Why are doctors not recommending fecal transplants?

[Ihurt]

I have been sick with intestinal issues for 2 years already. I am not diagnosed yet. But I have been reading a lot about how many digestive disorders if not all have a lot to do with the lack of beneficial gut flora. I believe my intetsinal issues are due to being on antibiotics. A lot of people in here also have said their crohns started after they were on antibiotics. There have been many studies that have been done with doing fecal transplants that had a 98% to 100% cure rate with C-diff. Now people with IBD are doing it and are getting well. It kind of makes sense, seeing if you have a healthy donor. I am wondering why more gastroenterologists are not doing this or reccomending it to their patients as a form of treatment, especially seeing that it has such a great success rate. I am seriously thinking about doing it. I am going to bring it up to my gastro doc when I see him next week. I do not think they even do it here in Chicago yet, but I think you can even do it at home yourself. I kind of think the doctors do NOT want to mention this to their IBD patients. I mean think about it, they would not be able to make any money off of this type of treatment especially if you get well.. What do you all think about this? I mean it does make sense to add back healthy flora to the intestines.

 

[wild_one353]

it has to be proven with the correct scientific experiment, it has to be a controlled study so that they know with scientific certainty the results are not due to coincidence. in other words they want to know patients just simply would not have become better on their own, and thereby identifying the cause of their improvement was from the treatment alone. all the evidence that currently exists on fecal transplants are considered case reports/anecdotal and not scientific evidence. case reports/anecdotal evidence is the first step, controlled studys are the final step, preferably placebo.

i believe in this case, to question the existing evidence and whether people became improved due to some other reason and saying it may have been pure coincidence is unreasonable, because never before has it ever been documented for 6 patients(2003 borody) to have a remission greater then 2 years without any drugs at all, its almost obvious that it was the fecal transplants, but to bring it to the highest level of certainty, it must be demonstrated at this high level of scientific reasoning.

there are five studies being done that will be completed this year and in 2014, one was just completed but the results have not been released yet. another finishes in may i think. then the last three will be completed next year.

i would say as soon as 2015 we might have the fecal transplants mainstream. so 2-3 years from now at the soonest, that's a very positive estimate though.

i say find yourself a donor get them tested for hiv, hepatitis, std's, GI issues, stool pathogens tests, then do it yourself.

 

[mnsun]

Meriter Hospital in Madison WI has at least one (Gary Grioglione), maybe a few, gastroenterologists who have publicly advertised that they offer this treatment. Not sure if it's explicitly offered for C-Diff only or everyone with an IBD. Definitely worth checking into, in my opinion. Let us know if you do.

Or you could do it the old fashioned way, as David half-jokingly suggested, with a turkey baster:
http://host.madison.com/news/local/...cle_de00b424-e804-11e1-ad93-0019bb2963f4.html

 

[Ihurt]

Thanks for the replies. Seriously, I am thinking about doing it myself. I would probably use my dad as a donor. He is really healthy in general. He hardly ever has been on antibiotics, the last time was over 14 years ago! He seems like the best donor. How do I get his stool tested? I would have to find a doctor to do that. I mean if noone here does it, then I guess I will just have to go with it. I mean my dad is a healthy guy. One thing I wonder about though. My norm when I am healthy is to poop once a day. My dad's norm had always been 3 times a day. If I use his poop for the transplant will I end up having to go three times a day?? Sorry if that sounds like a stupid question but just wondering.. For me it is difficult. I have to shower and clean well after every bowel movement due to being very prone to UTI's. I would hate to have to go through all that cleaning three times a day. So far I have been lucky and not had the diarrhea, but that can change anytime. I mean my inards just feel like they are getting worse and worse these days.

I am guessing to do it at home I would do the trasnplant via enema??? I know there is a website that is all about fecal tranfusions that will sell instructions on how to go about it all. I may check into that...

Wildbill: Thanks for all that info, very informative!

mnsun: Thanks for the link! A turkey baster?? Now that makes for an interesting time

 

[Ya noy]

I think that within the next 2-3 years fecal transplants will become mainstream. Right now there haven't been enough clinical study results published, but there will be soon.

 

[kiny]

I just read a study that fecal transplants increase IBD associated bacteria, I should have saved it. Which evidence is there that it's beneficial for crohn's disease outside of anecdotal evidence. What if it worsens your crohn's disease. Is your inflammation directed at commensals, do you know this?

Let's take the most discussed commensal for crohn's disease. Faecalibacterium Prausnitzii. They know absolutely nothing about this bacteria, it's a bacteria that has only been isolated very recently. Some studies are currently saying it has a protective role because they see increased IL10 production, other studies are saying F Prau might be worsening corhn's disease.

So we can't even agree on the most researched commensal of the gut flora of crohn's disease, and we are going to give people a few thousand random bacteria we know even less about, and we don't even know what we're giving them to begin with.

Step into the shoes of a doctor for a minute and ask yourself if you would recommend a treatment that has never been associated with improvement in crohn's disease, and has the potential to make the disease worse. You wouldn't recommend it either.

 

[UnXmas]

I don't know much about fecal transplants, in fact I only heard of them recently when I coincidently saw them on a documentary. This was only a few months ago, and if I remember correctly they were a very new development, still needing research, which must also mean there are no long term studies available (i.e. if someone has a fecal transplant now, they don't know what the effects will be years down the line).

I agree with kiny that the reason this isn't being recommended by doctors is because they have a responsibility to their patients to only use treatments which have gone through the necessary stages of research, where they can be reasonably sure of the risks involved.

Even if a doctor was convinced that fecal transplants would help, I would imagine that in most countries a doctor's career would be at stake if he prescribed something that hasn't been approved, he'd risk being sued if the patient suffered negative consequences from the transplant, and it may well be that it's illegal to carry out an unproven procedure on a patient.

So even if a doctor wants to help a patient and if that doctor personally thinks a fecal transplant would help, his hands are still tied.

 

[UnXmas]

One thing I wonder about though. My norm when I am healthy is to poop once a day. My dad's norm had always been 3 times a day. If I use his poop for the transplant will I end up having to go three times a day?? Sorry if that sounds like a stupid question but just wondering.. For me it is difficult. I have to shower and clean well after every bowel movement due to being very prone to UTI's. I would hate to have to go through all that cleaning three times a day. So far I have been lucky and not had the diarrhea, but that can change anytime.

Count yourself lucky - there have been days I've gone ten times, although that's only the worst days. But I know some people here often go more than that.
I have gone years having diarrhoea everyday, and always clean up properly after, preferably showering, as I often have torn skin so I want to make sure I stay clean. Sorry to get off topic.

I have no idea about the number of times you'd go, but I'd guess that you wouldn't end up with the same bowel habits as the donor, since it involves the speed of you intestinal motility, diet, etc. etc.

The fact that you haven't been diagonsed is another important issue. For the same reason that doctors would be very unlikely to prescribe corticosteroids to a patient with possible but unconfirmed Crohn's, they're not likely to recommend this either. They're not going to provide a treatment with all its risks and side effects to someone undiagnosed as they can't be sure it stands any chance of helping. Though this would depend on how risky fecal transplants turn out to be. If they're very low-risk, then a diagnosis may not be necessary.

 

[Ihurt]

Thanks for all the replies.

Ya noy: Yeah, I am guessing there likely has to be more studies on this before they do become main stream.

kiny: Yeah, I did not look at that way, but you do have a point. But, I think that most doctors would Not recommed this treatment unless it was FDA approved( at least here). I dont think is has much to do with doctors being afraid of making a person's illness worse, they do that ALL the time with prescribing toxic drugs that actually have lethal side effects and have actually killed people! It is all a cover you butt type thing. If fecal transplants become main stream and are approved, then they will likely have no issues recommending them( even if there are serious side effects). I never thought about the whole issue with being exposed to a bad bacteria during a transplant though. I mean that is a concern. You would think they would take the stool of the donor and culture it to see just what types of bacteria are present. I guess they do have a long way to go as far as needing more studies done. The only studies that have really been done and have had a 100% success rate was with people suffering C-diff infections. The fecal transplant is the cure for it. Hopefully they will do more studies on it for other diseases. I mean there are people who are doing them for other GI issues and are getting well. But like you said, has anyone done it and had a negative effect?? That is what they need to find out..

Unxmas: Ughh, I pray to god I never get Diarreha that many times a day, I feel so bad for anyone who suffers that. I suffer the feeling of having to go ALL the time with severe pain ALL the time. I mean I have to sit with a heating pad ALL day for any relief. I have no life. I remember my urologist telling me in these words " Hon, you cannot get diarreha"! Umm, gee, I am sure most people dont want diarreha but have no choice in the matter!!! Then to make matters worse his nurse goes on to tell me that she has seen women in a horrific state. Some have IBD or IBS and have chronic Diarreha. She said they are living with constant infections in the urinary tract and that some have gotten kidney damage from it! She was like once you get the diarreha, well the the UTI's will follow suit and you will need antibitoics and then the diarreha will get worse and then comes another UTI, yatta, yatta, yatta. She said it is a viscious cycle you cannot get out from under. Ughh, that is my worry. I mean obviously this does not happen to all women, just ones that have IC or women who are prone to UTI's in general. It is a nasty situation to say the least. Wish I was born a man! Then I would not have this issue with the UTI's and stuff. I mean honestly, when my time comes I have that bone to pick with the big guy up there! Why the heck did he make the woman's privates so close to the poop shoot is beyond me!

 

[Ya noy]

From what I understand, those who have decided to treat themselves using fecal transplants at home, have done so out of sheer desperation. They just couldn't take the pain any longer, and as one poster stated recently stated, he was already way past suicidal, and was actively trying to commit suicide. At that stage, long term effects are kind of a mote point.

If I was in severe pain, and knew for a fact it was due to an inflammation or bacterial overgrowth specifically in my colon, I might try it at home, regardless of the risks. If I could withstand the pain though, I'd rather hold out for another year or two and wait for the results of the clinical studies, and utilize the services of a physician. WHy? Because if something goes wrong, and you used medical services, you would then have recourse.

Ihurt,

I've had a number of UTIs, and like ear infections, mine normally resolve themselves, without having to resort to antibiotics. Yeah, lots of cranberry juice, like a gallon or more a day, supplemented with cranberry extract drops or pills. Drinking massive quantities of fluids helps dilute and flush out the bacteria causing the UTIs, and pineapple and blueberry juice work as well, along with adding a little baking powder.

There's also an over-the-counter pain reliever for UTIs. Can't remember the name off hand, but makes you pee bright green or blue! It also works well to relieve the pain and burning sensation.

 

[Ihurt]

Ya Noy: For me bacause I have the Interstitial cystitis it makes my UTI's more complicated. Their theory with IC is that the bladder loses it's protective layer of skin and it vunerable to chemicals is urine and bacteria are able to adhere moreso to the bladder. Cranberry juice is a Huge No NO for people with IC. When I first got a UTI after getting the IC I drank a ton of cranberry juice, and I mean the 100% pure kind. It wrecked my bladder. I mean I was in agony for weeks! When I told the doctor about it, she said IC patients cannot tolerate cranberry juice, it will irritate the bladder badly so I learned the hard way. I also cannot have anything with too much citrus either. I do however take a product that is natural called Dmannose powder. It is a sugar derived from cranberries( it was the substance in the cranberry that helps with preventing UTI's). This way I get all the benefits of the cranberry without all that acidity.

I agree with you, if I got to a point where I was desperate or not getting any better or was out of options, I would not hesitate to do the fecal transplant at home. It is still new and it does need more studies done on it. I think they will find that it is a good alternative though. I mean I know there are A lot worse drugs out there that are suppose to treat crohns that are likely even more lethal and dangerous to a persons well being as far as side effects go...

 

[Cat-a-Tonic]

Hi Ihurt, this is a longshot for sure, but I remember reading about this a few years ago, and it interested me because I also get recurrent UTIs (not on the scale you do, and I don't have IC). Scientists can actually make you a new bladder now out of your stem cells. Here's an article:

http://www.thedailybeast.com/newsweek/2010/12/07/future-of-medicine-growing-new-organs.html

And going back to the diarrhea thing, heck in remission I used to go 10 times a day sometimes before I discovered psyllium husks. During one of my worst flares, I counted my bathroom trips. I got really exhausted and delirious so I lost count around 30, but in total I think I went about 35 times in a 24 hour period. But I would still honestly take that over IC, it sounds just horrible. I hate UTIs and I really feel for you, it must be so awful. Sending you a big hug!

 

[Ihurt]

Cat-a-Tonic: Thanks for that link on the bladder. It is very interesting. I just wonder if whatever attacked my bladder could attack a new bladder too? But it is very interesting.

Oh my gosh, going to the toilet 35 times a day, that had to be sooo awful for you! I am so sorry. I mean that is agony in itself. That is my biggest fear. I HATE that my bladder is so prone to infection. It so sucks. I mean if I was going to the toilet even 4 times a day with diarrhea I would have a constant UTI. That with the IC I think I would kill myself. When my IC was at it's worst( I suffered severely for three years straight) I prayed every night to not wake up. It was pure hell. I had three years of constant suffering. Then I was put on an antibiotic for 6 weeks( keflex) due to a UTI I could not get rid of, had it for almost 5 months. At the time I was doing those bladder infusions and the catheter was what caused that nasty UTI. Well after that I was kept on the low dose antibiotic for 4 and half years. It was the ONLY thing that helped my IC and prevent the UTI's. Last October I had that MRE of the small bowel and got nasty diarreha from the stuff you have to drink. The stuff inflammed my bladder so bad and yep, got another UTI! This time though the keflex did not work anymore. So I was put on Augmentin. It took me 4 weeks of the augmentin to get rid of the infection and calm down my bladder. Now I am on the augmentin low dose. I am sure all these antibiotics are messing up my intestines though, but do not know what else to do.. I cannot even fathom going back to getting constant UTI's and IC hell....

Thanks for the info Cat. I hope you are doing well.

Hi Ihurt, this is a longshot for sure, but I remember reading about this a few years ago, and it interested me because I also get recurrent UTIs (not on the scale you do, and I don't have IC). Scientists can actually make you a new bladder now out of your stem cells. Here's an article:

http://www.thedailybeast.com/newsweek/2010/12/07/future-of-medicine-growing-new-organs.html

And going back to the diarrhea thing, heck in remission I used to go 10 times a day sometimes before I discovered psyllium husks. During one of my worst flares, I counted my bathroom trips. I got really exhausted and delirious so I lost count around 30, but in total I think I went about 35 times in a 24 hour period. But I would still honestly take that over IC, it sounds just horrible. I hate UTIs and I really feel for you, it must be so awful. Sending you a big hug!

 

[Techyboy]

I had one. It helped. I did barf poop after though...

 

[Ihurt]

You barfed poop?? That had to be awful.. I mean they usually infuse the stool in the lower colon... How did you barf it up?? That is so awful, I am so sorry that happened to you....





=Techyboy;619606]I had one. It helped. I did barf poop after though...[/QUOTE]

 

[Techyboy]

I have no idea. It smelled worse than it tasted. I went through about a bottle of mouthwash after.

 

[Ihurt]

I bet! I would have too... sorry you went through that!!

I have no idea. It smelled worse than it tasted. I went through about a bottle of mouthwash after.