counting success stories with fts (continued)

*sigh*

Your GI is dead wrong, notsosicklygirl. Go to dollars for doctors here and check her affiliations first. For the most part, GIs are not well versed in statistics that go outside the conventional paradigm. Many clinics who administer the transplants in the proper fashion report as high as a 70% success rate. Check Borody's case reports for people who were facing the bag.

Among the 60 or so C. diff. patients that have followed his directives, R David Shepard, a gastroenterologist in Tampa, says he hasn’t had a failure yet. Until the FDA forced him to put his ulcerative colitis programme on hold, he had achieved a success rate of about 70 per cent for that condition, he says. Marion’s daughter was the first.

source.

No drug or therapy comes close to 70% for ulcerative colitis or 100% for c. diff. Don't know about other conditions like crohn's, but this is what the data says for UC.

The reason FMT fails is three fold:
1) People don't screen/analyze their donors enough. A large majority of the population, at least in the US, have strong counts of pathogenic bacteria, as well as firmicutes and bacteroidetes imbalances that need to be addressed first. Male donors, on average, have less pathogenic bacteria. The donor has to be absolutely perfect, but I understand that this isn't always possible. We must strive to get the best possible donor.
2) As detailed in Dr.Brigg's protocol (see PDF), the chance for success increases by a large margin if an anti-inflammatory protocol is followed before, during and after the transplant. For Michael Hurst and Dr.Briggs, this was the temporary incorporation of lesser antiTNFs like wellbutrin, as well as the elimination of grains and other inflammatory foods. This also applies to the donor. Absolutely no junk food for the donor. Michael Hurst mentioned somewhere that his donor ate a no-nonsense diet that included fermented foods such as sauerkraut. This also includes de-stressing from job and taking time off during this. Stress will play a huge role in the disease rearing its ugly head.
3) Stick with it. Stick with it. Stick with it. Bacteria will not exactly colonize in a day or even a week. For Hurst, it took 6 weeks of treatment to cure his UC.

Bottom line: Don't take everything at face value. Your doctor is in the business of making money. Investigate these matters yourself, and thoroughly at that, before some clown in a white coat suggests getting a bag for your condition.

Post Edited (Guardian7) : 5/11/2014 5:05:19 AM (GMT-6)

In the future please include a login and password for medscape. I used to follow them, but they've kind of changed their affiliations so I have not kept in touch. I have managed to get one for those that want to go through it. Try login - bugm3not and password - NevarBug.

Going through the study, I see a couple flaws:
1) The whole is greater than the sum of its parts. Success is never guaranteed if strict adherence to protocol is not followed. They also did not do FMT via colonoscopy, which should be the gold standard for any pancolitis diagnosis.

Also, what about other tools like prednisone, mesalamines and antiTNFs to reduce inflammation? Nothing else was used from my understanding.

2) What were the screening requirements of the donors? Who were the donors?
3) Time, time, time:

A number of patients who subjectively reported improvement but did not achieve remission continued on treatment, and approximately one-third achieved remission with extended treatment. This suggests that the study treatment period could have been too short, said Dr. Moayyedi.

I'm not sure if the study was constructed properly:

"We have done pilot studies where this seemed to work," one audience member explained. "The problem is that we need to keep giving it, and we cannot colonoscope everyone, all the time, to administer it throughout the colon. It's indeed interesting to us that the people for whom fecal transplant is effective are not just those with distal disease. In patients with pancolitis, rectal enemas can induce remission."

I wonder what Tracy Mac has to say about this and how she will break this one down, as she's the expert. :)

Post Edited (Guardian7) : 5/10/2014 3:11:00 PM (GMT-6)

Another interesting note, however, is that in addition to the study I posted about a few minutes ago, the same lab is working on characterizing "responders" and "non-responders" based on bacterial phenotype. This, I believe, could be the most important part of the study because it could lead to optimization of the protocol and elucidation of which bacteria are most important/what the ideal microbiome should look like.

Self-reporting about FMT for UC is a highly unreliable statistic.

Guardian7 says:

“No drug or therapy comes close to 70% for ulcerative colitis ...”

This is, unfortunately, misleading. There are no studies claiming 70% success rate for treating UC with FMT.
Some 'report' that they have had success with FMT, but as yet there are no proper studies, other than those such as on medscape, showing poor results.

Even the limited anecdotal reporting on this site, that Sharron has gone to the trouble of collating, does not reflect a 70% success rate.

Borody only claims the treatment to be 'promising', and he does not give out information about all the cases that have failed.

Guardian7 says:
“Bottom line: Don't take everything at face value. Your doctor is in the business of making money.”

Borody is a doctor that has a vested interest in his treatments.

FMT for UC is not something that ought to be promoted as having a 70% cure rate, as that is very misleading. While FMT has a long history of benefit for C. Difficile treatment, for UC it is still a risky procedure with highly variable outcomes.

Please take care with yourself Sharron. Good luck.

Finally I see a productive debate which might lead to an enrichment of our knowledge on fts. Just to let you know, it's not always pleasant sharing such private information with the rest of the world daily. I do it because I believe that many of us who've had uc for a while now have figured out that we can't completely rely on the information provided to us by research funded by these money grabbers (pharmaceutical companies) and their drug dealers(MDs).

I agree with Guardian, not all of the GI are alike. A few months ago I emailed Prof. Lawrence Brandt and asked him to perform fts via colonoscopy in his clinic in NY. He kindly explained that unfortunately the FDA does not allow fecal transplant to be done legally outside of an approved clinical trial and that he was only working on C difficile. He continues by writing that there are many patients who have tried self-administration of fecal enemas and who have good results. He recommended I start by reading the Silverman's article. I think many of us can agree that Dr Brandt is one of the most, if not the most, informed and experienced doctor with fts. I believe that there are many more GIs out there, like Dr Brandt, who really want to help their patients but feel frustrated realizing through the years of their professional career the nature of their jobs. My GI for example believes in the treatment and cannot understand why we haven't heard from the health board yet.

Ambling, I know the self-reported information we are gathering here is not 'scientific' but it is much more accurate than anything else gathered by someone out there whose sole interest is to get richer using our misery. To be honest, I'm quite disappointed, as I was expecting much more data to be gathered by now but perhaps we can think together how this can be done more efficiently. So far I've restricted the list to only people who asked to be added because I believed it would be decent to keep up with their wish and also it would allow them to keep updating us on their condition. However, I suggest that from now on I add any other success or failure stories which is or has been reported on HealingWell on the other threads. Could you please all search for it. True, we didn't get to the 70% success yet but we only have little information and anyway we can already see certain trends.

Notsosickgirl, I think Instead of criticizing what we're doing here perhaps we can think about how to improve it. I agree with you, we should have more data from participants on our list such as whether c.diff was diagnosed or data about the bacterial phenotype, as Marauder93 has mentioned. I personally had done the basic tests which Dr. Brandt recommended shortly before starting the fts and was found negative for c.ciff.

After 14 years of this misery, If I'm successful with fts I would love to know that many of you are following this path. On the other hand, if I fail, I would love to know that my personal story has shed some light on the important criteria needed for the fts to work. So, as you've probably realized, despite the myriad obstacles, I'm far from giving up my hopes on fts.

Finally, thank you all for your concern and care.

Wishing you all a full recovery.

Post Edited (sharron19) : 5/23/2014 4:35:34 PM (GMT-6)

Sharron-

That was a well written response, which no doubt took you some time to write. You are clearly as passionate about this issue as I am.

What do the doctors who claim successes have to gain from this? Are there third party affiliations reimbursing them for these reports? No. Not even a cent. That's what I don't understand about it. Borody was paid nothing to write up his case reports, as no pharmaceutical company was involved in it. That very case report saved Michael Hurst from surgery and now he's back to normal and no longer posting here. Borody did it for the greater good. Some of us still do have that capacity for altruism, though if modern medicine is an indication of anything, the world is slowly changing to be entirely self-serving.

Looking up the data on dollarsfordoctors for some of my past doctors and for a top university one that everyone recommended, it's easy to see why I was told to take biologics without second thought. With that kind of dough companies are giving to white coats, we are starting to sell our souls.

This isn't about helping patients anymore - it's about ethics and integrity, which doctors lost a long time ago IMO. And this university doctor I visited made thousands, not hundreds, from pharmaceutical companies in kickbacks. He also attended luxurious all-expense paid trips for some of his speaking engagements. This is completely unacceptable in the realm of medicine. Hippocrates would commit suicide in despair if he saw some of the things going on today. The sick are being exploited for monetary gain and I don't like it one bit.

Going back to fecal transplants-

Doctors are starting to recommend the procedure because it is safe if one takes the proper steps to do it. I think some people are acting like we're going to a needle exchange program, asking some random druggie for their poop and injecting it without second thought. I can most definitely assure you it is not like that.

I am so sick of all this bullcrap of people calling me out and telling me I'm misleading people. Some people really have nothing better to do than rag on other people. What people don't like about themselves, they rank on others instead. I know people like that and I avoid them like the plague.

I'll just leave with a joke:

What do they call "alternative" therapies that work? Medicine.

Update:
My son is still not feeling great. I took him to see his doctor yesterday. She suspects he has Infectious mononucleosis (kissing disease) and wants him to do a blood test and a couple of stool tests. I looked it up and he definitely has the right symptoms of fatigue, a headache, slight fever sometimes, a sore throat. He just always have a Diarrhoea reaction to anything. According to Wikipedia "it can only be contracted through direct contact with an infected person’s saliva". So I think doing fts is safe! Hopefully he will manage to go and do the tests today and I will try see if I can get him tested for Clostridium Difficile as well.

Also I will try to get an appointment to see the GI and see what is happening with the permission we are after.

Guardian, as always, thanks for your great support.

That's it for today. I started my usual clear liquid fast on Saturday evening and I am off to work now.


Thanks for your support Guardian.

887

Post Edited (sharron19) : 5/11/2014 9:54:53 PM (GMT-6)

Sharon.... wish I could hep ....really do...could never advise medically don't know that side of it at all...have read stacks of uc stories so I think the food result might just be a miracle for loved one...all I can say is that in many cases of positive result for uc people I think that people sort of stumble about in the dark and suddenly find by accident or the web something that works for them... uc is really an odd bod thing like that why is it that things can work for one person and not the next person all I knew was that loved one abondened all good eating senswe and wallowed in the rubbush take away area ...suddenly was sick...now wirh good eating and avoiding sugars wheaten glutten dairy foods and acid foods massive reduction in symtoms 80 percent reduction so far...lots of sun and strong exercise plus warm concerned loved ones to help who knows...by the way loved one did a course in big city and while there ate Tyland food...UC abated in one week...we thought uc finished...another person wrote to say same result but no Ty food in our small town...what is in that food...same result when loved one went for holiday there ...no uc for three weeks...back to Oz food back to uc again...Sharon get on net to see hundred of stories like this...one will work but never never give up there will something there for you....

One thing that I would add here is that the pathology of UC is quite complex (clearly...since the causation is yet to be determined), so limiting the treatment plan to FMT alone is likely not to address the several aggregate aspects of the disease. This is one of the major weaknesses of any study - they want to study the effects of the FMT in isolation and that is just not going to provide the holistic treatment that is needed.

I am currently following a process posted on this site by Dr. Briggs (not an MD), and thus far I am seeing good results. FMT is a critical part of the process.

In order to get me out of a few month flare, a flare that subsided during a 2 month stint on predisone and then came right back, I am doing the following:

- My diet is completely grain free, and very very low on processed sugars. Honey at the most. I mainly eat poultry and fish with cooked veggies, and rice for resistant starch.
- The doc treated me with Vancomycin while we waited for my stool tests, which came back negative for cdiff and other parasites (although that doesn't say anything about a biome disbalance...which is known to be present in UCers).
- I took this opportunity to begin home FT's using my wife as a donor. Simple enema procedure.
- To heal and thicken the epithelial tissue I alternate FMT days with days where I use a rowasa enema spiked with Phosphatidyl Choline. Keeping the inflammation at bay through the FMT process is essential!

All these things together...paired with life being relatively stress free right now are finally showing results. My stool is solid although not completely formed quite yet, and I am only having one BM per day.

The concept of an FMT isn't the smoking gun by itself but I think it is a key part of the apparatus.

Guardian7 - Agreed!

I wasn't able to access the study. Did they begin with anti-biotics? I think the main aspects missing from most FMT studies is that:

1. They take fellow UCers that are flaring quite badly - so the bacteria added likely add (or at least don't do much to help) to the inflammation caused by translocation through the damaged tissue.

2. They don't start with antibiotics. The subject's colon is in complete disbiosis and not able to provide a stable environment for the new bacteria - It's like trying to grow a bed of roses on the same patch of land that already overrun with crab grass. There are quite a few parallels between gut ecology and the ecology as we see it plants.


On a positive note the concept of FT's to help with rebalancing the biome is gaining a lot of traction so experiments can only improve from here on out.

I have some bad and good news. I've managed to see my GI in the hospital. She said "I have news which you are not going to like..." To put it short we didn't get the permission from the health board. Since I'd had no much expectation, I wasn't much disappointed. She spoke about the requirement of the board for certain regulation, having to conduct a large experiment, the lack of evidence, the risk, etc. I realized I wouldn't understand her so I moved quickly to talk about my donors and the option of doing enemas at Home. She agreed to meet them and tell them it's okay to go ahead with fts! First I thought I misheard her. I hope they haven't changed their mind about it and that they'll be willing to meet her. She doesn't work privately and she only see patients on Mondays mornings. I have to act quickly before she changes her mind. I'll try to speak with them tomorrow evening. I feel embarrassed to ask because the three of them work during the week and will have to take some time off work and come with me to the hospital.

Guardian - Thanks for your care and advice. I'm waiting for the results of my son's blood and stool tests. He is still feeling week.

Delta - Thanks for your very kind reply. We all disserve to be successful with it. I was so sorry to read fts didn't work for you after all. Four months is a long time! You must be an expert on it now. It must have been very disappointing for you. Will you consider trying it again with a different donor? Unfortunately I have to move you to the failure list but hopefully you will be back on the good one soon. Thanks a lot for updating us. It keeps our data accurate and allows us to learn from it.

dAetomeN - thanks for providing such vital information. I've only skimmed through Dr. Briggs's article and I'm planning to read it. Lot's of importatng information in it. I can't have fish. Only eggs and chicken of the animal agree with me. We're all different in that way. I'm looking forward to get updates from you and to add you to our list of successes shortly.

I will send an update of the list shortly.

Sharron

Hi,

As an update I am still doing well, sometimes diet or emotional stress will cause some loose stool but that is easily changed within a day, however no blood in stool since July 2011. Even if it somehow came back I would simply take what I know now and swiftly and ruthlessly beat the illness back to the stone age!

By the way, I usually didn't use a strainer and did this by blending on high on the "liquify" setting.

I think there are a couple of things that need to be noted about the possible differences between successful and unsuccessful results on here and from readers who have written to me through my website. As far as I know, no one who has done exactly what I did has failed. This started to get kind of long once I got going, and I realize that the more I think about it, the more I realize how important it is to have the right type of mindset to make this work.

- Have a warrior's mindset. When I went to the infusion clinic for treatment with Remicade I met many people being treated for cancer. The survivors and the ones determined to survive could be friendly with a good sense of humor, and yet they were also stubbornly determined to fight and had a sense of purpose for WHY they wanted to get better.

- Give yourself a deadline and have a sense of urgency about curing yourself. This is not one of those things to get around to someday like clean the garage or paint the house, it is something where you make it a priority and find a way to make it happen.

- Have a sense of perspective and humor and be willing to be crazy for not doing what everyone else tells you to do, own it! My donor and I and my friends cracked poop jokes all the time. I mean what kind of crazy treatment is this? Well maybe I'm crazy. But I think it would be crazier to have a bag of poop on the outside of my body and in a best case scenario poop 5-6 times day for the rest of my life or continue to deal with having UC.

- Be willing and expect to do the fecal transplants for long periods of time if necessary, at least a few weeks at a time and then consider gradually tapering down how often you do them over time. The ones who have succeeded often continued for several weeks, and / or came back to it and tried again if they had to stop or symptoms came back. Having an initial improvement, then a flare, then another improvement followed by some ups and downs is not uncommon, however medications can help this. You can't give up when the going gets tough!

- Manage / limit inflammatory responses from the immune system and try to get into remission as much as possible before starting the enemas. Use drugs like Prednisone (or Ucera) to control inflammatory response. Use drugs like mesalamine to help heal the mucosa. I also count the anti-depressant drug Bupropion (Wellbutrin) as being an anti-inflammatory for its TNF-a inhibiting properties. The addition of Bupropion made a huge difference almost immediately for ending the illness. While fecal transplants themselves are a very important part of getting better don't expect them to be a stand alone treatment and don't stop the drugs too soon after some initial success. All of the success stories I have personally talked to have also used drugs in addition to the fecal transplants.

If I had it to do over again, I would have started with Prednisone before the fecal transplants and continued it the whole time. I also would have stayed on mesalamine the whole time in addition to the nearly 5 months I continued on it after stopping the fecal transplants.

- Adequate nutrition to heal is key and whey protein shakes are very effective and well tolerated. They helped me get off Prednisone when I was preparing for surgery and helped give me hope that I could get better. I believe that in retrospect, attempts at restrictive diets for me might have ended up depriving me of the types of and volume of nutrition that was necessary for me to properly heal.

- Limit diarrhea by managing emotional distress or depression with drugs. Maybe you can "suck it up" but your gut has even more neurotransmitters in it so make it happy. The brain-gut connection is well known and these drugs are often prescribed to manage Irritable Bowel Syndrome (IBS) However none of my GI doctors over the years ever thought to do this. The drugs were very effective at limiting diarrhea and urgency and I think helped the new bacteria to get established and for the mucosa to heal. If you want to avoid prescription drugs, Valerian root extract seems to be pretty helpful.

- STOP asking for or needing to have permission to be healthy from doctors. GI doctors especially are in general risk-averse - in spite of their often huge monetary cost and significant side effects prescription drug treatments often do not work for UC, or can work for awhile or some of the time and then stop working for reasons that are not fully understood.

Doctors need to at least be able to cover themselves and have legal and ethical obligations that they must operate within or risk their careers. Fecal transplants are outside these FDA guidelines, and a doctor directly telling a patient that fecal transplants can work when they are prohibited to do them by the FDA could risk their ability to practice medicine or at a minimum lose you as a patient.

Another consideration is that healthy people don't really need doctors most of the time, while sick people or those worried that they are sick do need doctors. While I believe that most doctors got into the field because they want to help people get healthy, and believe that is what they are doing, at some level they probably also have a need to be needed and its their livelihood where they have invested substantial work, time and money. They also have in many cases also gained significant amounts of prestige, money and psychological validation from their work which they believe is significant. If you believe you are doing the right thing and it offers significant benefits for you then why would you tell someone to do something that you aren't allowed to do that if successful would make them not need you?

- And finally be willing to take a really hard look at yourself and ask is there some part of you that is holding back and doesn't want to be well? My donor / roommate was studying hypnotherapy at the time, onc day when he can back from class he was saying that for hypnosis to be successful you have to have leverage and eliminate "secondary gain." Basically that meant that the consciously known and subconscious reasons for being better must outweigh the benefits of being sick. Also you need to find other ways to have your emotional, social and material needs met, especially if being sick is somehow meeting those needs for you. This seemed absurd to me at first, maybe that applied to losing weight, quitting smoking or pain management but to my case of Ulcerative Colitis? I thought I was moving heaven and earth to try and get better, why would I possibly want to be sick and what was I doing or not doing that was keeping me ill?

However I decided to consider and "try on" the idea that I was allowing myself to be a victim, and that the illness had become part of my identity even in the act of resisting and denying it. Maybe I didn't want to have to bear being completely responsible for my well-being, I wanted someone to take care of me and I was using it as an excuse to not be able to take necessary action with my finances and with holding down a steady job to pay the bills.

I believe that coming to terms with the fact that part of me was holding back, identifying the possible reasons why, and then challenging myself to confront this and stand on my own was what really made me better. I also decided that I was going to be cured and just be a healthy person with no illness and no excuses. After this realization I got the prescriptions for Bupropion and Doxepin two days later, refilled the Apriso and mesalamine suppository prescriptions and the day after that the illness was just gone! Interestingly enough suddenly not having the illness created mixed feelings, what next? What excuses did I have for not doing what I have said I wanted to do? What will I do with all of the time and energy that I now have? How will I tackle the challenges in my life that I had been putting off dealing with?

Now, just making the decision and deciding is not enough in itself, that is in itself is just wishful thinking, but it will guide you to continue to do what it takes to become healthy! I believe choosing to "try on" the identity as a healthy person restoring yourself back to the way things ought to be rather than being a victim of circumstance stuck fighting a battle with no end was what really made me healthy. I now consider myself to be a healthy person who HAD Ulcerative Colitis.

Thanks a lot Michael for another informative and very inspiring reply. I'll update the date of your current status on the list. I so hope people like Delta follow your advice and get cured by using fts.

I'm not sure what to do with the drugs. Antibiotics triggered the uc 14 years ago and 3 months of 5-asa last year caused hepatitis. What shell I take to get the colon ready for the fts? Perhaps steroid suppository?

Also, I would like to format the list we're collecting here in a table with standard variables. Could this be done on this forum?

Sharron