FECAL TRANSPLANTS: A Guide

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I've researched the fecal transplant and don't think I could do it. Probiotics are very helpful. Even if someone seems healthy they could still carry unknown pathogens or parasites. Not only is the idea gross but the risk is incredible.
 
Alliesavage said:
I've researched the fecal transplant and don't think I could do it. Probiotics are very helpful. Even if someone seems healthy they could still carry unknown pathogens or parasites. Not only is the idea gross but the risk is incredible.
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Yes some risks exist, so far studies have shown its pretty safe. I think it's been done at least 1000 times for C. diff infection, very few problems but some events like people developing new autoimmune disease have occured as well as some diseases like parkinsons and multiple sclerosis improving. None of them clearly related to the fecal transplant. This is why screening and knowing your donor is super important. Without a doubt, you just cant choose any random person to become a donor, they have to be very healthy. By way of comparison antibiotics are now known to be very destructive to the microbiome causing 80% of c. difficile cases which can lead to death, but we currently call this "medicine" which is actually is in many cases. Despite these known risks, doctors continue to prescribe them.
 
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Women had a FMT in 2011 via colonoscopy and claims she is still in remission with no meds to this day. She is one of the lucky ones I guess. If your donor has good stool and the procedure is done well then this is one possible scenario, but always seemed less likely to achieve these results with colonoscopic method rather then enema or nasogastric tube, but i guess it can happen.

http://www.healingwell.com/community/default.aspx?f=38&m=3757835
 
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wildbill_52280 said:
Women had a FMT in 2011 via colonoscopy and claims she is still in remission with no meds to this day. She is one of the lucky ones I guess. If your donor has good stool and the procedure is done well then this is one possible scenario, but always seemed less likely to achieve these results with colonoscopic method rather then enema or nasogastric tube, but i guess it can happen.

http://www.healingwell.com/community/default.aspx?f=38&m=3757835
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One other thing, I think this was before the regulations on FMT became really strict. Could you imagine there was a time when doctors could have done this to people with IBD 4 years ago? Only after the procedure was shown to be so effective for c diff was when they restricted access to it, it's kind of strange if you ask me. I vaguely recall its use was restricted because now that it was shown to be so good for treat c diff, they MUST protect people who will want to try it, which doesn't make much sense. I would think if it was shown to be so dangerous they would then restrict it for safety reasons and that was never the case so I believe it was restricted mainly for business reasons. Either way the DIY Fecal Transplant was what this thread was always about and maybe now i recall what motivated me to do it, the idea that something so promising had been ignored and misunderstood for a while and then restricted. 3 .5 years after I started this thread and a few good examples of success in IBD, we are still waiting to gain access to this treatment. But I do agree more research needs to be done to learn how to perform a successfull FMT in IBD, It's still a little hard to understand why it's taking so long when stool/bacteria is free and everywhere. Maybe its 150 years of believing bad bacteria is the sole cause of disease that has slowed things down, when we now see many bacteria are good and essential for health.
 
Openbiome has a full spectrum Fecal Transplant Pill. http://www.openbiome.org/fmtcapsules

These pills are not available to the public, but it would be nice to gain access for IBD studies or personal use as some of us are convinced it could cure us.
Openbiome is a stool bank which provides frozen stool samples to clinics around the USA for the use of performing a Fecal Microbiota Transplant, mainly for C. difficle because FMT is only approved for the use of that condition as of date. A recent trial of a small bacteria selection in an FMT pill failed for C. difficle, so a full spectrum pill is likely more promising and actually has been effective as a regular FMT for C diff in one study.
 
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Minor correction on this, they may be using the FMT pill form openbiome I was under the impression it was a room temp stable rather then frozen, open biome pill is frozen so this study may be using openbiome's pill.

Viability: 6 months at -20°C; 12 months at -80°C
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so you can keep it in a standard freezer for up to 6 months.
http://www.openbiome.org/treatment-information/


Just found this study in Boston, Massachusets, USA using Fecal Transplant pills for the treatment of IBD. They are not recruiting patients yet, I wonder why? either way its pretty cool and this is the second mention of FMT pill study in IBD. Been waiting for this like 3-4 years now. i dont think they are using the pills from openbiome though. https://clinicaltrials.gov/ct2/show/NCT02330211?term=fecal+microbiota+transplant&rank=5
 
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Interesting new trial is now recruiting at one site in the UK:

https://clinicaltrials.gov/ct2/show/NCT02998190?term=EB8018&rank=1

Trial description:

"Crohn's Disease is a chronic inflammatory disease of the gastrointestinal tract. Emerging evidence suggests that the microbiome plays an important role in triggering an abnormal mucosal immune response in patients with Crohn's Disease. Independent studies have demonstrated an imbalance of the microbiome with a significant increase of E coli with invasive properties, termed adherent-invasive E coli (AIEC). These AIEC bacteria attach to the gut wall of susceptible patients via the fimbrial adhesion protein FimH, and subsequently trigger inflammation by invading and proliferating within the gut wall. EB8018 is an oral small molecule that is designed to block FimH thereby preventing the entry of AIEC into the gut wall thereby disarming the bacteria without disrupting the gut microbiome."
 
AMazing!! Here is an interview of researchers who did the Fecal Microbiota Transplant study in Autism. They gave daily doses of FMT pills and not only did the patients acquire the donors bacteria, they were able to recruit new bacteria from there environment. So it seems the more your microbiome is restored, the better it is at selecting new bacteria from the environment to add the the community. Which also seems to explain why only a few FMT doses have little effect on IBD.

https://www.youtube.com/watch?v=3N4nZ26aw8Y
 
Scipio said:
Randomized placebo-controlled research announced at the current ECCO meeting shows significant benefit for FMT in UC patients using multi-donor transplant:

https://www.ecco-ibd.eu/index.php/p...-randomised-placebo-controlledx00a0trial.html
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this study did show greater benefit of FMT compared placebo which is great, and I recall this report by Doctor Borody where they used 3 donors for FMT in Crohn's where the woman seemed completely cured 13 years later.

"When Professor Borody offered this chance of a cure I thought: what if it works?" she said.

"They put a nasal tube down into my small intestine. I had three donors - about 950 mils - and all up it took about five hours."
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http://www.abc.net.au/news/2014-03-18/sydney-doctor-claims-poo-transplants-curing-diseases/5329836


the day when we get consistent results is hopefully around the corner now that openbiome is manufacturing FMT pills, but i would have hoped this UC study would have more effective using mutiple donors, but there are perhaps other variables to each experiment that aren't listed which would help further explain why one protocol would be more effective over the other.
 
Here is more evidence of antibiotics negative effect on the Microbiome.

"Our study shows that the C difficile epidemic was an unintended consequence of intensive use of an antibiotic class, fluoroquinolones, and control was achieved by specifically reducing use of this antibiotic class, because only the C difficile bugs that were resistant to fluoroquinolones went away," Crook explained. "Reducing the type of antibiotics like ciprofloxacin was, therefore, the best way of stopping this national epidemic of C difficile, and routine, expensive deep cleaning was unnecessary."

http://www.infectiousdiseaseadvisor...resulted-in-cdi-decline-in-uk/article/634329/
 
Really making some progress on FMT pills!! Just waiting for them to be used in IBD!

For the study, UTHealth and Kelsey Research Foundation investigators enrolled 72 patients who had at least three bouts of recurrent C-diff in a clinical trial and treated them with either fresh, frozen or freeze-dried FMT product via colonoscopy. Fresh FMT product produced a 100 percent cure rate among participants; frozen product produced an 83 percent cure rate and freeze-dried product produced a 69 percent cure rate.
Frozen and fresh product fully restored the microbiota diversity among participants within seven days after treatment.

Researchers saw some improvement in microbiota diversity among participants treated with freeze-dried product after seven days and full restoration of healthy bacteria within 30 days.

"This is the first study to show that frozen and freeze-dried microbiota are as good as fresh material, so that we never have to use fresh again. It's a logistical nightmare to use fresh product. If we were going to treat you today, a donor would have come in two hours before, we would have already isolated the sample and then we would have to administer it the same day. A pill form of the product could make all of this easier," said Herbert L. DuPont, M.D., senior author and director of the Center for Infectious Diseases at UTHealth School of Public Health.


Read more at: https://medicalxpress.com/news/2017-03-paves-clostridium-difficile-treatment-pill.html#jCp
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The company Seres created an FMT pill with a select species of bacteria to treat c. difficle infection as a replacement for a traditional Fecal Microbiota Transplant. This recent clinical trial was considered a failure but they are going to do the experiment again and make a few changes to hopefully make the drug more effective.

Seres has said that a misdiagnosis of certain patients in the earlier trial meant that some participants did not actually have C. diff., and that some patients may not have gotten a high-enough dose of SER-109. In the new trial, the company says it will use a more accurate mechanism to measure the infection, and patients will receive a dose that is 10 times higher.
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Another company plans to make a FMT pill for IBD. http://www.businesswire.com/news/ho...-Takeda-Announce-Global-Collaboration-Develop

I'm still wondering whats going on with the other companies that were supposed to make one. Also we are still waiting on the IBD studies using FMT pills now Openbiome makes them!! So I know they are available to every researcher and doctor now since December of 2016. Pills could have been made manually by scientists with a centrifuge for years now. I'm sure it's all right around the corner though, and it seems that way. I'm an impatient person I guess.
 
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Study of colonoscopic FMT in U.C. combining multiple donors to increase Bacterial diversity in the dosage. http://journals.lww.com/ibdjournal/...of_High_Diversity_Fecal_Microbiota.98583.aspx

This was cool to see another study on FMT but I'm not sure this is enough to demonstrate whether or not a multi donor FMT is more effective then a single donor FMT, it still helps I'm sure, but there are many variables that affect the outcome and if there is little attempt to track them all in one study, it's just going to take longer to improve the success rate. Just waiting for us to use a long term oral dose FMT pill in IBD patients which also ensures a high fiber diet in the patient, maybe that's enough to get a 90% success rate, then we wont need any further manipulations of a protocol.
 
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Fecal microbiota transplantation cured epilepsy in a case with Crohn's disease: The first report.

Abstract

Fecal microbiota transplantation (FMT) is a promising strategy that involves reconstruction of gut microbiota. Recently, it has been considered as a treatment of Crohn's disease (CD) and certain neurological diseases. Here, to the best of our knowledge, we report the first case that used FMT to achieve remission of intestinal and neurological symptoms in a girl with CD and a 17-year history of epilepsy. During the 20 mo of follow-up, FMT has proved its efficacy in preventing relapse of seizures after withdrawing the antiepileptic drugs. Furthermore, this finding highlights the role of microbiota-gut-brain axis and inspires a novel treatment for epilepsy through remodeling gut microbiota.

https://www.ncbi.nlm.nih.gov/pubmed/28596693
 
The University of Vermont is recruiting U.C. patients for an FMT study. They will be using an FMT pill daily so it may be a more effective and easier way to perform an FMT then enemas, colonoscopies or nasogastric tubes.
UVM Medical Center: You are still looking for patients for the trial. If somebody’s interested, what do they do?

Dr. Peter Moses: Well, they just contact us. Our trial is registered with the FDA. If you go to clinicaltrials.gov and in the search box type in FMT Vermont, it’ll come right up and the contact information is there. People can contact me and they can contact Megan Phillips who is our study coordinator.

UVM Medical Center: Probably, the easiest way to remember is switchboard at the UVM Medical Center is 847-0000. You could just ask for Dr. Peter Moses or Megan Phillips, as he said.
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UVM Medical Center: Your trial is about all ulcerative colitis. Why’d you pick that and what are you finding?

Dr. Peter Moses: Well, ulcerative colitis and Crohn’s disease, the two major forms of inflammatory bowel disease, have long been thought to have to do with the interaction of an individual who may be genetically susceptible and their environment, and the environmental piece has been thought to be their microbiology or their microbiome. There were a number of studies that have been published over the last five, maybe eight years that have been equivocal in their findings, but they’re mostly descriptive so they have to do with a patient’s clinical experience. We felt very strongly that we should back up and try to understand what the science of first disrupting and then replacing someone’s microbiome might be on this immune-mediated disease ulcerative colitis.

Our patients have some testing. Some of it is unique. We’re looking at T-cell function. We’re looking at inflammatory mediators. We’re looking at how much inflammation we can see under the microscope, but we’re also asking them how they feel. Their normal microbiome is disrupted with antibiotics. Then, after that disruption, it’s replaced with an FMT. Then, after the FMT, they undergo daily treatment bacteriotherapy with a capsule containing human stool from the same donor that they received the FMT.
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https://medcenterblog.uvmhealth.org/digestion/ulcerative-colitis-clinical-trial/
 
Not a remarkably successful study on FMT, but still pretty good.

Sci Rep. 2017 Jul 6;7(1):4753. doi: 10.1038/s41598-017-04984-z.
Multiple fresh fecal microbiota transplants induces and maintains clinical remission in Crohn's disease complicated with inflammatory mass.

Abstract
The ancient Chinese medical literature, as well as our prior clinical experience, suggests that fecal microbiota transplantation (FMT) could treat the inflammatory mass. We aimed to evaluate the efficacy and safety of multiple fresh FMTs for Crohn's disease (CD) complicated with intraabdominal inflammatory mass. The "one-hour FMT protocol" was followed in all patients. Twenty-five patients were diagnosed with CD and related inflammatory mass by CT or MRI. All patients received the initial FMT followed by repeated FMTs every 3 months. The primary endpoint was clinical response (improvement and remission) and sustained clinical remission at 12 months. Secondary endpoints were improvement in size of phegmon/abscess based upon cross-sectional imaging and safety of FMT. 68.0% (17/25) and 52.0% (13/25) of patients achieved clinical response and clinical remission at 3 months post the initial FMT, respectively.

The proportion of patients at 6 months, 12 months and 18 months achieving sustained clinical remission with sequential FMTs was 48.0% (12/25), 32.0% (8/25) and 22.7% (5/22), respectively. 9.5% (2/21) of patients achieved radiological healing and 71.4% (15/21) achieved radiological improvement. No severe adverse events related to FMT were observed. This pragmatic study suggested that sequential fresh FMTs might be a promising, safe and effective therapy to induce and maintain clinical remission in CD with intraabdominal inflammatory mass.
 
Lady Organic said:
Anyone know if complete cleaning with prep is needed just before colonoscopy transplant with most doctors and researchers performing it today? Thanks.
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At this point i think everyone is trying different things still and documenting them, with not much of a clue how each variable effects the efficacy rate. look up a few of the latest studies i suppose, that could give you some answers but it would be along the lines using antibiotics before hand to better prepare the microbiome to accept new organisms which i vaguely recall did show greater efficacy rates. Don't quote me on that though ,so again, that could be looked up.

I would personally like to keep as many original organisms I had, skip the antibiotics, and just increase the treatment dosage of bacteria and use other means to increase the transfer of bacteria like a high fiber diet which also has been shown to increase FMT efficacy, or I'm referring to the pectin study which showed that. But I assume most types of fiber found in food could do the same thing.
 
Hi,

I'm new to this forum and very interested in this topic. I have viewed all in this thread and didn't see any canadian clinic trial on CD. Is there any doctor doing this in Canada?

Thanks,
Lucy
 
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Thank you all!

My husband got CD more than 16 years ago. He used to take both Imuran and Ascal and stopped Imuran after diagnosed merkel cell carcinoma. We decided to not take any immune suppressor drugs as these are the root cause of the cancer. He's doing ok for now but we are seeking alternative way to treat CD. This is very good news for all of us. Hope it will be approved soon. Looks like we don't meet the requirement of the clinic trial in canaca.

Regards,
Lucy
 
Lady Organic said:
Thank WildBill, but by ''prep'' I meant the cleaning of the colon with PG-Lyte to empty it!
Do we have to do it for most trials? Do we know?
thanks again!
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That is kind of along the lines/similar goal of clearing out the former microbiome, to make way for a new one, kind of like antibiotics would do. I'm not sure its necessary, but for an enema, perhaps it is beneficial.
 
FMT was given to someone with C.diff and FMT seemed to also eliminate their celiac disease symptoms, pretty cool!

Treatment of refractory celiac disease type II (RCD II) and preventing the development of an enteropathy associated T-cell lymphoma in these patients is still difficult. In this case report, we describe a patient with RCD II who received fecal microbiota transfer as treatment for a recurrent Clostridium difficile infection,
and remarkably showed a full recovery of duodenal villi and disappearance of celiac symptoms. This case suggests that altering the gut microbiota may hold promise in improving the clinical and histological consequences of celiac disease and/or RCD II.
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http://www.jgld.ro/wp/y2016/n3/a20.pdf
 
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Guerrero said:
Very interesting. Why this therapy is not tested widely?
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There are some more studies they should be in the first post.
It's hard to find donors that are willing and educated, and also hard to determine that the donors are healthy. Also, the concept of FMT has challenged roughly 100 years of how the human body works, the prevailing theory is that bacteria are all bad for us so the concept of a probiotic and the degree at which it can influence our health takes time for people to learn and accept.

One piece of good news is that FMT is FDA approved for a similar but more deadly G.I. condition called C. difficile, but not for any other condition. This does seem odd given all the evidence for IBD, but there are still studies that show no effect, so its all this contradictory information that confuses some people, one problem is that many of the protocols that are followed aren't well documented in these studies so they are sometimes hard to build upon and interpret which variables play a role in doing it successfully, regardless, we have still made progress even though it isn't super perfect and organized.

One solution is a stool bank that was started mainly to find healthy donors and store frozen stool samples for supply doctors to treat c. difficile, but last year they also created a pill version, and I vaguely recall some studies have used it for c diff, but I know it's available and could be used to treat IBD but I don't recall if they have done that yet. That could be more successful and super easy for the patient's and doctors but we don't know that yet, Still waiting for that FMT pill study. Openbiome makes full spectrum FMT pill, where other companies are trying to use a small selection of bacteria. Either strategy could work to restore the healthy diversity of microbes that live in the intestine.
 
I have been doing FMT for a while now (to address my Crohns not caused by C.Diff).. more frequently before and gradually tapering out. It has provided fantastic results (thanks to my donor). My colonoscopy last month for the first time ever showed no traces of inflammation.
(Had 2 resection surgeries before I started this).

I however did a combination of food restrictions, enteragam, probiotics and FMT (for a year and half).
 
vnag said:
I have been doing FMT for a while now (to address my Crohns not caused by C.Diff).. more frequently before and gradually tapering out. It has provided fantastic results (thanks to my donor). My colonoscopy last month for the first time ever showed no traces of inflammation.
(Had 2 resection surgeries before I started this).

I however did a combination of food restrictions, enteragam, probiotics and FMT (for a year and half).
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how often have you done FMT? how are you doing it, enema?
 
started with doing them 3 times/week for 2 months, later down to 2 times/week. Now down to 1 time/week. Will stop this for good in Dec. I may have done a few more but I started tapering out based on the Calprotectin test results. Enema worked for me as it could be self-administered.
 
I am doing this on my own (since FDA permits FMT in a hospital setting only for C Diff. induced Crohns). I do have a doctor monitor my overall health though.
 
vnag, how old is your donor and did you get a blood test for your donor, and other precautions? I assume you did but just making sure.

Have you ever frozen any of the samples? it seriously damages the bacteria and I've seen some people do this but not understand that it should not be done unless you use glycerol as a cryoprotectant, freezing kills about 80% of the bacteria or more.

Also, did you request the donor and yourself follow a high fiber diet? Doing All this will help your success.
 
I took the recommended precautions (screened the donor for all possible diseases).

I did not really have any food restrictions for the donor. Based on my personal research and knowledge from others, I picked a donor in my age group and ethnicity and a vegetarian (just like me).

I am not freezing the samples because of the reasons you described.. which is probably what got reflected on my biopsy (which came out as negative for colitis) and colonoscopy results (which showed no traces of inflammation)..
 
Really interesting Vnag! Before trying FMT, did you try the food restrictions and probiotics? In other words, do you think had you only done the FMT without the other things, it would have worked?

In any case, bravo!
 
Spooky 1,

Since there was at least 1 research paper on the nih website based on clinical trials for FMT for Crohns, that gave me more confidence to try this out. It is a calculated gamble (supported by research papers that I had to read to convince myself to try this) :).

I took a bit further when I found a research paper on 'tara gum' where tara gum (a food additive to icecreams, etc) with s. themophilus helped fixed the leaky gut by tightening the cell junctions in the gut as tara gum makes the flora stick to the gut walls longer.

I did FMTs with tara gum powder mixed to it :).


I can share the research papers if it helps..
 
Mommabear,


I have been doing food restrictions for a few years (being a vegetarian helped a lot). That helped minimize the symptoms. However, if/when cheated on food, symptoms got worse. So I wanted to look for a more permanent + natural option.

With probiotics, there was 1 particular family of bacteria which is found only in the gut (fecal bacteria prausnitzii) which (till date) cannot be produced commercially and it constitutes roughly sizable percentage of a healthy gut. (This was based on a research paper I found on the nih website). So that lead me to try FMT.

The one thing I found out about much later was "enteragam" (which provides the nutrients available in mother's milk - which is provided to the infants which helps build the immune system).

I added that recently to my probiotic cocktail with fantastic results. For the ones that are hesitating to do FMT, this maybe something to explore.
 
It definitely worked for me.

I came across this single research paper and decided to try tara gum (as it has no known side effects). No doctor's advise for me on this one :).

https://www.ncbi.nlm.nih.gov/pubmed/25291130

Notes:
1. Tara gum (powder) mixed with s. thermophilus is the key. Tara gum helps the probiotic bacteria stick to the gut wall longer. I mixed tara gum with my probiotic drink.

2. Tara gum is very hard to find in stores. I had to call a few companies that supplied this commercially to the food industry and got a sample. (10 lbs = $200 approx and with last for 4 - 5 years as you only need 500 mg - 1g/day)

A minor side effect: It gives you the feeling that your stomach is full/heavy for a while.
-----
For enteragam, my doc suggested this one. Your insurance may not cover this one as it is considered medical food.
 
For enteragam, my doc suggested this one. Your insurance may not cover this one as it is considered medical food.
 
vnag said:
Spooky 1,

Since there was at least 1 research paper on the nih website based on clinical trials for FMT for Crohns, that gave me more confidence to try this out. It is a calculated gamble (supported by research papers that I had to read to convince myself to try this) :).

I took a bit further when I found a research paper on 'tara gum' where tara gum (a food additive to icecreams, etc) with s. themophilus helped fixed the leaky gut by tightening the cell junctions in the gut as tara gum makes the flora stick to the gut walls longer.

I did FMTs with tara gum powder mixed to it :).


I can share the research papers if it helps..
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Tara gum most likely has properties like dietary fiber, which would encourage good bacteria to grow. Good bacteria can feed on dietary fiber. IT probably not a good idea to add any microbes to the FMT solution before you administer it, upsetting the natural balance could be a negative consequence.

This study showed that pectin fiber led to more restoration of microbiome diversity after FMT. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5095982/
I'm not so sure it's that different from consuming a high fiber diet orally though, but it could be.
 
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In my case, I did about 50+ FMTs without it.. then added tara gum with 50+ FMTs. I am not sure if it helped but definitely did not make it worse.
 
vnag said:
In my case, I did about 50+ FMTs without it.. then added tara gum with 50+ FMTs. I am not sure if it helped but definitely did not make it worse.
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I will send you pic of a dropper design to make pills, if you are not aware yet oral FMT has been more successful then enemas. but then again you have already done 100 FMT enemas, the most i recall ever hearing in a study was 80, so you've done alot of them! I've done about 3 oral fmt's only one had a noticeable effect where I gained 25 pounds in about 6 months and led to some improvements in appearance of stools and lower anxiety.
 
I used to monitor the calprotectin tests and symptoms and then decide on the frequency of FMTs.

Interesting (oral FMTs)... Since the immune system (microbiome) resides in the large bowel (and not the small), you may run into the scenario of SIBO (small intestinal Bacterial Overgrowth) if you do a pill. You way want to account for that (and the stomach acid).

Since I am at the end of my FMTs (will do 2 more and stop), I might just continue with the protocol I have customized for myself (which I have found it rather convenient/comfortable to do).
 
vnag said:
I used to monitor the calprotectin tests and symptoms and then decide on the frequency of FMTs.

Interesting (oral FMTs)... Since the immune system (microbiome) resides in the large bowel (and not the small), you may run into the scenario of SIBO (small intestinal Bacterial Overgrowth) if you do a pill. You way want to account for that (and the stomach acid).

Since I am at the end of my FMTs (will do 2 more and stop), I might just continue with the protocol I have customized for myself (which I have found it rather convenient/comfortable to do).
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All theory aside, there is actual science that does show oral is more effective, so there is not much need to worry, crohn's generally does effect the small intestine though, and enemas don't go very far into the colon, plus you can eat a high fiber meal right after wards, which would likely be very beneficial.
 
wildbill_52280 said:
I will send you pic of a dropper design to make pills, if you are not aware yet oral FMT has been more successful then enemas. but then again you have already done 100 FMT enemas, the most i recall ever hearing in a study was 80, so you've done alot of them! I've done about 3 oral fmt's only one had a noticeable effect where I gained 25 pounds in about 6 months and led to some improvements in appearance of stools and lower anxiety.
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Hi wildbill
Could you explain how you do oral fmt?
 
Please share the method (and pic of the dropper design) for this.

While my colon is normal now, I still have a stomach ulcer (not sure if it is Crohns induced). My doc is wanting me to take Dexilant or Carafate for this and I am looking to avoid this. I recently came across Siberian Pine nut oil for treatment of ulcers in general. So I have started on that one.
 
Guerrero said:
Hi wildbill
Could you explain how you do oral fmt?
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Sure ill do my best, but generally I don't recall all the specifics at the moment. Remember this is all experimental so no guaranties, and always screen your donor with a blood test for transmissable diseases and if possible other chronic diseases.

The next time I do an oral FMT, I plan to use my device to make pills making one then taking it and repeating that process for about 20min or until all are consumed. I'll put a pic up of my design soon but basically it's a large syringe on a wooden stand. The only thing I'm worried about is if the stool releases any gas while in the syringe i don't know if it will push the plunger out, since i haven't had a chance to use it, that's really the only question I have yet to answer. It's a simple design but you have to find the right size syringe. I'm not sure what the ratio of stool to saline will be, and i will be mixing it in a freezer bag and not a blender this is to limit exposure to oxygen as the bacteria are very sensitive to oxygen, they are strict anaerobes, oxygen kills them so mixing in an , almost, airtight bag will limit exposure to oxygen or way less compared to blender. The pills should be taken on an empty stomach or 4 hours after a meal and after 30-60 minutes you should eat a high fiber meal or take a fiber supplement immediately after the oral FMT. Donor should follow high fiber low sugar diet no chemicals for 2 weeks and I also suggest vitamin d supplements, their stool sample has to look good refer to bristol stool chart scale but I'm sure you know what a healthy stool looks like by now.

In the past I've mixed the stool sample in a blender with apple juice and then drank it straight, maybe 1 cups worth or two cups worth, don't recall. You'll have to keep your nose plugged to limit the smell and taste it really isn't all that bad though. The juice which is high in sugars was probably working against me but that was the one where I gained 25 lbs and now I'm back to my regular weight. Ever since diagnosis of crohn's, I've been about 10 pounds underweight. The second time I used saline and drank it straight but experienced no benefits I think they stool sample i had was not good that time. The saline or juice must be very cold, this will also make your taste buds a little numb and you wont taste much.

I'll try and get some good pics of the new pill maker!
 
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vnag said:
Please share the method (and pic of the dropper design) for this.

While my colon is normal now, I still have a stomach ulcer (not sure if it is Crohns induced). My doc is wanting me to take Dexilant or Carafate for this and I am looking to avoid this. I recently came across Siberian Pine nut oil for treatment of ulcers in general. So I have started on that one.
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Ill try and take some pics soon! busy next few days though!
 
Over several years I've been posting in this thread about my condition and actions I've taken. Some background is in
this post, which also spells out a multi-donor FMT I had done. But in short, I've had UC a long time and it's been mostly under control using 5-ASA's, but when they quit working, instead of down-regulating my immune system, I started exploring alteration of my gut microbiome. Results 13 months later were not promising, though.

But this post is good news. I'm feeling better than I have in years and I'm not taking the 5-ASA (mesalamine) any more. I'm not suggesting any one do this or anything like it, I'm just telling you what I've done.

About one year ago, I decided to do a food allergy test. It wasn't something I did under the instruction of a doctor. I can't recall where I even read about the test (maybe on this forum?), but I did the E95 and A95 food panels (after eating everything under the sun so as to cause the markers to show-up). It said "no eggs". I've never noticed any problem with eggs, but I quit eating eggs themselves. I severely cut back on things that were made with eggs, but eggs are everywhere (mayo was tough to give-up). The panel also had me limited to once every 4 days on soft dairy, some kinds of beans, and a few other things. The E95 indicated wheat was fine, but an earlier Cyrex wheat panel (a more detailed analysis) showed sensitivity on a few gluten variations, so I go without bread and most products with obvious wheat (but still drink beer).

So that's one thing I changed: no eggs. The next change was about 8 months ago, I took a box (60 capsules) of "Mutaflor" (E coli Nissle 1917 in a pill). I tried to follow the same procedure as in a paper I read. I ran out of Mutaflor and didn't replenish right away; it's kind of expensive and I had to order it from Canada. Then, in an unrelated heath monitoring action, I noticed that I had high creatinine (blood test). Figuring that was caused by the maximum dose of Lialda for so many years, I quit that 5-ASA in June (five months ago) and started with a maintenance dose (1 capsule per day) of Mutaflor. I went off Mutaflor for over a month without noticing a big difference in health, but I just ordered some more; I don't want to change anything while I'm feeling good!

So although I'm not in perfect GI health, I feel better than I've felt in a long while. Certainly no overt UC symptoms (no blood). I'm not sure if getting rid of eggs helped, using Mutaflor helped, both together helped, or if it's just a conincidence. I'm also a few years past a life change, so maybe even stress has gone down some.

I'm not completely discounting the multi-donor FMT I had done almost 3 years ago either. One just never knows how this stuff works. I've had my gut biome checked three or four times by ubiome, and answered hundreds of health questions...not so I'm not learn anything from that, but with our help, they might put together the puzzle. I encourage everyone to help ubiome, by the way. The more data, the better.
 
7vNH said:
Over several years I've been posting in this thread about my condition and actions I've taken. Some background is in
this post, which also spells out a multi-donor FMT I had done. But in short, I've had UC a long time and it's been mostly under control using 5-ASA's, but when they quit working, instead of down-regulating my immune system, I started exploring alteration of my gut microbiome. Results 13 months later were not promising, though.

But this post is good news. I'm feeling better than I have in years and I'm not taking the 5-ASA (mesalamine) any more. I'm not suggesting any one do this or anything like it, I'm just telling you what I've done.

About one year ago, I decided to do a food allergy test. It wasn't something I did under the instruction of a doctor. I can't recall where I even read about the test (maybe on this forum?), but I did the E95 and A95 food panels (after eating everything under the sun so as to cause the markers to show-up). It said "no eggs". I've never noticed any problem with eggs, but I quit eating eggs themselves. I severely cut back on things that were made with eggs, but eggs are everywhere (mayo was tough to give-up). The panel also had me limited to once every 4 days on soft dairy, some kinds of beans, and a few other things. The E95 indicated wheat was fine, but an earlier Cyrex wheat panel (a more detailed analysis) showed sensitivity on a few gluten variations, so I go without bread and most products with obvious wheat (but still drink beer).

So that's one thing I changed: no eggs. The next change was about 8 months ago, I took a box (60 capsules) of "Mutaflor" (E coli Nissle 1917 in a pill). I tried to follow the same procedure as in a paper I read. I ran out of Mutaflor and didn't replenish right away; it's kind of expensive and I had to order it from Canada. Then, in an unrelated heath monitoring action, I noticed that I had high creatinine (blood test). Figuring that was caused by the maximum dose of Lialda for so many years, I quit that 5-ASA in June (five months ago) and started with a maintenance dose (1 capsule per day) of Mutaflor. I went off Mutaflor for over a month without noticing a big difference in health, but I just ordered some more; I don't want to change anything while I'm feeling good!

So although I'm not in perfect GI health, I feel better than I've felt in a long while. Certainly no overt UC symptoms (no blood). I'm not sure if getting rid of eggs helped, using Mutaflor helped, both together helped, or if it's just a conincidence. I'm also a few years past a life change, so maybe even stress has gone down some.

I'm not completely discounting the multi-donor FMT I had done almost 3 years ago either. One just never knows how this stuff works. I've had my gut biome checked three or four times by ubiome, and answered hundreds of health questions...not so I'm not learn anything from that, but with our help, they might put together the puzzle. I encourage everyone to help ubiome, by the way. The more data, the better.
Click to expand...

Thanks! the choice to do multi donor was a good one. It is very important to describe what protocol you followed for FMT though. If your donor is not on a high fiber diet free of harmful chemicals, then the quantity of good bacteria in the stool could be so low it wouldn't make much of an impact. Also for enemas 30-80 FMTs is the range that has been shown somewhat effective for IBD. Oral routes of FMT have now been shown to be more effective. Exposure of feces to too much oxygen due to excessive processing can kill bacteria further reducing the dosage and efficacy.

So doing an DIY FMT is still pretty difficult. I applaud anyone who found a way and succeeded! or even tried, safely!
 
7vNH said:
But this post is good news. I'm feeling better than I have in years and I'm not taking the 5-ASA (mesalamine) any more.
Click to expand...
There is one more thing that I did, and I didn't think it had much to do with my UC, but maybe it did: I took vitamin D and B complex.

The reason I took vitamin D was because "everyone" was saying that mostly, we air-conditioned humans are making a lot less vitamin D than our outdoor predecessors did. And the B complex was because I figured I wasn't selecting the best foods to eat, and B vitamins, being water soluble, it couldn't hurt.

Well, now I read that vitamin D can do a lot for the gut microbiome.

This neurologist MD, SC Gominak, that's been treating people with headaches, but that's the thing that landed them in her office. Most of them also present with sleep problems and "IBD". Anyway, after seeing many hundreds of patients, she's got this theory about how lack of vitamin D leads to a crummy set of gut microbiota. Apparently, the bugs in our gut need vitamin D and those bugs make B vitamins for us. Gominak posits that getting vitamin D up to the 60+ ng/ml level will align the gut microbiome.

There's a blood test for vitamin D, but with the B vitamins, she recommends relying on how you feel when you get up in the morning. For me, I was taking a B-complex that was pretty high. I had no idea it had anything to do with B vitamins, but my finger joints started hurting when I arose in the morning. At that point, I stopped all supplements, and the pain went away. I added-back fish oil first, then vitamin D. I came across this article before I added-back the B complex.

The idea is to get the vitamin D level up, and to have plenty of vitamin B around (all 8 kinds). But if you keep those B levels up for a long time, there will be too much, and you'll get the pain in your joints. At that point, quit the B supplements (except B12, which doesn't seem to build up). It's certainly a departure to say that B vitamins are somehow stored, because we've all been trained in the dogma that they're excreted if unneeded.

Anyway, here's a link to one paper. There are several others on that site.
https://drgominak.com/wp-content/uploads/2017/03/Gominak-commensal-Gi-D.pdf
 
7vNH said:
There is one more thing that I did, and I didn't think it had much to do with my UC, but maybe it did: I took vitamin D and B complex.

The reason I took vitamin D was because "everyone" was saying that mostly, we air-conditioned humans are making a lot less vitamin D than our outdoor predecessors did. And the B complex was because I figured I wasn't selecting the best foods to eat, and B vitamins, being water soluble, it couldn't hurt.

Well, now I read that vitamin D can do a lot for the gut microbiome.

This neurologist MD, SC Gominak, that's been treating people with headaches, but that's the thing that landed them in her office. Most of them also present with sleep problems and "IBD". Anyway, after seeing many hundreds of patients, she's got this theory about how lack of vitamin D leads to a crummy set of gut microbiota. Apparently, the bugs in our gut need vitamin D and those bugs make B vitamins for us. Gominak posits that getting vitamin D up to the 60+ ng/ml level will align the gut microbiome.

There's a blood test for vitamin D, but with the B vitamins, she recommends relying on how you feel when you get up in the morning. For me, I was taking a B-complex that was pretty high. I had no idea it had anything to do with B vitamins, but my finger joints started hurting when I arose in the morning. At that point, I stopped all supplements, and the pain went away. I added-back fish oil first, then vitamin D. I came across this article before I added-back the B complex.

The idea is to get the vitamin D level up, and to have plenty of vitamin B around (all 8 kinds). But if you keep those B levels up for a long time, there will be too much, and you'll get the pain in your joints. At that point, quit the B supplements (except B12, which doesn't seem to build up). It's certainly a departure to say that B vitamins are somehow stored, because we've all been trained in the dogma that they're excreted if unneeded.

Anyway, here's a link to one paper. There are several others on that site.
https://drgominak.com/wp-content/uploads/2017/03/Gominak-commensal-Gi-D.pdf
Click to expand...
Yes I have read some of this before! and it is true our bacteria create b vitamins. I think donors should get their vit d level up before an FMT as well as patients, I don't know for sure though if this makes any difference but it is likely helpful. Nicotinic acid i recall was used as an antipsychotic for schizophrenia. one thing about the b vitamins though, the supp you took may have also had emulsifiers in them, which are bad for the microbiome, not only as filler but also the capsule are made of these chemically altered fiber like substances, that could have made your arthritis symptoms worse, many IBD patients have arthritis. http://www.arthritis.org/about-arthritis/types/inflammatory-bowel-disease/

Its also possible your dosage of b vitamins were also too high.
 
A recent study used eight doses of freshly prepared FMT via a naso-duodenal tube or gastroscopy over the course of 2 weeks for either U.C. or Crohn's. Clinical remission, defined as a PCDAI score ≤ 10 and PUCAI score < 10 measured at the same time point, was observed in 3/8 UC patients and 2/2 CD patients. No major side effects reported.

https://www.ncbi.nlm.nih.gov/pubmed/29151253
 
Guerrero said:
Is there any research team/company working on FMT we can help or finance?
Click to expand...

Sure I'll take your money!! just kidding of course. I think most of the companies are privately funded, and not publicly traded although I've never looked into it, otherwise, that's how you could invest, and really, I'd put all money on it!! but you never know which route will work until it's tested. Look into Seres health and Vedanta biosciences. might be few more companies cant recall all of them at the moment, maybe rebiotix?

Seems rebiotix is only planning on microbiome therapy for UC and not crohn's http://www.rebiotix.com/rebiotix-product-pipeline/
 
Guerrero said:
interesting...
unfortunately results of seres phase 1 study were not too positive
http://ir.serestherapeutics.com/phoenix.zhtml?c=254006&p=irol-newsArticle&ID=2303923
shares drop 19% after their publication
https://www.marketwatch.com/story/s...drops-19-on-clinical-trial-results-2017-10-02

seems the other two companies are not listed
Click to expand...

I vaguely recall Seres is adjusting its dosing amount and doing another study soon on the same product.

Finch therapeutics is another company developing bacterial based FMT pills. http://finchtherapeutics.com/news/2...herapeutics-in-inflammatory-bowel-disease-ibd
 
One method of extracting bacteria/microbiome from whole stool. They use sieve/strainer, then a centrifuge to seperate the bacteria from the remaining particles.
https://www.youtube.com/watch?v=twwAtdFbeKY

I read about this at least 3 years ago, one guy even tried making his own centrifuge with a drill to spin it, treated his gi issues and says his condition has improved quite a bit.
 
Last edited:
I may have missed this in the news last october, but Seres health released results on a bacterial pill SER-287, or a type of FMT pill, in ulcerative colitis and it was generally successful and put patients in remission. and also this!
We plan to further evaluate SER-287 in mild, moderate and severe forms of ulcerative colitis, in maintenance after induction therapy, and we also intend to assess development in Crohn’s disease, and pediatric forms of inflammatory bowel disease.
Click to expand...

https://www.healio.com/gastroentero...signation-to-microbiome-drug-for-pediatric-uc

https://www.healio.com/gastroentero...e-therapy-shows-benefit-in-ulcerative-colitis

I'm skeptical that this pill of bacteria will be the same as a full spectrum fecal microbiota transplant, and reflects my fears that selecting bacteria which only treat the disease rather then cure it, like some studies have shown already.
 
Last edited:
WANT POOP TRANSPLANTS. HERE'S HOW TO MAKE THEM SAFE, Wired Magazine.

https://www.wired.com/story/patients-want-poop-transplants-heres-how-to-make-them-safe/

“If you ask 99 percent of physicians who do this, they will tell you anything that came along to limit access to stool banks would be catastrophic,” he says. Plus, there’s no guarantee the microbiome even can be successfully be pulled apart and put back together in pill form. “People have spent 50 years trying to come up with synthetic blood and we still have a blood bank," says Stollman. "Who’s to say stool will be any different?”
Click to expand...

And this is one reason I put a little more hope into full spectrum fecal transplants. As it has been shown in mice experiments, and in human experiments using whole stool, the more depleted the microbes are, the more resistant the community is in accepting any new species into that community. throwing just a few down there might not stick to well as a cure, they'll just pass on through. But throwing a large diverse amount down there, even though it's a little bit of a "crap shoot", might be the best strategy for the time being.

The first report of cure from Crohn's with FMT was a women who received a large volume FMT through nasogastric tube using 3 donors all in the same day, whereas almost every other experiment using a single donor and enemas took 30-80 FMT enemas.
 
Sere's Health reported an analysis of a recent study on their bacterial pill SER-287 , it's kind of like a fecal microbiota transplant pill, showing that the bacteria was successfully engrafted/implanted in the G.I. systems of the patients and that the patients improvements were related to how well these bacteria were transplanted. The bacteria was confirmed to still be present 4 weeks after the last dose. I'm wondering how long those bacteria will stay and which species they actually are.

https://www.businesswire.com/news/h...rapeutics-Reports-SER-287-Phase-1b-Microbiome
 
I was just reading a new study on IBD microbiome and genetics and they found very little relationship between genetics and the state of the microbiome, this seems to be an important factor in considering causation of the disease suggesting genes have little to do with it and that the composition of the microbiome itself is a force that acts upon the human body. So again if there was a cure it could very well be by manipulating the microbiome composition such as what is being done with Fecal Microbiota Transplants. https://www.nature.com/articles/ctg201758
 

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