Faecal transplant eases symptoms of Parkinson's (and CFS)

[redo]

I haven't read through the whole thread yet due to vision problems. The jokes I've read aren't the worst. It's just that if begin rideculing the procedure, and things around it, even if it's well meant, it will lead to people being more ashamed of wanting to do this potentially effective treatment, and those who've tried and failed (when/if that'll happen) will have a hard time telling about their results. I got some sarcastic remarks about this in another thread, I can live with that, but I am sure ridicule can be enough to drive others who might think about this away.

Thank you for your comment by the way.

 

[leela]

For my part, I apologise if my humour was taken the wrong way. I would actually do this treatment if I could think of anyone who would fit the proper criteria for donated material (everyone I know goes to India and the tropics all the time.)

I was just injecting some fun, with no intention of offending or demeaning; and while not a fan of potty humour in general, I found it an irresistible, obvious way of infusing some light-spiritedness in here. All of us suffer and need a good laugh. I never once meant to ridicule the procedure, and still find "transpoosion" pretty hilarious. Call me puerile if you must.

I admit I have not read through the whole thread, so i don't know if there are comments that truly demean the treatment; but I encourage everyone to stay open to each others' different qualities while being glad that these kinds of treatments are becoming available for us equally.

I have forwarded the info to two Parkinson's friends, and was surprised by the resistance. Poo humour is nothing compared to the "faecal resistance" people have. Many humans like to pretend to themselves that poo is not part of their lives. It's a weird disconnect. Our culture has lots of shame and secrecy built into its perception of the body and its normal functioning.

So please, those who have expressed offense at the humour here: please accept both my apology and my invitation to crack a smile, because every one of us here wants to get better, and knows how lonely and desperate and awful it is to be sick every day.

Take this from someone who has drunk her own urine as a therapeutic measure

 

[redo]

I am not all that upset. Tone of voice doesn't come with text. My comments weren't directed at a specific comment, but rather to the genereal phenomenon of poking fun, when many already feel that it's so shameful to do such a procedure.

 

[aquariusgirl]

lots of crohns patients thinking about or even doing this.... even just DIY... I know a girl in oz who had great success with this txt and some others. back to working part time after 7 yrs in teh wilderness.

 

[leela]

I am not all that upset. Tone of voice doesn't come with text. My comments weren't directed at a specific comment, but rather to the genereal phenomenon of poking fun, when many already feel that it's so shameful to do such a procedure.

I'm glad to know you're not all that upset It's true about the tone of voice thing.
It is too bad there's shame around something so basic as what happens in the alimentary canal. Considering there's no getting around it, no matter who you are, I wonder why we collectively (as a society I mean) agreed to feel sheepish about it?

Years ago someone suggested to me that we are basically like a donut (a really squishy complicated donut) in the sense that our bodies have a big "hole" or "space" right down the middle, wherein stuff from "outside" the body passes through the top end of the tubelike space, interacts with our tissues here and there, and then passes out the other end, somewhat modified from its interactive experience with us.

A curious perspective, but kind of interesting!

 

[Bob]

Years ago someone suggested to me that we are basically like a donut (a really squishy complicated donut) in the sense that our bodies have a big "hole" or "space" right down the middle, wherein stuff from "outside" the body passes through the top end of the tubelike space, interacts with our tissues here and there, and then passes out the other end, somewhat modified from its interactive experience with us.

A curious perspective, but kind of interesting!

Yes, it's true... We're all donuts!

Our alimentary canal is entirely lined with a protective skin-like barrier, so that anything we ingest does not have direct contact with our blood or internal organs, in exactly the same way as our skin gives us protection to external pathogens and toxins etc. The gut and our skin are both protective barriers which separate our insides from the outside. So we can think of the contents of our alimentary canal (i.e. food & faeces) as being external to ourself.

It is too bad there's shame around something so basic as what happens in the alimentary canal. Considering there's no getting around it, no matter who you are, I wonder why we collectively (as a society I mean) agreed to feel sheepish about it?

We have evolved to find faeces repulsive and revolting, and maybe it is natural for us to find any association with faeces to be shameful. Therefore it is only natural that society might avoid talking about the issue.

But who cares about society? If we need to do something, then it needs to be done. Society doesn't even need to know about it. Only our doctor, and the donor, needs to know.

I have heard that society in India is more comfortable talking about the subject, and that the regularity of toilet habits can be a regular subject of conversation, a bit like how the English like to talk about the weather.

It is actually very sensible to talk about toilet habits because the nature of our stools can indicate whether a person has a health problem. So it would be protective of health for society to talk about the subject freely.

 

[leela]

We have evolved to find faeces repulsive and revolting, and maybe it is natural for us to find any association with faeces to be shameful. Therefore it is only natural that society might avoid talking about the issue.

But who cares about society? If we need to do something, then it needs to be done. Society doesn't even need to know about it. Only our doctor, and the donor, needs to know.

I have heard that society in India is more comfortable talking about the subject, and that the regularity of toilet habits can be a regular subject of conversation, a bit like how the English like to talk about the weather.

It is actually very sensible to talk about toilet habits because the nature of our stools can indicate whether a person has a health problem. So it would be protective of health for society to talk about the subject freely.

You know, I personally have no shame around the fact of poo, and that some of the world's poo comes from me; but I admit it took some time to overcome societal conditioning on that one.

I agree that being able to examine, assess, discuss and otherwise be aware of your digestive process and its end result is most useful!

I don't give a hoot myself about society at large, just wonder how it is that the weird denial that Everyone Poops (great book by the way)
became so prevalent. I suppose from the point of view of evolution it's best we recognise it by its odor as something to avoid interacting with directly. But not being able to talk about it? Admit you do it? Crazy I tell ya!

Back to the thread's specifics, though, as a group we are terribly pathogenically-susceptible people. My main hesitation is how to chose product that does not introduce new baddies. This would be particularly difficut, I suspect, with the DIY approach. But even labs miss pathogens in the faeces all the time.

Further complication for me is I would insist it be from a vegetarian (I know, don't even ask) who has not been exposed to parasites etc from travel.
This pretty much leaves infants of the housebound as potential candidates...

I would love to hear from someone who's successfully done it. It really does sound promising. The gut stuff is such a big part of this ongoing suffering.

 

[Bob]

Hi Leela,

Yep, I agree with everything you've said.

My previous post was not supposed to be directed at you personally... I was just making general comments, and I used your post as a starting point for my comments.

I would love to hear from someone who's successfully done it. It really does sound promising. The gut stuff is such a big part of this ongoing suffering.

Did you watch the video in the link that redo gave us? They interview a patient who had a successful faecal transplant, and they introduce us to the food blender and the coffee filter! Which, apparently, are both very useful tools when doing a faecal transplant!

http://www.abcnews.go.com/Health/di...ieved-diy-fecal-transplants/story?id=13601702

 

[leela]

My previous post was not supposed to be directed at you personally... I was just making general comments, and I used your post as a starting point for my comments.

Same here

Did you watch the video in the link that redo gave us? They interview a patient who had a successful faecal transplant, and they introduce us to the food blender and the coffee filter! Which, apparently, are both very useful tools when doing a faecal transplant!

I can't get the video to play no matter which browser I use. Good article, though.

 

[redo]

lots of crohns patients thinking about or even doing this.... even just DIY... I know a girl in oz who had great success with this txt and some others. back to working part time after 7 yrs in teh wilderness.

I'd love to hear more about this. Since Crohn's patients have problems in the small intestines, I guess they have to use a duodenal tube, instead of doing it like an enema.
The duodenum is where the stomach ends, and the small intestines begin. The 100% sterile tube is normally inserted through the mouth or nose, and pushed down to the stomach, and further down to the duodenum. It's really cheap equipment, so if someone were to give it a go, they could practice with water. If it's done right, it can be anything from milkshake to apple juice in the tube, and the patient wouldn't be able to tell the differece.

I've seen a video interview with Borody (professor from Australia) where he describes treatment success with Crohn's patients. That should interest us, because many of the symptoms the Crohn's patients get are similar to ours... He is pretty certain Crohn's come from unwanted microbes in the gut.

I am not sure how Borody does it with Crohn's patients. I hope he does it like an enema, cause that's super easy to get done on oneself. A duodenal tube takes a little more effort, but is still very possible.

 

[Bob]

I can't get the video to play no matter which browser I use. Good article, though.

You need Adobe Flash player installed (an up-to-date version), or Google Chrome browser which has its own version of Flash Player already built into it (I think).

 

[Boule de feu]

Message removed. Reason: Bad taste.

 

[redo]

If you don't understand that what you are doing, is driving people away, then I'd say your borderlining being feebleminded.

And if you do understand it, but still chose to ridicule, because you feel it's your prerogative to indirectly spit on those who are ill enough to try such a procedure, then you've got a problem.

 

[leela]

Redo, are you clear on the difference between ridicule and levity?

Ridicule would be people who do not have this relentless disease coming on here and calling us all kinds of names for trying this or anything else to get better. There have been trollish people who have done that here about all manner of (valid) protocols people are trying, and it's hurtful and mean. The spirit is entirely different.

I appreciate that you personally don't find this funny, but it might cause you less suffering if you could appreciate that some find it a nice opportunity for levity, and some good puns

I haven't seen one post here that ridicules so much as expresses light-hearted fun. The above "shitty" post (insomuch as one can analyse humour) uses humour as a release for the frustration with this ridiculous disease name, and references the ungainly manner in which the media has for the most part represented us.

You see ridicule where I see creative release. Let's agree to disagree.
It seems like a matter of perspective.

Meanwhile, regarding the very good point about the duodenum, I wonder if populating the large intestine would have an effect on the small? Obviously peristalsis etc is moving everything in a downwards direction, but I wonder if the important critters, as they populate, are able to go where needed? This would be good to know.

It's quite possible you have hit on the very reason why there are the two treatment pathways.

 

[leela]

You need Adobe Flash player installed (an up-to-date version), or Google Chrome browser which has its own version of Flash Player already built into it (I think).

Thanks, Bob, I don't update often. Just don't seem to have an issue on any other site. Weird.

 

[Bob]

redo, there is no ridicule or spitting here...
actually, it's quite the opposite...
you are misinterpreting the posts...
it is just some light relief and friendly light-hearted humour about a serious subject that we are all interested in...

No one has suggested that there is any ridicule or shame associated with this procedure, except yourself,
So is it possible that you, yourself, are less comfortable with the whole subject than others on this friendly, supportive, informative and light-hearted thread, which until now has been free of conflict?

I'm sorry that you don't share a friendly sense of humour about the subject that some others, including myself, clearly have.
Please let's not allow this thread to turn into a 'difficult' thread, just because we have differences in the way we like to approach the subject.

I can assure you redo, that there has been no hostility on this thread... You are misinterpreting the humour.

 

[Bob]

Meanwhile, regarding the very good point about the duodenum, I wonder if populating the large intestine would have an effect on the small? Obviously peristalsis etc is moving everything in a downwards direction, but I wonder if the important critters, as they populate, are able to go where needed? This would be good to know.

Yes, I've thought about that...

To repopulate the entire length of the alimentary canal (excluding the stomach and above), then it would surely be more effective to introduce the faeces at both ends. It's an unpleasant thought, but I've learnt from watching the video, that a sterile tube is inserted beyond the stomach, so the patient will be unaware of what is entering their system. (or did redo tell me that? I think it was redo and the video.)

 

[redo]

Well, there's different interpretions, both as a sender and receiver, to all messages. And often the exact same message can end up as levity or ridicule, depening on who reads it. I know I can come across as a little harsh, sometimes a little to harsh, sorry about that.

But at the same time I think the whole poop poop poop comments things is really counterproductive. Although it's not mean spirited. Many see it as light hearted fun of or around a procedure. Others see it as poking fun at a procedure, and thereby indirectly at those who choose to do the procedure (driving them away).

I think we're derailing from the topic when it ends up as poop, poop, poop, hahaha. And I think gut, CFS and this treatment is such an important topic, so I don't want this derailed, although some might get some cheap laughs as the thread goes off topic.

I guess I've been a contributor to derailing now, just by writing this. So, I'll give it a rest. It just frustrated me that comments came after I wrote the whole thing about please let's not make this into a poop humor thread.

I thought I'd give this treatment a try, and report back to you guys. But as more comments came, it got me feeling that I don't want to "be the poop person, trying the poop treatment, using poop tubes, and then let's laugh at the poop procedure the person is doing".

 

[redo]

And, hey, leela and bob, thanks for bringing the thread back on topic. Appreciated.

 

[Bob]

I thought I'd give this treatment a try, and report back to you guys. But as more comments came, it got me feeling that I don't want to "be the poop person, trying the poop treatment, using poop tubes, and then let's laugh at the poop procedure the person is doing".

Hi redo,
I understand your point.
But we are genuinely interested in the subject.
Thanks for taking my comments so positively.
Best,
Bob