My experience with FMT

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Connor77
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   Posted 2/15/2018 6:23 PM (GMT -6)   
Just thought I'd startup a thread here to add my voice to the chorus of FMT patients.

I got accepted into a clinical trial here in Canada for FMT. You may or may not know, within the past couple of years FMT was banned in Canada and the USA for everything except for treatment resistant c. difficile, in which it has a 90% cure rate. However, many people believe that FMT can help Crohn's and especially UC patients since it is suspected that dysbiosis or deficiency of bowel flora is a reason why our immune systems are so out of control. This is in relationship to hygiene theory, which states that we need microorganisms in our gut to modulate our immune systems, otherwise we develop health problems.

This trial is one of the major ones being conducted in Canada across several provinces in order to create a model to present to the government for standard treatment.

A couple of months ago I did AMAT (anti-MAP antimicrobial therapy) for mycobacterium avium paratubercuolsis, which I was diagnosed with through Otakaro Labs in New Zealand. Unfortunately, the triple antibiotic protocol was not tolerated, no matter how much I tailored my dosages, so I have since had to abandon this protocol.

I still believe that MAP is a leading pathogenic factor in IBD, but I have a small sub-theory that I'm working with right now. In my research, I discovered that the numbers of MAP present in UC patients is often not all that different from healthy population controls. Most human beings carry some form of mycobacteria in their blood. Some people with UC recover with AMAT, while others don't.

While researching Helminth Therapy, I did a lot of delving into hygiene theory. It appears that mycobacteria may also be helpers in the human immune system, which is why the majority of human beings with MAP in their bodies have no immune reaction to it. It may be that an immune deficit in IBD is what causes MAP to become virulent; or maybe, in some people, MAP is just commensal and a non-issue. Because a lot of Crohn's and UC patients respond well to AMAT, and their clinical markers for MAP match positive changes in their condition, I think MAP plays a role.

Where FMT comes into the picture is that maybe MAP gets out of control because there is insufficient immune modulation via the bowel flora. A lot of bacteria that live in our bodies are harmless but if they are provoked by antibiotics or long term low-grade immune system attacks, they can mutate into aggressive forms. It's not a matter of bacteria always being "good" or "bad", so much as how they are adapting to what is coming at them. So maybe if bowel flora are shored up, MAP will return to being more commensal. The other issue is that I couldn't tolerate the AMAT antibiotics. They actually led to small bowel inflammation, which is a first for me (showed up on CT scan). So regardless of what happens next, I need to make a concerted effort to restore my bowel flora as they have likely been devastated from years of UC and a history of antibiotic use.

I was able to track down a clinical trial in Canada. I had to go there in person for the first FMT and patient intake. They took blood, urine, saliva and stool samples to check baseline readings. I was given the first FMT which came from a single rigorously screened donor. I was then sent home with 7 frozen samples, to administer 2 a week for the next month. I will then return for a follow up. After that, they will ship me the frozen stool samples and I will continue the protocol for the next 6 months at two enemas per week.

Some interesting facts I learned:
- retention time does not matter. The doctor said that some people only retain it for 20 minutes and some for 48 hours, and it does not seem to affect outcomes. The bacteria colonize quickly.
- the bacteria in the stool remain viable for 2 years if frozen, and they freeze dry the stool in the lab
- freezing does not seem to affect diversity
- based on their past studies, bacteria in the rectal enema will reach the beginning of the ascending colon within 24 hours or less
- the laxatives used in colonoscopies are contraindicated during the trial because they flush out the beneficial flora (this confirms what I already suspected, scientifically -- we should all be doing major probiotics following a scope)
- out of the IBD patients who received FMT in their past study, 30% went into remission lasting for more than a year by the 7th enema, and another 30% experienced significant downgrading of their disease status during the same time frame; so that's a 60% chance that it could do something beneficial

I welcome any questions!

Post Edited (Connor77) : 2/15/2018 4:27:52 PM (GMT-7)


Uniform Charlie
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Date Joined Jul 2015
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   Posted 2/15/2018 6:44 PM (GMT -6)   
Connor77 said...
- out of the IBD patients who received FMT in their past study, 30% went into remission lasting for more than a year by the 7th enema, and another 30% experienced significant downgrading of their disease status during the same time frame; so that's a 60% chance that it could do something beneficial


Hmmm...60% response rate, 30% remission rate. It's like every treatment is destined to produce an outcome somewhere in this general vicinity.

Is there any evidence that there are "super poopers" whose stool is extra special and beneficial? Since all of our guts contain different bacteria/fungus etc, how can they even attach any meaningful statistics to these studies?
Diagnosed Proctosigmoiditis (UC) February 2015
Current Meds: Lialda 1.2gm 2x daily, duloxetine, rowasa as needed, Curcumin, VSL3 occasionally, One a Day Multi-Vitamin
Did SCD for about 2 years but lost willpower. Want to get back to it at some point.

Connor77
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Date Joined Jul 2016
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   Posted 2/15/2018 7:12 PM (GMT -6)   
Uniform Charlie said...
Connor77 said...
- out of the IBD patients who received FMT in their past study, 30% went into remission lasting for more than a year by the 7th enema, and another 30% experienced significant downgrading of their disease status during the same time frame; so that's a 60% chance that it could do something beneficial


Hmmm...60% response rate, 30% remission rate. It's like every treatment is destined to produce an outcome somewhere in this general vicinity.

Is there any evidence that there are "super poopers" whose stool is extra special and beneficial? Since all of our guts contain different bacteria/fungus etc, how can they even attach any meaningful statistics to these studies?


Good question. The study does PCR assay of the stool along with stool culture. They screen their donors over the course of years so that they really get to know their lifestyle habits.

In general, donors are chosen based on these factors:
- no history of GI problems
- no history of mental health problems
- no history of foreign travel
- consistently high bowel flora diversity
- stools consistently screen negative for pathogens
- diets do not contain known allergens (gluten, nuts, dairy, etc.)
- generally robust individuals with healthy lifestyle

Out of 20 potential donors, the list was whittled down to 3-5 optimal candidates.

Statistically, it's difficult to figure out exactly how FMT helps. In my opinion, there is some kind of synergy that happens. The body likely takes what it needs and ditches the rest. Quantifying this is difficult because we have up to 300 species of flora in our bowels, which is the whole reason why FMT is being used. We can't synthetically create a better probiotic. Adverse reactions are rare. The worst case scenario is usually that it just doesn't work.

60% response rate is still higher than the leading biologic. Remicade, Entyvio, and Humira are all within 30% or less. You basically have a 1 in 3 chance that FMT will put you in remission and 2 in 3 that you will have a beneficial impact. I'd say that makes it worth trying?

countess18
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Date Joined May 2016
Total Posts : 276
   Posted 2/15/2018 9:47 PM (GMT -6)   
Connor

Keep us posted! I really hope this works for you and am interested in your progress.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
remission March-Sept 2017 then flared again-failed prednisone wean
started Humira 11/17/17, off prednisone since 12/26, balsalazide 3/ 3x day cannot tolerate Lialda or probiotics
past meds- cortifoam, canasa, rowasa, plan is -will be off all meds except Humira

iPoop
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Total Posts : 13215
   Posted 2/16/2018 8:36 AM (GMT -6)   
Connor77 said...
60% response rate is still higher than the leading biologic. Remicade, Entyvio, and Humira are all within 30% or less. You basically have a 1 in 3 chance that FMT will put you in remission and 2 in 3 that you will have a beneficial impact. I'd say that makes it worth trying?
The odds of a response to remicade/humira/entyvio are 65%, the odds of a remission are 30-ish%. I'd say FMT results are equivalent to biologic results, equivalent to mesalamine results, equivalent to immunomodulator results (imuran/6mp). Striking how regardless of method used, the results are pretty much the same. Gives more credence to "UC being an umbrella under which multiple illnesses display the same symptoms but have different causes."
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Boss makes a dollar while I make a dime and that's why I poop on company-time...

Post Edited (iPoop) : 2/16/2018 6:41:13 AM (GMT-7)


limey
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Date Joined Sep 2016
Total Posts : 62
   Posted 2/16/2018 9:37 AM (GMT -6)   
I was on FMT here in Hamilton at twice a week for 8 weeks and like the original poster for UC they have used just 1 donor for UC out of their pool of donors as from previous studies here at Macmasters hospital they found this to be most effective.
Having finished my original trial and seeing the big difference in my sigmoid from before and after I have a big improvement in how the colon now looks.
I am now into a maintenance dosage of once per week and this is open ended as to the period it can go on for.

imagardener2
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Date Joined Jan 2010
Total Posts : 5775
   Posted 2/16/2018 2:42 PM (GMT -6)   
I wish you get great results from FMT, it's something I really believe could be the no-brainer solution to fixing what's wrong with some of us. Will it fix everyone? Probably not but if it helps even 1/3 of UC-ers that is wonderful.

I'd sign up for a US trial in a heartbeat because although diet controls my symptoms I'd like to be back to pre-UC of eating whatever I want, no mindfulness of what my gut can/cannot handle.

My opinion is my gut was invaded by bad microbes and has never been able to re-set itself. I never had any food intolerances before UC, just constipation every now and then.

Keep us informed please.

Old Mike
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Date Joined Jan 2007
Total Posts : 3886
   Posted 2/16/2018 4:01 PM (GMT -6)   
Connor: Since you like to research here is one to ponder
Autologous stool vaccination causing IBD.
I have an old thread on it.
My take if this is a valid theory, is that if the bacteria such as in the rectum
get away from control of the enteric immune system and the general immune system
becomes exposed then IBD can develop,tolerance is lost or what ever mechanism may apply.
The other thought is why dose UC start in the rectum.
One other tid bit is that people can go into remission from autologous oral FMT.

Old Mike


/www.ncbi.nlm.nih.gov/pubmed/26088200

brucen36
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Date Joined Mar 2014
Total Posts : 292
   Posted 2/16/2018 10:40 PM (GMT -6)   
How do they prepare the stool? Is it done under anaerobic conditions? I suspect not. Most bacterial living in our colons are anaerobes that probably don't survive the stool processing procedure.
Male mid 40s.
SCD only, since 2006.
Since 2015: mesalamine 4.8 g/day and salofalk enemas as needed.
Psyllium husk (isabgol) 2 tbsp's morning and night (4 total)

Connor77
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Date Joined Jul 2016
Total Posts : 523
   Posted 2/17/2018 12:14 AM (GMT -6)   
brucen36 said...
How do they prepare the stool? Is it done under anaerobic conditions? I suspect not. Most bacterial living in our colons are anaerobes that probably don't survive the stool processing procedure.


Obligate anaerobes have some tolerance for low oxygen environments. It's not cut and dry. It's my understanding that the stool is processed through immediate freeze-drying in saline, without blending. But I can find this out.

There are people all over the world using do-it-yourself FMT methods using blenders with success, which for years was the community standard. Now there are a diversity of methods being used based on the understanding of how bacteria live.

My understanding of bacterial communities is that it would be unlikely that no anaerobes survive. We might believe that from in vitro understandings of bacterial species but in vivo they behave differently. If stool is collected in an air tight container then in theory just the outside of the stool would oxidize and not the inside. Also... I wonder if anaerobes naturally live on the inside of stool anyway in order to avoid oxygen. The bowel does not have O2 floating around but it does have oxygen bound to iron, and there are oxidatize reactions occurring all the time.

Anyway. Bottom line... if FMT is going to work or not, I don't think brief oxygen exposure is going to be a deciding factor.

Post Edited (Connor77) : 2/17/2018 6:37:46 AM (GMT-7)


brucen36
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Date Joined Mar 2014
Total Posts : 292
   Posted 2/17/2018 12:46 PM (GMT -6)   
Wait why do you think the bowel doesn't have oxygen floating around? People are swallowing air all the time.
Male mid 40s.
SCD only, since 2006.
Since 2015: mesalamine 4.8 g/day and salofalk enemas as needed.
Psyllium husk (isabgol) 2 tbsp's morning and night (4 total)

Connor77
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Date Joined Jul 2016
Total Posts : 523
   Posted 2/17/2018 1:27 PM (GMT -6)   
brucen36 said...
Wait why do you think the bowel doesn't have oxygen floating around? People are swallowing air all the time.


Why are you nitpicking on this? I answered your question about anaerobic bacteria already. If I find out more from the doctor doing the study I'll post it. Thank you.

notbob
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Date Joined Jul 2016
Total Posts : 69
   Posted 2/17/2018 5:10 PM (GMT -6)   
Fascinating stuff. I tried to contact the Aussie doctor who first came up with the triple antibiotic therapy but his clinic was not accepting patients from out of the country. Couldn't find another source for that treatment. I had FMT, but only one dose. Unfortunately didn't work for me. Not sure if they just didn't know it should be done multiple times or what.

Conner, I commend you for your very systematic approach to solving your condition.
UC for 10 years, last two+ had the never ending flare from hell. Tried the usual meds, pills, steroids, biologics, diet, supplements and nothing worked. Had perm ileostomy Feb of 2017. Feel great!

FSLondon
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Date Joined Apr 2015
Total Posts : 383
   Posted 2/19/2018 7:31 AM (GMT -6)   
Quick question for all on this thread: My reading of triple antibiotic treatment is that it is a lifetime treatment plan as well (not something you just do for 18 months and then are cured). Is that right? If so, why is that seen as preferable to other treatments? Are the side effects less?

Connor77
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Date Joined Jul 2016
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   Posted 3/6/2018 2:37 PM (GMT -6)   
FSLondon said...
Quick question for all on this thread: My reading of triple antibiotic treatment is that it is a lifetime treatment plan as well (not something you just do for 18 months and then are cured). Is that right? If so, why is that seen as preferable to other treatments? Are the side effects less?


Are you asking about AMAT (anti-MAP therapy)? If so, yes, you are supposed to stay on the antibiotics long-term, up to 2 years, if they keep you in remission. It works really well for Crohn's disease.

The reason is that MAP is everywhere in our environment. It's in soil, water and air. It's in our drinking water (not killed by water treatment). The highest concentrations are found in milk and the only reliable study done in the USA showed it was in 1% of all store bought milk.

So if MAP is causing your IBD and the abx work, you have to stay on them because the chances of contracting it again are very likely.

It's seen as preferable to other treatments because no other treatments work. Mycobacteria in general are incredibly hardy and MAP is one of the most hardy. It lacks a cell wall and hides within the immune system itself so it's very hard for the body to get rid of, even more difficult to detect with standard testing.

People are staying on AMAT until the T-cell vaccine is ready in the UK. Right now it's in phase II trials.

Connor77
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Date Joined Jul 2016
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   Posted 3/6/2018 2:46 PM (GMT -6)   
Thought I'd give an update about my FMT experience so far.

It seems to be making me flare, but I haven't ruled out all other variables yet.

The research team has me keeping a stool diary and when I look back at the past few weeks, there has been a clear deterioration.

My bowels get better for 2 days after each enema, and then worsen. I have had to increase my dose of prednisone and restrict my diet to the nth degree.

I have some theories:
1) My body is reconfiguring and maybe this is some kind of die off. I was told that I should start seeing improvement by enema 7 or 8 and I just finished #5.
2) My body is rejecting the donor's flora configuration.
3) I was already inflamed which according to some is a no no for FMT because the only transplanted flora that will thrive are the pro-inflammatory ones.
4) There's something in the stool itself causing a problem. The donor does not have a restricted diet, so they may be eating things I'm sensitive to like gluten, wheat, dairy, etc. According to the focus groups, this shouldn't have a bearing on anything. As long as the donor can digest those things then they shouldn't be present in whole form in the stool. It's still a possibility though.
5) The dosage is too frequent for me (2x per week) and maybe the bacterial load is too much.
6) There may be a pathogen at work that was not detected in their screening, though they seemed pretty scrupulous in their testing.
7) Some other variable I haven't considered.

Either way, things aren't looking good right now. I'm at 4-5 BMs per day with significant discomfort and bleeding in my sigmoid, such that I'm starting to feel weak and light headed from the blood loss. Rectum seems fine.

I question how well this study was designed, but because it's a study and not a treatment, I am not privy to the ins and outs of how it's being done.

Spring
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Date Joined Jan 2017
Total Posts : 393
   Posted 3/6/2018 6:56 PM (GMT -6)   
I am sorry it isn't working for you. Thank you for sharing the details of what you are doing.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hosp 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, Started Humira 12/15/17, reaction, Entyvio 1/12/18. Down to 20 mg Pred. Veg, gf, no cows milk, multi, cal-mag, Aroga, Purrium

Mak37
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Date Joined Jan 2018
Total Posts : 313
   Posted 3/7/2018 12:26 AM (GMT -6)   
Hopefully you will start seeing improvements soon, you still have a couple more to go before losing hope! How many Bm’s were you at in the beginning? Was there less blood?
Diagnosed at 7, in the gray area between crohns and UC. Surgery on Jan 27, 2018 #nocolonstillrollin

Connor77
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   Posted 3/7/2018 12:51 AM (GMT -6)   
Before FMT there was less blood, stools were starting to get more formed, but frequency was about the same.

Now there's a lot more blood especially in the morning, stools are mushy or in pieces, and frequency is the same.

Hard to really call this progress.
DX left-sided UC 2015, 3 fulminant flares since then
Started FMT clinical trial Feb 2018
Dx w/mycobacterium avium paratuberculosis (MAP) Sept 2017
Stopped AMAT @ 6 weeks due to intolerance of meds
Others: Entyvio every 4 weeks, Low Dose Naltrexone 3mg at bedtime, natural ferments
Current status: lingering rectal bleeding, otherwise healthy

Mak37
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Date Joined Jan 2018
Total Posts : 313
   Posted 3/7/2018 1:29 AM (GMT -6)   
Hmm I wonder if maybe it gets worse before it gets better... could be killing off all the bad bacteria and trying to flush it out maybe? I’m not for sure how it all works, just a theory.
Diagnosed at 7, in the gray area between crohns and UC. Surgery on Jan 27, 2018 #nocolonstillrollin

Connor77
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Date Joined Jul 2016
Total Posts : 523
   Posted 3/7/2018 3:50 AM (GMT -6)   
No, you're right, I did think about that... it's only been 3 weeks. Sometimes it takes people months of FMT to really improve. But really, the blood means the immune system is not happy about something.

If what you're saying is true then the donor stool is causing some kind of big herx reaction. I just can't find enough good info on FMT to know what could be happening.
DX left-sided UC 2015, 3 fulminant flares since then
Started FMT clinical trial Feb 2018
Dx w/mycobacterium avium paratuberculosis (MAP) Sept 2017
Stopped AMAT @ 6 weeks due to intolerance of meds
Others: Entyvio every 4 weeks, Low Dose Naltrexone 3mg at bedtime, natural ferments
Current status: lingering rectal bleeding, otherwise healthy

Bull101
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Date Joined Feb 2015
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   Posted 3/7/2018 8:09 AM (GMT -6)   
You mention still being on prednisone and increasing your dose. I'm surprised they would allow that during this study. Hard to claim any sort of results if you are still on prednisone. If you did improve, what caused it?

nolafamily
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Date Joined Feb 2016
Total Posts : 2
   Posted 3/7/2018 12:33 PM (GMT -6)   
Conner77 - I am keeping my fingers crossed that you see success with this. I will follow your journey closely. Surgery has been recommended for my son, who turns 21 in 2 days. We are desperate for an alternate solution.
Family of a 20 year old diagnosed with Ulcerative Colitis in Fall 2015. Tried uceris, lialda, remicade, & canasa. Entyvio every 4 weeks with imuran since June ’17. Still no remission.

Connor77
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Date Joined Jul 2016
Total Posts : 523
   Posted 3/7/2018 3:22 PM (GMT -6)   
Bull101 said...
You mention still being on prednisone and increasing your dose. I'm surprised they would allow that during this study. Hard to claim any sort of results if you are still on prednisone. If you did improve, what caused it?


Prednisone has not been able to get me out of this flare, which I've been having since August 2017. I've been on as high as 60mg. So if I suddenly get better I guarantee it's not going to be due to pred.

arronUC
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Date Joined Jun 2017
Total Posts : 13
   Posted 3/8/2018 5:57 PM (GMT -6)   
Hi- you say they gave you a frozen set of doses, how do you "reconstitute" it for injection as an enema? You just add water, wait for it to get to room temperature, etc?
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