Spooky1
Well-known member
Good luck with that, Nothing. keep us informed please.
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....
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.
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/
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.
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/
Lol! I totally get the fat/skinny thing is real. I'd rather be fat than sick, though.... Have you any new hobbies that you didn't have prior to FMT?
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...... 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.
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
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!
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.''
The go-to good gut bacteria food is thought to be galactooligosaccaride prebiotics .
You are on the right track with root veggies. I wrote a wiki page here: http://www.crohnsforum.com/wiki/Prebioticscould 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''
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...
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:
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''
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...
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.One packet? that works out expensive doesn't it?
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.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...
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.
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.
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
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.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.
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.
http://www.gastroendonews.com/ViewA...=Blog&d_id=558&i=March 2015&i_id=1160&tab=RSSBecause 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
"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?
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.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/
Bill that's really encouraging. Sounds like it needs time to work and not just immediate results. Thanks for keeping us informed.
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
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.
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.
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.
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?
This article talks about researchers looking at the role of dysbiosis in inflammation of the gut and how that inflammation cascades into other events including diminished effectiveness or even death of paneth cells, a key defense component in the epitheleal lining of the intestine.
They hope their research can uncover how to make fecal transplants more effective for CD and UC treatment.