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FMT Fecal transplant

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Ulcerative Colitis
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FMT Fecal transplant  
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tomie46
Regular Member
Joined : May 2014
Posts : 22
Posted 5/28/2014 2:58 AM (GMT -7)
Hi I'm new to the forum and was wondering if anyone has any fecal transplant (fmt) experience. I don't have UC but guessed on this section is where more people would have experience as its mainly used for Ulcerative Colities.

I'll keep it brief, i have been struggling with many symptoms for 2 years now. Fatigue, tendonities, back/ joint pain, constant burning stomach pain, constipation, bloating the list goes on. Anyway i've done 13 fmt infusions over the pasted 3 weeks and am not feeling any relief in my symptoms at all. I'm wondering if anyone else who has performed fmt and has any tips of what to eat after the infusions or how long it takes to start noticing a difference in symptoms. Or if anyone has added fibre to there enemas for something for the flora to feed on.
Thanks Tom
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Guardian7
Veteran Member
Joined : Apr 2006
Posts : 2682
Posted 5/28/2014 5:11 AM (GMT -7)
Greetings.

1) I'd like to point you to the current official thread here where most, if not all of your questions have been answered.

2) This is more or less the official site that details how to do it. There are many resources, as well as a facebook group you can join.

3) Individuals who have done the transplant and are cured of UC no longer post here I'm afraid. There is one fella, Michael or FecalTransplantForUC who occasionally drops by to answer questions. His posts are in the official thread link I provided. He also has a site (along with youtube videos) here detailing how he cured himself. I find his story inspiring because he was close to surgery and now he has no traces of UC. Back to normal and only posts here to help the rest of us on how to do it correctly and successfully.

Best.
"Every adversity, every failure, every heartache carries with it the seed of an equal or greater benefit."
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tomie46
Regular Member
Joined : May 2014
Posts : 22
Posted 5/28/2014 5:37 AM (GMT -7)
Thanks for the reply have had a quick look at what is a long thread, will look in more detail later, but thanks again Tom.
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Guardian7
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Joined : Apr 2006
Posts : 2682
Posted 5/28/2014 5:49 AM (GMT -7)
No problem. You can also use the search feature on the top right of this page, as there are many previous threads.

I think the donor makes or breaks the transplant, personally. It's likely that people who think they don't have bowel issues likely do have bowel issues. Much of the population has latent bowel issues that need to be addressed, so finding a good donor can be really difficult.

A few good signs of bowel health include going 1-2 twice daily, no constipation, good food tolerance, no lactose intolerance. Along with that the donor must have no metabolic disorder(s). This biases the microbe balance to firmicutes (and not bacteroidetes). See more here.

Even for people without colitis, I found this to be very accurate. The bristol stool scale here is a good indicator of ones bowel health.

Science is showing that bowel health = overall health, so addressing it might fix the neuropathy and whatever lingering issues you may have.



Best.
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garylouisville
Veteran Member
Joined : Aug 2012
Posts : 9088
Posted 5/28/2014 5:52 AM (GMT -7)
Most UC'rs don't have success with FMT, only a small handful. FMT is not mainly used for UC, it is mainly used for C-Diff infections, where it can be quite valuable. Why haven't you gone to the doctor and tried to find a diagnosis for whatever it is you have? That should be the first step before doing self inflicted FMT's.
Pentasa(500mg) 2 pillsX2; VSL 1 pillX2; Prescrip Assist Probiotic 1 pill X 2;Vitamin D3;Grape seed extract 400mg X 2; Canasa as needed; DAO as needed due to dietary histamine intolerance

Gave me trouble: Robinul; Zymactive, Renew Life Probiotic 80 billion, Florastor
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Guardian7
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Joined : Apr 2006
Posts : 2682
Posted 5/28/2014 5:54 AM (GMT -7)
Because his doctor is as likely to help him as my houseplant is. :)

Latest figures for FMT success rates for UC hovered around 60-70%. Better than any other therapy out there.

I think researching it and learning about bowel health is the first step to success, IMO.
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tomie46
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Joined : May 2014
Posts : 22
Posted 5/28/2014 6:01 AM (GMT -7)
Yeah i have been to 3 consultants already, all of which have smothered me with drugs which have just made me feel worse and worse. They've given me no answers other we don't know what is wrong so i'm being forced to research this and find a cure myself. Which isn't easy and i often feel like just given up hope.
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DBwithUC
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Joined : Feb 2011
Posts : 4347
Posted 5/28/2014 8:32 AM (GMT -7)

Guardian7 said...
Because his doctor is as likely to help him as my houseplant is. :)

Latest figures for FMT success rates for UC hovered around 60-70%. Better than any other therapy out there.

I think researching it and learning about bowel health is the first step to success, IMO.

There has not been a 60-70% "remission" rate from FT. That is the percentage of folks who show short term symptom improvement. Remission rate in the few reliable studies, is well below 30%. Also the few studies done had limited followup, often as short as 4 weeks.

I think FT/probiotics show promise, but it is frustrating to see language that seems to suggest a much stronger/certain benefit that science has found so far.

There are case-reports, and other anecdotal accounts, of long term relief. It is not clear how much these results are due to placebo, other meds, or undiagnosed c.diff.

Good studies have much more modest results than the anecdotal accounts - but they show some small average benefit, which means a few people get real good results. Likely there is a subgroup of people and/or an optimal level of flaring, when FMT helps most. Research needs to discover this.

This probiotic treatment, and probiotics in general, seem to have a lot of promise for treating UC. But it is not yet clear what works, for whom, or under what circumstances.

If I fell back into a chronic flare I might consider FT, depending on what else was in the pipeline at such time.
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DBwithUC
Veteran Member
Joined : Feb 2011
Posts : 4347
Posted 5/28/2014 8:34 AM (GMT -7)

tomie46 said...
Yeah i have been to 3 consultants already, all of which have smothered me with drugs which have just made me feel worse and worse. They've given me no answers other we don't know what is wrong so i'm being forced to research this and find a cure myself. Which isn't easy and i often feel like just given up hope.

well tell us if you actually had a UC diagnosis based on biopsies, and what drugs you have tried. We can share more relevant experiences and offer better ideas if you explain more of your history.
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Guardian7
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Joined : Apr 2006
Posts : 2682
Posted 5/28/2014 8:40 AM (GMT -7)
DB -

I already outlined why people fail FMTs in the official thread. Any official study on it is going to fail because they don't get the qualified people to do it. Please go to the thread I linked for a more detailed explanation on it. Hurst cited the same reasons from his experience. I think if it saved a person from surgery and brought him back to no med status, then it's worth looking into.

There are a multitude of reasons that it doesn't work, but the main one is that people don't take the time to find the correct donors. It takes work and is by no means going to fix anything in one day. Ultimately though, it offers a permanent solution to a long term problem.

The reason that Hurst hasn't had a documented failure is because his participants stuck to protocol before, during and after the transplants. The people that followed his (and Dr.Brigg's) protocol have not shown any sign of recurrence yet.

Again, it is something that takes tremendous work and people need to put the time into it. We know that stress alone will increase flare recurrence and many people don't take that into account when doing this.
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garylouisville
Veteran Member
Joined : Aug 2012
Posts : 9088
Posted 5/28/2014 9:37 AM (GMT -7)
It's ridiculous to suggest that FMT has a high long term success rate for UC. If it did everyone would be jumping on board. Oh, I forgot, Big Pharma and the medical profession and Monsanto are in cahoots to keep us on meds forever. It can't even be proven that if a particular protocol is followed correctly that FMT has a high long term success rate for UC. It's a little contradictory to say that it is a permanent solution to a long term problem because if FMT were so successful then UC wouldn't be a long term problem because it would be cured or put into remission in the short term. Right now there is no cure for UC so the only solution is to do something long term, forever. FMT can sometimes fall into this category.
Pentasa(500mg) 2 pillsX2; VSL 1 pillX2; Prescrip Assist Probiotic 1 pill X 2;Vitamin D3;Grape seed extract 400mg X 2; Canasa as needed; DAO as needed due to dietary histamine intolerance

Gave me trouble: Robinul; Zymactive, Renew Life Probiotic 80 billion, Florastor
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Bacon Girl
Veteran Member
Joined : May 2011
Posts : 5490
Posted 5/28/2014 9:43 AM (GMT -7)
Guardian, i should note that I am one of Michael's failures haha he guided me during the process and I got very bad. i used the packets he sent me on chosing a donor but it didn't work for me. it's not a fool proof method by any means haha i wish it was!

tomie, i can't imagine doing FT if you don't have a distinct diagnosis. what meds have you tried already? what is your diet like?
Joanna Banana, 24
100 mg Simponi every 4 weeks
50 mg imuran daily
21 mg nicotine patch (9 hour wear time)
1 AlgaeCal (Calcium, D, K2, Magnesium, C)
1 Strontium
1.5 Melatonin
Turmeric, Lactoferrin, Prima Reuturi

Diet: meat, eggs, fermented everything, and fruits/veggies. 1 tbsp potato starch a few times per week.
Symptoms: none. 0-2 poops/day. gas is minimal since i don't eat many starches now.
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tomie46
Regular Member
Joined : May 2014
Posts : 22
Posted 5/28/2014 10:13 AM (GMT -7)
Hi Bananagirl
I'm doing ft as i don't see any other option. Over the pasted 2 years this "ibs" has taken over my life. I've lost my job, social life, diet, hobbies just to name a few. I'm on the most restrictive diet known to man and in pain on a daily basis so need to try something that may be the answer. I've tried so many herbal remedies to supplements, laxatives, many metronidazol courses, rifraxim, neomycin, albendazole all of which "other then the first metronidazol" have done nothing.
Only the diet seems to make a difference.
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Bacon Girl
Veteran Member
Joined : May 2011
Posts : 5490
Posted 5/28/2014 10:28 AM (GMT -7)
tomie, i totally understand. when you're so darn sick, you get desperate and will try anything! since you're on a strict diet, is your bloodwork ok? are you low in any nutrients?

when i did the fmts, i added psyllium to the poop. didn't help in my case, but that's what the "protocol" i followed said to do.

i know the "have you tried?" questions are annoying as hell but have you tried really restricting fiber? i notice when i'm constipated and bloated that keeping my fiber very low is key to keep things moving. i also use magnesium citrate a few times a week.
Joanna Banana, 24
100 mg Simponi every 4 weeks
50 mg imuran daily
21 mg nicotine patch (9 hour wear time)
1 AlgaeCal (Calcium, D, K2, Magnesium, C)
1 Strontium
1.5 Melatonin
Turmeric, Lactoferrin, Prima Reuturi

Diet: meat, eggs, fermented everything, and fruits/veggies. 1 tbsp potato starch a few times per week.
Symptoms: none. 0-2 poops/day. gas is minimal since i don't eat many starches now.
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tomie46
Regular Member
Joined : May 2014
Posts : 22
Posted 5/28/2014 11:30 AM (GMT -7)
The last blood test i had done was a few months back, but back then it was. I've been on this diet for over a year now so i think so yes. I was wondering weather i should add psyllium or some sort of fibre to the mix as i don't eat much fibre and this is needed to help the new flora growth. Currently i'm just eating broccoli, salad and just started on brown rice in an attempt to up my fibre the give the new flora a chance.

Haha i like hearing peoples opinion so find them all good advise, yes i do eat very low fibre and have been finding recently that coconut kefir really helps me with the constipation, also this helps with promoting good bacteria so hope this can work.

I was wondering weather or not to go back on magnesium citrate again to help try ease all my muscle pain but don't know weather or not the magnesium will kill off the good bacteria i'm trying to grow.
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Guardian7
Veteran Member
Joined : Apr 2006
Posts : 2682
Posted 5/28/2014 11:44 AM (GMT -7)
Hey Bgirl -

Sorry to hear Michael's information didn't work out for you. :(

I think you mentioned a while back that your donor was a nurse, no? People who work in hospitals have high counts of pathogenic bacteria, but those who aren't immune compromised are able to keep it in check for the most part.

Also, psyllium didn't work out to well for me when flaring. It just aggravated my gut whenever I used it.

Post Edited (Guardian7) : 5/28/2014 1:03:05 PM (GMT-6)

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Bacon Girl
Veteran Member
Joined : May 2011
Posts : 5490
Posted 5/28/2014 1:52 PM (GMT -7)
G, yeah, she was a nurse. my GI actually told me (after the FMTs of course) that she was not a suitable donor because she is around c diff all the time!!! haha i wish i would've known that! she worked in labor and delivery.
Joanna Banana, 24
100 mg Simponi every 4 weeks
50 mg imuran daily
21 mg nicotine patch (9 hour wear time)
1 AlgaeCal (Calcium, D, K2, Magnesium, C)
1 Strontium
1.5 Melatonin
Turmeric, Lactoferrin, Prima Reuturi

Diet: meat, eggs, fermented everything, and fruits/veggies. 1 tbsp potato starch a few times per week.
Symptoms: none. 0-2 poops/day. gas is minimal since i don't eat many starches now.
profile picture
sharron19
Regular Member
Joined : Jun 2013
Posts : 253
Posted 6/9/2014 2:15 PM (GMT -7)
Hi tomie, please let us know how you get on with the fts. I hope it works well for you and wish you a full recovery from this debilitating condition.

Post Edited (sharron19) : 6/10/2014 12:43:47 PM (GMT-6)

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tomie46
Regular Member
Joined : May 2014
Posts : 22
Posted 6/9/2014 2:27 PM (GMT -7)
Hi Sharron,
I stopped my last infusion about 2 weeks ago now as my doner needed antibiotics which was a shame but i had done 15 by then. As for my symptoms i had been feeling a lot better gastro wise but the last 5 days i've been getting real bad almost extreme bloating after meals which gets worse though out the day as i eat i.e. best at breakfast worse at dinner/evening time. I can just eat a small salad which would have been fine 6 days ago but now i feel like i've just eaten a loaf of bread. I'm hoping and praying this is die off symptoms as i have had this before when on antibiotics but i guess just time will tell.

How are you getting on with your fts, any improvement as of yet?
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Guardian7
Veteran Member
Joined : Apr 2006
Posts : 2682
Posted 6/9/2014 5:04 PM (GMT -7)
Sorry to hear about your donor.

Ugh. Antibiotics... once the savior of civilization, and now the harbinger of most autoimmune diseases and unnecessary lifelong misery...

Is it possible to find a new donor?

Best.
"After six eleven years in a place like this, you either learn to laugh...or you go insane."
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tomie46
Regular Member
Joined : May 2014
Posts : 22
Posted 6/10/2014 8:41 AM (GMT -7)
Yeah i'm anti antibiotics now.

I do have another donor in mind but i'm not going to use them for now (at least 3 months) as i'm eating a high fibre diet and hoping this will help out the new flora and i won't need them just hope all my pains at the moment are die off symptoms.
smhair
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sharron19
Regular Member
Joined : Jun 2013
Posts : 253
Posted 6/10/2014 11:52 AM (GMT -7)
tomie, thanks for update and for asking about my progress. I report regularly on the success and failure stories thread.

I'm also anti antibiotics. They've ruined my gut!

Did you mean that you are trying to recover by eating a high fiber diet alone and not doing the fts again?

I really hope your pain goes away soon.

Sharron
fm 47
mod-sevr UC Sep 00 (triggered by antibiotics). Not 1 day of remission! could gain some ctr by avoiding cert food until 2012.
have tried lots of alt therapies: Gerson, homeopathic, reflexology, Chinese med, diff restrictive diets, meditations, prayers, etc. Nothing helped!
2013:5-ASA for 3 m ended up in hospital w liver inflammation.
currently:strng probiotics.
fts from:1/5/14
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CoastalChris
Regular Member
Joined : Jun 2014
Posts : 69
Posted 6/10/2014 2:15 PM (GMT -7)
Hi Tom (met you on the IBS board), you have many of the symptoms I have been living with. I thought it was IBD but apparently it's just IBS so this board may not be entirely relevant, apart from the FMT threads. Lots of meds here because people are running a severe auto-immune disease.

I'd be getting a comprehensive stool analysis done if you haven't already. My blood work showed a few different things but it was the stool test and IgG allergy test that really helped out with identifying the gut dysbiosis.

I personally think alteration of the diet is a key element. And definitely if you choose to pursue FMT. You said you've done this to a degree so maybe you should keep altering food groups based on an IgG food group allergy test result and use it to build an elimination diet that avoids the typical inflammatory food sources ie, oils, meats, dairy, alcohol, grains and sugars. I was eating high-fibre a 18 months ago and still it wasn't working properly. I just needed to tweak it a bit more to find relief.

On a side note: Psylium husks hurt the hell out of me and magnesium gives me heart palpitations and a rash that covers my body.

I also found that cruciferous vegetables actually exacerbated my problems. It took me ages to identify this because it didn't seem right. But it was. Again, just personal experience but it might help.

I like how you're looking for alternatives to meds at this early stage. Diet and lifestyle are obviously key elements in overcoming IBS.

I will agreed with Guardian on the FMT donor bit too. My wife was a model donor. And, thankfully, I know of several more.

By the way: I'm now 12 days post fecal pill treatment and the signs are very encouraging despite me not having C.Diff.
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tomie46
Regular Member
Joined : May 2014
Posts : 22
Posted 6/10/2014 2:58 PM (GMT -7)
Hi Sharon i will check that thread then thanks. Yeah as fibre feeds gut flora i'm eating some high fibre foods just brown rice, sweet pots, some fibrous veg nothing with sugar, gluten in though.

Hi Chris I did have a stool analysis done about a year ago now which didn't show anything. I have got to the point where i don't think i will ever find the exact cause of bacterial imbalance etc i'm just hoping i have found the cure with ft. Just i keep having many set backs on the way, bloating, pain still etc.

As for my diet i've been eating low fibre for over a year now just eating plain meats, fish and some veg which keeps my symptoms more bearable but far from under control. Over the next few months i am going to start introducing some more foods into my diet see how it goes.
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