[acureisoutthere]

Hi,

I used to have IBS-D. After many, many months of struggling, I found out about the FODMAP diet. This helped me, if I was realy careful to avoid certain foods. It made life better, but I still couldn't eat normally, and I still would have occasional flare ups.

I began researching FMTs (fecal microbiome transplants), and the Human Microbiome. I spent a year researching this. The more I studied, the more I realized this is something I needed to do.

I had tried many probiotics, but at best they only gave a small temporary help, not the cure I was after.

So, I studied FMTs. I found that Dr. Brandt in New York only achieved a 50% success rate for IBS, while success rates for FMTs for Clostridium Difficile were as high as 80 to 90 %. So, I asked myslef why, what is going wrong. I finally concluded it was the procedure. They were doing something wrong.

So, I changed the procedure. I did not use the blender method to homogenize the sample with sterile saline, to make the slurry for the transplant. Instead, I used a zip lock bag, added a little sterile saline and homogenized it in there. I also had sterile surgical gloves on. An easy and clean procedure.

I also tried to reduce exposure of the sample to air, as much as possible. (this is another good reason for not using a blender) Some intestinal bacteria start to die when explosed to air.

I received the sample from my donor; fresh, warm, and in a zip lock bag with the air squeezed out. I then kept the sample at body temperature, and dark until I could perform the procedure. Zip lock bags are vey nice here. The idea is to keep these helpful bacteria in as natural a state as possible ; warm, dark, and not exposed to air, or a spinning blade at thousands of rpms.

I can now eat all of the foods that used to cause me so many problems. My bowel movements are normal. I beleive that microbiome transplants and understanding the human microbiome are going to change medical care as we know it.

For the complete procedure I followed you can email me : [email protected]

It worked. If you can change a diaper, you can do this. It was that easy.

 

[jaumeb]

Congratulations for your success and thanks for sharing the story.

 

[acureisoutthere]

Thanks Jaumeb,

It's for real. I'm so happy about it I could explode. It's that nice !

At first I wasn't sure if it took, as I tried a gluten free diet after the transplant (not easy, but do-able). Anyway, after a few weeks, I slowly tried the foods that used to cause me problems. I still remember when I tried bread. Took a lot of courage as bread really made me pay for three days the last time I took it. Wasn't fun. Anyway it worked, I could have bread again ! You don't know how much I missed bread !

I tried other foods that were triggers, and they all worked. Then, I tried milk, another scary one, as I couldn't even have a tiny, tiny piece of cheese, or any milk, even soymilk, before the FMT. So milk was a little scary to try. I finally tried a little. It didn't flare up, but things weren't completely normal if you know what I mean. So, I waited a few weeks, then tried a little tiny bit of cheese, it was OK, then I tried a little more, and it was OK. A week later I tried 1/2 cup of milk in the AM and 1/2 cup of milk in the PM. I did this two days in a row, and NO problem. So, I would have to say I have milk back too. That means everything is back. And my movements are fine. It is so nice it's indescribable.

Well, enough about me. Sorry. The reason I came back here was to try to help others. So, if you want help, I'm willing to try.

I researched and studied this pretty intensly. I guess I just like to read, and I like to learn. That's kind of how I am. The subject of the Human Microbiome is pretty fascinating to me.

I honestly, in my heart, feel that this can help so many people. I know it's a little of phschological leap to do an FMT. At least for me it was. I mean it took me quite a while to get up the courage to try it. And then finding a donor, that was a challenge too for me. I finally did get up the courage. Looking back, I'm so glad I did. I found my donor; a person with an excellent phschological profilem, excellent body mass index, and of course normal bowel movements, and no exposure to aids, hepatitis, ect. Two hours away from me, but I worked that out.

Sorry for rambling on again. I came here to help others. I want others to know how this feels. I want others to have normal lives again.

So, I'm still waiting.

 

[jaumeb]

I have to admit that i am scared of catching a bad bug in the process. That's the only thing that stops me from doing it.

 

[acureisoutthere]

I understand. Perhaps you can find a Gastroenterologist that will at least help you test your donor. Perhaps if you tell them you're going to do it anyway, they might decide to help you out and have your donor tested. Of course I don't think insurance would cover it, but it is a valid concern none the less.

I knew my donor enough that I knew their lifestyle and history so that it wasn't as big of an issue for me. I just decided one day to sit down and talk with them about the human microbiome and help them understand what it really is about. How my microbiome is disturbed or out of balance, and the bad guys have kind of taken over, and how I want to transplant a microbiome that is from a healthy person with no problems and get rid of mine which are causing me all sorts of problems. There are some nice videos on YouTube about the human microbiome that were helpful in this process, and got them to watch. Once they understood what the microbiome was really about, they were glad to do it because they knew how much this affected my life, and how much I wanted to get back to normal.

There is a study in New York for IBS and FMTs. Can't remember the start date right now.

Hope this is helpful.

 

[jaumeb]

Thanks for the additional information. Probably fmt will be more popular in the future and everything will be easier.

 

[jaumeb]

Had you been tested for c. Difficile? Is there any chance that your ibs was in fact a c. Difficile infection?

 

[acureisoutthere]

Hi Jaumeb,

C. Diff. would be ruled out. I seen two different Gastroenterologists before my transplant, and neither one said anything about C. Diff. based on my symptoms. I had a colonoscopy and an endoscopy by the first doctor and no problems were noted in the intestines. Some minor redness in the stomach was noted, which was diagnosed as GERD. I am now taking Rantidine for that. Thinking about that, and with my understanding of the human microbiome, it's logical to conclude that there is some bacteria imbalance in my stomach. Not sure how I would go about fixing that one. Fixing my large intestine was easy. But, the stomach has a different flora of bacteria, and would require a new approach also.

Clostridium Difficile is a really nasty imbalance of the bacterial flora. It kills people. They have diarrhea 20 to 30 times per day. It is usually associated with antibiotic use for some other problem. They get rid of the first problem but then the patient has this really nasty intestinal problem. More and more doctors are doing fecal microbiome transplants to fix this problem. It heals them. They walk out of the hospital in a day or two, feeling fine. These transplants literally save lives. They work. I have yet to read about any problems associated with the procedure, except for one case of a muscosal tear, and this was from the colonoscope tool itself, ( a normal, extremely small risk of having a colonoscopy).

I read this in an article yesterday : "This year, researchers at the University of Alberta reviewed 124 fecal microbiome transplants and concluded that the procedure is safe and effective" [Tending the Body's Microbial Garden]

http://www.nytimes.com/2012/06/19/science/studies-of-human-microbiome-yield-new-insights.html

This is a VERY nice article, and explains a lot about cutting edge knowledge of the microbiome and transplants.

Also, you can also go to Youtube, and search for The human microbiome and for Fecal Microbiome transplants

There's a lot of people that understand this already, even if it is very new to others. It's a process of educating oneself.

I'll say this; if for some reason in the future (antibiotics for some problem) that I come down with intestinal problems again, I won't be hesitating to call up my donor, and ask them if they would help me again and donate their poo, so I can have my health back again.

(and btw, my donor was thrilled to hear that my transplant worked !). [If you're from Wisconsin, contact me]

 

[jaumeb]

Thanks for the explanation. Unfortunately I am very far from Wisconsin so I cannot use your donor.

 

[Jen37]

acureisoutthere,

I am so glad you were able to get better with the FT. I know not many hospitals are even doing it or will even consider it. I live in Chicago and am interested in this. I have had gut issues for three years now. They have been pretty much under control up until a couple weeks ago. I had one bout of diarrhea a couple weeks back and have not had a normal poop since. I go once a day usually, but have the feeling like I always gotta go. My stool is always in pieces and very soft. I also do not feel like I empty all the way. I fear diarrhea due to the fact I also have IC ( Interstitial Cystitis) and am Very prone to getting UTI's. I literally have to shower after every single BM and make sure I am super clean or I get a Urinary tract infection. IC is a very debilitating disease.

I know a lot of gut issues are due to guy dysbiosis( overgrowth of pathogenic bacteria). I take loads of probiotics already. My GI doctor is in a Huge teaching hospital here and I asked him about the FT. He said they were only doing studies with it at this point and only on people who had C-diff that was not responsive to the antibiotic treatment they have for it. He said there was an issue with risk due to different bacterias. He said everyone has a different set of bacteria in their colon. He said something about one person having a bacteria that their body is fine with whereas that bacteria could be very harmful to another person. That is why they will not offer it. To bad because I think it could help a whole lot of people.

Did you do your FT all by yourself? How did you go about getting a donor?

 

[acureisoutthere]

Hi Jen37,

I am sorry to hear how this affects your life. It must really be a challenge to deal with more than one problem at once. Wow.

I have a hunch that your IC is connected to your human microbiome, and is an imbalance of bacteria in your urinary tract. However, I have not yet read anything on this. It is just a hunch at this point.

Please, start learning about the human microbiome. There are good videos on Youtube. Google it also. Do your research please.

Become and expert on the human microbiome.

Your GI doctor is correct, FMTs can only be conducted on an investigational basis by a doctor. So, your doctor can't help you unless he does it as part of a study, and meets the filing requirements ( quite a bit of effort needed for this).

You can go to clinicaltrials.gov and learn about current trials using FMTs.

Jen37, you have more than one issue going on, I would suggest you contact one of the best doctors in the world that is doing FMTs. : Dr. Thomas Borody, and get his advice, please. I have the utmost respect and admiration for him. He has more experience and expertise than many, many other doctors in regards to FMTs. Please get his advice. Perhaps you will need to take special precautions, or extra steps, beyond what I have used.

If you do a home FMT, please, please have your donor tested, if at all possible. Do this please. The PowerofPoop website has good information on donor selection, and so does The Fecal Transplant Foundation. Your doctor is informed and hopefully is willing to help you test your donor.

I did my transplant all by myself. I studied videos. I read about doctor's procedures. I read everything I could get my hands on, before I did this. I tried to figure out why FMTs for IBS were not always successful.

I was very careful in selecting who I would approach to be my donor. It's important. They need to be in excellent health, both psychologically and physically. You want someone with a normal weight, nobody that is overweight. My donor was slender, and after my transplant, I lost 13 pounds, without even trying. Take your time, make the best choice possible. Have them tested please.

If you don't know them well enough to know their history already, then have a long talk to make sure they are the ideal candidate. Be choosy. Read the donor selection criteria from The Fecal Transplant Foundation again.

 

[Jen37]

Acureisoutthere,

Thanks for the response. That is just it, I do not think any doctors here in my area will be willing to even go along with this. Even the studies they are doing are not for IBS in terms of the FT, they are more so for C-diff and I think they were doing a study for IBD. Do you have to find a donor yourself? I would not even know where to find one who is healthy enough. I mean I have my dad who is 70 years old who is pretty healthy, he is a little overweight. He has not abused antibiotics or medications of any kinds though. My dad takes NO medications and has not taken an antibiotic in years, I mean 15 to 20 years. I am not sure though. He uses the toilet like three times a day but claims he was like this since he was young. He has no bowel or gut discomfort ever. In fact 4 years ago my husband brought home the stomach flu( he is a teacher) and I got it, my son got it, but my dad did not. He was the only one in the family who did not catch it. I think he is pretty hardy as far as health is. He does have high blood pressure but is working on it using natural things like CoQ10, diet and such.

Oh yes, I am certain my IC of the bladder is due to overgrowth of pathogens due to an immune deficiency of some sort. If fact I was on low dose antibiotics a couple years back to help prevent UTI's I was getting. My IC got 95% better while on antibiotics. Sadly it is NOT good to take antibiotics forever and they cause a whole host of other issues. But yes, I am very aware of the microbiome . I also believe lots of bacteria and viruses have mutated into much stronger organisms. They have developed Biofilms in order to be protected against antimicrobials and some cannot even be detected with the primitive testing that is still used today. I also think leaky gut is a Huge part of chronic illnesses ( IBS, IBD, IC etc..). It is so very complex.

Back to the FT, would this Dr. Thomas Borody be able to help me find a physician near me who does these FT's? I know it will be very hard to find any doctor over here near me. I live in Chicago and you would think there would be someone doing these over here. My friends mom came down with C-diff and almost died!! The gave her vancomycin which did help thankfully. My friend enquired about the FT and they said they did not offer it, and this was at one of the top hospitals. I mean they were probably literally going to let her mom die if the Vancomycin did not work! I don't understand why they are not offering FT for more gut issues if they work so well. I know they did studies with C-diff and FT and they had a very high success rate, so why do they not offer them all over?

I am thinking if I ever decided to want to try a FT, I would be on my own as no one really offers them it seems. My doctors are not very informed on this FT at all. My gastro doctor knows about them as they were doing trials in the hospital where he is at for C-diff. However when I brought it up to him he said they wont do it for IBS because there is no proof that it would work. He says it probably could help a lot of people, just that they do not have the jurisdiction to do it or recommend it at this point. He also said there are risks with it in terms of picking something up( a different pathogen that may be harmless to the donor, but could be potentially dangerous to person on the receiving end). So I may have a problem finding a doctor who would even be willing to help me on this matter. I think it makes the utmost sense. My urologist is even doing a study to look into the microbiome when it comes to IC of the bladder. There are so many variables to these chronic illnesses. I also think anyone who has IBS, IC or any chronic illness also has an immune deficiency/dysfunction of some sort that is fueling the disease state.

I am very interested in the FT, I just am not sure where I would even start or where to go. Would you suggest calling this Dr. Thomas Borody? Where would I get his contact info? Do I just google it?

Thanks for the advice and info.

 

[acureisoutthere]

Dr. Brandt is doing a study for IBS using FMTs. Not sure the start and stop dates. He is in New York.

I found my donor myself, after careful analysis.

I haven't read anything about mutated bacteria or viruses.

Doctors, in the United States, can't treat for IBS. unless it is part of a study, and meets all of the paperwork/filing requirments. So, Dr. Borody most likely wouldn't be able to help you on that subject.

FMTs are very new. There is a doctor in Madison, and one in Duluth, one in Minneapolis, and a couple in Rochester that are doing FMTs. Don't know of any in Chicago. Like I said, please go to the Powerofpoop and The Fecal Transplant Foundation websites. They are VERY informative.

The only doctor I know of doing FMTs for IBS, is Dr. Brandt. in New York, at this time.

People do die from C. Diff. Quite a few. Many doctors have never heard of FMTs, or the Human Microbiome. It is that new. Yet, some doctors do know about this and are saving lives.

Dr. Borody has told me that : he only achieves a 70% success rate with one FMT treatment for IBS, and 30% don't have relief of symptoms, no matter what he does, therefore, when he treats IBS, he usually does several different infusions to achieve success.

Dr Borody is curing IBS, using FMTs, with several different infusions. Your doctors need to do more homework. It is all about

the protocol.

Dr. Borody has told me that: "he was overwhelmed at how well I have figured out what has to be done". " My protocol, is remarkably similar, to his". I was quite flattered, but the truth is I have built on the experience of others, and just made some very important modifications to protocols, that I have read about

I think you are correct in concluding that at this point in time, in Chicago, you will not find any doctor that may help you.

Perhaps, you may be lucky enough to get some antibiotics to knock down the bad bacteria. Dr. Borody does use antibiotics to knock down the bad bacteria, and He is more successful than any other doctor, in the entire world. He is that good. He's been doing this for 25 years. Most gastroenterologist had never heard of such a thing 20 years ago, much less helping people.

Please, tell me more about the study your urologist is doing for IC and the microbiome !

You can Google Dr. Borody and get his contact info, he is in Australia.

If you want more info on the protocol I used, you can email me. [email protected]

 

[jaumeb]

I am amazed that Borody sent you a message. Thanks for sharing.

 

[acureisoutthere]

Thanks Jaumeb,

I was pretty surprised too.

I had written him a letter explaining my protocol, and the results, in the hopes of furthering understanding of what works and what doesn't, and that I lost weight with out even trying.

I truly look forward to the day that any and every gastroenterologist understands the correct procedure to treat a host of diseases that have been connected to the microbiome, by using fecal microbiome transplants. Think of the lives that could be helped ! We are witnessing a radical shift in the treatment of disease.

The last time I had researched his procedure, I learned that he was using an antibiotic before the procedure, so I learned this from him. But at that time, as I remember, he was using the blender method. He is pretty impressive with his understanding, and his ability to cure diseases.

I'll make a new post, to better share it with the community.

 

[Jen37]

acureisoutthere,

Thanks for the reply. I sent you an email. Hope it gets to you, make sure you check your spam. Sometimes Yahoo likes to throw emails in there, at least for me it does sometimes.

 

[Jill_H]

Wow, I'm truely impressed! I feel like there is hope again!

 

[shet-everywhere]

 

[MaximilianKohler]

So you only had to do it one time? How long has it been since you did it? I've heard of others having to do it continually, like with probiotics.

The main bottleneck here is finding a good donor :/

Also, you should put the link for this thread in your signature so every time you post people can see how you got cured.

 

[acureisoutthere]

Yes, I only did it once. I did the procedure the first part of April.

I agree, finding the right donor is a challenge.

Thanks for the idea about the link, I'll look into it.