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My FT is a success...so far.

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Ulcerative Colitis
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Posted 4/24/2012 3:19 AM (GMT 0)
So, I dont want to throw water on the fire but I also have tried FT - a home protocol - and it did not seem to help me. I dont think it made things worse, however, usually once I am in remission from my yearly fall flare I will be fine until the following fall. But this year I am currently flaring....six months later.

I may still try again with another donor. I actually think the theory/science behind this treatment is very sound, based on my own research. Also, I was first diagnosed within weeks of taking a broad spectrum antibiotic for a gum infection. So FT seems a reasonable treatment for my particular case. I was disappointed when it id not work.

There could be many reasons for it not working. The main I have thought of is that I used my 1.5 year old son as a donor....didnt do any pretreatment tests for disease ect and I figured he was safe as it gets....I feed him and see his poop everyday. However, adult bacteria develops at about 2 years of age and this could be a factor in it not working for me. That being said, babes have alot of lactobacillus, more than adults, which should still be good for the gut. But perhaps not strong enough to colonize mine well.

I certainly did try for long enough and enough times (several weeks, daily FTs). I have unlimited, immediate access to his poo. But no go. I may try gain with my husband. I just need a break on all that for a time.

jo
Posted 4/24/2012 6:43 PM (GMT 0)
Pupluv, you have already done 21 FTs which is great. Over how many days or weeks did you do these 21? How much blood are you seeing now if any?

CoLah, tell your husband to stop being a whimp (in a nice way of course) and get him tested. If anyone has to overcome the “ick” factor it’s you.

Joma, from what I’ve read it is best to use an adult as the donor since the fully developed flora has all the bacteria necessary for FT to help. If you did the same daily FT for several weeks as you did before using an adult donor you might see some better results.
Posted 4/24/2012 7:22 PM (GMT 0)
Edbar

Yes, as I wrote, I know that may be the case. Right now I am dealing with a flare and leaving for a month visit to Toronto and just dont feel like adding something else into the mix before leaving home and my doc. I probably will try again with an adult in the future. If and when I do I will post again.
Posted 4/24/2012 8:13 PM (GMT 0)
Hi everybody,
it was very interesting to read this discussion about FT and possible reasons it might be effective. Majority probiotics have what, 8-12 different strains? Healthy GI tract has millions of different bacteria and that is why it is much more effective to use some healthy person's fecal matter to restore good bacteria than take a few strains of them in athe bottle. It is just a drop in a backet.
I, also, have read the very interesting post, written by Zippy123, dated 2/27/2011. Here is a little of what he/she said:
"...Finally after umteen stool test the problem was found a super bacteria was in my stool (this is what was written on the paper handed to me (VRE Entrococcus Vancomy resistant bacteria Enterococcus fecalias) I'm no doctor but thaa I what I seen, I am still afraid to look it up in the net,bitter sweet news as the only that that would even touch it was FLAGYL, ORAL. ....
...We surmized this bacteria was in my bowels for some time just enough to cause UC, until it it reached critical mass in when I was in a weekend state from a stressful day..."
I found all this very interesting.
Good luck to all, who are doing FT!
Posted 4/25/2012 1:47 AM (GMT 0)
Hi Edbar, Its going on 7 weeks...10 the first 2 and half weeks as my DH missed a day or 2 producing a deposit. Then tapering to 4 then next week, 3 the next and now 2 a week.

I don't usually have much blood but a lot of mucous and pain which I do not have now...I did my last FT Sunday and will do one tomorrow..then Sunday again..etc... This is the longest I have felt this good for this long in quite some time..I usually flare up every month around my period..and had absolutely  no problem last time..I can't tell you how psyched I am!

 

Posted 4/25/2012 2:17 AM (GMT 0)
It sounds like you have a good plan going. It might be tempting to stop FT especially since you are feeling much better but maybe keep doing twice a week for a month or so.
Posted 4/25/2012 2:26 AM (GMT 0)
pupluv,
I forget, did you do an abx protocol prior to starting the FTs? Did the GI you spoke to give you any more info on other patients and how long it took for them to get better?
Posted 4/25/2012 1:28 PM (GMT 0)
killcolitis, I did not take abx before starting. The GI did prescribe a few antibiotics but I decided not to take them as I do horrible with them. He just said to follow Barody's protocol but I thought since I did not take abx it would be better if I did FT's longer.

 

Posted 4/26/2012 1:27 PM (GMT 0)
IMO, I think FT in itself is the best abx/pbx there is available. Therefore, it will be better and more effective than any available drug. I guess there is something to be said for getting the colon into its healthiest state prior to FT to increase the odds of things "sticking"? However, my son's colon was very sick and inflammed during his firt FT (scope) and within a couple days was in complete remission. So, to use abx or not prior to FT is probably going to be an ongoing debate and may not matter either way.
Posted 4/26/2012 1:38 PM (GMT 0)
Hi T,
In Jack's case it could have been possible that his CDiff went into immediate remission with the FT (as I understand it, this is common ?) but that the remi was holding the UC. I don't know about the FT protocol for Cdiff and whether it involves abx but with UC it appears to be for whatever reason a much more difficult beast to treat for many. So, it might (or might not) be assisted by a sterile gut. I've seen good results on both sides... Our GI suggested abx saying most FT protocols use them but they don't know which ones so it's just a guessing game.
s
Posted 4/26/2012 2:46 PM (GMT 0)
Your right, he had psedomembranous colitis from the cdiff infection, and it was cured from one treatment. It's really tough with him, because his UC was so bad prior to getting cdiff...so your probably right about the Remi. The only reason we are still doing biweekly FTs is the hope that it will help us get off the Remi eventually. At the very least I think using FT as adjunctive therapy will allow an easier med protocol?
Posted 5/2/2012 2:00 PM (GMT 0)
Hi Guys, Just an update..I'm on week 8 of FT's. I have been doing it twice a week for the last couple of weeks. I was a little nervous last week that something might be coming on as my poo looked a little different and I went twice instead of once for a couple of days. The one poo a day thing is really so different for me. Anyway, whatever it was worked its way out and I'm still doing well. This is all so different for me as I really don't know what normal is so everytime something is a little different, I worry. I know I have already said this, but I have had this disease 17years and have been in a mild constant flare for most of it. I have been in remission since I have been doing the FT's..IS 8 weeks of no symptoms considered "remission" yet? I wish I could just tell everyone! But its pretty gross for most:). Thank you guys for letting me share my success..so far:)

D 

Posted 5/2/2012 2:14 PM (GMT 0)
OMG this is great news, however ready this makes me sqormish :) but I'm happy for you! I've tried so many things. I'm waiting on my Mutaflor to come in and see how that probiotics works with me. Then after that maybe I'll ask my doctor to get my donor poop tested. He's a good canidate I think.

I get so desperate, all we want is remission!

Thanks for sharing!

Posted 5/2/2012 2:22 PM (GMT 0)
Some would say remission needs a "clear" scope as well, but I say 2 months with no UC symptoms is remission. Congrats!
Posted 5/2/2012 2:44 PM (GMT 0)
trojen I know what you mean about a scope to confirm clinical remission. But I probably would NOT do a scope at this stage. IMO this will only set you back in your FT treatment. If you’re feeling great I don’t think you need a scope to prove this.

Pupluv, that’s great news. Keep going and don’t stop FT yet. I do hope your remission is long lasting and a scope down the road (maybe a year) might be warranted.

Posted 5/2/2012 5:18 PM (GMT 0)
therearemiracles, I had a really hard time with the "yuk part" but I am obviously so glad I am doing this. What was really weird is Probiotics didn't do a thing to keep me in remission but FT has worked wonders.

I have a scope done every year and I'm not due till Nov. But I may push that back as it always starts a flare for me. I do know if they scoped me now, it would look good.

Edbar, You are right and I am going to just keep it up..maybe at some pt. I will do one a week but I am going to continue for quite some time.

Thanks guys! 

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