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Discussion Starter · #1 ·
Hello all,

I have suffered from IBS since i was around 12( i am now 31) after i was given ceclor to try to fight recurrent tonsillitis after other antibiotics had failed. I can pin point this as the cause because i literatly went into my doctor complaining of bizarre stomach girgling noises shortly after starting ceclor. after several rounds of ceclor i went in and had my tonsils removed. During junior high i had IBS-D and my only symptom was D. After many years of the D i realized i could not tolerate apple juice and cut out any juice containing apples. (Apple juice was a large part of my diet when i was feverish with toncilitis). my symptoms reduced after cutting out apple juice and i lived with a low grade IBS. During my college years i went on tetracycline for Acne. I later went on minocycline because the teteracycline was not working. During my summer off i worked a full time job and drank an excessive amount of alcohol. Suddenly over the course of about a week I became extremely nauseous and my ibs-d was back in full force. I went to several gastroenterologist and got the typical runaround and was treated for an assumed ulcer and duodentis. However several endoscopy's and colonoscopies later there was no sign of every having either or anything. I then began a long journey of dietary intervention which started with the fodmaps diet and then later the SCD diet of the more ketogenic variety. My nausea while on this diet is very controlled and my D is pretty good and i can go days with normal bowel funtion but my diet is extremely restricted and eating out and travelling is extremely difficult which has limited my ability to travel for work. I have been long convinced that my problem is a gut microbiota one and i have tried every probiotic under the sun. Many have had a effect but it only last while i am on them and it always fades with time. I am further convinced that my problem is microbiota related because if i through carbs in a meal i can literately feel it go through me and fester and feel better as soon as its out. Its like clock work. Often i get a sore throat during this experience and have a burning in my upper right quadrant which i am certain is my large intestine around the hepatic flexure. I think this area is sensitized to the bug or toxin it produces. As a weird side not i also developed a weird finger tip dermatitis in and around the period of the nausea that flares up when ever i eat carbs. I was prescribed a steroid cream for it that treats it but have been off the cream for several years on the scd diet.

I have been aware of Fecal transplants for several years and have been curious to see if it helped ibs'ers like myself. The recent study with a 70% success rate for improvement was enough for me to go ahead with the at home procedure. I sourced a small stool from my brothers 2 year old daughter as she has never been on antibiotics and seemed to be the ideal donor. However the size of the dosage and several issues with the procedure led me to only receive about a 1oz dose. I held it in for 24 hours and waited to see if it was enough to help. It wasnt. Although the morning after still holding it in i had a very unusual feeling of well being vs my usual need to evacuate my bowel.

So yesterday i decided to do it again and do as best as i could given i have a long weekend and plenty of time

I started with a colonoscopy prep drink last which completely purged my system. This morning i waited for my niece to provide the sample. After waiting until 1 pm in total starvation my sister in law provided an emergency sample. She is a great candidate as well but she is pregnant so i would have preferred my nieces but i simply ran out of time. I blended the sample with pharmacy grade saline and put a bit of potato starch in to thicken it and provide food for the bacteria. I bought 2 enema kits and dumped and washed them out as I could not locate a enema syringe at any pharmacy near by( i tried 5). I did find and buy an enema bag kit but i was not convince the thick liquid would flow under gravity alone and as such used the squeeze bottles of the preprepared ememas that you can buy for about 6$.

This time on a empty system i got about 250ml of the probiotic in me and i am excited to see if there is any positive results in the coming days. I did the whole lay down thing and even hung upside down in a device used for back problems that i have.

My niece finally provided a sample and i have frozen it for my next dose.

I will keep everyone posted good or bad in the coming days and weeks.

Wish me LUCK.
 

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DAY 2,

I held it in until 5 pm so around 28 hrs in total. I have consumed fiber with every meal which usually would cause me significant nausea and later D. So far so good but tomorrow a will give me a better idea of whether this is significant or not. At this point i am hopefully optimistic.
 

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Discussion Starter · #3 ·
Day 3,This morning I had a few bowel movements and have felt some familiar discomfort. I have visceral hypersensitivity and i am unsure if this will take a while to calm down as i have had it for a decade or more.

It is possible that the carbs are doing there normal thing to me. It is mild however for the amount of carbs and fiber i have consumed. I will wait and see and continue to eat fibre with my meals in the hopes that this is a process. If i see progress i will be doing more FMT's. I think it makes sense to give this a week or two before i draw any definitive conclusions about the success or failure or my trial but as of right now i am not as optimistic as i was.
 

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Do not get discouraged yet. I have read that with several people sometimes it gets worse before it gets better. And with several people colonoscopic delivery works better than the enemas. I know someone in the c diff forum who had enemas two times which didn't work but 1 delivery via colonoscopy cured her. She said for the first week she got really worse, like upto 30 bms a day..but after that she got totally normal. If your ibs is related to dysbiosis, there is a hope with fmt.
 

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Discussion Starter · #5 ·
Day 4,

Thanks for the encouragement hopingtogetbetter I appreciate it.

I totally agree that a colonoscopy is superior to enema as the delivery location is ideal. I have to believe that if i was missing any entire species they must be back at least is low numbers right now. Im sure that the mixture mixed with the incoming fresh food. I speculate that if one has some SIBO the bacteria living before the colon may seed the food before it goes in the colon and as such gives whichever the SIBO type of bacteria is, the upper hand in the fight to conquer. Similar to the appendix. If that is the case it will be hard to have a FMT take on the first try. I know they prescribe antibiotics to those with C diff.

Its hard to say whether I've seen any improvement. I have been eating carbs with every meal but am having familiar carb related symptoms from my past, mainly nausea and a head fog / ache. However on the other hand for the amount of carbs it seems milder than it should be so that's positive.

I should also add that i am in the IBS-D group. However since i went from no diet restrictions to fodmaps to SCD and have removed all foods that i find problematic i do not have very frequent D any more. My symptoms are well controlled and normally on a given day i will have 2-3 bowel movements in the morning and they are usually bristol type 4, 5 or 6. However if I stray from the diet and eat something wrong i will pay for it so i rarely do. The Fodmap offenders always ruin me so it is likely dysbiosis related. I'm just not sure that i haven't become sensitive to a good bacteria instead of having a bad one. On the other hand a lot of foods that aren't fodmaps are really bad for me such as fermented anything from soy to sauer kraut, almonds etc so who knows.

Ill keep posting but i am losing faith that 1 treatment will do the trick. Also doing it with the purge is hard on the system and i am not looking forward to doing that every few days. I fail to see how enema's with fecal in between the new food entering the colon and the enema will ever help so if i do it again i will at least preform a few normal enemas to purge my system .
 

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Discussion Starter · #6 ·
Day 5,

I would say that the FMT has not worked any miracles for me as it seemed to for some others. I went off the SCD diet in order to feed the bacteria which has as one would expect reignited the symptoms that i had under control. For now im back of carbs and ill give it some more time. I may do a few more FMT's in the future but i have to get back in shape for a business trip a week from now.

I will repost only if there is any thing notable to add or if i restart the FMT.
 

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Have you read heather van vorous's "eating for ibs"? I find it very useful. She herself suffers from ibs and her book has a very good rating on amazon.
Just like you my food choices are very very limited too and it takes a lot of courage to see all kind of food all around you and avoid it.
All the best for your trip and hope you feel better soon.
 

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You may not check this thread anymore seeing as it's been quite some time since you posted; however I felt I should note your procedure likely did not work because you used a transplant from a 2-year-old. Children do not have all the proper bacterial strains, they are still developing them. If you want all the proper bacteria for your age you likely want to use a transplant from someone who is 16 years or older.
 

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We had success after getting the process right - and we haven't found any published procedures that get all of the important variables right! The biggest variable was keeping oxygen, especially the oxygen dissolved in the water we were using for the FMT as well as the oxygen in the room, away from the bacteria in the feces. The center part of this reply has our procedure. The first part is just a justification/rationale for the FMT.

Since inflammation indicates immune system trouble and the backbone of our immune system is our gut bacteria (https://www.youtube.com/watch?v=5DTrENdWvvM ) then we have at least two choices toward wellness or at least maintenance. The medical community has a tradition of disrupting the immune response through drugs like infliximab or even aspirin. I take aspirin for body inflammation, but the more serious the disruption the more serious the side effects so remicade must list quite a number of cautions.

Another alternative is to repair the immune system. The end-point for repair is healing. The end-point of disruption can at best be remission, unless the body takes the chance to heal while the drugs are reducing the inflammation. Repair of the immune system would at least involve getting the right numbers and species of bacteria into your large intestine.

Getting gut microbiota to the large intestine by way of the mouth, stomach and small intestine is a difficult task. Our bodies are designed to keep species of germs in their appropriate habitats. That is why enemas - they are less intrusive than colonoscopy - can seed your colon with bacteria better than any pill you could swallow, even if it is coated. Fecal microbiota transplants through an enema get a full range of species from a healthy gut and give them a chance to re-seed your gut if they are done right. Even if they are done wrong they haven't caused much damage and despite the variety of people and methods, FMTs have overwhelmingly shown positive effects.

Getting the right bacteria involved is the strength of an FMT. Medical and research experts have a history of trying to imitate the body and missing the mark. Like when Nestle labs discovered that 10% of the content of breast milk was indigestible by babies - it was a pre-biotic that was food for the bacteria in the baby gut - they introduced pre-biotics into their infant formula. Unfortunately they just introduced the available pre-biotic, and they later learned that it wasn't all that close to the pre-biotic in natural breast milk. Gotta applaud their effort, but gotta feel out-classed by the human body.

FMTs are working for us now that we discovered the research about eliminating gaseous oxygen from the FMT process. We've done FMTs at home and they have accomplished what the diets , the supplements, the probiotics (even a thousand dollars worth of VSL#3 powder packets taken both orally and as enemas) and the drugs our doctor prescribed didn't seem to be able to do.

Possibly the key to success with FMT is getting the most important variables right, and I don't know why everyone is missing this (I'm new to the forum so the website address will probably not print here so I wrote out the title of the article at the bottom of this post just in case http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0170922#sec006)%C2 The researchers looked at the live bacteria count in solutions with and without oxygen - they used L-cysteine to get the oxygen out of the water. I think that boiling is a lot more accessible - and probably more effective too.) but it was easy to control the stool exposure to oxygen and according to the referenced article, that might be THE most important variable.

First we boiled some gallons of distilled water to remove the dissolved oxygen before using the water to prepare the FMT. The best bacteria dies when exposed to oxygen and water contains lots of dissolved oxygen (ask the fish), but the dissolved oxygen leaves when the water is brought to boiling (ask a fish why it dies in warm water and loves Alaskan rivers). After boiling the water we let it cool in sealed gallon jugs with CO2 blown into the air space.

Fill the collection bucket thing (the nun's cap they called it in the hospital during a really bad flare - while we were still under medication, before the FMTs) about half-full with the de-oxygenated water so that the stool drops right into the water and is not exposed to the room air for but a moment.

We took the extra step of buying a CO2 cylinder and regulator (about $170) so that we could displace the room air from the top of any container that the stool would go in. For example, we dumped the stool and water right from the collection bucket thing into a mason jar filled with CO2, then screwed on the mason jar cap with the hand mixer blade sticking through a hole so that when we blended the stool it was not exposed to oxygen in the water or in the air. We also fill the gallon jug of previously boiled water (we let it cool of course) with CO2 so that oxygen from the ambient air doesn't re-dissolve in the jug water and kill the anaerobic bacteria. CO2 is more dense than air so it displaces the air on the top of the jar and the gallon jugs.

Oh, and of course we used at least 500 ml of FMT solution; that is what the research says. Along with the stool being as fresh as it can be and from a healthy brother. The research had better results with stool from as close a relative or person living in your environment who is healthy as you can find. And moving around to the traditional positions after the FMT.

It seems like the studies all miss one variable or another. The testimonies of FMT seem to always miss some variable too. I'm sure we are missing some but it was easy to keep the anaerobic bacteria away from oxygen - remember to remove the dissolved oxygen in the water - use at least 500 ml of solution so that the bacteria can get to the far reaches of the colon, plan on multiple FMTs. Why not get as many of the conditions as right as you can and give yourself the best chance of healing? Healing - not just remission, but healing.

Medicine says the trouble is the immune system - take drugs to interfere with the immune system and maybe reduce inflammation. We've lived with that approach for a few years and didn't like it any more than anybody else.

Fecal microbiota transplant says the trouble is your immune system - your immune system hinges on strong bacterial balance in your gut so re-seed the bacteria so you can establish a good community like the people who are fortunate enough not to have bowel disease.

I'm not a terrific writer and I hope other people can run with this and spread the idea of getting as many conditions right as you can for the FMT especially taking simple steps, like boiling the water to remove dissolved O2 (ask your chemistry friends about the difference between oxygen in H2O and dissolved O2) and maybe going the extra $170 step and adding a carbon dioxide atmosphere buffer between the stool and the ambient air. We got enema kits (around $5 each) from a local drug store. Seems expensive, but a whole course of FMTs, even with the expensive carbon dioxide, could be done at home by 70 people for the price of a dose of Infliximab or Remicade.

We are pioneers in all of this, together we have to do the research that the drug companies won't.

Profiling Living Bacteria Informs Preparation of Fecal Microbiota Transplantations
  • Nathaniel D. Chu,
  • Mark B. Smith,
  • Allison R. Perrotta,
  • Zain Kassam,
  • Eric J. Alm
 
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