12-14-2017, 04:27 PM   #901
wildbill_52280
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WANT POOP TRANSPLANTS. HERE'S HOW TO MAKE THEM SAFE, Wired Magazine.

https://www.wired.com/story/patients...ake-them-safe/

“If you ask 99 percent of physicians who do this, they will tell you anything that came along to limit access to stool banks would be catastrophic,” he says. Plus, there’s no guarantee the microbiome even can be successfully be pulled apart and put back together in pill form. “People have spent 50 years trying to come up with synthetic blood and we still have a blood bank," says Stollman. "Who’s to say stool will be any different?”
And this is one reason I put a little more hope into full spectrum fecal transplants. As it has been shown in mice experiments, and in human experiments using whole stool, the more depleted the microbes are, the more resistant the community is in accepting any new species into that community. throwing just a few down there might not stick to well as a cure, they'll just pass on through. But throwing a large diverse amount down there, even though it's a little bit of a "crap shoot", might be the best strategy for the time being.

The first report of cure from Crohn's with FMT was a women who received a large volume FMT through nasogastric tube using 3 donors all in the same day, whereas almost every other experiment using a single donor and enemas took 30-80 FMT enemas.
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12-19-2017, 05:35 PM   #902
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This study is recruiting pediatric crohn's patients to try an oral FMT pill, the pill is made by Rebiotix.

https://clinicaltrials.gov/ct2/show/NCT03378167
01-04-2018, 05:05 PM   #903
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Sere's Health reported an analysis of a recent study on their bacterial pill SER-287 , it's kind of like a fecal microbiota transplant pill, showing that the bacteria was successfully engrafted/implanted in the G.I. systems of the patients and that the patients improvements were related to how well these bacteria were transplanted. The bacteria was confirmed to still be present 4 weeks after the last dose. I'm wondering how long those bacteria will stay and which species they actually are.

https://www.businesswire.com/news/ho...-1b-Microbiome
01-18-2018, 04:15 PM   #904
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I was just reading a new study on IBD microbiome and genetics and they found very little relationship between genetics and the state of the microbiome, this seems to be an important factor in considering causation of the disease suggesting genes have little to do with it and that the composition of the microbiome itself is a force that acts upon the human body. So again if there was a cure it could very well be by manipulating the microbiome composition such as what is being done with Fecal Microbiota Transplants. https://www.nature.com/articles/ctg201758
01-26-2018, 11:07 PM   #905
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Researchers gave a fecal microbiota transplant to a child with tourette's and all symptom's disappeared.
https://www.hindawi.com/journals/crim/2017/6165239/
01-27-2018, 04:59 AM   #906
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I read this in the news too, Bill. I'm still waiting although it seems tempting to go to South Korea, Japan, or China to get this treatment
02-08-2018, 01:44 AM   #907
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5790872/
02-08-2018, 04:43 AM   #908
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I'll be taking that one a bit at a time, Bill. Thanks though. I have also sent off for some CBD drops to see if it helps. Some claim it helps with pain and joints although this is the legal version. Can't get the real stuff as it's too expensive and I don't know anyone that can make the cannabis oil. Let's hope it works.
02-14-2018, 03:41 PM   #909
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Here is a quote which seems to give clues to why performing a fecal transplant might be so difficult at least in IBD, but this was from researchers studying FMT in C. difficile infection. Scientists are wondering to what degree the human microbiome can be separated and put back together, it seems it cannot be separated too much, and that groups of similar bacteria seem to only be implanted at a time. IF you threw a only a few unrelated strains down there it is highly unlikely they would stay down there, so you need multiple similar strains or even the entire microbiome at all at once.

"Furthermore, donor strains within a species engraft in an all-or-nothing manner and previously undetected strains frequently colonize patients receiving FMT."
https://www.genomeweb.com/sequencing...raftment-clues

Another article on the same topic.
https://medicalxpress.com/news/2018-...-flourish.html

Last edited by wildbill_52280; 02-14-2018 at 04:28 PM.
02-15-2018, 11:17 AM   #910
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Would this mean that taking mega doses of healthy bacteria, such as 50 billion Immuprobio, won't take hold? Seems to help for 24 hours but unless I take loads of them they don't have much effect and certainly nothing lasting beyond the 24 hours.
02-28-2018, 12:58 PM   #911
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Would this mean that taking mega doses of healthy bacteria, such as 50 billion Immuprobio, won't take hold? Seems to help for 24 hours but unless I take loads of them they don't have much effect and certainly nothing lasting beyond the 24 hours.
Those supplements aren't anywhere near a fecal transplant, as far as my opinion goes.
02-28-2018, 12:58 PM   #912
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http://www.startribune.com/minnesota...gut/474390953/
02-28-2018, 07:48 PM   #913
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So here is more information that shows the composition of the microbiome is not determined by genetics. This could mean that any disease showing a connection to an altered microbiome is likely reversible with a fecal transplant.

https://www.the-scientist.com/?artic...e-Composition/
03-01-2018, 03:18 PM   #914
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The study results were very surprising—for most of these clinical measures, the association with bacterial genomes was at least as strong, and in some cases stronger, than the association with the host's human genome. These findings, according to the study investigators, provide solid evidence that understanding the factors that shape our microbiome may be key to understanding and treating many common health problems.

"We cannot change our genes, but we now know that we can affect—and even reshape—the composition of the different kinds of bacteria we host in our bodies,” concluded senior study investigator Eran Segal, Ph.D., a professor in the department of computer science and applied mathematics at the Weizmann Institute. “So, the findings of our research are quite hopeful; they suggest that our microbiome could be a powerful means for improving our health."
https://www.genengnews.com/gen-news-...focus/81255542
03-07-2018, 12:10 PM   #915
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Local NPR station feature report on FMT:

http://www.kpbs.org/news/2018/mar/06...es-regulation/
03-07-2018, 02:47 PM   #916
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Interesting. I'm just waiting for them to give it the go ahead for Crohn's. I still expect it to be a long way off, and i'm not young. I have lived with it virtually all my life. I think China, Korea and Japan have/had a poo soup for 2,000 years. They know how to deal with this. Quite how, I don't know. But they have had answers for this length of time, but the west is holding out on us. I have thought about researching Korea and poo soup to see how much it cost and could I go there? One day, we'll be cured.

Probably not before my clogs are popped.
Thanks for the link.

PS, have tried to get out to my creative writing class tonight, and hey, guess what? Yep, I had to turn around at the next village and get in quick for the loo. Mind, I was feeling totally exhausted and ill. I should have known better than to even attempt tonight. Wow, we Crohnies miss out on a lot.
03-07-2018, 08:13 PM   #917
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Mark Davis said FMT is in a state of limbo as it is classified as a drug but can never be licensed as such because the FDA requires every drug to be identical from one dose to the next.

“FMT is not that and it will never be that,” he said, “so they defined it as a drug but a drug that could never be approved.”

Davis said one solution, suggested by other clinicians, would be to reclassify it as a tissue, like blood or bone marrow — something that treats and prevents disease but is never the same in every batch. But, he said, since the product is not composed of human cells, but rather bacterial cells, it couldn’t be defined as tissue by the FDA.

“What I would like the FDA to do is to say, ‘You know what? FMT is not a drug, it’s something else’,” Davis said. “And we should classify it as its own unique thing and give clinicians some more latitude to be able to treat patients with a variety of conditions.”
http://www.kpbs.org/news/2018/mar/06...es-regulation/
03-11-2018, 05:50 PM   #918
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I wonder if I could try this.

Most of my inflammation is located in my rectum, and I don't have Cdiff. I am also on a large dose of remicade.

Last edited by Poppysocks; 03-11-2018 at 06:49 PM.
03-12-2018, 10:10 PM   #919
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Does anyone know if you can be on remicade while trying a Fecal Transplant?
03-13-2018, 05:04 AM   #920
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Poppysocks, have you ever tried rectal tacrolimus? I've read it has good results on rectal inflammation.
03-15-2018, 10:05 PM   #921
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Poppysocks, have you ever tried rectal tacrolimus? I've read it has good results on rectal inflammation.
I have not. Is that something new? I've never heard of it.
03-18-2018, 11:55 AM   #922
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I have not. Is that something new? I've never heard of it.
I don't know much. These are what I had read before:

Rectal Therapy with Prograf Helped Patients with Resistant UC, Study Shows

Patients with resistant ulcerative proctitis, a mild form of ulcerative colitis (UC), respond to therapy with rectal Prograf (tacrolimus) ointment, achieving clinical remission and mucosal healing, according to the results of a small clinical trial.
ibdnewstoday.com/2017/10/17/prograf-tacrolimus-rectal-therapy-resistant-ulcerative-proctitis/

The Clinical Trial
One of the newer medications is the immunosuppressing medication, tacrolimus that has been shown to be effective in UC when taken orally. Unfortunately, the oral use of this medication can have numerous serious side effects. In order to overcome these side effects, the use of topical rectal tacrolimus has been examined. Pilot studies in ulcerative proctitis (inflammation confined to the rectum) resistant to conventional therapies have demonstrated a clinical remission in 75% of patients and although the medication was well absorbed through the lining of the bowel, the levels in the blood were very low and no serious side effects were reported. The findings suggest that this preparation is indeed effective for inflammation in the distal bowel and that the method of administration reduces side effects. Further work, however, now needs to be undertaken to validate the original findings.
clinicaltrials.gov/ct2/show/NCT01418131

The Published Paper of That Trial
http://www.cghjournal.org/article/S1...258-6/fulltext

You can search in the forums for more information. I don't know if this treatment is available to patients right now; but it seems worthy of searching about it.

Like yourself, I have been dealing with a very stubborn rectal inflammation (Crohn's) for a long time, and I am starting a new treatment for it: 6mp + Cimzia + rectal mesalazine. I've already been using max. dose of 6mp, and now adding Cimzia and rectal mesalazine. I'll see how well it's going to work in three to four months.

I find drinking bone broth soup helps with my rectal inflammation.

I have a question for you: Does eating fruits (fructose) increase your rectal bleeding? It does that to me.

Have you tried vitamin E enema? SCFA/butyrate enema?

Last edited by Crohn2357; 03-18-2018 at 12:18 PM.
03-19-2018, 10:57 PM   #923
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I don't know much. These are what I had read before:

Rectal Therapy with Prograf Helped Patients with Resistant UC, Study Shows

Patients with resistant ulcerative proctitis, a mild form of ulcerative colitis (UC), respond to therapy with rectal Prograf (tacrolimus) ointment, achieving clinical remission and mucosal healing, according to the results of a small clinical trial.
ibdnewstoday.com/2017/10/17/prograf-tacrolimus-rectal-therapy-resistant-ulcerative-proctitis/

The Clinical Trial
One of the newer medications is the immunosuppressing medication, tacrolimus that has been shown to be effective in UC when taken orally. Unfortunately, the oral use of this medication can have numerous serious side effects. In order to overcome these side effects, the use of topical rectal tacrolimus has been examined. Pilot studies in ulcerative proctitis (inflammation confined to the rectum) resistant to conventional therapies have demonstrated a clinical remission in 75% of patients and although the medication was well absorbed through the lining of the bowel, the levels in the blood were very low and no serious side effects were reported. The findings suggest that this preparation is indeed effective for inflammation in the distal bowel and that the method of administration reduces side effects. Further work, however, now needs to be undertaken to validate the original findings.
clinicaltrials.gov/ct2/show/NCT01418131

The Published Paper of That Trial
http://www.cghjournal.org/article/S1...258-6/fulltext

You can search in the forums for more information. I don't know if this treatment is available to patients right now; but it seems worthy of searching about it.

Like yourself, I have been dealing with a very stubborn rectal inflammation (Crohn's) for a long time, and I am starting a new treatment for it: 6mp + Cimzia + rectal mesalazine. I've already been using max. dose of 6mp, and now adding Cimzia and rectal mesalazine. I'll see how well it's going to work in three to four months.

I find drinking bone broth soup helps with my rectal inflammation.

I have a question for you: Does eating fruits (fructose) increase your rectal bleeding? It does that to me.

Have you tried vitamin E enema? SCFA/butyrate enema?
i tried a mesalamine enema for a little while about 3-4 years ago, I don't think it helped very much though. I am only on remicade right now.

I've only recently been flaring up. I've been on remicade for a very long time (15+ years), and I've been trying to modify my diet the past 7-8 years.

I was in pretty bad shape a few years ago until I discovered sushi. Sushi has been my miracle food (only the most plain sushi). It's very expensive but its held me in check and has actually helped my stools greatly (honestly to the point where they were the best they've ever been since I was diagnosed). When I'm feeling bad I stick to sushi and white rice and chicken for dinner. I've been getting very cocky though the past couple months and have been eating many things I shouldn't be (red meat, bread, espresso) and have seemed to come down with a flare. My BM's are no longer looking good and I can't seem to get back on the right track, even while sticking to my sushi, white rice and chicken diet.

I usually stay away from fruits, and rough veggies like broccoli. I try to eat things that are soft and not very crunchy. When I'm doing well though and my BM's are looking good I can usually sneak a banana in here and some apples there, and I'm usually fine.

I will ask my GI though next week about the rectal tacrolimus. It seems like an interesting treatment because it seems very specific to that area, and not something so "systemic" like remicade.

These fecal transplants though still interest me, but I feel as if these are things people that are on imunosuppressant drugs should not take.
03-20-2018, 06:57 AM   #924
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i tried a mesalamine enema for a little while about 3-4 years ago, I don't think it helped very much though. I am only on remicade right now.

I've only recently been flaring up. I've been on remicade for a very long time (15+ years), and I've been trying to modify my diet the past 7-8 years.

I was in pretty bad shape a few years ago until I discovered sushi. Sushi has been my miracle food (only the most plain sushi). It's very expensive but its held me in check and has actually helped my stools greatly (honestly to the point where they were the best they've ever been since I was diagnosed). When I'm feeling bad I stick to sushi and white rice and chicken for dinner. I've been getting very cocky though the past couple months and have been eating many things I shouldn't be (red meat, bread, espresso) and have seemed to come down with a flare. My BM's are no longer looking good and I can't seem to get back on the right track, even while sticking to my sushi, white rice and chicken diet.

I usually stay away from fruits, and rough veggies like broccoli. I try to eat things that are soft and not very crunchy. When I'm doing well though and my BM's are looking good I can usually sneak a banana in here and some apples there, and I'm usually fine.

I will ask my GI though next week about the rectal tacrolimus. It seems like an interesting treatment because it seems very specific to that area, and not something so "systemic" like remicade.

These fecal transplants though still interest me, but I feel as if these are things people that are on imunosuppressant drugs should not take.
Yes, tacrolimus enema looks very good both for effectiveness and safety. If tacrolimus enema is not a available as a treatment yet, then you might want to give mesalazine enemas a longer try again. It takes time to show its full effectiveness.

I remember your thread in the diet section of this forum about how sushi and sushi rice were helping you. I found that intriguing at that time.

Diet is definitely a huge factor. I know what you mean by getting cocky after a while and paying the price for it. That's why after similar experiences like yours I started to stick to a diet no matter how I feel.
This is the diet I've been following: https://www.thepaleomom.com/start-he...mune-protocol/
I think it is a good idea to do an elimination diet to know how your body reacts to certain foods.

Regarding bone broth, its effects are almost too good to be true. It decreases the intestinal inflammation like a powerful medicine. You may be surprised if you try it. If you want to try, I suggest you to make it in your house. It's not hard to prepare. Make sure it comes off as jelly-like after you finish cooking. I use a recipe similar to this one: http://whole9life.com/2013/12/whole9-bone-broth-faq/ You don't have to add all those vegetables in the soup. I only use bones, salt, water, vinegar and carrots. I also make it in pressure cooker to make it quickly.

I too find white rice to be very soothing. It greatly decreases diarrhea and never hurts my gut. It's a good carb source. I eat it at every meal.

If you are really struggling, then you can try other treatment options, like Stelara or Stelara+6mp or Humira etc. These variations. I'd still add the rectal mesalazine though.

Another thing you can try is a short course of antibiotics like flagyl, cipro (if you can tolerate this, it can cause serious tendon problems).

Fecal transplants seem more effective for UC patients than Crohn's patients.

If you want to learn more about treating rectal inflammation you might want to ask your questions in the Healingwell UC forum. Folks in there have more experience and knowledge in regards to this issue than Crohn's patients. They might give you new ideas.

Last edited by Crohn2357; 03-20-2018 at 03:10 PM.
04-01-2018, 09:44 PM   #925
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https://denver.craigslist.org/com/d/...549114967.html
04-02-2018, 05:34 PM   #926
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I'm intrigued by the idea of using someone with great healthy stool to help others with our health concerns be able to be healthy too. I'm a little frustrated that doctors in Indiana do not seem to take IBSD and these issues seriously. I don't even see my doctor anymore and have been told by my regular doctor I need to go back. I know I do but they don't help me and I'm just wasting money so why go see them? Anyways I also tried the Everlywell blood test to see if there were foods that were making my IBSD worse and I had several show up and now I do not eat gluten or milk products. I know I still have IBSD but at least I know some of what triggers my problem as well.
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04-03-2018, 01:02 PM   #927
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I'm intrigued by the idea of using someone with great healthy stool to help others with our health concerns be able to be healthy too. I'm a little frustrated that doctors in Indiana do not seem to take IBSD and these issues seriously. I don't even see my doctor anymore and have been told by my regular doctor I need to go back. I know I do but they don't help me and I'm just wasting money so why go see them? Anyways I also tried the Everlywell blood test to see if there were foods that were making my IBSD worse and I had several show up and now I do not eat gluten or milk products. I know I still have IBSD but at least I know some of what triggers my problem as well.
There are a few studies using Fecal Microbiota Transplants to treat IBS showing some success, here is one of them. https://www.ncbi.nlm.nih.gov/pubmed/28628918
04-06-2018, 11:24 AM   #928
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Yea, it's kind of weird Fecal Transplants were only regulated by the F.D.A. when they were proven effective in C. difficile in a controlled study in 2013, not because they were concerned with our safety, otherwise FMT would have always been restricted. Either way, there really are safety concerns.

https://academic.oup.com/ecco-jcc/ar...8/2/179/596455
04-06-2018, 12:22 PM   #929
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I may have posted this already but FMT seems to have cured epilepsy in one patient. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5442093/
04-18-2018, 03:21 PM   #930
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Fecal transplants improve symptoms of cognitive dysfunction in patients with advanced liver disease.
http://www.iflscience.com/health-and...tive-function/
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