OFFICIAL CLINICAL FT TRIAL

mackster, are they having you lay down for the FT and remaining that way? i noticed the first FT i did i laid down most of the day and held it for 8 hours i think. i wasn't having rectal problems at the time though so i'm sure that makes it practically impossibe. i usually had to prop my butt up with 2-3 pillows and hike my legs up the wall so gravity would do the work. it was quite uncomfortable, but it helped me keep it in. for 5-6 of my FTs, i held them for 2 hours. i don't think it was long enough. i wish i could get it done with a colonoscopy. that way, i'd be sleeping and would have a better chance of holding it in.

do you think the doctors would be open to trying out colonoscopies after the trial is over? i figure since the enema thing is written in stone right now that you'll just have to deal with it.

bananagirl said...
mackster, are they having you lay down for the FT and remaining that way? i noticed the first FT i did i laid down most of the day and held it for 8 hours i think. i wasn't having rectal problems at the time though so i'm sure that makes it practically impossibe. i usually had to prop my butt up with 2-3 pillows and hike my legs up the wall so gravity would do the work. it was quite uncomfortable, but it helped me keep it in. for 5-6 of my FTs, i held them for 2 hours. i don't think it was long enough. i wish i could get it done with a colonoscopy. that way, i'd be sleeping and would have a better chance of holding it in.

do you think the doctors would be open to trying out colonoscopies after the trial is over? i figure since the enema thing is written in stone right now that you'll just have to deal with it.

Dude, you dont have to hold the stuff more than 10 seconds. The head doctor there stated that this is a bacterial enema not a 5asa. Bacteries only need a few seconds and they colonize right away. I do hold them for like 10 minutes, but the docs said you dont need to.

"And this is the doctor running the trial? That doesn't fill me with confidence. How does he expect the enema to reach the entire colon if you only retain it for a few seconds? Bananagirl makes a good point; do they have you lying elevated with your butt higher so that the enema can have a chance to travel up the colon? "

It's a colonisation, dude! Kinda like an infection, it spreads and multiplies. This is not a medication.

And no, they don't...lol at the butt higher. again, it's a bacterial enema. Mesalamine are different, those do need to "run down"...

this is what it is. I thought the same as you at one point. Dr. Lee explicitely stated this is how it worked. In fact, she's not the only one, the lead GI mentioned this as well.


I questioned them on this matter multiple times It's kinda like Agent Smith in the Matrix. And with all due respect, I think I'm going to believe what lead microbiology specialists are telling me.

if FT doesn't work whacha gonna do, bro?

or are you the type of crossing the bridge when you get there...haha

you're 70 right? ...you only have a few more years, just ride it out ....

just kidding bro, I had to...Im sorry lol

Are they saying that in just a few seconds these bacteria just fly up through your colon and outnumber all the existing E. coli type bacteria?

Saying that a infusion only needs a few seconds to let the bacteria colonize is quite at odds with all the publications and research I have read. Maybe it is true but I have my doubts.

I don't think anyone is suggesting that a '30 seconds' of good bacteria is going to fly up the colonic tract and hey presto...fait acompli.   If that were the case then why are there 6 infusions required?

Let's be sensible here, it's already been established that FT is going to be more effective in UC in the lower rectal area.   Edbar/curl3d, please explain why would they be doing this study on patients who have little or no inflammation?  That sounds a bit like remission to me.    I want them to be doing the trials on the chronic UP/UC sufferers like me.     The problem I see with dosing with prednisone is that imho it could contaminate the 'true' results. Myself and I'm sure many other trialists are on prednisone anyways (unfortunately).

If/when you've been riding the prednisone carousel for several years and experiencing the abhorrent  side effects of long-term steroid use, you will know where I'm coming from.

Understand that we are in a randomized double blind trial, that doesn't come without risks, especially when we don't even know who the freaking donors are.  We are doing this not just for ourselves, but ultimately for everyone else which includes you.    Whatever comes of it, you have to concur that we are taking one for the team.   Please consider that before you start nit-picking about the velocity of bacteria.     Let's have a bit of respect here buddy.

Post Edited (Mackster) : 3/5/2013 9:04:42 PM (GMT-7)

Fair comment. I don't know the details of the trial but if the participants are in "remission" with not much inflammation then it might well work. I know from my experience (and others) doing FT enemas for the last 15 months for my son who had severe UC covering most of his colon that it took a very long time for things to colonise and it required many daily enemas to get to that point. We are still doing maintenace enemas. I truly believe in this treatment and very much want it to show good trial result which is why I was questioning the statement. Again if the participant is in remission then different story.
Sorry if I came across too critical and I do appreciate those who have signed up for the trial as we would have loved to participated a year ago but there was nothing going on then and definitely not for children.
Good luck to all.

Edbar/curl3d, forgive my rantings (I've been weaning off pred).   I don't pretend to know anything about bacteriology so I'm not going to even speculate as to which is the best method.  Whether it be no/moderate/high inflammation.   All I can say at this point is that the people running the show, do not want any significant changes in the condition of your colon during the trial period.  My only (laypersons) take on this rule, is that it could compromise results.

They do a flex-sig at the outset, and another one a week or two after the trial.  It is then that they break the code.     Edbar, it's obvious that you've delved into the subject of FT, and may I offer your son my sincerest cosolation, and that he can indeed attain full remission.  How frequent are the maintenance enemas?

laughingduck,  thanks for the encouragement!

Mackster, thanks for your words of encouragement. We are doing two enemas a week as maintenance and very slowly trying to stretch it out. He's been in remission with no meds for the last 14 months other than a mild flare in October last year when we went on a lowish dose of pred for a month and daily enemas which pulled him through.

UPDATE:  6th (final) dose   Friday March 8  2.15pm

 

For most of the week leading up to my last infusion I was flaring pretty badly.  I have to guess that this was mainly caused by pred withdrawal.  Even though it had been a slow taper, I had been down to 2.5mg  for about ten days.   It had completely lost what little efficacy it had.   On the Wednesday I emailed the Uni and the big cheese said to go up to 10mg, and to increase my use of cortifoam enemas.  (I was only using them sporadically) so now I'm up to 4-5 times a week.

Anyhoo, because of the pred increase to 10mg and Murphy's Law, I couldn't provide the hospital  with a stool sample.  Fortunately they said it was ok.

The 30ml infusion itself went as it normally does for me--I retained for no more than 5 mins.

I go to the Uni on Friday March 22 ar 12.25pm for the flex-sig.  It will be then that they will break the code and inform me whether i was on the placebo or not.   I'm hoping for the former, even though means going through this all over again for another couple of months.  

I have to say that between the Uni and the hospital, they have both been very helpfull and made it go much smoother than I thought it would be.  They don't faff around with red tape and needless protocol and it makes it go by quickly.   I don't think I ever waited more than 5-10 minutes in the waiting room even when they were running behind a bit.   So hats off to the faculty and staff!

I'm surprised that more FT trialists and DIY users haven't come out of the proverbial woodwork, but it's early days yet and this thread may well be continued and hopefully with better results!