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Fecal Transplant - I took the plunge! PART II

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Posted 12/6/2009 7:22 PM (GMT 0)
Its purpose is not to give the immune system something to attack. That's not what probiotics do either. Whipworms yes.

Don't think this will help me with my last few attempts.
Posted 12/6/2009 8:35 PM (GMT 0)
Hi Burli,

       Thanks for the reply. Yeah, the more I learn about this affliction the more I do not understand it! It is quite interesting hearing your experience.

        I would be willing to give this procedure a try, especially if the blood continues! I guess the blood loss is the scariest part for me.

       This is an amazing body that we live in and I am sure that there is a cure. It is great to be a part of this forum.

Thanks

Posted 12/6/2009 10:26 PM (GMT 0)
Burli, you obviously did not read the complete paper. Go read it (www.cdd.com.au/pdf/paper17.pdf). There was a typo in the Abstract for UC duration in that they all had it for at least 5 years. I'm amazed at the results given the severity of the disease that the patients had experienced based on the medications that they were taking prior to HPI.

My question for the doctor is why he did not follow up his study with a larger trial given such impressive results.

Here is another paper by him that discusses 17 studies documenting HPI (www.cdd.com.au/pdf/paper12.pdf). I have not read this paper yet.
Posted 12/6/2009 10:39 PM (GMT 0)
I've discussed this with my brother-in-law, an internist (grad top of his class 1990, researches autoimmune diseases as he has one himself and his wife has UC and stays up to date with his medical journal readings). His premise is that the purpose of this and probiotics IS the same as whipworms; to provide the immune system something to go after...that is in the context of helping UC. I understand the premise behind why others (those who prescribe to the SCD approach for instance) believe different; I don't buy that theory. I base my opinion on personal experience as well.

I do agree, however, that probiotics to aid in digestive function in maintenance of proper gut flora. This has nothing to do with UC in my opinion but is necessary for everyone's good health.

I think the taking of antibiotics prior to this procedure is reckless and would never try it for that reason alone...
Posted 12/6/2009 10:51 PM (GMT 0)
So they had it for at least 5 years...doesn't change anything... After 23 years I can achieve remisson and go off all meds with no signs of active UC for 4 years...I had a clear colonoscopy last May...showed no signs of active UC.
I don't find the results of this study amazing...During my flares I have no help from any drugs that do not effect the immune system. So I believe that in time my, and others, immune system backs off on its own if we can make it long enough...I believe that you could have put koolaid up these people and gotten the same results...without a double blind study that's all one can assume.
Posted 12/6/2009 10:57 PM (GMT 0)
If that were the case everyone who took a probiotic would have an immune response?
Posted 12/6/2009 11:04 PM (GMT 0)
There is a broken in our immune system where it doesn't know when to turn off and is not recognizing the difference between what it's supposed to attack and not supposed to attack. That's a fundamental difference between us and a healthy individual, their immune system would not go after their healthy tissue. As to whether their immune system would have a response to a flood of priobiotics...possibly, but it might just give them diarrhea and gas; not a ulcers.
Posted 12/7/2009 1:13 AM (GMT 0)
I understand all that. It's going to attack our colon regardless. Why would putting normal bacteria in there cause it to attack it more and initiate a strong enough immune response to alleviate symptoms? Seems no one with their UC kept in check should take a probiotic if that were the case. Would just cause them to flare, which doesn't seem to be the case for most of us. The diarrhea and gas wouldn't necessarily be an immune response for a normal person.
Posted 12/7/2009 1:36 AM (GMT 0)
I don't see it causing an immune response but rather feeding what's there something to go after besides the good tissue cells (I'm no biologist so I realize I'm using non-technical terms). Remicade attaches something to the immune system's cells in order to "block" them from being able to attack to the colon's cells (dor lack of a better word), imuran and steroids work to reduce the amount of immune system cells to stop as much from being able to attack. I'm saying probiotics and other (fecal transplant, apple cider vinegar, and other enema concoctions) are just providing a "food" source for our immune system. If not in a flare the immune system would not be triggered by this food source; I don't think it would stress the immune system necessarily...unless one just took a ton of probiotics which gave them diarrhea over the course of days then yes, I would believe that it could start a flare (so this would be a triggered immune system response from taking too many probiotics when in remission or using fecal transplantation; one in here says it made them worse; I understand why it did with my logic). Thanks for the discussion.
Posted 12/7/2009 2:14 AM (GMT 0)

Burli said...
I don't see it causing an immune response but rather feeding what's there something to go after besides the good tissue cells (I'm no biologist so I realize I'm using non-technical terms). Remicade attaches something to the immune system's cells in order to "block" them from being able to attack to the colon's cells (dor lack of a better word), imuran and steroids work to reduce the amount of immune system cells to stop as much from being able to attack. I'm saying probiotics and other (fecal transplant, apple cider vinegar, and other enema concoctions) are just providing a "food" source for our immune system. If not in a flare the immune system would not be triggered by this food source; I don't think it would stress the immune system necessarily...unless one just took a ton of probiotics which gave them diarrhea over the course of days then yes, I would believe that it could start a flare (so this would be a triggered immune system response from taking too many probiotics when in remission or using fecal transplantation; one in here says it made them worse; I understand why it did with my logic). Thanks for the discussion.

I don't think this is the case; otherwise, there would be no difference between good fecal bacteria and bad fecal bacteria. I think the good bacteria help to digest our food. When the good bacteria isn't present, then we can't digest our food completely and the immune system cuts in. This would also explain why people with UC also have trouble digesting their food.

I think the above is the case for people whose colitis is due to a bacteria imbalance. Not everyone has colitis for this reason though. Still a bacteria imbalance can make things worse even for those people who have UC for other reasons, such as hereditary.
Posted 12/7/2009 3:34 AM (GMT 0)
Burli,
From my understanding, The Center for Digestive Diseases, where Dr. Barody is based, has produced one or more Nobel Prize winners (for their work on H.Pyloi). He's not a quack, he's at the cutting edge of treatment based at a highly repected institute. Maybe in 10 years he'll win an Nobel for figuring out how to cure IBD!?
Posted 12/7/2009 3:36 AM (GMT 0)
 

subdued said...
(I don't think this is the case; otherwise, there would be no difference between good fecal bacteria and bad fecal bacteria. I think the good bacteria help to digest our food. When the good bacteria isn't present, then we can't digest our food completely and the immune system cuts in. This would also explain why people with UC also have trouble digesting their food.

I think the above is the case for people whose colitis is due to a bacteria imbalance. Not everyone has colitis for this reason though. Still a bacteria imbalance can make things worse even for those people who have UC for other reasons, such as hereditary.)

I don't think there is a difference between good fecal bacteria in the way it would help UC and there has been no evidence to suggest such. The key is to just, if this works, flood the colon with bacteria. That's why I link it to the whipworms but I trying to figure this out. The difference between good and bad bacteria, not related to UC, would be way food is digested and which bacteria feeds on what. Having too much of either would cause diarrhea and gas—the same symptoms reported by those who take too much "good" bacteria (probiotics or yogurt). People think that if something is labeled as good for you they can just ingest more to feel even better. Moderation is essential except if you are flaring then, yes, either a flood of good bacteria or bad would work to feed the immune system.

 

I stress that this procedure is a means to cure C. Diff. and other pathogens which cause bacterial infections. It makes sense to me for that but to apply the same logic to UC may not be true...also, there are too many risks in taking the antibiotics, it's not an easy thing to do, it’s messy and there are alternatives which are much safer and easier (probiotics).

 

If someone wants to try it I would suggest they just take a bunch of VSL#3 instead. I'm starting the VSL#3 tomorrow when it comes in the mail.

I had to edit this post because of mistatements and wrong assumptions I made that others pointed out...thanks

Posted 12/7/2009 4:57 AM (GMT 0)
 

Hi there

As some of you know, I have been using FT to control a flare that had become steroid dependent - I really couldn't get below 50mg pred without symptoms returning. The last time this happened I started fecal transplants, and was immediately and profoundly improved.  I did 5 infusions, then stopped, and was symptom free for about 4 days, after which time my symptoms started returning.  The paperwork I have from the Centre for Digestive Diseases recommends doing the infusions for a minimum of 5 days, preferably longer, so I am 3 days into a 10 day programme, and already my symptoms have abated.  I am down to under 25mg pred, and taking no other medications (for the first time in 4 years).  There is absolutely no doubt in my mind that the infusions work for me - my challenge is getting the improvement to stick so that I don't have to carry on doing this procedure for the rest of my life!!

I have attached a link to the Probiotic Research Therapy Centre, which is part of the Centre for Digestive Diseases. One of their theories is that the treatment may be less effective when the colon is very inflamed, because the 'good' flora have difficulty colonising, which makes sense to me, since my symptoms improve markedly while I'm treating, and then slowly deteriorate.  Hopefully, if I do a longer series of infusions, the inflammation will settle and I will get longer term symtom relief.

Always interesting to read other opinions.  I notice that there were a few comments about why there haven't been large, randomised, double-blind controlled trials for this therapy.  Who is going to pay for that?????  Clinical trials are expensive, and are generally funded by pharmaceutical companies.  Big pharma has nothing to gain from this therapy becoming mainstream. Not to mention the difficulty of finding large numbers of patients willing to undergo the procedure.  And how would you standardise the donor samples?  Everyone's poo is different, so you might expect different results depending on donor samples.  Not really as easy as it sounds.....

Anyway, will keep you posted on how I go.  I would be willing to keep doing this a few times a week to get me to the end of my pregnancy without having to start on Remicade, which my doctor has already lined up for me in case this failed.

Hope everyone finds the treatment that works for them...

amygrace

http://www.probiotictherapy.com.au/physicians/diseases_4.html

Posted 12/7/2009 6:27 AM (GMT 0)

Burli said...
So I contend why not just provide a flood of bacteria via the very strongest oral probiotics instead of going though all that mess? I believe you would have similar results.

Poo has way more varieties of bacteria than probiotics. I did fecal transplantation for my second flare when prednisone stopped working. I did it three times over three days and went immediately into remission and stayed in remission for two years.

Unfortunately, I had to be on antibiotics again three times in a course of a year and got another flare. I found out about probiotics and took those instead of doing fecal transplantation, because I wasn't able to go visit my daughter and use my granddaughter's poo at the time (though in hindsight, I should have taken some days off from work and done so).

I would mix the probiotic powder with water and put that up my butt after I had diarrhea. I was also taking probiotics orally. The probiotics helped. My flare gradually diminished, but it took a month and a half and about three bottles of probiotics to do so. Plus, I was eating only anti-inflammatory foods and avoiding all pro-inflammatory foods and foods containing HFCS or that are high in fructose. When I did the fecal transplantation, I did not yet know what foods bothered me. I was eating pro-inflammatory foods and drinking V8 juice.
Posted 12/7/2009 6:46 AM (GMT 0)

Hi Burli

I am not a scientist, but my understanding is that some cases of UC may be a result of a bacterial imbalance which triggers an inappropriate immune response.  The solution would therefore be to correct the imbalance through probiotics (fecal transplant), and hopefully shut off the immune response.  When you say  "When the bacteria is not there for your immune system to attack, your symptoms return", I think that is quite different to what Borody is proposing.  My understanding is that he is saying there is a proliferation of "bad" bacteria, and that our immune system cannot attack the bacteria itself, so it attacks our colon, where the bacteria are housed.  If we are able to re-establish a normal balance of bacteria in the gut, then the immune response may stop.

(http://www.probiotictherapy.com.au/physicians/concept_2.html)

I have taken loads of good quality oral probiotics (not VSL3), and it didn't make any difference at all to my symptoms.  The HPI had an immediate and significant impact.  But yes, it is much messier!

I started on IV steroids in September, which got my symptoms relatively under control, but I couldn't make the transition to oral steroids without flaring.  Hospitalised again in mid October for another week on IV steroids, and again flared on oral steroids upon discharge from hospital.  Upped my prednisolone to 75mg, which kept things in check, and started to flare once I got below 50mg.  Started HPI which improved things instantly and has allowed me to taper down to 22mg.  It is perhaps more important for me to get off steroids as I am pregnant.  If I had been willing to do a year-long taper down from 75mg, perhaps I would have had the same result, but that was not an option for me.

I was on 3-4 gm Salafolk granules for 4 years prior to this flare.  have also used salafolk enemas and cortifoam enemas to effectively treat minor flares, but they were completely ineffective during this last bout, so I stopped using them whilst on high dose of pred.

I have been advised to do weekly maintenance HPI for a while.  If that keeps my symptoms at bay, i am more than happy to do that, at least until I have this baby in March.  If I flare again, i will talk to the people at the CDD in Sydney and seek their advice about what I should do next.  I certainly choose this over remicade during pregnancy.

Thanks for the debate.  It's a shame this is such a poorly understood disease!!

amygrace

Posted 12/7/2009 7:04 AM (GMT 0)

Burli said...


I stress that this procedure is a means to cure C. Diff. It makes sense to me for that but to apply the same logic to UC is backyard science...which is why this has not been picked up by any leading researchers or doctors...there are too many risks in taking the antibiotics, it's not an easy thing to do, it’s messy and there are alternatives which are much safer and easier (probiotics).

I thought the logic was that fecal transplantation might help those who have an imbalance of fecal flora. I was diagnosed as having UC; however, I also have been on and off antibiotics for probably all my life. Many of the antibiotics I have taken are known to destroy strains of fecal bacteria. That's why I did fecal transplantation--to put those strains of bacteria back into my colon. And that's why I used my granddaughter's poo. She's never taken antibiotics. If you are someone who got UC when you were a child, someone in your family has UC, and you have not been taking antibiotics, then there is probably a much lower chance that fecal transplantation will work for you. Sorry for that.
Posted 12/7/2009 7:57 AM (GMT 0)
Yes this is a very informative debate for me..it's my way of getting facts fast...thanks for all the information and links

amygrace: on one earlier post you said you did 6 infusions and where then going to do weekly maintenance. I guess you did 5 and stopped and are now doing 10 then going maintenance. This is great that you are sharing...thanks for the details and links. So you did not take antibiotics either...taking antibiotics for this is what really scares me. I lost all hearing in my right ear after taking strong antibiotics and I hate to risk something again unless I'm reall certain it will work.

subdued: this worked for you, you're in a current flare and you're not doing it again...get your butt to your over to the donor man!

Others in here were asking questions and saying they would try it--I wish they would check back in with results...please

Two people said it made them worse or started a bad flare...two people it helped...the links to papers were not scientifically significant but hey, I admit the Dr. is convincing in his logic and I hope this leads to some cure or effective treatment.

I'm not trying it yet but I'm getting very tired of being sick and I'm going to do everything before I consider surgery.
Posted 12/7/2009 8:35 AM (GMT 0)

Actually Burli, I did do 6 attempts, but, as you will likely find if you try this, it is an acquired skill, so I'm not sure that the first couple were as effective as they might have been!!  There is no doubt that it is a somewhat messy and unpleasant therapy, but I'm getting used to it, and getting better at it!!

I do want to talk to someone at the Centre for Digestive Diseases about the safety/efficacy of doing this treatment repetitively, or long term. I am working under the assumption that at some point the good bacteria will overwhelm the bad bacteria, my immune response will normalise, and I will go into remission.

I can understand not wanting to attempt something unconventional, with little empirical backing, if you are already suffering badly. Particularly given that Borody thinks this treatment works best on an uninflamed colon. My sigmoidoscopy done just prior to treatment showed moderately active UC, which might be why I am having trouble getting it to stick...

Will keep you posted.

amygrace

Posted 12/7/2009 12:46 PM (GMT 0)
on youtube
http://www.youtube.com/watch?v=crm4pKz6X2M&feature=PlayList&p=929205EC991F802C&index=0

interview with dr borody
Posted 12/7/2009 3:33 PM (GMT 0)
Amygrace, what are some of the infusion techniques you have needed to improve; what works, what hasn't with regard to getting it in and throughout the colon as high as possible? How closely are you following the CDD's protocol; diet, etc? For your second round now, did you do the ABX and colon washout prep, or just start right in with the infusions.

Started ABX prep, will be infusing within a week or so...

David
Posted 12/7/2009 4:38 PM (GMT 0)
David,
Where are you having this done? I live in the US and wonder how to get my doctor to "go" for something like this. I wouldn't want to do it on my own. I believe the antibiotic pretreatment is essential if following the logic of Prof. Barody from what little I have picked up. Is ABX the antibiotic prep? I believe it would be tough to have my GI do this as I don't believe this stuff is FDA approved. I guess that's why folks are doing it at home themselves.

amygrace: Just because a drug company won't fund it for lack of making money does not mean there are not other sources of funding studies like this. University of Iowa got research funding from the Iowa for the pig whipworm double blind study. The US government funds research all the time for the mere scientific merit of it. I'm sure most nations fund science for other than profit.

lupo joe: Interesting video but that interviewer was frustrating to take (probably due to my steriods). From the video I learned Prof. Barody is treating Chrohns Disease as a MAP (pathogen) infection but it was difficult to draw the link between Crohns and Colitis from the video. In Barody's treatment for Crohns, antibiotics are used to kill the MAP. He talked about how Crohns, unlike colitis, has areas of inflammation in patches (not connected) throughout the GI system. He uses this as a reason to say crohns is not an autoimmune disease but rather a bacterial infection (makes sense as he presents it). However, Colitis is not in patches (continuous from the rectum) so I'm having a hard time seeing the link. Interesting video, thanks for the link.
Posted 12/7/2009 5:29 PM (GMT 0)
Hi Burli,
I am doing it at home. ABX is referring to antibiotic prep, yes. I am taking only flagyl; two caps per day, I forget the exact dose.

In the Borody interview he briefly talks about fecal transplants, so that is probably why LJ posted it; also just good to see and hear the doctor speak. Patchiness is a big difference; look up Dr. Marcel Behr's recent paper published in IBD on Mucosal pathology being secondary, for a potential explanation of the patchiness seen in CD but not UC. Some CD is caused by MAP, and for some patients with MAP associated CD, the current antibiotics can produce significant remissions approaching cures, but this does not work for all patients. Sorry you found me difficult to take (i am the interviewer - i was quite nervous).

David
Posted 12/7/2009 6:13 PM (GMT 0)
David:
Oh I'm very sorry to insult you. Well, I can say you did better than I would have. Thanks for doing it. It's the steriods which cause me to not have patience for things not perfect...you had him get the information across so you did great in that respect.

So how are you getting a prescription for the flagyl..I guess you're an MD yourself maybe? I think this may be my last gasp at seeing remission. Where do you live? Did you go to Sydney for the interview?
Posted 12/7/2009 8:05 PM (GMT 0)

Burli said...


subdued: this worked for you, you're in a current flare and you're not doing it again...get your butt to your over to the donor man!

Hi Burli,

I must not have written something correctly. Probiotics and diet worked. They just took longer. I'm not in a current flare. I'm in remission and having perfect poo. I don't even have IBS anymore.

Burli said...


Two people said it made them worse or started a bad flare...two people it helped...the links to papers were not scientifically significant but hey, I admit the Dr. is convincing in his logic and I hope this leads to some cure or effective treatment.

I've actually read of more accounts of fecal transplantation working on other sites and even twice on this site. They state how fecal transplantation "cured" them, and then disappear.
Posted 12/7/2009 8:21 PM (GMT 0)

amygrace said...
Particularly given that Borody thinks this treatment works best on an uninflamed colon.
amygrace

Yes. I have heard from others' experience with doing fecal transplantation that it does not work as well if the colon is very inflamed and has been inflamed for a long time. Perhaps, it is harder for the bacteria to take hold and multiple due to inflamed and damaged tissue. I had only two flares when I did fecal transplantation, and my flare was not so severe at the time due to the prednisone. I just couldn't reduce the prednisone without the bleeding coming back.

It really is better to try fecal transplantation early on before the colon gets too inflamed or damaged.
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