OFFICIAL CLINICAL FT TRIAL

I will be continuing with bi-weekly FT infusions in August for a six week course (Mondays and Fridays).  If it yields good results I can then arrange for periodic 'top-ups', (probably monthly).

I started this thread at the behest of several interested forum members, and it looks like it garnered a decent amount of interest (4100+views).

FT has it's detractors and certain doubters who come on here claiming 'remission' who actually hope that FT is a dud.  Generally because they are pushing their own agenda based on their dietary habits when they should know better, ie. there is nothing that works for everyone with UC.

I hope the thread has been helpful for people concerned about trying new things to combat this dreadful disease.

Before I decide whether to resurrect my input, I will sit on the sidelines for a while to see if the rules are relaxed on a certain strangely unmentionable subject.  A subject that gets locked by the mods even if it is as inocuous as a harmless 'open letter' to the administration.

They may claim that it's a so-called 'privately owned' website but in reality it has become very much a product of it's contributors---that's you and me, the public.

I'm not throwing a spaz by picking my ball up and going home, but

I have a sneaky feeling that this will probably be the last you hear from me.    Good luck everyone.

Hey Mackster thanks for all the posts! I'm still here lurking around reading what gets posted on FT even if its not a lot

Hi Mackster, Thanks for all your posts. I am planning in starting FTs and reading your thread was very helpful. Whether we hear from you again or not, I hope you get better soon.

Thanks for all your contributions everyone.   I'm sorry my stay had to end this way but it seems there's a bit of a witch hunt aimed at yours truly.  They are removing and editing my posts.

I guess I must have been flagged because they saw fit to even LOCK my 'DENTAL NERVE DAMAGE' thread on the Chronic Pain forum.   A thread I started on behalf of my wife who has been suffering from neuralgia for the past 20 months.   We had lots of great feedback on that thread and as I've already stated, I appreciated the many kind folks who chimed in.

Why the admin and certain mods chose to lock, remove and edit is a mystery that bizarrely is only known to them exclusively.

The mods keep telling me to PM them but that is just not going to happen just out of principle.    The admin already have my email address from when I first registered 6 years ago.  If they are claiming that I've violated a rule(s), just out of common courtesy the onus is on them to notify me personally, if they feel that strongly about it

I expect the Thought Police may lock this thread too.   All the best folks, and I'm sincerely rooting for full remission for you all.   Meanwhile keep on helping and supporting each other.

Hi Mackster, sorry for ignorance but what does it mean to PM?

lahaina said...
^^ Hardley. Try going over to "Chrnic Pain" look under your buddys Dental Nerve Pain thread. Check out how nice everyone was to him. then watch /read as he transforms into some kind of lunatic because the Moderators edited a post of his, so he says. Which is well within their right.

The whole thing is bizarre. I appoligize for going on to your thread, U.C.. Although if you read "Macksters" last few posts on the C.P. thread, you'll see that something is off with the dude. JMO

I went and read it. Nothing out of the ordinary. Most mods when they edit something put 2-3 words explaining the edit. That's all he wanted.

You're calling him a lunatic. Where exactly is that. I read all 4 pages of that dental nerve damage thread. Is he a lunatic all a sudden because he doesn't want to give any more information before he is told why his post was edited?

It's his right to not disclose anymore info, just because he feels like it. You bad mouth him there and now you come here and throw more jabs. What is you're problem? He never said anything to you, yet you call him names.

And yeah, I'll defend him. He's probably not around anymore to defend himself. He participated in the Fecal transplant trial like me and he contributed information about his experience.

Hey Macster

OM just posted an article on the McMaster study... How did you make make out with the real thing? Anything you can tell us? Good or bad?

Hope all is well and thanks for doing/participating in this - it helps us all!

Meh - who cares why admin gets their nickers in a bunch really. They can go...., well, they can fill in the blanks... What's more important is you and all of us find some relief somehow. It takes far to much toll on all our lives and we miss out on far to much. Even just the simple stuff.

Just out of curiosity, did you ever talk to your GI about going all out to get the inflammation under control (remicade, Humira, Pred, Whetever else would work)? And then try FT.

Or do you prefer to stay away from meds all together if you can?

I think if we had the FT via colonoscopy it would have been better? What do you think. Shoot that thang up and down, left and right and I dunno.

Ditto, welcome back. Missed your insights. We are all pretty good with code words when necessary.

Bro, Mackster, you can come back now. The embargo for medical Marijuana was lifted. You can talk about it now. :)

Well I said I would find time so here it is.  Had my last (maybe final) infusion last Monday Oct. 7.

The last few were off a different donor, (strangely, I could kinda tell)

Pretty much the same retention time issues of a mere few minutes but I was a bit relieved to be not having to go through this again, it was getting too predictable.   All in all, I've had 6 initial placebo infusions and 12 of the real thing.

I have to say that for various reasons, FT has not improved my symptoms enough for me to go around ripping up trees.

I have been on yet another tapering (30mg) dose of pred since Sept.19 and are currently on 20mg so the solid(ish) BMs and reduction in frequencies/urgencies I would have to say are down to the pred and not the result of a change in intestinal flora.   I was hoping that I could have been the bearer of better news.      Especially after being a regular visitor to the outpatient dept. of Infectious Diseases for longer than I wanted to be.   

Anyway, I was happy to take the risks in the interests of medical science and I'm sure my small part would help them put together an intelligent report when the trials are concluded.    I've heard that there have been some fortunate people that have gained remission, so it will be interesting to see just what percentage that is when all the data is crunched.

The staff at the Uni and the hospital were absolutely brilliant and I thank them all for having the displeasure of staring up my backside on too many occasions.

I still believe that FT has legs and is going to prove a big step forward in the treatment of IBD.  The method(s) of dispensing it will probably need a certain amount of tweaking but I'm sure they'll get it right for everyone eventually.

I will now make an appointment to see my GI and ask him about these  Canadian synthesized 'poop pills' I keep hearing about...

hey big mac - sorry the results weren't more positive, but thanks for contributing your rear view to medical research -

even tho my diy ft's were somewhat limited, I still believe they were part of my healing process -

keep on it man !