OFFICIAL CLINICAL FT TRIAL

Post Edited (Mackster) : 4/13/2013 8:41:56 PM (GMT-6)

Well, sorry to say no improvements yet.  Still on the 30ml dose due to retention problems.  Could only manage to hold it for a couple of minutes this time.   I just don't know why I can't keep it in, I'm following all the rules, clear liquids only for the 12 hrs prior to infusion.  Took 2 immodium advanced 2 hrs prior.   Had my usual 4-6 urgent BMs in the am.  I can't figure it out.  Asked the doc if there could be too much flatulence causing me to reject the fluid, she said she doubted it.   Maybe I'm just too inflamed.   It's weird because I have absolutely no trouble retaining my nightly cortifoam (about the same dosage).   It's gotta be the consistancy, if they could change the texture of the fluid to a foam we might be in business.

I think I'll email the head honcho at the Uni to see if it's possible.

Any other trialists out there on this same program?

Managed to retain it for 1.5 hours.

Well, my participation in this trial has come to a close.

I'd like to say that I'm on the mend but I would be lying.

Given that I experienced slight improvements after infusion #4, and the fact that it was the only one when I managed several hours of retention, I would have to conclude that it seems obvious where my problems lie.

I have my post-trial flex-sig at the Uni. on Friday, when I'm sure it will reveal that my rectum/colon is too inflamed to effectively hold on to the 'serum' for long enough for the bacteria to migrate and do it's work. I will ask the Professor if he can give us an idea when the results will be published, but I suspect the trial is still on-going so could be a while yet.

I've remained on 10mg of pred throughout the trial and maybe that has kept me fairly stable, ie. 4-6 urgencies per morning.   My take on it is that this treatment would work better during a 'remission period' where there's a better chance of longer retention times.

The good news is that I will be able to continue with the treatment if I  choose to, on a twice-weekly program followed by monthly 'top-ups'.

I'm not sure if that is down to our wonderful (but flawed) Canadian health system, or simply the trial organizers way of thanking me for being a good little trialista. Not to mention having ones arse poked at weekly for over three months in the name of science.

Of course, the best reward would be lasting remission!

Thanks readers for your interest.   I still have faith in FT and will likely go for the follow-up infusions at a later date as I have a very busy few months coming up moving house and eye surgery (steroid induced cataracts in both) etc etc.

Unless there's anything  that fellow FT'ers or concerned parties wish to add, I will ressurect the thread at a later date.

He will likely confine his answers to the individual case (ie. me) based on what he gleans from the flex results.

Who knows? FT may actually work on an inflamed colon if the darned stuff is retained for long enough.    I'm a bit leary on electing to attain 'remission' via a higher pred dose, but hey, if it helps the FT bacterial brigade gain a foothold then it may be worth going thru the pred withdrawal nightmares.  Maybe there's an alternative to pred?  Nah, I didn't so.

I'm 70 years old so I don't mind martyring myself on the altar of medical science.  (we need a little stirring background choral accompaniment music here---maybe a college glee-club humming the Battle Hymn of the Republic.)

*It's the future!

*probably!