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Fecal Transplant - I took the plunge! PART II

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Ulcerative Colitis
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Posted 11/18/2009 12:27 PM (GMT 0)
Please continue this discussion on this post please  :-)

PART I <--clickable link to the first part of this discussion

 

Posted 11/18/2009 1:33 PM (GMT 0)
Did my second one with my little boy. I initially did him back in the early part of this year several times. Really no big difference. Still didn't notice as much difference as I did with the wife. I did notice my poo smelled like his for two days following, so there was some change in bacteria. Will go with the wifes again next. Not as much extra gas with using his.


How much poo per water are you guys using? I posted on this awhile back but couldn't get anyone to jump on the wagon, lol. Last go round I just put the poo straight into the ziplock with the distilled water, mixed it up and let it set for 15 min or so in lukewarm water. Cut corner in bag and ran into my bottle, then squirted from that bottle into another one so I would be assured not to get things flying across the room again, lol. Don't have strainer yet.
Posted 11/18/2009 8:45 PM (GMT 0)
I actually used very, very little poo. I was surprised at how little six-month-old babies go. The mixture was about half poo, half water. I stirred it in a plastic cup. The poo, which was a gooey substance, dissolved quite well with the water. There was enough mixture to fill the syringe about two times. I was worried that I didn't have enough poo, but it must have been enough. The results were amazing.
Posted 11/19/2009 1:50 AM (GMT 0)

Hi

I have the treatment protocol from Dr Barody, and they recommend roughly equal amounts of poo and normal saline.  They also recommend using the solution immediately after blending it, within 10 minutes preferably.  Administer the solution while lying on your left side, in the foetal position, with the lower half of your body slightly elevated if possible. Once finished, remain on your left side for 10 minutes, then your back, then your right side, then your tummy, 10 minutes each position.

They also advise a low fibre diet for 2 weeks prior to the transplant.  The day before the transplants commence, clear fluids, and the day you commence transplants switch to a high fibre diet.

I know that some people here have successfully used infant poo. Dr Barody does however recommend using adult poo if possible because of the greater diversity of bacteria available.

Hope this helps!

amygrace 



Post Edited (amygrace) : 11/18/2009 7:07:28 PM (GMT-7)

Posted 11/19/2009 3:35 AM (GMT 0)
amygrace, thanks for your post. I called Borody's center in Australia, sent them an email, and all my information over a week ago, but so far have not heard from them. I understand they send you a bag for the procedure. Is that right? Where do you get the saline solution? Is there anything else I should know before attempting it that is not included in your post? MY son's j pouch surgery is scheduled already, but I would like to try it just to make sure I did everything I could before it. Can you do the procedure if you are in a flair? Did they say anything about risk of getting infections from the other person and how to avoid it? Thanks a lot! Please, let me know how you feel after it. God bless!
Posted 11/19/2009 6:17 AM (GMT 0)

Hi Guila

My GI doc corresponded with Dr Barody on my behalf, and yes, they did send out some enema delivery kits, which make the whole process  alot easier!

I use the saline solution that I use for my contact lenses.  Costs about $3AU for 500ml bottle.  Available most supermarkets and pharmacies.

If they send you an enema kit, I am sure you will also receive a copy of the infusion procedure. But to answer your question, the potential donor must have a healthy bm every day with no history of bowel problems, and not be on any medications that may interfere with viability (eg:antibiotics).  Your doctor can arrange for the donor's stool to be lab analysed - only takes a couple of days and rules out any potential infections or parasites. Donor should also have a screening blood test for transmissible diseases. (alot of people don't bother with these aspects if they know their donor well.  I felt more confident having the tests done just to be sure - I sure don't need any extra little parasites in my intestines!!)

Procedure:  collect stool in appropriate container (ice cream container, potty etc) and mix in a blender for approx 30 secs with 100-400ml saline (enough to make the mixture pourable).  Follow instructions enclosed with enema bag for administration (basically the same as I outlined in my earlier post).  Allow 5-10 minutes for the infusion.  Repeat procedure for 5-10 days.

I believe it is OK to do in a flare (to be honest, if you're not flaring, you probably wouldn't consider doing this!!).  Probably a question better directed to someone like Dr Barody or his staff - perhaps by phone rather than email.  Have you run the idea past your son's doctor?  I expect alot of docs wouldn't be encouraging, but mine has been very supportive and open-minded, and it does make me feel more confident having a medico on board!

I am  not ready to post a full update on my experience as I have only done three infusions. I had a sigmoidoscopy last week which showed moderately active disease which my doc wasn't happy with as I have been on mega steroids and should have been less inflamed.  I was trying to taper off them and beginning to get 'flare symptoms' again when i started this treatment.  So far it has stopped it in its tracks.  No diarrhea, no blood.  I don't want to jinx myself, but I am cautiously optomistic. My next step was remicade, and I will be very happy if I can avoid going down that path!

All the best,

amygrace

Posted 11/19/2009 8:05 AM (GMT 0)
Hi all, quick question about the process- if you do this for 5 days in a row, how do you blend the stool? I'm a little weirded out by washing a foul blender in my house (though then again I am shooting someone else's poo up my butt) and it definitely doesn't seem hygienic. What's the procedure for that?

Thanks,

-Jesse
Posted 11/19/2009 8:29 AM (GMT 0)
Thanks, amygrace. What is the size of the enema? (I mean, how many "cups") altogether? Are you able to hold it even if you are in a flare?
Posted 11/19/2009 8:51 AM (GMT 0)

Hi guys

I use what we call a 'stab mixer' here, or bamix.  I don't know what the equivalent would be called in the States.  It is an electronic gadget, basically cylindrical in shape, with a blade at the bottom - you might use it to whip cream, puree soups.  It costs about $40.  I just wash all my equipment in warm soapy water afterwards.  You could always sit it in some boiling water if you wanted to be very sterile about it.  I will be throwing my mixer out when I am done with it!!

I have been using between 150 and 200 gm poo, and 200ml saline, so it makes about 400ml of solution, or just under 2 cups.  I think I might drop it back a bit for my next infusion, as its rather alot to hold!  I have been doing mine at night time, so I do it in the bath-tub, then run water in to clean out any mess that's been made, then fill the bath with lots soapy fragrant water and lie there for about an hour until I feel clean!  Then I basically go straight to bed, and have not had a problem holding the enema overnight.  I fortunately wasn't at the stage where I had urgent diahroea when I started this, so holding the enema has been fairly easy for me.  Guila, if your son is having many bms per day, try to time it for when he is most settled.  Night time works well for me personally, and I can't help but think it would stay in better if you are not walking around and trying to get other things done.  It really depends I guess on when the donor makes their deposit! My donor happens to be a night time poo-er! Apparently the freshness of the poo is quite important.

They do recommend holding it for 6 hours, but I have read that even less than that is beneficial.  I do believe it helps if you can keep your bottom half elevated for a period of time after administering the enema.  Give gravity a bit of a hand!

Also, be prepared for the process to not go perfectly the first couple of times.  It really is a bit of trial and error, which can get pretty messy and unpleasant, but persevere, and you will get the hang of it.  For the first time in 3 months, I passed an almost normal bm today!  It's worth the effort!

Good luck!

 

Posted 11/19/2009 3:07 PM (GMT 0)
What's the purpose of the saline? I guess vs straight up distilled water....
Posted 11/20/2009 3:00 AM (GMT 0)

Dr A,

To be honest, I don't know what difference it makes.  But Dr Barody has been doing this for a long time, and done alot of research into it, and if he recommends saline solution, that's what I am going to use!!

Cheers,

amygrace

Posted 11/20/2009 6:11 AM (GMT 0)
Dr-A - my guess is because saline tends to cause less irritation on internal tissues than regular water. That's why they use saline to flush your your sinuses, etc.
Posted 11/20/2009 7:18 AM (GMT 0)
Thanks, I guess I'll have to pick up a cheap blender for this one. I wonder a lot about the viability of the bacteria; what foods are best to eat in order to support the flora right away? Or would it be beneficial to fast/eat only certain things that feed the bacteria without stressing your digestive system? What about FOS or other "pre-biotics" that are marketed as superfood for good flora? Lastly, would it be beneficial to be all cleared out before hand, as with a colonoscopy?

I want to give these guys the best chance I can to take over my intestines.

Thanks for your thoughts, I'm not even a bio major so my understanding of the human body and its workings is pretty limited.

-Jesse

Post Edited (IChaseFrisbees) : 11/20/2009 1:56:40 AM (GMT-7)

Posted 11/20/2009 9:07 AM (GMT 0)
Jesse

For some patients, I believe that Dr Barody recommends antibiotic treatment prior to the transplants, and a lavage (basically a colonoscopy prep, I think).  It wasn't recommended for me, and I have been having immediate and dramatic results regardless. 

The only diet changes he mentioned were being on a low fibre diet for 2 weeks prior, then fasting the day before, then switching to a high fibre diet the day of the first transplant.

Hope this helps. and good luck!

amygrace

 

Posted 11/20/2009 1:45 PM (GMT 0)

LD said...
Dr-A - my guess is because saline tends to cause less irritation on internal tissues than regular water. That's why they use saline to flush your your sinuses, etc.

Well, I don't do sig prep with fleet enemas because the saline irritates my colon. Salt over ulcers = no good, lol. Nurses told me to just use distilled water. Made huge difference. Didn't know if it served a purpose here or not.
Posted 11/22/2009 3:59 AM (GMT 0)

Hi All

Just a quick update.

I have now done 6 infusions, last one due today before I switch to a once weekly maintenance schedule while I continue to taper off my steroids.  Some of you might remember that I was starting to flare again as I tapered below 50mg pred.  Started infusions at that point. After my second infusion, no more blood.  After my fourth infusion,  reasonably normal solid bms, which I haven't seen for 3-4 months.  I feel better;  I have finally started putting weight back on (which is handy, as I am 26 weeks pregnant and weighed less than when I fell pregnant - and I only weighed 53kg when I started!).  I have now tapered down to 35mg pred, and am confident about continuing to wean myself off them.  Am not currently on any other maintenance meds, and am hopeful of staying off the 5ASA's all together, but will see how things go.

Hooray for Dr Barody and fecal transplants!!!

Hope everyone else who gives this a try gets the same great results.  The ickinesss factor is far outweighed by the joy of returning to a normal life!!

Will keep you posted on how things go once I stop the infusions....

amygrace

Posted 11/22/2009 4:33 AM (GMT 0)

Actually the saline is probably to prevent osmotic shock to the bacteria and to add liquid to the infusion. If the liquid is to weak like water it could cause osmotic schock, or even if too strong it may also cause this. The idea I believe is to try and somewhat match the electrolyte  concentration of the stool. If it is soft stool might be better just to use it directly if possible. You want the stool to coat the colon without killing the bacteria. They are also very senestive to air so do not over mix in a blender.

Old Mike


Post Edited (Old Mike) : 11/21/2009 9:37:49 PM (GMT-7)

Posted 11/22/2009 1:25 PM (GMT 0)
I've been reading these and want so bad to say this is sick, but it's logical. I might try it myself but I'm wondering how to ask the wife for her poop. I could rig the toilet so it doesn't flush but that wouldn't work more than once. I might have better luck with one of my daughters but my wife probably has the healthiest sample.

One procedure I was thinking was to clean the toilet bowl and rinse, mix salt in the bowl water to create a saline solution, have the doner drop the sample in toilet, use a hand mixer to blend everything in the bowl, take sample. Seems this woukd be less messy as you could use several flushes to rinse everythhing and it would all be contained within the bathroom. The doner woul not wipe I guess.

Amygrace,
What meds are you taking? Did this, alone, halt your flare and allow you to taper the prednisone?
Posted 11/22/2009 2:30 PM (GMT 0)
Burli: Not a good idea. You do not know what might be growing in the bowl, and it uses tap water. Don't use tap water due to residual chlorine, you do not want to kill the bacteria. The whole procedure may sound sick, but I can gurantee it is much better than a colectomy.
Some day they may have enteric coated poo pills, but not yet.

Old Mike
Posted 11/22/2009 2:42 PM (GMT 0)
It's really easy, you say "Honey I need your help with something. I think you may be able to help me with my UC, but I am going to need a small amount of your poo. Will you poo in a bag for me?" (Explain how some of us are trying this and its helping) Take your trash can beside the toilet and line it with a new bag and use it to collect. MY wife was so excited the other day she came into the living room all of a sudden holding up a bag and yelled "I'VE GOT POOP!" I hadn't even said anything about it, lol.
Posted 11/22/2009 3:45 PM (GMT 0)

I agree that the toilet bowl idea is not a good one.  Pooping into a bag or an ice-cream container, or a potty is much safer.

Burli, prior to this flare, my colitis was fairly well controlled with 4gm per day salofalk granules.  If I noticed things getting worse, I would add in nightly salofalk enemas, and when necessary, cortifoam enemas too.  This flare really knocked me around - I was hospitalised two times on IV steroids and fluids, needed an iron infusion because I'd lost so much blood.  Every time I tried to taper below 50mg prednisilone, I would start bleeding again.  I stopped taking the 5ASA's for two reasons - one, because I figured they weren't helping given that not even a high dose of steroids was not able to keep my symptoms at bay, and two, I did read somewhere that 5ASA's might hinder the fecal transplant procedure as they have some anti-bacterial effect.  Not sure about the validity of that, but since they didn't seem to be helping anyway, i didn't see any harm in stopping.  So to answer your question, no, i am not taking any other meds besides tapering off the pred (dropped to 30mg today!!).  I had started to flare again about 10 days ago when I dropped below 50mg, and the sigmoidoscopy I had last week showed there was still alot of inflammation and ulceration.  I started infusions three days later and had an immediate and significant response within a couple of days.

The next question I guess is its 'stickability' factor.  Will I remain symptom free now that I am not doing nightly infusions, and continuing taper off steroids??

I hope it works for you!!

Happy to answer any questions you might have.....

amygrace

Post Edited (amygrace) : 11/22/2009 8:53:38 PM (GMT-7)

Posted 11/22/2009 7:46 PM (GMT 0)
DrA, I can't see my wife doing what yours did. My plan is to have her read this post and see what she says.
Posted 11/22/2009 11:24 PM (GMT 0)
Great post.
I hope things keep working well for you Amygrace and everyone else using FTs. I may be joining you all shortly.
Comment/question: i think the suggestion in the protocol to fast the day before and drink only clear liquids is if one is doing the first infusion with a colonoscope, rather than at home with the enema bag??
All the best
Posted 11/23/2009 2:25 AM (GMT 0)
Very happy to see this has been helping some of you- have followed this for years. I just wanted to mention that earlier this year I tried it according to the the full Barody protocol- though I skipped the anti-biotics- and it flared me up right away, no question about it- so I stopped after 3 days.  Nothing suspicious in my wife's stool (I even spent around $1300 having her blood and stool tested)  but it just didn't seem to agree with my gut.  In hindsight I should have done smaller test infusions first with just a syringe full, but was so confident this would work I went whole hog right away with hanging enema bags full of poop and saline.  Maybe one day I'll try small syringe fulls and see if lower doses are more effective in my case.
Posted 11/23/2009 4:02 AM (GMT 0)

Hi chocolate_stains

The protocol appears to be the same for the home infusion procedure.  I was already on a very low fibre diet due to the flare, but I did two infusions before receiving a copy of the preparation instructions (I was pretty keen to get going!!).  So I didn't do the fasting the day before.

Probiotic - sorry to hear it didn't work for you.  Anyone who is willing to try this treatment deserves to get a good response to it!! I guess, like everything, what works for one person won't necessarily work for someone else....

amygrace

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