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FMT diary for my wife (IBS-A)

FMT IBS-A

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#1 Mikka

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Posted 08 January 2014 - 09:00 PM

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Apologies for the rambling nature of the post but there's a fair bit to cover.

 

My 42y.o wife has had IBS-A (alternating constipation and diarrhea) for the last 5 years, in this time she's spent an average of 100 days a year in hospital (thanks to my insurance company here in Australia for paying for her to stay in private). Her major symptoms are abdominal pain that requires serious opiates to resolve and some pretty unpleasant vomiting.

 

We pretty much tried everything from CBT/Hypnosis/Fibre/Peppermint/Vitamin D/SSRIs and all sorts of medications for which I cant even remember the names etc - although it seems to me that the Dr's here seem less keen on the pharmaceutical route than they are in the US judging by the number of medications on the checklist when I signed up for this site.

 

I finally reached the end of my tether and suggested that we look outside the square and try FMT. All of the doctors here rejected the idea out of hand as 'quackery' and 'dangerous' and 'unlikely to make any difference'. My wife was really struggling with the physical and mental toll that chronic IBS takes, feeling like an audience to her life and personally I didn't see that her Doctors were having any success with just treating my wife's symptoms in hospital every couple of weeks and I felt that the idea of FMT was worth pursuing.

 

I contacted the Center for Digestive Diseases in Sydney run by Thomas Borody and was told that it would cost between $10,000 and $15,000 to perform the treatment, we would need to book in for an appointment with a GI in Sydney (1000km's away) and that it would be three months before we could get an initial appointment or a year if we wanted to see Prof Borody. The fact that my insurer required a full breakdown on why the treatment was necessary from my wife's Doctors (which was never going to happen given their reticence about FMT) and the fact that we couldn't cover the cost ourselves meant that this was out of the question so I began researching the home protocol.

 

The protocol espoused by theFreeman on this site seemed well thought out so I decided to give it a go. Unfortunately my wife is a bit of a wimp when it comes to procedures (despite having undergone at least 6 colonoscopies, multiple endoscopies, a laproscopy and hundreds if not thousands of IV drip, morphine and pethadine injections) and the 'ick' factor of the home protocol made her very resistent. She's a stubborn one my wife God bless her so I had to hassle her for a year to get her to finally agree to give it a go.

 

I am the donor (oh I should mention that we had my donation tested as despite being together for 15 years and being in excellent health we both thought we should see if there were any parasites lurking - thankfully there weren't). We got it done for free by sneaking it in to the hospital when she was in there for the pain and pretending it was hers (not all that ethically correct I suppose but it saved us $1000 that we didn't have to spend). Amazingly at this point my wife mentioned that she'd never had her poo tested as by the time she was in hospital she was generally so constipated that she was unable to provide a sample - this amazed me as I had just assumed that this would have taken place.

 

All this leads to last Saturday when we finally gave it a go - so I went to BigW and bought a $15 blender and sourced a $12 turkey baster online (remarkably hard to find here in Australia where turkey isn't a commonly consumed food) and we got ready to give it a go. So how did it go - in a word - disastrously.

 

I prepared a fresh donation in the blender with the water (left out for a day to remove the chlorination), some oats and 3g of salt. I managed to overfill the blender and it leaked all over the place, rookie mistake that one. Then once I finally got my wife into the bathroom (with her protesting whole-heartedly the whole way) it turned out that the turkey baster had some rough plastic on the tip that was scratching my wife's insides and the baster was pretty much useless as it wouldn't deploy the liquid effectively. Cue much angst, swearing and an early completion to the process with my wife saying 'I am NEVER doing that again' over and over again. I had managed to get probably 30-50mls in but the rest was flushed down the toilet. She did the process of lying on the bed in the various positions all the while telling me how she would never do it again.

 

I can tell you I was pretty despondent after that - I tried to suggest that we tweak some of the process (an enema bag is an essential I think) but my wife wasn't having any of it. She was adament that it was a one-shot deal. The next day she made a point of saying 'We are never doing that again' whenever I bought up the concept.

 

Then a strange thing happened - she went to the toilet 24 hours after the process and had an excellent BM (something of a rarity as its either practically water or nothing). Then the next day she went again and had another excellent BM, and the next day. This from a woman who would normally have either one BM per week or 15 BM's a day when experiencing the diarrhea. Its early days but I'm astonished that only 30-50mls (1-2oz) could have this effect. So now she's a convert - she's been begging me to do the process again this weekend.

 

I'll keep you updated with progress but even at this early stage we've had better results from this procedure than any other treatment provided by the medical community and my wife has some hope of a better life so its been worthwhile.

 

All the best

 

M.

 

 


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#2 mr120

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Posted 09 January 2014 - 12:07 PM

I look forward to hearing a follow up :)

Fingers crossed it continues to stick/improve for her!

 

W



#3 Mikka

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Posted 09 January 2014 - 10:47 PM

Well she had another successful BM today so that makes 5 good BMs in 6 days since the procedure. Looks like she had a fair bit of fecal impaction from the constipation, this was always my theory on why she had the recurrent pain (the last doctor had her on Ketamine for chronic pain and she's previously been on SSRIs for gut pain - talk about treating the symptoms but not the cause....both of those had significant side effects too - the Ketamine gave her halucinations and the SSRIs gave something she described as 'brain zaps').

 

If she keeps on going like this I'm hoping we'll be well on top of the pain which is the primary reason for her being admitted to hospital so regularly. Keeping her out of hospital is key as my theory is that you're more likely to get an illness in hospital than be cured of one.

 

I'm trying to source an enema bag to have another go this weekend so we'll see how that goes.

 

M.


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#4 joejr2u

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Posted 09 January 2014 - 11:26 PM

Awesome. God Bless You Guys

#5 mr120

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Posted 10 January 2014 - 03:36 AM

when i did it i used a douche,  the tube that passes in is very thin, i had very little trouble using that.  But the blender had a tap so i could just pour it into the bulb easily.



#6 Mikka

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Posted 11 January 2014 - 11:09 PM

Another successful BM today that makes 6 out of 7 successful daily BMs since we did the FMT - my wife described it as 'two logs' - I think she's in disbelief at how fast and effective the FMT has been. We've decided not to do the procedure again this weekend as her condition is improving by itself but if she returns to constipation or diarrhea then we'll have another go. 



#7 Mikka

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Posted 12 January 2014 - 07:29 AM

Make that two BM's today - my wife continues to be amazed. She slept most of the day today and on waking said she felt the best she'd felt in 6 years. So far FMT has exceeded both of our expectations.



#8 Mikka

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Posted 16 January 2014 - 12:18 AM

Results continue to stick - daily BMs and zero pain. I had my wife in tears yesterday through the sheer joy of potentially being able to see the light at the end of a 5 year tunnel of hell.

 

This will be my last post, I'll only post again if her condition reverts in which case we'll try the process again. My only concern now is what to tell our friends and family as my wife is adament that we can't tell them that she's feeling better as a result of FMT but that's a great problem to have.

 

For those people out there that are considering it I say go for it (with the usual caveats around testing the donor). My wife ummed and ahhhed about it for a year due to poor advice from Doctors and the 'ick' factor - crazy really but there you go.

 

All the best



#9 puck

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Posted 13 May 2014 - 10:02 AM

Hi Mikka, I live in Australia as well, Melbourne. Can you please share what's the name of the test you did to your stools? From what you are saying the health insurance doesn't cover this test? 

 

Could you please also give us an update? Is everything still good? 

 

I am going to do it soon after so many successful stories and no hopes in traditional fake cures/diets, and this article http://gi.org/media/...ng/fmt-ibd-ibs/.

 

Thanks!



#10 cwhizzz

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Posted 04 August 2014 - 02:04 PM

Wow Mikka! Congrats to you and your wife on the results! How is everything going now?



#11 veniceboy

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Posted 18 March 2015 - 07:36 PM

Any update?



#12 flossy

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Posted 25 March 2015 - 03:44 AM

Awesome!

 

Yes, an update would be nice to hear.







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