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Conclusions after Dr's visit to discuss FMT

ibs-d fmt rifaximin

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#1 mellosphere

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Posted 19 January 2016 - 09:58 PM

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Quick background - 

25 year old male. Had IBS-d as long as I can remember. At a minimum for 13 years.

Main symptoms: loose/stringy yellow stools that fall apart when you flush; cramps; cold chills/sweats; insomnia (due to cramps). 

Have tried lots of supplements/prescription medications (as we all have). Hate thinking about the money wasted, but oh well. 

Tried two enema FMT's over the weekend. Did not go very well. No improvement noted. Was determined to discuss with GI doc. 

Diet: limited to white rice, white potatoes, meat, eggs, apples, and bananas. That's it. I function this way, not well, but I can make it through the day, though exhausted.

 

So I went to my doctor today to discuss a few things. 

First I told him that although for years I had not believed I have a bacterial issue in my intestines, that all changed when I had a partial improvement with rifaximin (although it was about 4 weeks after completing the course of antibiotics). Mind you, I did not see much improvement, but it allowed me to reduce my number of loperamide tablets per day by 50%. 

 

He then told me that as far as he knows, my response is to be expected because it is plain knowledge (among at least his colleagues here at the University of Iowa Hospital system) that IBS is caused by bacterial dysbiosis. I did not expect him to be so forthcoming about a reason for IBS because I never asked in those words and I was under the impression that many doctors did not know the cause, but he made it seem very obvious that it is due to a bacterial issue. 

 

Then I asked him if he could hook me up with an FMT for IBS (knowing the answer) and he said no, it is not currently indicated due to lack of research and is only allowed for c-diff patients. 

So of course I asked, well what about people doing it at home?

He said - no way, they can't do that. (he has never heard of anyone doing home FMT's)

I said, yes they do, with enema bottles or turkey basters.

He said he would be surprised if it works because it would be very difficult to get past the splenic flexure of the large intestine, and any liquid in that area would only treat the left colon, which would not produce a noticeable-enough difference to cure people. 

He then added that anyway, it's not just the colon that needs to be treated, and even if the bacteria would spread throughout the large intestine, it would never make it into the small intestine, where there are some bacteria which contribute to the problem.

 

I don't want to discredit anyone's success here. If you have been helped by enema FMT, kudos to you, because this is not the first doctor I've heard that has expressed serious disbelief that people can get past the splenic flexure without a colonoscope. I tried and I'm not convinced it did anything beneficial to me. I will be trying a different donor, but I feel like the position changes are not necessarily a fool-proof method for good propagation of the solution throughout the colon.

 

That being said, I am wondering for those of us who have not yet experienced relief from it could possibly be better off going with the pill route. According to the power of poop website and also knowing that Chris over at gastrosolutions.org packed his own poop capsules, I am wondering if this may be a better method. It can't be that hard and I know that the clinical trial going on right now for IBS and FMT in Connecticut and New York is using the pill method instead of colonoscope. I realize they have no results available yet, but there must be something in their thought process that for IBS, a top-down method may be more appropriate than bottom-up.

 

Anyway, I ordered some pills. I am going to pack it three times in 0, 00, and 000 capsules, then swallow 30 of them, and do that for a few days hopefully. I will try to pack 90 I think on one day and freeze the following two days-worth. I will definitely keep you posted on how this goes once I get the capsules and the poop. 

 

Thoughts?


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#2 brox914

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Posted 19 January 2016 - 10:42 PM

Hey. I am in the trial. I did discuss some of these things with the docs during the screening. I can tell you that the aspect of the small intestine and how the capsules can potentially affect the bad bacteria was discussed and is in line with your information. There is the impression that doing from the top (ie. Capsules, nasal, endoscopic) is more effective than up that bottom because the bacteria will pass through the small intestine. That said, the study information they referenced did not greatly deviate one way or the other.

#3 mellosphere

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Posted 20 January 2016 - 04:23 AM

Thanks for the info, Brox. Full steam ahead for me, then. Looking forward to your results. 



#4 jaumeb

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Posted 20 January 2016 - 07:11 AM

Some ibs patients lack critical microorganisms and a fmt is the solution. But there may be other causes, such an overgrowth of a particular microorganism. It is not clear to me that an fmt is the solution for all ibs patients.

I read an interview to a dr that favored the enema and said that the movements of the colon move stuff up and down and therefore distribute the transplant.

#5 brox914

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Posted 20 January 2016 - 09:24 AM

Yeah I mean I'm not making any statement in terms of cause, or any assessment about the mechanics of the colon. It was relayed however that there are potential benefits of going "top-down" as this way the donor bacteria can materially interact with any harmful or overgrown bacteria in the small intestine on the way to the colon.
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#6 mellosphere

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Posted 20 January 2016 - 09:55 AM

jaumeb, I do agree with you that FMT is not the solution for all IBS patients. However, seeing as I have exhausted all the options my doctor is willing to give me, I think it is worth a try. I will continue researching both methods. 

 

brox, could you specify if there were any instructions concerning the procedure? Such as, did they have you eat a specific diet or fast for any number of hours either before or after taking the pills? Or do you just walk in and take them with a bunch of water and walk out? 

Thanks!


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#7 brox914

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Posted 20 January 2016 - 10:26 AM

The is no prep procedure for this trial, which actually concerns me. But their goal is science, to prove that fmt works better than no fmt. If I was doing outside of the trial I'd probably prep myself as if I was getting the formal procedure. But realistically too, who really knows what's the best way to prep either, or if you really even need to when there is no colonoscopy involved.

#8 Leo41

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Posted 20 January 2016 - 04:08 PM

Real interesting, please.. both of you.. keep us updated as to how each of you do.

 

The most current reading I have done has best results as a front side dose of antibiotics to kill a good bit of your bacteria (good and  bad), the FMT, and then follow up with oral pills. 

 

Tell me about the pills. If there is an aftertaste or worse.. burping (and tasting) I could not handle them.



#9 carolyn lee

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Posted 23 January 2016 - 12:59 PM

I have had two doctor assisted fecal matter transplants two years ago to treat c.diff by way of a nasal tube that I swallowed, then the solution was put directly into my stomach.(This was an infectious disease doc, not a gastro doc) First one, c.diff went away, but came back 7 months later, hence the second procedure. I have had IBS-D ever since and lately thinking that the c.diff is taking over again since I had to take a round of antibiotics for a bladder infection.  You said you ordered pills...you mean empty capsules to pack with poop? Where did you order from?...I'd like to try this. I absolutely believe that FMT is the cure for c. diff and other IBS problems.  Our flora just needs to be restored to a healthy balance.  I honestly think that mine needs to been maintained. Also if you could share the procedure, that would be awesome.  Thank you and good luck to you. 



#10 mellosphere

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Posted 23 January 2016 - 01:45 PM

Here goes:

 

This morning I took some stool from my wife and laid it on a piece of wax paper on a table in the bathroom. We turned on the fan to keep the smell down. I just took about a pea-sized amount, rolled it between my fingers into a sausage shape, and fit it into a size 0 gelatin capsule, followed by a 00 and a 000. You have to move fairly quickly before the first capsule gets soft but it wasn't too difficult as long as the stool wasn't too soft and kept its shape somewhat. 

In about 45 minutes we packed 35 capsules this way and I took them immediately following their creation with about 4 tall glasses of water. At first I felt very large, filled with air and water. I think I drank too much water at the beginning but I wanted to be sure they had all passed through my esophagus. All I could taste was gelatin, which really is not a pleasant flavor. After about 5 minutes I began to feel very nauseous. I walked around a little which did not help and soon realized I was just going to have to wait it out. I ate an apple and a banana one hour after the pills. It took a full 3 hours until I started to feel normal, but I think part of that is that my body really is used to its morning loperamide which it was denied due to my desire to have the material pass as quickly as possible toward my large intestine. I've been feeling fine now for an hour. 

 

The flavor: I seriously only tasted gelatin on the way down. I hate to admit, however, that I had to endure about 2 hours of poop-laced burps. I think this is mostly due to the fact that using 3 capsules resulted in a lot of air in the pills that I swallowed. Between the swallowed air and the taste of stool, I think this is the reason for my nausea. I sucked on a number of cough drops and the taste didn't bother me near as much as the nausea. 

 

That's all I have to share for now. I had read of people putting stool in a bag and mixing it with saline before straining it and putting the liquid in the capsules, but it seemed like my capsules were very flimsy and I'm not sure if they would have held up with liquid for very long. However, if I do it again, I will probably try it that way just to see if the experience is any more pleasant. I am not sure if ingesting solid stool, albeit in capsules, forced the stool to stay in my stomach longer than a liquid would have, thereby exposing it to more stomach acid. On the other hand, the solid pieces of stool were never even taken from their natural habitat before they entered my body since I didn't mix them with water or subject them to a blender. I can see positives and negatives either way. Leave me any questions or send me a message if you prefer. I will post updates here.



#11 jaumeb

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Posted 24 January 2016 - 06:19 AM

I would look for enteric coated capsules.

#12 acureisoutthere

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Posted 31 January 2016 - 12:38 PM

Hi,

I continue to study and research the human microbiome and microbiome transplants.

There are a couple of things to consider;

1.  90% of the bacteria in the large intestine are anaerobic.  So, if we expose these bacteria to air, we kill them. Avoiding this, as much as we can anyhow, would be beneficial.  I am skeptical that anyone without the right equipment could make pills that would have intact, live bacteria.  I know that the best researchers are doing this, but alas, they have the equipment.

2.   Many bacteria have a lifespan of around 20 minutes, so using fresh material would be better.

3.  Freezing kills some of these bacteria, not all, but some of them at least.  It ruptures the cell walls and they die.

4.  Normal stool is about 60 % bacteria, so quantity of transplant may play a role.  Having enough of an initial infusion to coat the entire large intestine would be helpful.  I would tend to expect that this liquid slurry of a transplant would make it past the splenic flexure, via the correct positions, and gravity. 

5.  The average American has already lost 40 % of the diversity of their microbiome.  This most likely plays a role.  Athletes tend to have more diverse microbiomes.  Also, the best researchers are using more than one donor, to increase diversity of the overall transplant process.  Finding and selecting a donor that has a healthy, widely diverse, microbiome may play a role.

6.  The diet of the donor may play a role.  After all, you want the good, helpful microbes to be in abundance.  So, donors should eat a diet high in fresh fruits and fresh vegetables for at least two weeks prior to donations.  Our good microbes thrive on these.   Avoiding all sugars, processed foods, and red meat (red meat has low levels of antibiotics, which kill bacteria). 

7.  Your diet may play a role.  Eat foods that support your good, helpful microbes, and starve your bad bacteria.  Eat plenty of fresh fruits, and fresh vegetables, along with unsalted and unroasted nuts and seeds, and raw honey.  A plant based diet is best. Some cooked vegetables are OK, but remember to eat plenty of fresh fruits and fresh vegetables, a variety of them.

8.   Better cure rates are being achieved from doing an initial transplant, and then 5 to 10 added infusions via enema, for 5 to 10 days.

The human microbiome, (what we are transplanting) is established over the first 3 years of life.  Therefore, it makes a lot of sense that more than one infusion is needed to establish a healthy, helpful population.

9.  Antibiotics wreck havoc on the microbiome.  So your donor should not have had antibiotics for at least a year, and preferably much, much longer than that.

10.  Doing a clean-out, just like you would do for a colonoscopy (using a full bottle of Miralax), prior to you initial infusion should play a role.  After all, you want to reduce the populations of bad bacteria, as much as possible, before your initial transplant.  Instructions are on-line, you basically go on a liquid diet for two days, drink the whole bottle of Miralax, mixed with some Gatoraide, and stay near the toilet, then next day, when you are completely empty, you do the transplant.  Study the instructions on line please.

 

I reversed my IBS-D .  You can read about it here.  I am wishing you the very best, and wish you find success on your journey to health.

 

 

http://www.ibsgroup....ibs-d-its-gone/

 

 

 

One more thing, please, please have your donor tested.  Screening and testing protocols are on the PowerofPoop website.


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#13 mellosphere

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Posted 03 February 2016 - 02:20 PM

Long story short, FMT has not worked yet with me. I have performed 2 capsule FMT and 8 enema FMT. I thought that around the end of last week things were looking better, but then I had two really awful days and that brings me here to today. Bowel movements are back to normal, which means bristol #5-6, with some 7's, about 10-15 times per day.

That being said, I am not done trying this but I will experiment with a variety of methods and also try to round up some different donors. I will try to get a few of my family members to donate. I really thought I was moving in the right direction, but something set me off and I'm not sure what that was.

 

I will begin a new thread if I find some relief from this terrible condition. It is depriving me of life, sleep, strength, clarity of mind, etc, as we all well know. Like I said in the first post, I had thought for a couple years my condition was not related to bacteria. But my course of rifaximin, though definitely not a cure, or even much more than a band-aid, produced a difference in symptoms which were significant enough to make me reconsider my position about the cause of my severe IBS-D. 

 

Drop a line if you have any insight. I appreciate the comments already given. 



#14 jaumeb

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Posted 04 February 2016 - 04:34 AM

I don't know the solution. I can tell you about what I am currently exploring if you are interested.





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