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OFFICIAL CLINICAL FT TRIAL

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Ulcerative Colitis
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Posted 3/11/2013 6:02 PM (GMT 0)
awesome you guys are able to do this -

i would have continued my diy, but my local donor pool has dried up - my 85 yr old mom may be the next candidate -
Posted 3/12/2013 2:28 AM (GMT 0)
Good luck finding a donor soystud.  But if your 85 year old mom is in good health and tests out ok, then why not?   At her late stage of life she might relish the idea of 'nurturing' her offspring over again.  Bizarre as it may sound! LOL.
Posted 3/12/2013 2:34 AM (GMT 0)
hey Mack -

thanks for the support -

but bizarre doesn't even begin to describe what i'm thinking :-)

relish ? i like it -

pass me some butt relish ! lite on the lumps -

Posted 3/12/2013 9:49 PM (GMT 0)
not sure about retaining it for a few minutes but i know dr borody told me retaining it for an hour is good enough.
Posted 3/13/2013 2:09 AM (GMT 0)
Max, I didn't really have any choice as I'm pretty inflamed.  If the 'stuff' was like foam, it would be a lot easier.

Soystud, you are freaking mental... smilewinkgrin   But a sense of humour is vital to deal with UC and all it's baggage... 

Posted 3/22/2013 7:02 PM (GMT 0)

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


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.

Did you get your results today Mackster? Hoping it was placebo for your sake!
Posted 3/22/2013 9:00 PM (GMT 0)
I am also in this study. I've had 5 infusions so far and my last will be this Monday. So far nothing has changed for me. I hope I am getting the placebo. I'll keep you guys posted. I've been blogging about it too at www.perseveranceblog.com. It's funny reading here how many people don't seem to find any help but when I talked to Dr. Lee and the nurses they said they've been seeing really good results.
Posted 3/22/2013 10:51 PM (GMT 0)
Had the flex-sig this afternoon and yes I was on the placebo!

The downside is that my infammation has spread further up my colon.  It was 30cm and is now "more than 30cm" (the flex-sig only goes up to 30cm).

According to the doc it is not severe but moderate and enough to cause my flaring condition.  No polyps is good news I suppose.

Well, I have to go through all this again after the Easter weekend. 

Of course I'll keep you all updated and I wish the best to all my fellow trialists and hope they'll also keep posting.

Posted 3/22/2013 10:55 PM (GMT 0)
Thank you for posting. Glad to hear you were on the placebo but sorry too that you have got worse, probably not really good to have your own stuff back up there when your body is doing its best to get rid of it. So thank you too for risking this for the good of the study.

I wish you all the very best for the "real" stuff and am so hoping for you (and I guess for "us" too) that results are positive. Will you have to go on some pred or other med to bring this inflammation back down?
Posted 3/22/2013 10:55 PM (GMT 0)
I just had my sixth one...Apr 2 is my sig....

I'll see if i was on the placebo or the real sh***T
Posted 3/22/2013 10:57 PM (GMT 0)
Placebos are dumb sh***t, they should give you the real stuff and hope for the best.

Wasting time with placebos and shaaat.
Posted 3/22/2013 11:30 PM (GMT 0)
All the best CanMan.   London, I'm not sure the placebo is 'getting your own back'.  They would never tell you but it would seem a bit pointless shoving the same ***t back up you when they could use a ready-made neutral fluid.   The sample specimen we hand in, is tested for bacteria when I asked the presiding doc.

Somedude, yeah it's cruel to have to undergo all this rigmarole again because of the placebo factor.   But to be honest, i'll do whatever it takes to get some relief from this ***** of a disease.    Hey, we're doing it for science, man!

Posted 3/22/2013 11:38 PM (GMT 0)
I thought I read somewhere that the placebo would be one's own stool but I could have completely imagined that! In fact, it is probably wrong...
Posted 3/23/2013 12:10 AM (GMT 0)
the cdd in australia gave placebo poo by using doner poo and nuking it in the microwave.
Posted 3/23/2013 2:56 AM (GMT 0)
Yeah, I guess that could make sense as long as a microwave can successfully sterilize the 'doner poo'.*

* I'd rather have a doner kebab though!

 

Posted 3/24/2013 5:35 PM (GMT 0)
Thanks for keeping us up to date with the progress on the trial, sorry to hear you're now more inflamed. Hope you get it under control as quickly as possible
Posted 4/10/2013 1:38 AM (GMT 0)
How has everyone been doing on the trial? Any new results? I hope it it going better for you with the real deal this time Mackster!
Posted 4/10/2013 11:50 PM (GMT 0)
I am particularly interested to know which arm Somedude was on, Placebo or real fecal matter...
Posted 4/11/2013 1:18 AM (GMT 0)
I was unfortunately on the real stuff the first time. It did not work for me. I was really disappointed because I was hoping this was it. :(
Posted 4/11/2013 1:41 AM (GMT 0)
dude, i think this is it !

just be thankful you don't have berpes !

or biracial hernias !

Post Edited (soystud) : 4/10/2013 7:48:42 PM (GMT-6)

Posted 4/11/2013 2:08 AM (GMT 0)
Oh no I'm sorry to hear that somedude. And to go through all that with nothing to show for it... I really hope they find a cure for uc soon, it's definitely not a fun disease!
Posted 4/12/2013 3:57 PM (GMT 0)
Well I start my second trial series today on the real stuff.   I can only hope i have better luck than the dude.

*I'm not holding my breath though.

*UC does tend to make you a little skeptical.

I'll keep you posted either way...

Posted 4/12/2013 4:09 PM (GMT 0)
good luck !
Posted 4/12/2013 5:18 PM (GMT 0)
Good luck Mackster! I very much hope it helps your situation...

Would be so nice to hear news of it working.
Posted 4/12/2013 10:30 PM (GMT 0)
I was in and out in less than half an hour.  The main Doc (Dr.Lee) carried out the enema.  As per usual I couldn't hold it in for more than a couple of minutes.   She said that it was ok though.   She gave me a diaper and said "see you next week same time".

I could kinda tell it was the real stuff too as it smelt more like poo. (could be a clue to other trialistas?) although it was an opaque beige colour judging by the stain I left on their pristine white sheets.  (sorry to be so graphic, readers)

I'm not holding out hope for any 'instant' improvements mainly because I have inflammation that goes up about 30cm.   It may take a few infusions to make a difference.   I would certainly feel better if I could retain the stuff for hours instead of minutes despite what the good doctor said.

If they could give it the consistancy of a foam I believe people would fare better.   I know I have no trouble retaining cortifoam, although it doesn't go up so far I guess.

Post Edited (Mackster) : 4/12/2013 4:36:13 PM (GMT-6)

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