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Posted 12/28/2009 7:45 AM (GMT 0)
I'm hopeful that additional studies will be conducted, as fecal bacteriotherapy might represent a highly effective method of treatment for a specific section of IBD patients. As others have noted, the revolting nature of the therapy serves as a major impediment, however with a sufficient amount of data supporting its efficacy even the most squeamish could probably be persuaded.
Posted 12/28/2009 6:46 PM (GMT 0)
I did a single fecal transplant at home, using my wife as the donor. I didn't find it gross at all (although I had a bit of a cold so couldn't smell anything). It certainly was easier than rectal meds, and had a soothing effect immediately. Within 6 hours the typical pain was gone, and within 2 days my BMs were solid and smelling like my wife's. This was 4 months ago or so, and I haven't had any problems since. I've also been able to relax my diet, which has been a HUGE relief. Before I did the transplant, I'd have D within 6 hours of eating carbs ... now I've had D 4 or 5 times since (and only when diet really goes south, like during Halloween and after drinking a 12 pack of beer).

If you have a donor that you trust, give it a go. I'd recommend 4-5 transplants (e.g. 1 per day for 5 days) ... if I relapse I'll follow this approach for sure.
Posted 12/28/2009 7:55 PM (GMT 0)
LuckyLindy...great to know that you're still doing well from that initial try.

I agree that it's important to find the right donor when doing a fecal transplant. It's especially important to know their medical history, and some people get the donor's stool samples analyzed before choosing them as a donor.
Posted 12/29/2009 3:35 AM (GMT 0)
Ok Lucky Lindy,  I'm glad you responded,,,I was waiting to hear how you're doing.

I'm still trying to convince my son to try this, and use ME, his mom as the donor.

I'm very healthy,,perfect S shaped normal movements,,each morning like clock work.

I eat well, and being his mom,,think I'd be a good donor.  I told him I'd even sterilize the bowls, get a new enema bag and sterilize it,, Saline water,,prepare the enema..and all he'd have to do is go to his room,,,privately,,,lay on his left side,,and just take the enema..he wouldn't have to see it, smell it, or nothing.. :-)   He looks at me like I'm nuts

:-)  but hey..if it works....why not.    I can see how antibiotics give you flares.  I had to take Penecilin once for 2 weeks due to a bad infection under an old bridge in my mouth.    I noticed during that time,  I got frequent mushy stools,, very unusual for me. The doctor said Penecilin will do that.  That was a long time ago. 

But as long as his Remicade is working for him,,he won't consider it.  I still think trying to replace the natural bacteria in your gut seems better then all these drugs.  At least there is no side affect.    Oh well,  just my 2 cents worth. 

Continued success there Lucky.

Posted 12/29/2009 4:45 AM (GMT 0)
Subdued said he was put into remission using FT after having a flare from taking taking antibiotics. It could be he had a bacterial infection in the colon (similar to C. diff.) which is what this process was developed to treat. Stretching this to the rest of the UC community seems like a bad idea unless you're following some protocol lead by a physician who understands your condition and has tested your feces to insure this process is what you really need.

Also, I believe it's one thing if someone is having diarrhea or what I consider extremely mild flare symptoms possibly not even related to IBD (more like IBS) and they believe there is a need to flood their colon with another (donor) persons bacteria in order to achieve a more healthy bm versus using this as a means to treat moderate to severe inflammation from UC (consisting of bleeding ulcers). I too would not be convinced this process would do much for the later case. There is a risk of making things worse.
I mean having diarrhea after eating carbs sounds so mild compared to what others are going through. It seems there would be a lot of other methods (VSL#3) to try before resorting to this.

 

Posted 12/29/2009 5:05 AM (GMT 0)

Burli said...
Subdued said he was put into remission using FT after having a flare from taking taking antibiotics. It could be he had a bacterial infection in the colon (similar to C. diff.) which is what this process was developed to treat. Stretching this to the rest of the UC community seems like a bad idea unless you're following some protocol lead by a physician who understands your condition and has tested your feces to insure this process is what you really need.
Also, I believe it's one thing if someone is having diarrhea or what I consider extremely mild flare symptoms possibly not even related to IBD (more like IBS) and they believe there is a need to flood their colon with another (donor) persons bacteria in order to achieve a more healthy bm versus using this as a means to treat moderate to severe inflammation from UC (consisting of bleeding ulcers). I too would not be convinced this process would do much for the later case. There is a risk of making things worse.
I mean having diarrhea after eating carbs sounds so mild compared to what others are going through. It seems there would be a lot of other methods (VSL#3) to try before resorting to this.

I had a lack of strains of bacteria in my colon from having been on antibiotics off and on for practically my whole life. I did fecal transplantation to put bacteria back into my colon. The procedure was a resounding success. My GI did not feel I had a bacteria infection--that's why he did not test my poo for C-diff.

Why is it a bad idea for others who have been diagnosed as having UC and feel that they could have an imbalance in their fecal flora to try fecal transplantation? The worst I've heard is that one person said it made the flare worse and one person said it put them into a flare. That's not such a huge risk considering that many of us flare a lot and that colitis medications are very damaging to the body.

I have also read every once in a blue moon of others who sometimes post on the boards that they also did fecal transplantation and it "cured" them of their UC, although UC is supposed to be incurable barring surgery. UC is colitis when all external factors are ruled out. In other words, UC is a genetic predisposition. Perhaps it helped their fecal bacteria become more balance; so it helped their disease. Or they really just have colitis due to possibly haven taken antibiotics.

As noted in many of my previous posts, I'm a female and when I flare, I loose tons of blood and blood clots. I had IBS for about 10 years before getting IBD. I ignored the diarrhea and gas that I had when I had IBS. Perhaps I should have done fecal transplantation 10 years ago when I first started getting diarrhea instead of waiting until I started having flares. But then there wasn't any information readily available about the procedure.
Posted 12/29/2009 7:21 AM (GMT 0)

We are developing a modified faecal bacteriotheraphy system employing samples collected from the patients themselves prior to their treatment. Treatment will consist of novel enteric-coated capsules,containing freeze-dried autologous colonic flora that can be swallowed by a patient.
Posted 12/29/2009 10:38 AM (GMT 0)
Sorry about the "he" comment subdued...I thought you said you got that last flare after going on another round of antibiotics. You're right about generalizing flares...for me, when I'm in a remission and I have no symptoms so risking a flare is like risking death (hospital and months of recovery). If you're in and out of flares continuously then it may be a different story...What's wrong with checking this through your doctor though? That's what I was advising. You have an autoimmune disease and you are putting another person's poop inside your inflammed colon (I'm not smart enough to know all the dangers of that but I would want to check it through a professional)...that's just me. The doctor's that do this around the world seem very cautious about it and do a lot of testing before hand.
Posted 12/29/2009 4:41 PM (GMT 0)

Burli said...
Subdued said he was put into remission using FT after having a flare from taking taking antibiotics. It could be he had a bacterial infection in the colon (similar to C. diff.) which is what this process was developed to treat. Stretching this to the rest of the UC community seems like a bad idea unless you're following some protocol lead by a physician who understands your condition and has tested your feces to insure this process is what you really need.
Also, I believe it's one thing if someone is having diarrhea or what I consider extremely mild flare symptoms possibly not even related to IBD (more like IBS) and they believe there is a need to flood their colon with another (donor) persons bacteria in order to achieve a more healthy bm versus using this as a means to treat moderate to severe inflammation from UC (consisting of bleeding ulcers). I too would not be convinced this process would do much for the later case. There is a risk of making things worse.
I mean having diarrhea after eating carbs sounds so mild compared to what others are going through. It seems there would be a lot of other methods (VSL#3) to try before resorting to this.

Burli,

The problem is that Doctors really don't understand the flora of the colon. They often don't understand basic nutrition. They understand surgery and drugs, as those are the primary tools of their trade.

In my case, D after carbs doesn't sound so bad either. However, before I had the treatment a TINY bit of carbs (such as a few nuts) would set me off. I had to eat less than what you'd have during the beginning of Atkins to stay in remission. If I continued eating carbs for more than 2-3 days, I'd have profuse bleeding. More than 2 weeks and I'd be in a LOT of trouble. Like many here, I was told that I had severe pancolitis and it was entirely unresponsive to drugs, they wanted to remove my colon. Modifying my diet severely put me into remission, but maintaining the diet (meat, eggs, veggies, oil, NOTHING else) was very very difficult.

When I did the transplant, I had been eating what I wanted for a little while and not doing great. That single transplant took minutes, was cheap, easy, and helped immediately. There is a decent body of evidence, along with some peer-reviewed (albeit small) studies, to indicate that the procedure is safe and effective for UC patients. It was a no-brainer for me, and has allowed me to mostly eat what I want and live a normal diet. I've started running, can go out to social events without worry (and now with more energy), can eat at restaurants, and live far more normally. None of this was possible beforehand.
Posted 12/29/2009 4:42 PM (GMT 0)

Ashburn said...

We are developing a modified faecal bacteriotheraphy system employing samples collected from the patients themselves prior to their treatment. Treatment will consist of novel enteric-coated capsules,containing freeze-dried autologous colonic flora that can be swallowed by a patient.

What's the use of taking bacteria from a diseased patient though? If (s)he is already missing key bacteria, a self-transplant wouldn't really help much, right?
Posted 12/29/2009 10:15 PM (GMT 0)

Burli said...
Sorry about the "he" comment subdued...I thought you said you got that last flare after going on another round of antibiotics. You're right about generalizing flares...for me, when I'm in a remission and I have no symptoms so risking a flare is like risking death (hospital and months of recovery). If you're in and out of flares continuously then it may be a different story...What's wrong with checking this through your doctor though? That's what I was advising. You have an autoimmune disease and you are putting another person's poop inside your inflammed colon (I'm not smart enough to know all the dangers of that but I would want to check it through a professional)...that's just me. The doctor's that do this around the world seem very cautious about it and do a lot of testing before hand.

Yes. I've had three flares, all occurred in the fall when the weather turned cold, and they lasted for three to six months:

Flare 1: September 2005 -December 2005: I had been taking antibiotics off and on for many years. I had broken up from my ex and was eating only chocolate and drinking only beverages with HFCS. I lost a moderate amount of blood. I stopped eating chocolate, stopped drinking beverages containing HFCS, and switched to a high fiber diet. My flare gradually improved.

Flare 2: September 2006-March 2007: My diet was better but I was beginning to eat chocolate and drink more beverages containing HFCS again. The weather turned cold, and I got another flare. I lost a ton of blood and blood clots. I was in really bad shape by the end of the year. Prednisone helped but by end-February I was prednisone dependent. That's when I did the fecal transplantation and went immediately into remission. My poo returned to how it was in my early 20s before I had been on so many antibiotics for such long durations.

I told my GI that I did fecal transplantation after I had done it. He's heard of it, but that is it. He does not know whether or not it put me in remission. The procedure is too new. He says that I'm very lucky--to have had such a serious flare and to have totally recovered from it so quickly. He kept using the word "amazing" to describe my recovery. The flare did not even leave any scaring. However, he was concerned that I had stopped taking all medicines and advised me to continue taking Asacol for the remainder of my life. I did not. The last time I saw him, he agreed that I did not need a maintenance medicine. He says I'm very lucky.

I did not have the time nor money to find a doctor who knew how to perform fecal transplantation--that's why I did it on my own. I used my intuition to decide how to perform it. I was concerned about using poo from someone who could have some kind of disease and not know it. I also felt that I should use poo from someone who had never been on antibiotics. My granddaughter was perfect. Later, I read that baby poo does not have as many strains of bacteria as adult poo, but her poo must have had the strains I needed and had lost from being on antibiotics because it worked so well.

I did not flare in the fall of 2007. In 2008, I had to take antibiotics for a bladder infection. I took three courses of antibiotics. Each time, I was prescribed a stronger antibiotic. My poo started getting smaller. It did not look as good as it had after doing the fecal transplantation.

Flare 3: September 2008 -December 2008: The weather turned cold, and I got another flare. I took my leftover Asacol (the date was still valid). The flare got worse for the first month and a half. I was loosing blood and blood clots again. I kept a food diary and found out I had trouble digesting fructose. I eliminated foods high in fructose. I also found information about anti-inflammatory foods and pro-inflammatory foods. I went on an anti-inflammatory diet. I discovered that probiotics were being sold in drug stores. At first I took prebiotics by mistake. They did not help. Then I found and started taking probiotics (both down the throat and up the butt). They helped. Gradually my flare improved over the next month and a half. In hindsight, if I had known it would have taken so long, I would have taken a trip to visit my granddaughter and done fecal transplantation again. But I guess it was good in that I found more information about how to treat my condition naturally.
Posted 7/5/2010 6:24 PM (GMT 0)

Subdued,

Could you please share some details on how you used probiotics (which probiotics, how often, times of a day, etc) during the last flare you had.

I am still fighting my last flare that put me in hospital. I am on prednisone and two antibiotics for CMV and C-Diff. I have been drinking Kefir (contains probiotics, 10 types) with almost every meal for the last three weeks but my progress is very slow. In fact I am thinking that the last 2-3 weeks I have been somewhat stuck in the "stage" i am currently in which i would describe as a mild flare (some abd. cramping; couple painfull urges a day; 2-4 soft, at best somewhat formed, BMs; some mucus; very little blood).  

Thanks!

Posted 7/5/2010 8:00 PM (GMT 0)

BarcaFan said...
Subdued,

Could you please share some details on how you used probiotics (which probiotics, how often, times of a day, etc) during the last flare you had.

I am still fighting my last flare that put me in hospital. I am on prednisone and two antibiotics for CMV and C-Diff. I have been drinking Kefir (contains probiotics, 10 types) with almost every meal for the last three weeks but my progress is very slow. In fact I am thinking that the last 2-3 weeks I have been somewhat stuck in the "stage" i am currently in which i would describe as a mild flare (some abd. cramping; couple painfull urges a day; 2-4 soft, at best somewhat formed, BMs; some mucus; very little blood).

Thanks!

Hi Barca,

I think some other people might be able to answer this question better. I usually look for sales. I'm not too particular about what probiotics I use. I take one or two a day, one before going to bed and one when I wake up in the morning. And I mix the powder from one pill with water and put it up my butt every time I have diarrhea, which hasn't happened for awhile.
Posted 7/5/2010 9:37 PM (GMT 0)
Thanks for the quick response

Posted 7/20/2011 3:20 PM (GMT 0)
This all sounds very interesting and I am very much interested in this but I think the challenge will be finding a doctor that will be able to perform this procedure properly and give me a proper diagnosis. From what I've read, many people have brought up the point that doctors are all about administering medication and treating the disease through surgery and such. Seems as though there are only a few GIs in the world that I would feel very comfortable seeing about this matter. I don't even think my current GI even knows about this. I live in Ontario, Canada. If anyone has any recommendations of GIs that they feel know about this matter quite well or if they're just a great GI in general, please let me know. I'm in search of a new GI anyways :)! Thank you!

PS - As for the eww factor of all this; I feel like going to the bathroom a ridiculous # of times a day and have BMs full of blood and mucous and things that just shouldn't be there is far MORE gross! Maybe I'm being unrealistic when I say this but I feel like my UC was Accutane induced and maybe this therapy will help permanently fix my colon. I just don't see how this is gross when it could help so much! As long as the potential side effects are mild, I'm very interested in going through with this.
Posted 7/20/2011 4:16 PM (GMT 0)
Baggravation,

I also live in Ontario, and also have accutane induced intestinal problems.
Yes... from my research this is the only solution. This is the first treatment that
should be employed in every case.

The most important part of this is finding a good donor. I'm in search of one, so if
you find one, I'd be the guinea pick & test it out. Maybe we live close by, then again
maybe we don't.

You don't need a doctor to do this. Do it at home. Screw doctors, there the morons that
put you in this spot in the first place. Who gave you the accutane? Exactly.
Why give these morons more business.

I have some tricks up my sleeve to make everything easier. I've talked with the
leaders in this field, such as Thomas Borody & some of his colleagues.

The hardest part for me is finding a good donor. Might as well find the healthiest donor
possible. But thats a challenge as I don't have any close relatives that are good candidates.
Once I find a donor, the rest is easy as far as I'm concerned.

Good luck to u
Posted 7/20/2011 6:42 PM (GMT 0)
Talk to my family doctor; he was so shocked that I even brought this up. He said I was just diagnosed with UC not too long ago and it isn't that severe and this fecal transplantation is very experimental and he said that he doesn't know of any doctors in our area that would take such a risk on a patient like myself. He said that most doctors don't know much about this and are scared of what adverse side effects could come. He scared me. I need to do some more research on this before I decide to go through with it. He said that I need to make a choice as to whether I'm going with a medical doctor or more of a natural doctor because a medical doctor will always want you to be on some sort of medication. It's times like these when I wish I was never diagnosed. He said something about trading pounds for pennies or something like that. He said I need to not ruin my health now but looking 10 years into the future. I agree with him. I do think about the side effects of certain medications I may take now in the future but I guess I'm not thinking about if I dont take them now, wht could happen to my colon in the future. So much to think about :(
Posted 7/20/2011 7:56 PM (GMT 0)

Baggravation said...
Talk to my family doctor; he was so shocked that I even brought this up. He said I was just diagnosed with UC not too long ago and it isn't that severe and this fecal transplantation is very experimental and he said that he doesn't know of any doctors in our area that would take such a risk on a patient like myself. He said that most doctors don't know much about this and are scared of what adverse side effects could come. He scared me. I need to do some more research on this before I decide to go through with it. He said that I need to make a choice as to whether I'm going with a medical doctor or more of a natural doctor because a medical doctor will always want you to be on some sort of medication. It's times like these when I wish I was never diagnosed. He said something about trading pounds for pennies or something like that. He said I need to not ruin my health now but looking 10 years into the future. I agree with him. I do think about the side effects of certain medications I may take now in the future but I guess I'm not thinking about if I dont take them now, wht could happen to my colon in the future. So much to think about :(

Not sure why one would even bring it up to a GP, lol. I could imagine the look you got. It's hard enough to find a GI doc who has any clue about this procedure. I wouldn't even bring it up to my GI doc. He has no experience with it so his response would have no value to me.

It does something, I just couldn't get it to last. I used my sons feces first, then tried my wifes the second time. My son was a newborn, and my stools smell changed for the following week, but returned to normal a little later. The smell changed again when I used my wifes. I would not mind giving it another go with my son or daughter again since they have had more time to build up bacteria in there.

Only thing you would really need a doc for is if you wanted to do the antibiotics first.
Posted 7/20/2011 8:07 PM (GMT 0)
The fact that your doctor was shocked by it... makes me pretty angry.

These are the people responsible for our health, and also make money off patients.
Yet a new innovative treatment thats performed miracles for some, & he's never heard of it!!

Completely disgraceful. Sorry to be negative, but it sickens me that these doctors make money
to blindly follow what drug companies tell them to.

Do your own research Baggravation. I've already done a ton myself, and yet to find a single case
of any major complications from treatment. The Cdd in Australia has performed close to 1500 fecal
transplant treatments, and no major complications. Not to mention there's about 10 people on this
forum who have performed the procedure. I have yet to hear any of them complaining about major
complications after.

So how do they know its such a risk. Just because they have never heard of it?
Yet somehow prescribing heavy antibiotics has no risk?
These guys belong in jail.
Posted 7/21/2011 1:01 AM (GMT 0)
I hear you. If there were money in it, the pharmaceutical industry would have done one of their "studies" and the new "drug" would be fecal transplantation.

I had absolutely no negative side effects from doing fecal transplantation. The positive side effects: bleeding stopped, bms became formed, gas lessened, and no more mucus. I went into remission immediately. I can hardly say the same for pred.
Posted 7/21/2011 2:11 AM (GMT 0)
Definitely interesting. If I wanted to get this treatment done I believe the hardest part would simply be convincing Dr. Brody to do it for me. Money isn't an issue and I live in Melbourne so I would easily be able to fly up to Sydney to get this done. My sister (I believe) would be a great donor for me since she doesn't seem to have any bowel issues and goes once every 3 - 4 days and is generally healthy.

I am afraid of doing it at the moment though because I am not having any serious bowel issues. I have roughly 2 - 4 BMs a day (usually 3), slight cramping, faint urgency, mostly loose stools (occassional D), no blood and no mucus. My GIs have all said what I have is IBS as my colon is no longer inflamed and when inflammation was present they said it was not antibiotic associated colitis. Out of 4 stool tests for C.Diff, I tested positive for 1 (only for the bacteria though, all 4 were negative for both toxins A and B). I even did a short 7 day course of C.Diff treatment with Flagyl and VSL but saw no difference in my symptoms. Of course I would love for even my current bowel issues to go away and return to my pre-UC/IBS days (and believe that my UC will never return) but fecal transplantation sounds a little extreme for my case, at least for now.

Post Edited (MaxMilian) : 7/20/2011 8:14:29 PM (GMT-6)

Posted 7/21/2011 2:15 AM (GMT 0)

For those who are interested in trying it at home, here's a link to the full protocol that was printed in one of the medical journals. It's for C. Difficile but the protocol would be the same. Michael Silverman (University of Toronto, Mount Sinai Hospital) is doing work with this and saw such great success that he felt a home protocol should be out there to get to as many people as possible. There may be some fecal bacteriotherapy clinical trials for ulcerative colitis coming up in Ontario but I won't find out until later this fall. I'll post in this forum if anything comes up.

http://crohnsend.com/documents/dr_silverman_home_transplants.pdf

This is a great article that was in the Toronto Star a while ago as well

http://www.healthzone.ca/health/newsfeatures/research/article/968384--hospital-to-try-fecal-transplant-as-cure-for-superbug

Posted 7/21/2011 5:14 AM (GMT 0)
I know Australia is big on the whole fecal transplantation but I haven't heard much about it in Canada. My family doctor is very open to hearing about these things and he is well educated on this but being a family doctor and not my GI, there isn't much he can do but talk about it with me and provide his recommendations. Where I live, the GIs are not very open to "other" procedures. I know for a fact I wouldn't want to do this at home, on my own, because I just don't trust myself doing something like this. I would feel more comfortable if a GI did this for me; someone with some medical knowledge.
Posted 7/21/2011 8:33 AM (GMT 0)
From the Journal of Clinical Gastroenterology (September 2010)

Fecal Bacteriotherapy, Fecal Transplant, and the Microbiome
Floch, Martin H. MD - Yale University School of Medicine
http://journals.lww.com/jcge/Fulltext/2010/09000/Fecal_Bacteriotherapy,_Fecal_Transplant,_and_the.8.aspx

Excerpt:
"In this issue, there are 3 papers published that involve the fecal microbiome. One is an important physiologic study and 2 are a further elaboration of treatment using fecal bacteriotherapy, now often referred to as fecal transplantation."
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