Fecal transplant

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fruitgirl
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Date Joined Feb 2009
Total Posts : 6915
   Posted 2/22/2009 4:40 PM (GMT -6)   
I see that some people on here have tried fecal transplant.  I have to admit this sounds interesting and seems to be an effective way to get the bacteria in the digestive system back to normal.  If you've had one, can you tell me about your experience with it?  Mainly,
1.  How bad were your symptoms when you decided to do it?
2.  How was it done?  I read that the donor has to have testing done and wonder what all that involves.  Did it require a hospital stay?
3.  Did your insurance cover it?
4.  How quickly did you notice an effect?
5.  Were you able to decrease your meds afterward?
6.  Do you think there has been a lasting effect?
 
Anything else you'd like to share would be welcome, too!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


mtgman
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Date Joined Mar 2005
Total Posts : 1285
   Posted 2/22/2009 9:25 PM (GMT -6)   
any other background info on this procedure would be helpful also!! thanks!

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 10379
   Posted 2/22/2009 10:07 PM (GMT -6)   

I've never heard about anyone getting it done by a doctor. I do remember people posting in threads in the past where they had their brother or a relative donate and they used that for the enema.

I didn't know this was a medical procedure that doctors would consider.


Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


subdued
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Date Joined Dec 2008
Total Posts : 3231
   Posted 2/22/2009 10:51 PM (GMT -6)   
Yes. This is a medical procedure. However, it is so new that as far as I know it's being done primarily in Australia. I think there are some doctors trying it out in Canada, but I'm not sure.

For more info, see http://en.wikipedia.org/wiki/Fecal_bacteriotherapy.

I could not afford to have it done in Australia. Nor did I have the time or money. So I did it at home.

I have heard of two other people doing it at home like me. One said that it "cured" him. Another said it did nothing.

It put me immediately into remission. However, I got another flare about two years later after having taken antibiotics three times in the past year for a bladder infection. (Each time the doctor gave me a stronger antibiotic than the one before.)

1. How bad were your symptoms when you decided to do it?

At the time, I was on 20mgs of Prednisone. Every time I reduced my dosage from 25mgs to 20mgs, the bleeding would come back. So I was bleeding at the time. I was getting desperate. I wanted to taper off the medicine, not increase it back to 25mgs, because I was reaching the three-month milestone of being on Prednisone.

2. How was it done? I read that the donor has to have testing done and wonder what all that involves. Did it require a hospital stay?

I did it myself at home. No hospital stay was necessary. I scoped up my granddaughter's feces from her diaper, mixed it with a bit of warm water, put it in a syringe, and put it up my butt. If you want to know what it feels like, take a Proboitic pill, open it up, mix the powder with warm water, put it in a syringe (mine has a long tip), and put it up the butt.

3. Did your insurance cover it?

No.

4. How quickly did you notice an effect?

It slowed down my having to go to the bathroom right away. I did it three times (about 1 1/2 to 2 syringes worth each time). Once a day for three days. I stopped bleeding after the third day. BTW, you are supposed to do it about five to ten times. My daughter was visiting for an extended weekend; so three days was all I had.

5. Were you able to decrease your meds afterward?

Yes. I could have stopped the Prednisone cold turkey if it were not for the side effects of tapering too quickly. My joints in my hands hurt and my joints popped and cracked really loudly, because I got off the Prednisone too fast (in about 9 days). But the bleeding never came back. I should have taken at least four weeks to get off the Prednisone, but I was scared of being on it more than three months.

6. Do you think there has been a lasting effect?

Yes. My bowel movements returned to what they looked like before I had taken all those antibiotics in my 30s. I have very healthy bowel movements when I eat right. However, I did get another flare from having taken antibiotics; so it did not "cure" me. Also, my bowel movements can easily turn mushy if I eat something wrong (too much chocolate or fructose).

If my daughter has another baby, I'm going to do it again.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2041
   Posted 2/22/2009 11:00 PM (GMT -6)   
How old was she? I have been waiting for my little boys feces to get good and populated. They have started to smell and developed form now, so I may be able to give this a go now. He is 6 months old now.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/23/2009 2:04 AM (GMT -6)   
http://www.healingwell.com/community/default.aspx?f=38&m=1048309

Here is a good past thread on the subject.


There are some articles (studies) attached.
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
Left-sided colitis diagnosed at age 28 in 2001
3.5mg Low Dose Naltrexone, Prednisone 15mg and tapering,Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic Just ordered VSL $$$$$and Udo's Oil when I remember:(


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/23/2009 2:45 AM (GMT -6)   
She was about six months old. She was pooing very little. I was worried that it wouldn't be enough, but apparently it was.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2787
   Posted 2/23/2009 9:15 AM (GMT -6)   
I am gearing up to try this too. There is a longish thread on this topic started by MAD, who used it to get in remission and posted some detail there. The thread was started less than a couple months ago. I don't have a link handy, but if you scroll back at old threads and find the one started by MAD you'll see it. Here is the link to some publications associated with the Australian clinic of Dr. Borody which pioneered the use of this therapy, for c. difficile, IBS and also UC. Drill down the list and you can view the full texts of several such papers amid various other topics. http://www.cdd.com.au/html/expertise/publications.html .. Also check out their other site http://www.probiotictherapy.com.au/physicians/diseases_4.html


Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Currently Remicade and lots of probiotics, tapering pred again, maybe surgery this year
 
 

Post Edited (Probiotic) : 2/23/2009 11:33:58 AM (GMT-7)


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/23/2009 3:16 PM (GMT -6)   
Thanks Probiotic for the links. They are very informative.

I also suffer from IBS. I used to have tons of bloating, gas, and diarrhea. I no longer have these as long as I take Lactaid whenever I have lactose and stay away from foods and beverages high in fructose. I'm sure doing fecal transplantation and taking Probiotics has helped too.

I hadn't realized that the less inflamed the colon is, the greater the chance the fecal transplantation will take hold. I had been on Prednisone for awhile; so the inflammation wasn't that bad when I did the fecal transplantation. I just had one ulcer in the left side of my colon near my rectum. My main problem was that it would get worse every time I reduced the Prednisone. I guess this is why I only needed three treatments with a very small amount of feces for the fecal transplantation to work.

I'm also a prime candidate for fecal transplantation. I had been on antibiotics off and on for many years. I was even on them for two years straight. My colon must have been very strong to have been able to put up with such abuse for many years.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6915
   Posted 2/23/2009 3:54 PM (GMT -6)   
Here's the thread that MAD started
http://www.healingwell.com/community/default.aspx?f=38&p=1&m=1362068

It had a lot of good info. Thanks, Probiotic for pointing me to it. Please let us know when you do the transplant and how it works. Have you started all of the testing yet?

I am so new to this I will definitely give the "standardized" meds a try for a while longer to see what happens. If the 5-ASAs work and keep me in remission for long periods, I imagine I'd just stick with those. However, the idea of using immune suppressents and biologics is a bit scary IMO, so if it's looking like I'd have to use those, I'll probably consider fecal transplant. This has been really interesting reading about it!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2041
   Posted 2/23/2009 5:17 PM (GMT -6)   
My little boy can fill up a diaper every couple of days, lol.


I am gonna follow this routine. Found it on curezone and have been storing the link for awhile. I don't agree with the "it will cure your IBD" statement, but it gives me something to follow that seems fairly safe.

"What is Fecal Colon Flora Replacement, What is Fecal Enema?
To do fecal enema, you need a fresh feces from a very healthy person. To avoid getting any unwanted parasites or any other disease, you choose a feces from a very healthy, unvaccinated, breastfed baby.

You find anyone who has a 3 - 18 months old breastfed baby. You take diapers with fresh feces. Color of feces must be yellow, it must not be green, cause green color of feces indicates lack of good bowel bacteria. (Unless child was drinking freshly pressed wheat grass juice, or some other food of strong green color, green color of feces always indicates lack of good bowel bacteria. Yellow (or yellow-brown if child has eaten meat) color indicates healthy feces.) You need fresh feces (not older then 12 hours). You can refrigerate diapers with fresh feces, and use it the next day, but the best is if you can get a hold of fresh diapers.

You mix fresh feces with enema water (you can also filter it before use, of baby has eaten other foods then mother milk.) You use that water as the last enema water, when doing enema. Once you get that water inside of you, you try to keep it there as long as possible.

That is all. You will introduce widest possible range of good bacteria into the colon, and it will cure inflammatory bowel disease.

If it doesn't work with one baby, try to find another one. One will work!" http://curezone.com/forums/am.asp?i=57771&s=3#i41
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2787
   Posted 2/23/2009 6:19 PM (GMT -6)   
fruitgirl said...
 Please let us know when you do the transplant and how it works. Have you started all of the testing yet?

Hi Fruitgirl- I'll report back.  As far as testing goes... I am gearing up on this.  Trying to get prices of the tests- which look to be horrendous since they would not be covered by insurance for my donor(s), if I don't skimp on any.  That is the only barrier for me now- much as I hate enemas (my retention time is typically about a minute or two, lol, whereas I will need to hold these in all night I'd imagine), the ick factor is irrelevant to me- just putting poop into a colon that is normally full of poop anyway, after all. (Collecting it up and mixing it up with saline in a dedicated blender of course is bound to be smelly!).  Oh, as far as the Australian protocol goes, it involves taking antibiotics beforehand, which I will definitely NOT do.  Just like subdued, my UC seems to have come on the heels of (and relapsed as well) in response to courses of antibiotics.  If one day I lose my colon to this ridiculous disease, I wonder if perhaps this could be an effective cure for chronic pouchitis? 
 
 
 
 
 
 


Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Currently Remicade and lots of probiotics, tapering pred again, maybe surgery this year
 
 


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/24/2009 7:30 AM (GMT -6)   
Dr-A,
Is/was your baby exclusively breastfeed or do you use formula sometimes? Are you still breastfeeding now? Also, does your little guy ever have green poo? Mine does. Lately more often than not. So now I am a little worried about his tummy bacteria. Please continue to post your result. I am excited to hear more! I am still too scared to do it. I admit it I am just scared to death but I think if I read enough posts I should eventually be able to try it. I wish you the very best.


Melissa
Female Currently Breastfeeding (All my meds are approved by the doc. for breastfeeding but they still make me nervous)
Left-sided colitis diagnosed at age 28 in 2001
3.5mg Low Dose Naltrexone, Prednisone 15mg and tapering,Zoloft,Prenatal vitamins,Juice Plus,Expecta DHA,Emergen C,Probotic Just ordered VSL $$$$$and Udo's Oil when I remember:(


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2041
   Posted 2/24/2009 8:15 AM (GMT -6)   
Yeah, he is still on breastmilk. He will continue to get it for a good while. Never had any antibiotics, never had a vaccination. Wife hasn't had any antibiotics either during this time. Poo isn't green, but it isn't yellow. Don't know what that's all about. I missed yesterdays big stinky one, so it'll be another day or so. I wonder how long it would store for?
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2041
   Posted 3/2/2009 8:41 AM (GMT -6)   
So, I did the first super charged probiotic last night. Had a good diaper come up that I just couldn't waste. After a little thought I took a plastic spoon, small ziplock baggie with one of the corners cut, large ziplock baggie to put the smaller one in when done, distilled water, two empty hydrocort enema bottles, one stinky diaper. opened diaper up and spooned some of it into the baggie. Put some hot water in the sink to warm up the distilled water I was using. Did a flush of about 180 ml warm water using the bottles. Used the pooinbaggie frosting method to get it into the empty hydrocort bottle. Filled in bottom 1/8th with it, and rest with warm water. Inserted in the hands and knees position, went down to left side 5 min, feet up against wall 5 min, right side and rested.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA

Post Edited (Dr-A) : 3/2/2009 9:32:29 AM (GMT-7)


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10379
   Posted 3/2/2009 9:46 AM (GMT -6)   
You guys are funny. I need to find a baby. idea
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 188
   Posted 3/2/2009 1:06 PM (GMT -6)   
Hi there more questions I'm afraid,
1. Does it have to be a breastfed baby my baby is 18months old,I had to stop breastfeeding him when he was a month old because I started on azathriopine he now has formula for older babies up to two years,too bottles a day and regular meals he does not have cows milk yet.
2.Does it have to be done with distilled water or can it be just warm water thats been boiled and cooled
3. If it has to be distilled where would you get it from a chemist or something.
THanks

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6915
   Posted 3/2/2009 1:15 PM (GMT -6)   
Thanks for the update, Dr-A. Here's hoping that it works for you! :)

Where do you live, sicklygirl? If it's close enough, you can come "borrow" a diaper! :) He's not breastfed, though. I lost my supply at the end of November/first of December, probably b/c of all the diarrhea I was having.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2041
   Posted 3/2/2009 2:24 PM (GMT -6)   
I get the distilled water from Krogers for a little over a dollar for a gallon jug. Should be able to get that at any grocery store. I have used tap before but noticed increased irritation. I don't think there are any specific "set" rules of what to actually use or do, so I am just going try a few different methods and see what helps most. I have no idea how much liquid to use vs amount of stool. I think I'll try and decrease liquid since I had to get up in middle of night to go. Biggest thing was figuring out how to get the poo from the diaper into that little bottle without making a mess, lol. I had a vinyl glove too, but didn't even have to use it. I am gonna save some $$ on not buying probiotics this month too, lol.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/2/2009 2:30 PM (GMT -6)   
Annelise.G said...
Hi there more questions I'm afraid,
1. Does it have to be a breastfed baby my baby is 18months old,I had to stop breastfeeding him when he was a month old because I started on azathriopine he now has formula for older babies up to two years,too bottles a day and regular meals he does not have cows milk yet.
2.Does it have to be done with distilled water or can it be just warm water thats been boiled and cooled
3. If it has to be distilled where would you get it from a chemist or something.
THanks


No. The baby doesn't have to be breast feeding. I think the poo of a breastfed baby has a better consistency though for fecal transplantation. It's not as firm; so it is easier to work with. I didn't need to break down the poo. It was already a gooey substance--perfect for doing the fecal transplantation.

I didn't use distilled water. I just used warm water from the facet.

One thing though: I used the feces right away, before the bacteria had a chance to die.

Good luck! I hope it works for you.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10379
   Posted 3/2/2009 3:50 PM (GMT -6)   
fruitgirl said...
Thanks for the update, Dr-A. Here's hoping that it works for you! :)

Where do you live, sicklygirl? If it's close enough, you can come "borrow" a diaper! :) He's not breastfed, though. I lost my supply at the end of November/first of December, probably b/c of all the diarrhea I was having.

You are too sweet. I can't believe I would WANT a used diaper. turn Kind of silly to think about...
 
I am in NY.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6915
   Posted 3/2/2009 5:55 PM (GMT -6)   
I'm in WA. A bit too far, I think! :) But yeah, it's silly to think about wanting (and offering!) a used diaper! Since the Asacol/Rowasa combo seems to be working, I doubt I'll try fecal transplantation right now. However, if they quit working, I think I might try it before I'd move to pred or 6mp.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 188
   Posted 3/2/2009 6:29 PM (GMT -6)   
Dear subdued,thanks for your reply,I think cause he is my baby the whole idea dosent seems so icky,if you know what I mean i bet you felt the same with your grandaugher,and his poo is always a good consistency cause he eats a lot of fruit,! one thing though I think I'm starting to flare a bit bad now,and I think someone hear said it works better if your less inflammed,but then again,I've had UC about three years now and no meds have managed to bring it under control, the Azathioprine is just about keeping the worst symptoms at bay but for how much longer I don't know,I just want to try everything possible before the old chop
Thanks anyway for the info I think I'm gonna try it take care

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10379
   Posted 3/2/2009 6:31 PM (GMT -6)   
Fruitgirl, we are in the same boat. I use Canasa and Asacol and thankfully I am in pretty good shape right now. If I were having a bad flare, I would definitely give fecal transplantation a try before using drugs with bad side effects. It's a little bit gross but it's worth a shot. My sister is having a baby in a few months so I might have a shot at some baby poops if it becomes necessary but I am hoping I remain in decent shape. WA to NY is a long trip for a dirty diaper tongue   Thank you for offering to help.
 
Do you use Rowesa enemas or suppositories?


Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2041
   Posted 3/2/2009 6:33 PM (GMT -6)   
Just another thought of this too. Your tap probably contains chlorine, among alot of other stuff. Gonna have some affect on the bacteria. Don't know how much.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA

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