Never doubt that a small group of thoughtful, committed, citizens can change the world.
Indeed, it is the only thing that ever has.
Margaret Mead
I am pleased to announce the launch of an FMT discussion group on Facebook. This is a place to share experiences on home infusion, FMT clinics, FMT-friendly practitioners and donor testing. You may also wish to recruit others in your region to lobby local health practitioners and colonic clinics to offer FMT or local universities to conduct trials on FMT for your condition. The key is to present a united front and a compelling case that can't be ignored.
Intestinal dysbiosis hits people from all walks of life and when we are not blighted by brain fog, we are a smart lot. Hopefully the activities of the Facebook group will harness these resources and place more pressure on the medical community to catch up with the science. The research is conclusive on C Diff however more is needed on other gut conditions. The success of FMT treatment for C Diff has proven that properly screened FMT doesn't harm, so why not try it on other gut conditions where dysbiosis is a factor? It certainly is less harmful to the gut than anti-biotics and anti-inflammatories, which for many of us have caused more problems than they solved. My experience a year after FMT is a 50% improvement. FMT was not a miracle cure but it gave me the break I needed to keep fighting. I would not be here today without it.
I'm guessing you don't want your Facebook profile showing membership of a fecal transplant discussion group? To protect your privacy the group has been set up under the pseudonym Sally Brown. You can't find it via Internet search and only your friendship with Sally will display on your Facebook profile. To join please send a friend request to Sally. You will then be accepted into the group.
As always, discuss with your doctor and please do not rely on anything in the discussion group in the place of medical advice. All medical interventions come with risk. No responsibility can be taken for decisions made based on information shared in this discussion group. Please do not try and source a donor via the group. If events unfold that you decide to source a donor offsite via a friend made online, be sensible and apply all the necessary precautions including the full range of testing recommended in the CDD protocol for Recipient and Donor - and common sense in dealing with strangers.
Let's get moving to ensure backyard FMT becomes a thing of the past. Let's ensure that this Facebook site won't be necessary in a few years' time when safe, accessible FMT becomes available to those who need it through normal medical channels.
Let's also take a stand for the great micro biome within that left alone will nourish, nurture and protect us - until we mess it up. Digestive illness is then passed down from mother to child and on it goes. The reality is that we are 10 parts microbe, 1 part human. Many groups are formed to protect the environment. Let's do our bit to raise awareness of the environment within and the role dysbiosis plays in digestive illness.
Isn't it time you befriended Sally Brown?
The longest journey begins with one step.
Lao Tzu
Lao Tzu
17 comments:
Thanks for your extremely inspiring blog. I went to see Prof Borody in Aug to get a diagnosis but had to do home FMT because I live in New Zealand. I had to ask 2 donors to be screened - the first turned out to have undiagnosed coeliac disease. I have now finished my 11th transplant and my symptoms are totally gone.
I am 65 years old and have had intractible diarrhea for 19 years that forced me to quit work 2 years ago.
I am absolutely thrilled after all this time that I can finally eat, sleep and feel normal again
Wow. This is indeed a good news story Stuart. Was it C Diff or something else?
It proved to be really difficult to culture. I had one partial positive for C Diff and one where mucous interfered with the culture. The 3rd time I had been taking massive amounts of Immodium and Zeolite. Because the 3rd same was partially formed, the hospital in Auckland declined to culture (I didn't find this out till much later when I had already started Flagyl in preparation for the FMT).
Hi, I'm grateful for your blog. I'm so glad you're getting closer to more vibrant health.
I just wanted to say that for even more privacy on the Sally Brown facebook page, you might hide Sally's likes, as well as her friends. Anyone wondering about this new Sally-person-with-no-profile-pic-that-you-just-became-friends-with is currently able to click through to the page/timeline where Sally's likes and all of her friends are displayed.
As much as I believe in TPOP, FMT is a pretty off-putting topic for most of the Purel Population we all interact with daily. Jus' sayin!
Thanks for all you've done, & wishing you continued improving wellness!
Thanks - Sally's like and friends are now private :-)
Stuart would you be prepared to have your success story told to inspire and inform others? If so please email me thepowerofpoo@gmail.com
I am wondering if this treatment would help my colon as I have a very difficult parasite to kill in the colon and my colon is very sick as well as the small intestines. I have putrid smelling poo from undigested proteins. I have a leaky gut too! Any thoughts if this might help my colon to feel better. My bowel movements range from light brown to a very dark brown too! I can't seem to have a balanced flora in the colon. Everything I eat that's a carb (very low in sugar as I am on a candida diet) creates more problems by the by products from the yeast feed the parasites/protozoan in the colon. It's a nightmare. The protozoan is a problem because I have a very leaky gut which is making my very ill too! I don't know what to eat anymore! Thank you for your help!
FMT will help, but only as part of a holistic plan to address all perpetuating factors. It's important to get rid of known pathogens before FMT to maximise the chance of success.
I have been suffering from chronic diarrhea for over a year, with the last six months of my life totally affected by the condition, i.e, mapping out bathrooms, turning down social events, depression, etc. I learned about fecal transplant just three days ago, which is suprising because I search the internet everyday for information on my condition, but had never come across it before. I've been to numerous doctors and had all lab work done, everything tests normal. The gastro I saw last month started me on Flagyl, and I took two rounds, the first ten days and the second eight days. Had terrible side effects, but was desperate to get better. After the last round, I found the article on FTT. The second day after completing the second round of Flagyl (which I believe was still not working, as my symptoms were still present), I stayed home and made a mixture of my husband's feces and saline water. I took two doses of immodium about one hour prior to starting the transplant. I introduced a small amount in my rectum via an enema. It was difficult to do, and I had to water it down a couple of times to get the right consistency. I had some cramping, and had to run to the toilet and defacate after administering it the first two times. The third time I did heavy breathing throughout the cramping and urge to defacate, and I was able to stay in bed. In total I probably administered only a few ounces of my husband's feces into my rectum. I stayed in bed for a continuous 5 hours, and then got up and bathed, washed the bed linens, etc. I felt a little weird all day, like I had gone to the hospital for an outpatient procedure. I took it easy all day. The next day I woke up and felt very normal. I had one normal bowel movement. Today is the second day and I feel just like yesterday. I truly believe FTT has worked for me, and I want to tell the world about it. It is truly miraculous!
That's great news indeed jcg. If you're still doing well in 6 months please let me know as I'd love to post your success story :-)
I did a home FT last October after 3 1/3 years of suffering from gas, mucus, diarrhea, blood, urgency, cramps, etc, that comes with UC.
I feel like I have my life back.
I added fiber from fiber capsules to the transplant, which I feel helped with it 'taking' the first time. Then I am also eating fermented vegetables, which I feel is helping as well.
I am not on any drugs and I have had no symptoms since about a week after doing the home fecal transplant.
Teri
Hey that's great Teri. I would love if you would email me to tell your story thepowerofpoo@gmail.com
I have posted my whole story, along with the process I did on a blog:
You can read my blog - - http://healed-from-uc.blogspot.com
You are welcome to link to my blog. I want as many as possible to find the hope that I did in doing a fecal transplant.
Doctors kept saying there is no cure - they have to know that this works but yet they keep pushing the drugs to suppress our immune system, which will never bring healing.
FT is the beginning of healing!
Teri
hi to all fellow sufferers:
I have c.diff and have no medical insurance so I am going to try the DIY fecel transplant. I live in NY and need to find someone local who will carry out the much needed screening tests on my donor. Where do i find a Doc to do this?
Thanks
Kes
Kes, it might be worth contacting NY doctors who do it -- they are involved in research studies and may be able to work you in, even without insurance:
Lawrence J. Brandt, MD,
Montefiore Medical Center/Albert Einstein College of Medicine, New York City, NY
Phone: (718) 920-4846
http://www.einstein.yu.edu/home/faculty/profile.asp?id=2519
Arthur DeCross, MD & Sonia Yoon, MD
University of Rochester Medical Center, NY
Phone: (585) 275-4711
https://www.urmc.rochester.edu/medicine/gastroenterology/
Also, does anyone know of a nurse, Naturopathic doctor (ND) or any other kind of health care practitioner who performs FT anywhere near Philadelphia?
Thanks! MS
Check out the list of clinics on this site.
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