Has anyone tried Fecal Microbiota Transplantation (FMT) ?

[Jeffrey Roberts]

Fecal Microbiota Transplantation (FMT) is a new treatment where healthy stool donor is transplanted into the colon of the patient.

Detailed explanation:

Fecal Matter Transplantation (FMT) is a procedure where a fecal solution from a donor is deposited into the intestinal tract of a recipient. To complete the procedure, the fresh or frozen stool of the donor, is dissolved in a salt water solution. The fecal matter is usually deposited using a tube that goes straight into the digestive tract. The treatment is generally recognized as safe. Most patients experience diarrhea on the day of the procedure, and a small percentage report belching, abdominal cramping or constipation. At this time there is limited research on its effectiveness in IBS patients. In the small body of evidence currently available, researchers focused on the effects of fecal transplants in patients with constipation-dominant IBS. Patients who received the transplantation reported improvements in stool frequency and less bloating and pain. FMT has been highly successful in patients suffering from an overgrowth of the bacteria Clostridium Difficile, a bacteria infection in the bowel that can be fatal and very difficult to treat.

Does anyone have experience with this?

[acureisoutthere]

Yes, I did one of these in April, 2015.  Still doing fine. IBS-D is still gone.

I have heard that they don't always work for everyone though.  Alana Collen writes about FMTs in her book, "10% Human".

If you are considering one of these, please first learn everything you can about the Human Microbiome.   This will help to understand what to do, and what not to do. 

Here are some links :

https://news.google.com/search?q=microbiome&hl=en-US&gl=US&ceid=US:en

https://search.medscape.com/search/?q=microbiome&plr=all&page=1

https://www.sciencedirect.com/search?qs=microbiome&authors=&pub=&volume=&issue=&page=&origin=home&zone=qSearch

https://doaj.org/search?source={"query"%3A{"query_string"%3A{"query"%3A"microbiome"%2C"default_operator"%3A"AND"}}%2C"from"%3A0%2C"size"%3A10}

https://www.ncbi.nlm.nih.gov/labs/journals/microbiome/

https://www.biomedcentral.com/search?query=microbiome

https://www.medicalnewstoday.com/categories/gastrointestinal/1

https://www.ncbi.nlm.nih.gov/pmc/?term=human+microbiome

https://scholar.google.com/scholar?hl=en&as_sdt=0,50&q=the+human+microbiome

https://medicalxpress.com/search/?search=microbiome

http://www.gutmicrobiotaforhealth.com/en/research-practice/research-practice-gut-microbiota/

https://www.reddit.com/r/Microbiome/

https://www.sciencedirect.com/

https://www.medicalnewstoday.com/search?q=microbiome&p=1

https://www.nature.com/subjects/microbiome

https://www.news-medical.net/medical/search?q=microbiome&t=all&fsb=1

https://microbiomedigest.com/

https://paper.li/f-1389386272#/!science

https://hmpdacc.org/ihmp/publications.php

http://www.translationalmicrobiome.org/

https://www.f6publishing.com/PublishedArticles?kwd=microbiome

https://www.plos.org/microbiome

https://www.fda.gov/AboutFDA/CentersOffices/OC/OfficeofScientificandMedicalPrograms/NCTR/WhatWeDo/ResearchDivisions/ucm079048.htm

https://www.cbsnews.com/search/?q=microbiome

https://www.wjgnet.com/1007-9327

Some good books :   "The Microbiome Solution"  by Dr Robynne Chutkan.  "I Contain Multitudes" by Ed Yong, "Dirt is Good" by Dr. Jack Gilbert and Dr. Rob Knight, and "Missing Microbes" by Dr. Martin Blaser.

 

Also, you would be wise to understand the risks.  Look for the studies that report any adverse events.

Know that 90% of the bacteria are anaerobic.

Multiple FMTs are often necessary for success (as many as it takes).  Donor selection is critical.

Learn about these bacteria that you are transplanting.

 

Best wishes.

 

 

 

 

 

 

 

 

 

 

[blowfish]

I am 36, suffered from IBS all my life. All FODMAPs give me gas, and bloating consistently starts two hours after FODMAP ingestion.

10 years ago I was desperate enough to try FMT at home. I did it for five consecutive days, without any antibiotics, and without restricting what I ate. As long as the donor's stool was in me, I had no gas after eating. After the treatment, I quickly relapsed to my regular self.

Seven years ago, I repeated the procedure above with the exactly same results: I was cured for five days and immediately relapsed. I have some theories as to why it did not work:

1. I did not take any antibotics.

2. I did not stick to a low FODMAP diet going in and out of FMT.

3. Five days of enema treatment is insufficient.

I am hopeful that a professionally done FMT will rid me of IBS someday. FDA, are you listening?!

[Jeffrey Roberts]

I've always been excited about this; however, the latest FMT research with IBS has not shown it to be effective. It might be the method used or even perhaps the donor's stool. More research needs to be done.

i kind of think doing it at home is dangerous for various reasons. I don't recommend that you try this again.

[blowfish]

Yea, I thought about the dangers of doing FMT at home. But I also have to weigh that against the dangers of not doing it. I believe that IBS shortens my life in the following ways: low grade inflammation*, significantly reduced social life, stress, reduced productivity => less money => less happiness, mental anguish => less happiness. Sort of like, we all know driving is unsafe, yet we still go out and do things and LIVE!

*A lot of experts insist that IBS doesn't cause inflammation. Technically true, I think. But my belief is IBS reduces your body's ability to regulate inflammation. Let me explain.

All humans poorly absorb FODMAPs in their small intestine. Why do so many people with IBS respond favorably to the low-FODMAP diet? According to recent research (http://sciencenordic.com/large-intestine-may-be-source-woes-people-irritable-bowel-syndrome), people with IBS have "bad bugs" in the colon that make gas out of FODMAPs, while IBS-less people have "good bugs" that make short chain fatty acids (SCFA) out of FODMAPs. SCFA is known to help your body regulate inflammation (just google SCFA and inflammation).

Because I felt so much better than my usual self when the donor's stool was in me, I am inclined to believe in this good bug, bad bug theory. The trick is to make the good bugs stick. It may be that I need to take antibiotics to wipe out the bad bugs before I insert the good one. It could be that doing this via enema doesn't go deep enough. It may be that some donor's good bugs have a better chance of surviving in other bodies. We as society can figure these things out much quicker if FDA just approved it. I mean, how unsafe is FMT compared to all the medical procedures out there?

 

 

 

 

 

[Jeffrey Roberts]

I appreciate that you feel that IBS shortens your life; however, I have never read any research that suggests that IBS might shorten your life. I think it's a stretch to say that a single treatment option is going to give you your life back.

The cause of IBS is unknown. FMT may or may not relieve symptoms; however, current research indicates that it's not likely to cure IBS and that the FDA issued a warning several months ago about FMT research and it causing a death in a patient in a clinical study. FMT is not without risks. Death is a lot more severe than IBS.

[Mathilde Lcq]

Hi, 

I had a fecal transplant done at a clinic in Norway as results were looking good for IBS sufferer (2/3 have shown improvement). Most of the time they do it via colonoscopy and only once however in my case (part on my intestine is twisted) I had to do it twice in one week via gastroscopy. After the first one I felt better (but I had to take a solution to empty myself prior to the procedure so I did not had any food left in me which also make IBS better), unfortunately the day before the second procedure I got my menstruation which is a trigger for my IBS and ended up going to the toilet 10 times. After the second procedure things were bad and got worst and worst. This procedure was done in January and we are now in August and I am worst than ever (but I don't think it is only because of the fecal transplant). I guess it does work for certain people I am just not one of them. I know sometimes you have to do it more than once, but here it costs around 1800 euros for one so I can't afford to do it as much as I want and the procedure is not pleasant as they are not willing to use sedatives here.

This is my story but like I said it does work for many people so you should consider it if you think it may help but please have it done by professional who can select good stools !! 

[Tom Sigma]

On 8/17/2020 at 5:16 AM, Mathilde Lcq said:

Hi, 

I had a fecal transplant done at a clinic in Norway as results were looking good for IBS sufferer (2/3 have shown improvement). Most of the time they do it via colonoscopy and only once however in my case (part on my intestine is twisted) I had to do it twice in one week via gastroscopy. After the first one I felt better (but I had to take a solution to empty myself prior to the procedure so I did not had any food left in me which also make IBS better), unfortunately the day before the second procedure I got my menstruation which is a trigger for my IBS and ended up going to the toilet 10 times. After the second procedure things were bad and got worst and worst. This procedure was done in January and we are now in August and I am worst than ever (but I don't think it is only because of the fecal transplant). I guess it does work for certain people I am just not one of them. I know sometimes you have to do it more than once, but here it costs around 1800 euros for one so I can't afford to do it as much as I want and the procedure is not pleasant as they are not willing to use sedatives here.

This is my story but like I said it does work for many people so you should consider it if you think it may help but please have it done by professional who can select good stools !! 

Hi Mathilde,

Sorry to hear that you got worse afterwards.

Do you know which clinic you got yours at? I am also looking into getting FMT in Norway but don't know how to go about it. I contacted one of the clinical trial contacts but they weren't recruiting any more people. Do you know if most clinics offer it for IBS patients or did you receive yours as part of a clinical trial?

Thanks,

T

Edited August 20, 2020 by Tom Sigma

[Mathilde Lcq]

Hei Tom, sorry for answering so late to your message. I did the fecal transplant in a private clinic Volvat (i Majorstua). It was not part of a trial clinical as you may end up with a placebo. I know they are several clinical trial and I tried to be part of it but at that time it was mainly in Bergen (too far from Oslo) and they refused me. I know that they are several other trial going one but I think you have to be lucky to get into one and then you always have the risk to get the placebo (but apparently it also gave good results). You can always do it in the prival Clinic called Volvat but it will cost you!

[Lindsey Parsons]

I've done several podcast interviews with people who've done FMT, including my most recent one, which is a story of a woman who did it for bipolar disorder, but then helped her two sisters to do it. They had bipolar disorder and IBS, which was cured. You can find it at: https://link.chtbl.com/theperfectstool-IBS  (or I've made a YouTube playlist of all the FMT stories here: Fecal Microbiota Transplantation (FMT) - YouTube)

I did one FMT with my husband's stool years ago. Afterwards, I had my first good, solid stool in a while but it didn't last. I think the key is long term tapering off - so maybe a bunch at first - like how they do it in clinics - 5 in a week then 5 in the next week, then do it every few days, then every week, etc.

[amya123]

I find the research on fmt to be very disheartening. M. Salhey did a study recently. He did one follow up. I don't think it went well after that because they stopped reporting the results. Also there were cases of diverticulosis and multidrug resistant bacterial strain infections in his study. I think his study was shut down because the risks outweighed the benefits.

FMTs won't work until they figure out how to prevent an inflammatory immune response in recipients (make sure recipients have an adequate t cell immunity), choose donors that have increased microbiota diversity, 

How can they figure out how to make it last for years??? Thats the most troubling part.

1. I think that first recipients need to work with a functional medicine practitioner to improve their symptoms and immunity. 

2. The best donor would ideally be a sibling with great microbial diversity, healthy, slim, vaginal birth, minimal use of antibiotics, etc, super donor. (being cleared of pathogens is not enough). Super donor stool should be used only for all fmts.

 

"FMT basically depends on rare donors and their fresh feces, which intensively restricts the application of FMT, as the technology to keep fecal microbiota alive has not been perfected.¹⁰ In addition, it is unclear what microorganisms of FMT are effective to treat different conditions.

The indication, dose, frequency, interval, and follow‐up time of FMT treatment need more clinical research and evidence. All of these issues, and issues not limited to these, are the key challenges and clinical concerns about FMT. The mechanism of FMT therapy is also complicated by challenges that need to be solved.

 

 

Therefore, high-quality RCTs with large samples and long-term follow-up are required to further investigate the therapeutic effect of FMT on IBS."

 

 

Like I said it is extremely disheartening because it appears not to be profitable if you have to go through all of that to get a good donor for just one transplant. 

 

[Thankful for FMT]

I had FMT done a little more than one month ago. I had IBS D. Dr Thomas Louie, University of Calgary- Foothills Hospital. He changed my life. For 7 years I had suffered from this disease and since the procedure I have restored my gut health, mental outlook and have regained my positivity and ability to enjoy my life. I received a combination of 3 donors in my FMT procedure which was a combination of pills and transplant. I have regular BM’s now, no longer experience the ‘swollen colon’ pain as I call it and all urgency to use the washroom after food and drink has been eliminated. For 7 years I did not pass gas and now I do so comfortably and without fear. Get a referral to Dr. Louie, he will change your life!

[Jeffrey Roberts]

Thankful for FMT, this is wonderful! Thank you sharing your information and the doctor that changed your life. I'm so encouraged by your experience.

I will include Dr. Louie's information on our Find a Doctor's page.

[Kegr]

Thankful for FMT:   Hi I’m happy for you! How’s the FMT? Is it still working? Please give us an update if you have time. Thank you! 

[Michael Harrop]

It was mentioned that DIY is dangerous. I wouldn't really agree with that. The biggest factor when it comes to FMT is donor quality. And using official sources of FMT (clinical trials, doctors, stool banks, etc.) is no guarantee of high donor quality. I've been critiquing this https://archive.ph/NZtvl for years.

People that DIY absolutely need to take the time to learn some basic information though. And I created HumanMicrobiome.info to help them: https://humanmicrobiome.info/FMT/

I've DIY'd with over a dozen donors at this point. https://web.archive.org/web/20220801072636/https://old.reddit.com/r/HumanMicrobiome/comments/8sv31e/my_detailed_experiences_lessons_from_8_different/

And I did find one that gave me major improvements for IBS: https://web.archive.org/web/20221101144334/https://old.reddit.com/r/FMTClinics/comments/uase7j/humanmicrobesorg_donor_flrs1997_addressing_ibsd/

More DIY success stories: https://web.archive.org/web/20170201034115/https://thepowerofpoop.com/fecal-transplant-success-stories/

Also, relevant to this discussion is El-Salhy's highly effective FMT IBS study that pointed to donor quality as the primary factor: https://gut.bmj.com/content/69/5/859

I also started up HumanMicrobes.org to try to find better donors. I'll create a separate post about that, but I'm screening over half a million donor applicants.