not found in leprosy, just got it confirmed so the answer is no. I do crohns, not leprosy.
 
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