Double Blind FMT Clinical Trial for Colitis…Who’s Interested??

Hey UC’ers,

Super big thanks to one of the site’s user’s down in Australia.  I just received this email, and I am really hoping he follows up with how things turn out.  How about you???

Here’s the message that dropped in my inbox yesterday:

Hey Adam, I didn’t want to add as another story but i am a member and thought this might be cool to share with everyone, i will be sure to keep you updated as to how it all works out. Hi, I thought I let you all now I’m currently participating in a double blinded FMT trial here i Australia at the St Vincents Hospital. The trial goes on for 8 weeks, I’ve had my first infusion yesterday via a colonoscopy, in hospital then I give myself an enema 5 times a week I have been given frozen enemas which I defrost prior to giving myself my own fmt enemas. This is a double blinded trial i wont know if I am being treated with the placebo or the fmt infusion, but after 8 weeks I will know if I have placebo I am given opportunity to go on the fmt treatment which, means that another 8 weeks of infusion s, I will let you all know how all goes and keep you all updated. Jay

So…

If you’re as interested as I am in the results…or at least some follow up to this story…do me a HUGE favor and write a comment below saying:

Thanks Jay, let us know how it goes!

Fecal Microbiata Transplant therapy is gaining steam and it is super awesome to know users of iHaveUC are taking part in the scientific approach to this fully becoming a mainstream accepted treatment.  Since I’ve been following FMT for about 5 years, it’s definitely made a serious leap closer to the doctor’s office than previously.  Either way, please write a comment below if you’re interested in the follow up from this study.  Jay, you da man!!!

Here is a link I found which I believe has the details regarding this clinical trial:

https://clinicaltrials.gov/ct2/show/NCT01896635

Cheers and hard poops,

Adam




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FMT

50 Responses to Double Blind FMT Clinical Trial for Colitis…Who’s Interested??

  1. Edward Jennings April 9, 2015 at 11:54 am #

    Thanks Jay, please let us know how it goes!!!!!!!!

  2. Samantha April 9, 2015 at 11:55 am #

    Hi Jay
    Yes, most interesting study, please inform Adam of any future information about FMT from your study results.

  3. Odina April 9, 2015 at 12:00 pm #

    Thanks Jay! Please let us know how it goes. Good Luck!

  4. Lori April 9, 2015 at 12:16 pm #

    Hi Jay, interested in how it goes.

  5. Bev April 9, 2015 at 1:47 pm #

    THANKS JAY!!

    LET US KNOW HOW IT GOES….PLEASE!!

  6. Rosanne
    Rosanne April 9, 2015 at 2:02 pm #

    Good Luck!!! Hope you do well!!

  7. UCmom April 9, 2015 at 2:04 pm #

    Good Luck Jay!! Hope it works for you and please do keep us informed.

  8. Claire April 9, 2015 at 2:10 pm #

    Thank you so much for posting this and please keep us updated. I am also in Australia and was about to take part in this but then I got too sick. I had to start on prednisone again and until I can get under 20mg of it I can’t do the trail. Fingers crossed and good luck.

  9. Melissa Lawler April 9, 2015 at 2:11 pm #

    Thanks Jay, let us know how it goes!

  10. Joyce C
    Joyce April 9, 2015 at 2:24 pm #

    Thanks, Jay :-) Let us know the results and good luck!

  11. Joanne April 9, 2015 at 3:01 pm #

    Thank you Jay for sharing this information with us UC’ers. I am so glad you are providing this information. I hope all goes well for you!

  12. Jay April 9, 2015 at 3:49 pm #

    Morning all,

    Ive just arrived to work to see all your messages, great to see it has generated some interest. I will have to make mention though that I am still “Da Man”, only in a super hot womans body, thanks Adam,bloody androgynous names are a killer.

    You guys might of read my introduction post a few months ago, I had just been admitted to hospital and told by the Dr’s I was a mystery to them, as they couldnt figure out what was wrong with me. Turns out the best they could tell me was i had a bowel infection, ive recovered from that now, but i was just about to enter the trial at that time and due to going on antibiotics i was not allowed entry as you need to be off medication for 4 weeks including pro biotics or antibiotics.

    Now i am in and i have started the enema’s last night, I am not going to lie you, it is weird to be looking at a medical bag of some strangers poop and knowing you are about to put that inside you, but as i am sure you all feel, sometimes you just get to the stage you are willing to do anything.

    The enema went fine i am sure it will get easier logistically as i go along. I also keep a diary for th study which records when i go, how much enema stayed in and for how long, apparently some people can do the enema and walk aound all day or go to bed. This is not the case for me as yet, i lasted about ten minutes, and i was doing some serious yoda mind talk, just to last that long.

    Lastly i will just tell you about the colonoscopy i had to enter thetrial officially. So in the beginning i was kind of interviewed over the phone to see how and where my colitis was up to, from that chat i then met with the Dr at St vincents, was weighed, had obs done and gave some poop and blood samples. From the poop and blood samples they were checking for any other possible infections or things that might exclude me from the trial.

    After a week these came back clear and i was booked in for the scope, this was the final hurdle, i couldnt be too diseased but i also couldnt me too mildly diseased. Lucky me i am diseased just right. My last scope was 2010 and i was told i had proctitis up to 13cm, i know have left hand colitis up to 48cm, so we will see how we can improve upon this.

    The scope was easy the bowel prep though was a $#**, god i wish they would invent a tablet for that. When i woke in recovery i was shown all the photo’s of my bowel and the little ulcers that cause me such pain, it was weird actually seeing them, now i can not pretend they aren’t there. You know how sometimes we like to think we are ok and the same as everyone else, now i know for sure i am not.

    Well needless to say i passed the scope and was entered into the trial, now i travel from my home town in Newcastle about 2.5 hours each way to collect the frozen enemas each week for the next 8 weeks, and i take one 5 nights a week. If i am on the placebo at the end i will be given access to the good stuff.

    The last thing i wanted to tell you is the FMT mix is provided to this trial by Dr Barody, who i have seen mentioned on this site before, so going off his research results i feel pretty excited about the possibilities of this FMT.

    Feel free to ask any questions and ill do my best to answer them.

    Jay

    • Bev April 9, 2015 at 4:39 pm #

      LOL!!! Jay…fabulous name for a gal!!

      • Adam
        Adam April 11, 2015 at 1:42 am #

        ewwwwps….did it again didn’t i:) lovely name both ways;))

  13. Melissa Howard April 9, 2015 at 4:09 pm #

    Jay, id love to know how it goes.

  14. Ella April 9, 2015 at 4:41 pm #

    Yeas I’m interested to know about FMT!!!

  15. Ritu Sharma April 10, 2015 at 1:34 am #

    thanks jay , please keep us updated

  16. Ed April 10, 2015 at 4:09 am #

    Updates please

  17. Betty April 10, 2015 at 6:48 pm #

    Please do update us! Soooooo hopeful that it is successful!

  18. Jay Jones April 11, 2015 at 5:57 am #

    Hi Everyone,

    three days in and the enemas are getting easier to give but still having alot of trouble retaining them. My record time to date is about 7mins. I wondered if any of you might have experience with enemas and have some tips on keeping it in longer. I would be grateful for any knowledge.

    other than that guys it all seems to be going well

    • Bev April 11, 2015 at 6:40 am #

      Definitely stay lying down on your side for at least half an hour and try and relax. I used to close my eyes and relax afterward when I used to take mesalamine and steroid enemas. I got better and better at holding them in. I eventutally trained myself to retain them permanently.

      In fact, you shouldn’t be letting them out at all, once you really master it!

      What a thing to have to ‘master’, huh…lol??

      • Jay Jones April 11, 2015 at 9:33 pm #

        Thanks Bev. It will be a new skill to add to the resume.

    • Haadi May 11, 2015 at 2:55 am #

      Jay, first lie on your left side, massage for 15 mins and you’ll feel the urgency go away slowly (don’t give up!), then on your back (legs raised against the wall or something), and then the right.

  19. Lori April 11, 2015 at 7:03 am #

    Can you do a little at a time?

  20. Ed April 11, 2015 at 2:33 pm #

    Lying on your side will help them go deeper but for retention, I found that doing them with an already run bath helped, I’d get in as soon as I felt able and it helped them stay in. Whether its the pressure of the relaxing, I don’t know.

    • Jay Jones April 11, 2015 at 9:34 pm #

      Thanks Ed great tip

  21. Mary April 11, 2015 at 8:17 pm #

    Hi Jay,
    I am a fellow Australian, who lives in Sydney and very pleased doctors around the world are looking at Prof Borody’s work regarding FMTs. He believes ulcerative colitis is bacterial and I think he is spot on with this belief. My son who is 23 has ulcerative colitis and is enjoying remission – he takes Rifaximin (non absorbable, antimicrobial antibiotic), which has been amazing for his condition, along with a strong probiotic (he took a bit of convincing re this, but symptoms returning convinced him otherwise). On the other hand, my nephew, who lives in Adelaide is very sick with ulcerative colitis and could loose his colon. His parents followed the medication path and nothing has worked for him, except a short remission here and there along the way. He eats and drinks whatever he likes, has infections regularly, requiring strong antibiotics and finally they are trying to get him to see Prof Borody for FMT treatment, which is a last resort approach. I know with two in the family with colitis, it brings us to the belief that it is genetic and it could be. But, both my son and nephew loved fast food and it is possible they picked up bacteria from this. I am very interested to read your experience and I wish you every success with this treatment!

    • Jay Jones April 11, 2015 at 9:42 pm #

      Thanks Mary. It certainly is an amazing opportunity I have been afforded.

      I dont know about hereditary but my cousin also has colitis, and all my uncles and mother have bowel issues, so there could be something in that.

      my colitis kicked in at 27 when I quit smoking. Ill be sure to keep you updated best of luck to both boys.

      Jay

  22. Rhonda Dearlove April 11, 2015 at 10:27 pm #

    Hi there,

    How weird, this is something I only found out about yesterday and am very interested to find out more. Would love to know how it all goes. I think I have been living in the dark!!!! Too much time in the loo!!!

    Thank you

  23. Michael April 12, 2015 at 9:43 pm #

    Hi Jay,

    I read about that trial also sounds promising. I too got UC when I quit smoking as did my sister. Annoyingly if you started smoking again I would place money on the fact your symptoms would diiminish drastically though its not a great option.

    If you speak to Sharon at the CDD where Dr Borody works there are ways that help keeping the enema in. One way I tried was raising my hips putting some cushions or pillows underneath and putting my feet on the wall and massaging the left side of your stomach gently and trying to let gravity help. I think you can take immodium for the first few days and that can help with retention as well. the more you do it the less your body rejects it. If you can do it and manage to get of to sleep you have a strong chance of retaiing it for the whole evening.

    Good Luck and fingers crossed you get some success.

    Cheers

    Michael

    • jay April 13, 2015 at 4:42 am #

      Hey Micheal,

      there have been times when im in a flare that i have seriously considered taking the lung bungers back up, but in the end im just not willing to do it. They are some great tips that I will give go.

      thanks again
      Jay

  24. Ariel April 14, 2015 at 7:37 pm #

    Hi Jay,

    I also took part in this study but at Bankstown-Lidcombe Hospital. I completed this study at the beginning of February 2015. Let me tell you, enemas are not easy! This was the first time for me doing enemas and it is a really weird feeling, along with the fact that it is someones poop.

    But it does get easier! At first I was only able to hold it for about 30 mins but eventually I was able to hold it overnight. Its really necessary for you to hold it as long as possible so the fmt can be absorbed. I found ways to help hold it like going to the toilet before hand, doing part of the enema (a bit less than half), wait a bit, go to the toilet again so it flushes everything out and then insert the rest of the enema. The Dr said you only need to have a lining of the fmt inside you so its ok to use only part of the enema. I found that i was able to hold a smaller amount for longer so give that a go.

    I also did the enemas in the bathtub because i wasn’t comfortable having to use a clean towel and then wash it if i got anything on it. The bathtub works just fine because its easy to clean and the toilet is so close by!

    Turns out I was on the real stuff (you can tell, it stinks!) and it did help to an extent. Because i initially wasn’t able to hold it long, it wasn’t able to help with everything. The scope did show some slight improvement but i think if i was able to hold it from the beginning, i would be pretty much cured.

    If anyone has any questions feel free to email me at ariel.taylor92@gmail.com

    Sorry for any typos, I’m quickly writing this at work (trying not to get caught).

    Good luck Jay. I hope everything goes well for you :)

    Ariel

    • jay April 22, 2015 at 5:27 am #

      Hey Ariel,

      I dont know how but I missed your post. Thanks for writting. I am also pretty sureij am on the real stuff it smells.

      thanks for the tips. Do you have any lasting benefits?

      also for your last check up scope did you bowel prep and we’re you sedated or anethetised?

  25. Jay April 15, 2015 at 8:52 pm #

    Quick update guys,

    Ive finished the first week of enemas and it is looking really good already. I have less blood, as i always have blood in the stool and bowl, hardly any mucus now, and wait for it….finally after nearly 9 months solid motions. I will keep you all posted but thats what we are up to here.

    Jay

    • Mary April 16, 2015 at 3:26 am #

      Hi Jay,
      This is great news and many thanks for keeping us updated!

  26. Ed April 15, 2015 at 10:44 pm #

    Jay

    Were you ever tested for c diff?

    Thanks
    Ed

    • Jay Jones April 18, 2015 at 2:41 am #

      Hi Ed,

      as far as I know I wasn’t. I had alot of blood cultures done though. I will say this i was the sickest and most scared I have ever been in my life

  27. Chris G April 18, 2015 at 10:06 pm #

    Good luck and please keep us updated!

  28. Claire April 18, 2015 at 10:22 pm #

    Hi Jay,
    You would have been checked for C-diff. I went through the first stage of the trial but tested positive for c-diff (and they checked twice) so had to go on antibiotics to get ride of it first before I could start the trial. They wouldn’t have let you start the trial if you had it. I’m nearly done with the antibiotics so just have to decrease the prednisone now and than maybe I’ll be able to be apart of it too. Thanks for keeping us updated too!

    • jay April 22, 2015 at 5:23 am #

      Good luck Clare I really hope so.

      in regards to the c diff I answered thinking I was being asked from the last time in hospital.

      I was screened at the start of trial for everything you could imagine.

  29. Farooq April 19, 2015 at 5:46 am #

    Hello, everyone my wife has ulcerative colitis,, she is taking medicines, but nothing works. help me frnz.

  30. Kate BA
    Kate April 24, 2015 at 11:01 pm #

    I’m in Brisbane and see they are taking patients in the study on the Sunshine Coast, so I may have a go. I was concerned about research I read that the treatment was originally for C Diff, which I have never been told I have. But this one sounds like you can’t have CDiff. Also, I read the remission only lasts about 6months to a year. http://cureforulcerativecolitis.com/treatment-options-2/fmt

  31. jay May 19, 2015 at 12:46 am #

    Hi everyone

    quick update 2 weeks to go until im done with the enemas . I am feeling great no aches no pain, zero abdomen complaints. I have gotten better at the enemas averaging holding them in for half an hour.

    I feel like I am in complete remission. I get a sigmoidoscopy in two weeks to see what’s happening inside and to find out if I’m on the real stuff or placebo.

    update you then.

    Jay

    • Else Nielsen June 15, 2015 at 11:11 am #

      Hi Jay !

      Anxious to hear how it goes with you. Do you know if you was on placebo or the real stuff ?
      Regards from Denmark

  32. Amber June 1, 2015 at 3:47 pm #

    Hi guys
    Im in Mackay but often have to travel to brisbane for my daughters treatments, she is only 3 years old and was diagnosed with UC 1 year ago. She isnt responding well to meds and they want her to get a stoma As a mother thats the last thing i want of course!
    Am very interested in FMT and hoping this may help. Please keep us updated on your progress

    Thankyou Amber

    • jay August 9, 2015 at 7:32 pm #

      Hi Amber,

      I have just seen your post again, and I wanted to check in and see how your little girl is going? did you end up trying the FMT?

      I am really happy to answer any questions if you have some. I just wanted to say, go with your gut in regards to how you treat your daughter, and I am sure it is heart breaking to watch her be so sick and little.

      It is hard as an adult to have navigated this path through GPs, specialists all telling you different approaches, it must be hard doing it on behalf of the little person you love most in the world.

      Anyway the offer is there to contact me privately on jaygee1632@hotmail.com if you want more info on how to go about home FMT. Or anyone else reading this.

      For me I am so happy to be healthy and in control of my life again I would love to be able to pass the info on to anyone else it might benefit.

      Kind regards
      Jay

  33. jay July 9, 2015 at 3:55 am #

    Hi everyone.,

    its been four weeks since my last FMT and I am in remission, I would say I have been since third week of the trial.

    last colonoscopy after the trial showed i had

    • Bev July 9, 2015 at 5:58 am #

      That’s fantastic!

      You had….?? Do tell!!

  34. jay July 9, 2015 at 3:59 am #

    10cm reduction in disease and had had gone from severe to moderate colitis. I will continue giving myself this treatment ic j feel I am getting unwell.

    its free and works give it a go you have notjing to loose.

    I was on active not placebo. Only ingredients poo and salene.

    Jay.

    email me for more info jaygee1632@hotmail.com

    • Bev July 9, 2015 at 9:45 am #

      Yes, for some reason, once we have UC, we must keep replenishing the good bacteria forever. I will probably have to take the probiotic that I use FOREVER.

      You will likely have to continue to give yourself FMT forever, as well. Someday, I see FMT being available in a ‘non smelly’ version…it is, after all, nature’s probiotic.

      Cheers:)

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