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Fecal Transplant - I took the plunge! PART II

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Ulcerative Colitis
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Posted 11/23/2009 3:57 PM (GMT 0)
I am a little more than 2 weeks since my FT. I am glad the protocol was outlined better as I was certainly winging it. I have improved to 1-2 BMs in the morning with no mucous or blood - pretty normal, more normal than I can remember in spite of not watching what I ingested over the weekend - game day snack food. If I regress, I may do a 3 day treatment with a better understanding of protocol and knowing where I can improve what I did - I used municipal tap water with treatment, and the diet - fasting info. The Walgreens and Rite Aid enema bottles come with saline in them which I will probably use if I do it again and it seems worth a try for anybody.
Posted 11/23/2009 9:52 PM (GMT 0)
You're right Amygrace, you are supposed to do colon washout with home infusion.
Cheers
Posted 11/24/2009 1:47 AM (GMT 0)
I don't think those drug store enema bottles contain saline- I believe they contain a laxative.  Obtaining sufficient saline (different from the kind used for washing out eyes, contacts etc) required me to get a prescription- maybe it is used by drug addicts or something.  But my alternative MD whipped me off one right way.
Posted 11/24/2009 2:04 AM (GMT 0)
Well, anyone have any idea what a good mixture for the saline solution is. It's salt and distilled water.... don't need a prescription just a recipe.

Found this: You can make a homemade saline solution by adding 2 teaspoons of sea salt to a half a litre quart of lukewarm distilled water.
Posted 11/24/2009 12:02 PM (GMT 0)
Just a question was wondering if a enema syringe is the way to go without any mess , i have been looking for syringes that are like for needle just take the needle part of but not sure of a attachement for the catheter part or if there is a web site you can order of off. thanks ,

so happy my nerdy healthy brother got the clear for his stool test
Posted 11/24/2009 1:31 PM (GMT 0)
Probiotic, I think you are right it is a laxative but maybe in a saline solution. I guess I'll be making my own solution if needed. I like the syringe idea, but make sure you secure that tube well! I used a large syringe with a tube for eating many years ago after a broken jaw and did once have a hose blow out with the food at my office.
Posted 11/24/2009 1:50 PM (GMT 0)
i found this web site the catheter syringe is 60ml so im gonna need 3 of the gonna call to see if they have like a 300ml syringe, to do it all in one shoot seems less mess this way with syringe hopes it helps people out.

http://www.researchsupply.net/syringes.html

not sure about company haven't order yet , hope this helps someone, scroll at bottom of page
Posted 11/24/2009 10:14 PM (GMT 0)
Hey all, so my tentative plan is to do a 5 day run over winter break in December, but I had another plan to do a 2 week "elemental diet" going off of a liquid diet recommended to me by a GI I saw. Should I not do those simultaneously for lack of food for the bacteria? Or if it isn't a problem would a prebiotic supplement be beneficial?

Thanks,

-Jesse
Posted 11/24/2009 10:36 PM (GMT 0)
Probiotic's post about this causing a flare is all I need to hear. There's no way I'll got through this procedure if I think there's a chance I'll get worse...thanks, Probiotic, for sharing
Posted 11/25/2009 2:54 AM (GMT 0)
Hi Jesse

 

Dr Borody recommends a low fibre diet for 2 weeks prior to commencing the infusions.  Maybe that would be a better time to do your liquid diet.  The FT treatment protocol requires you to follow a high fibre diet once you start the infusions, so a liquid diet would probably not be suitable at that time.

 

Good luck with it all!

 

amygrace

Posted 11/25/2009 4:10 AM (GMT 0)
I got a call from University of Chicago today about taking part in a focus group about this topic. I guess they must be considering doing some research, and want to know how patients would feel about this treatment.
Posted 11/25/2009 4:01 PM (GMT 0)
Dr J
That's awesome news. Who was the coordinator that called?
Posted 11/25/2009 4:57 PM (GMT 0)

The more I read the more I want to try this. I have considered this for several years now but never had the guts to try it. Thanks to amygrace I might now start putting together a plan.

Please keep the info coming.

Posted 11/25/2009 5:46 PM (GMT 0)
Finally ran across some people using a teaspoon of psyllium husk in the solution too. I was wondering if it could be used as thickening agent. Would make it easier on retention. I will be adding this over the weekend to see what it does.
Posted 11/25/2009 6:03 PM (GMT 0)
Dr. A...I'd guess that the psyllium husk used in the enema would need to be a very fine powder (and not coarse husk) so as not to irritate the colon?

Also, I'm also not sure if using psyllium husk would have an effect on how well the bacteria from the fecal transplant is absorbed -- given that a lot of these psyllium supplements have a disclaimer that they may interfere with the efficacy of meds. Maybe using just a small amount would be enough to thicken it but not interfere with the absorption.
Posted 11/25/2009 6:13 PM (GMT 0)

Rio in Maryland said...
Dr. A...I'd guess that the psyllium husk used in the enema would need to be a very fine powder (and not coarse husk) so as not to irritate the colon?

Also, I'm also not sure if using psyllium husk would have an effect on how well the bacteria from the fecal transplant is absorbed -- given that a lot of these psyllium supplements have a disclaimer that they may interfere with the efficacy of meds. Maybe using just a small amount would be enough to thicken it but not interfere with the absorption.

Yeah I was thinking of the powdered stuff I used to use. I'll probably use just a pinch or two and see what it does. I remember that stuff thickening up pretty quick. LOL, just at walmart and I swear they only carry 10 lb bottles full of this stuff. I had a bottle of this and a couple of fleet enemas to empty out and use the bottle. I bet the lady at register was thinking... "This guy is serious"

Back on the saline solution... to get .9 nacl solution, its gonna take 1 1/2 tsp salt per liter water. 6 g salt = 1 teaspoon. Think that's right anyway. This makes much more sense after looking into it.
Posted 11/25/2009 10:10 PM (GMT 0)
Any scientific data on the length of time it takes for the anaerobic bacteria in the stool to start depleting, and how long it would take for a significant amount of the beneficial ones to parish entirely. I am guessing that it is important to be quick in getting the enema prepared and stool back inside as quickly as possible.
Posted 11/27/2009 12:34 AM (GMT 0)
I don't have any scientific data. My gut feeling told me that I should use the poo as quickly as possible. I would say it took less than 5 minutes from the time my granddaughter pooed to the time I put the mixture inside my rectum. Perhaps that's why her poo worked so well.

Granddaughter went in diaper. (She made poo noise.)
Daughter took off diaper and gave it to me.
I took the diaper into bathroom.
Scoped up the poo with a spoon.
Put the poo into a plastic container.
Added a bit of warm water from faucet.
Stirred mixture with spoon.
Used a syringe to pull up the mixture into it.
Put mixture into rectum with syringe.
Used the same syringe to pull up more mixture into it.
Put remaining mixture into rectum.

The procedure was quick--definitely less than 5 minutes.
Posted 11/27/2009 11:32 PM (GMT 0)
Made up my saline solution this morning. You can actually use a 16 oz empty water bottle which is 500 ml, add distilled water and .75 teaspoons sea salt for the proper saline solution. Ideally its 504 ml to 3/4 tspn, but the water bottle works out great. Don't know if it made a difference but my mixture seemed to come out much better and a little thicker for some reason. I think using the fleet enema bottles are easier since their tips are bigger. No poo flying across room. Did warm saline water and poo in ziplock baggie and mixed there, cut tiny piece off corner of baggie and added it into fleet bottle. Seems to get easier each time. Used fresh sample immediately.
Posted 11/28/2009 4:00 AM (GMT 0)
OK. I hear lots of things about the process but what I really need to hear is how everyone who is doing this is feeling. My UC has ruined my life and this might add a glimmer of hope.
Posted Yesterday 12:54 AM (GMT 0)
Hi Jeff,

Fecal transplantation put my second flare--a severe flare that was no longer responding to prednisone--immediately into remission. Unfortunately, I had to be on antibiotics a few times after that, and I got a third flare two years after the second flare. Probiotics and diet put the third flare into remission. However, it took one and a half months to do so.

If I ever get a flare again, which is possible considering that I keep having to take antibiotics, then I plan to do fecal transplantation again.

After doing fecal transplantation, my BMs returned to the way they were for the first 20 some odd years of my life. They are very healthy BMs--not thin, not smelly, not small, not hard. They still are, even after the third flare.

I also no longer have IBS as long as I stay away from HFCS, foods high in fructose, and artificial sweeteners.

Fecal transplantation is definitely worth trying. I don't like to give people too much hope though. I've been on antibiotics most my life; so it made sense to me to do fecal transplantation. I've heard several people saying it "cured" them, although I don't think it could have even if they think it did. There is no cure for UC. I've heard several people say it did nothing. I've heard one person say they flared after doing it.
Posted Yesterday 1:42 AM (GMT 0)

Hello Everyone,

Its been awhile since I posted last on this topic, but I was actively involved at the beginning of this thread. I too tried this experiement and although I had high hopes it would work, it through me into a flare that I havent experienced in awhile. I acutally ended up worse after the completion than I did before. Now I didnt realize the true effects until I completed a 7 day trial. I felt good for the most part while doing it, but it was after i was done that I got worse. Now, I want everyone to know who considered trying it that I still havent lost hope. I can think of a few reasons why it didnt work, but I wont attempt it again for a little while. First, I didnt use antibiotics or an enema flush prior to starting b/c I was already flaring as a result of using antibiotics for 1.5 months prior. I am also taking a 5- ASA drug that could contribute to killing the bacteria, third I didnt do a diet prep as suggested.

So at this point i am nursing a flare with diet, which has been beneficial, just hard to do around the holidays. I wish everyone luck with this and if anyone ever hears of a doc willing to perform this or a clinical trial, let us know.

Posted 12/1/2009 2:43 AM (GMT 0)
Hi all,
I am really interested in this forum and am glad to share a little positive input. After a trip to india in 2005 I returned with a different bowel function. I was diagnosed a year later with UC. It has been quite rough at times, as you all well know. I have found great help with Metamucil, which my Gastroenterologist never even mentioned. I have been on Colazal ever since I was diagnosed. 3 pills 3 times a day.

I have been doing pretty well for the last year, but this last month has been rough. I can feel the effects of the blood loss and it is most disheartening. Of course, I have not been having problems, therefore it has been a good while since I have been on this forum. I am so glad to see glimmers of hope, and to be honest, this technique really makes sense. My mom read this article that I am attaching and I hope that it brings much hope to thers as well. God bless and Merry Christmas.
Posted 12/6/2009 1:55 PM (GMT 0)
has anyone read the book FIBER MENACE by Konstantin Monastyrsky
he talk about fecal transplant
www.fibermenace.com
Posted 12/6/2009 6:10 PM (GMT 0)
This would have been a lot better study if they had a control or double blind approach. One group uses simple saline enema and another, fecal solution. It's my opinion that the results would have been the same for both groups.

The more I research this the more I understand why this treatment would work for C. Diff. but not UC because, in UC, there is a problem with the immune system not wanting to shut off attacking the colon. I don't see fecal transplant stopping this from happening. It's possible, however, that one could use this method to continuously provide the colon with something the immune system could attack until the immune system backs off for some other reason. Similar to probiotics or whipworms approach. It would not, however, resolve the underlying cause of the immune system disorder.

(Six people with UC for less than 5 years underwent this treatment for 5 days and by 4 months later all other UC medications had been ceased). This means little to me because 4 months is a long time for one's first flare for having UC less than 5 years; I contend the immune system would have subsided without the treatment.

(1-13 years post-HPI...) also means nothing to me because my first flare was cleared up in several weeks and I ceased all medications for 4 years; I've read that many only have one flare and that's it...1-13

I'm just offering another person's perspective on this. As a scientist/engineer by profession, I would be reckless to draw any conclusions from that study.
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