Below is an email from Bill who doesn’t have UC, but has provided some EXCEEDINGLY VALUABLE information for all of us living with ulcerative colitis.
Please read first what Bill wants to make clear to everyone:
“Feel free to share any information I have provided with the proviso
that you mention that I am not a Doctor and this information is
provided only so that people may share it with their own Doctor.
(Does that cover my butt enough?) Lord knows there is too much
information out there for Doctors to be aware of it all, and a good
Doctor will not be upset when their patient provides them with
breaking research.”-Bill
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Japanese researchers have finally identified a particular bacteria
(Fusobacterium varium) as a cause of UC. This bacteria produces a
substance (butyric acid) that attacks and inflames the bowels.
See here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773498/
Now that they know which bacteria is causing the problem they have
begun targeting it with antibiotics and are seeing results.
See here:
http://www.thedoctorschannel.com/video/3068.html
Other information on effective antibiotics for this bacteria, drugs
that will block the specific organic acid created by this bacteria,
and drugs to keep it from implanting into the bowel’s mucosa is
available here:
http://www.freepatentsonline.com/7700106.html
This information does not seem to be widely known, but it should be, darn
it.
-Bill (Bill’s first email)
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Bill,
That’s some very interesting stuff you emailed me. Do you also have
ulcerative colitis? And how did you come across this information in the
first place. This info is great news!
Regards,
Adam (my first reply to Bill)
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Hello Adam,
I don’t have UC, but a young man on a message board I frequent was
diagnosed with it and I started digging around for information for
him. I’ve got a Biology/Chemistry background and I’m pretty good with
a google search.
I found your web site early on when I was looking into
probiotics/yogurt so I thought you would appreciate the information.
Let me share some other promising research I found that is being done
in Australia. One of the Doctors (Gastoenterologist Thomas Borody)
who figured out that peptic (stomach) ulcers are caused by bacteria
and not by stress (as was earlier believed to be the case), came up
with the idea to use antibiotics and chemicals to wipe out as many
bacteria in the GI tract as possible and then immediately replace that
with bacteria taken from a healthy donor. I have dubbed this the
“poo” transplant, although Doctor Borody is calling it Human Probiotic
Infusion, which nicely sidesteps the whole poo part.
This is starting to be a standard treatment for another form of
colitus that is caused by an entirely different antibiotic resistant
strain of bacteria. You can read about it from Canada’s CBC here:
http://www.cbc.ca/health/story/2007/11/13/fecal-transplant.html
More general information that also applies to UC is found here:
http://en.wikipedia.org/wiki/Fecal_bacteriotherapy
Of course, the concept of a poo transplant isn’t one you would bring
up over Thanksgiving dinner with the family, but early trials on UC
patients had results I would call incredible. Read about them here:
http://www.ncbi.nlm.nih.gov/pubmed/12811208
This same Doctor also recommends a particular probiotic capsule by
name as something you can try first before jumping to the poo
transplant option. This product is called VSL#3 and appears to be a
high dose of many different probiotic bacteria strains all in one
capsule. The theory is that you crowd out the bad bacteria with high
numbers of good bacteria. The downside is that after you stop taking
the capsules, the levels of these bacteria in your system will slowly
return to normal since they are cultured bacteria and not capable of
reproducing within your gut long term.
Since I went through the trouble of tracking down this information, I
figured that more than one person could benefit from it.
I imagine that your Doctor would be most willing to try the antibiotic
regimen if you provide him a copy of the Japanese research just
published in the August 2010 edition of the American Journal of
Gastoenterology, since Doctors really like prescribing antibiotics.
Here’s a link to the abstract:
http://www.ncbi.nlm.nih.gov/pubmed/20216533?dopt=Abstract
I personally think I would have those probiotic capsules Dr. Borody
recommends standing by, and start taking them immediately after you
finish the two weeks of antibiotics.
If all else fails, you can bring up replacing the bacteria in your gut
with a transplant from a healthy family member.
Here’s hoping people with UC don’t have to continue to suffer,
Bill (Bill’s second reply)
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Hi Bill,
…Anyways, I wanted to ask you if you would give me permission to post your
> email as a posting so everyone on the site can read it. I think it will
> blow people’s minds. Please let me know as I’d like to get it up quickly as
> everyday people, mom, and dads are writing asking what to do about this
> nasty disease, and I really don’t have answers for anyone, but this might
> just point them in the right direction…
Best regards,
Adam (Adam’s second reply)
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Hello again,
Feel free to share any information I have provided with the proviso
that you mention that I am not a Doctor and this information is
provided only so that people may share it with their own Doctor.
(Does that cover my butt enough?) Lord knows there is too much
information out there for Doctors to be aware of it all, and a good
Doctor will not be upset when their patient provides them with
breaking research.
I’m an big gardening buff and I have learned in my garden the
importance of having a healthy bacterial/fungal ecosystem established
in the garden’s soil for vigorous healthy plants, so I was also
predisposed to think that something had gone wrong with UC sufferer’s
intestinal ecosystem.
I’m afraid my computer has developed a habit of crashing when I play
flash videos. I can’t convince myself that I want to format and
reinstall everything from scratch to see if that fixes the problem, so
I haven’t watched the videos on your site.
However, on the same subject, you might find this article interesting:
http://www.sciencedaily.com/releases/2008/06/080603085914.htm
Especially this section: “Daniel Frank of the University of Colorado,
Boulder, is part of a team that is exploring the role bacterial
communities in the human digestive tract may play in inflammatory
bowel diseases. They are collecting and comparing microbial
communities in samples from people with Crohn’s disease, people with
ulcerative colitis and healthy volunteers.
“Some researchers are looking at the role a specific organism, like E.
coli, might play in the development of inflammatory bowel disease. Our
task was to look more broadly. What are the microbes we see as a whole
in the gut and how might those populations change in relation to
disease”” says Frank.
Instead of any one particular organism associated with inflammatory
bowel diseases, they observed significant shifts in microbial
populations between healthy subjects and those with disease, including
a loss of normally protective bacterial populations.”
I wish you and all the others suffering the best,
Bill (Bill’s third email)
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Thanks So Much Bill for sharing this information! This is the first time any of this information has been published on this website, and I hope everyone enjoys reading about the advances that are taking place regarding research and our disease.
If anyone has any feedback or experience with regards to any of this, PLEASE SHARE IT HERE in the comments!!!!
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
And, the Free eNewsletter, which has important updates can be joined here.
Hey Bill, this might look like a comment to myself, but I wanted to thank you again for sharing all of this info. This is a ton of information, and it is making me feel really good to read it over again. I hope others are getting some good feelings from reading this materials too.!! Muchas gracias Bill!
There is some really interesting stuff here which gives us hope for the future. To be quite honest I haven’t been looking at research into the cause or possible cure of our condition but this has prompted me into being more inquisitive. A brilliant post.
Everyone should read this post from Bill! And read all the links he provides.
All of this is incredibly interesting and makes so much sense. I have come across some websites in my search for what was wrong with me (prior to diagnoses) that said essentially the same thing but they did not know the precise bug that was causing the problem. I have even read a lot about people infecting themselves with parasites to attempt to cure themselves but that is a whole other story. This one is much more plausible.
Now, my question is…Where can we go to receive this treatment? Yes, we can take this info to our doctors but if your doctor is anything like my doctor she doesn’t want to hear what I have to say and only regurgitates to me what the pharmaceutical companies have told her say and prescribe. (Yes, I am not too fond of doctors these days and I should probably find a new one).
For instance, there is a Celiac Disease clinic in New York at Colombia University that is providing relief to thousands of sufferers from around the world with that disease. It was started by an Australian doctor (can’t recall his name). I think it is really important we listen to research that is being done in other countries. Their hands are not tied by Big Pharma.
It would be great is there was a clinic in the US that would specialize in this treatment.
It is believed my illness was started by a heavy and lengthy dose of antibiotics that I was on. I am a bit hesitant to go back on antibiotics without proper and knowledgeable supervision. You know what I mean?
I need to get back on the web and do more research myself!
Thanks Bill and Adam.
Hi everyone
I managed to get in to see dr borody on Friday this week
Very lucky there happened to be a cancellation as I called otherwise there is a 9 month wait!!!
I’m in Melbourne Australia and dr borody is based in sydney so I have booked my flights
And off to find out what he can do to help me get over this dreaded disease!!
Keep you posted
Gina :-)
Hi Gina !
Can you keep me posted on your experience with Dr Borody please?
The best of health,
Matt
Hi Gina,
The very best of luck! I like many others here, will be very keen to hear how you get on good, or otherwise.
Thanks. Senga X
i’m on vancomycin right now and i hope it can knock out my colitis flare, too, as well as my c diff. i’m on probiotics too but not vsl. vsl didn’t do much for me in the past and was too expensive. already tried 8 fecal transplants but same thing- no improvement in symptoms. i wish this treatment actually worked for UCers more often than not.
Saw this interesting bit of news in the papers yesterday. Might have some implications for UC:
http://www.herald.ie/news/university-hails-new-bowel-fight-discovery-29456737.html
I have never posted on here- however he mentioned butyric acid that causes inflammation. Maybe I misunderstood what I was previously reading, but I am pretty sure it was actually identified as an agent that has positive effects on the immune system as well as decreases inflammation- something studies have shown UCers are low on (the whole resistant starch theory).
Also…VSL#3 is not a secret last time I checked…
yeah this is opposite to what Ive read also, Im taking Butyric acid supplements at the moment so I suppose Ill see if it makes my flare up better or worse.
This response thread needs updating and more contributors
Hi Owen,
Did you have success with the butyric acid? I just ordered some.
I don’t get this, butyric acid is claimed to be a naturopathic treatment for ulcerative colitis, now these guys are saying it actually causes it? Such contradictory bs in the world, makes me sick.
I am an MD PhD, and I have UC, and I’ve studied UC. It is not a distinct entity. There are many causes of UC, and what helps one may not help another. What do PPAR antagonists versus agonists do for you is a good place to start. Eosinophils can cause colitis, bacteria, IL-6, IL-12, IL-17 driven disease. Some UC is thought to be humorally driven, some is thought to be more cellular in autoimmune nature.
My advice as someone who knows the origin of his UC from sequencing my own genome is:
1. Never listen to anyone’s advice, but try their ideas with skepticism. Everyone is different.
2. DMARDS don’t work overnight, so don’t judge something until you are 6 weeks in.
3. Alcohol is not good. It breaks up ZO-1 junctions and lets bacteria slip into the lamina propria of your bowel, and the immune system doesn’t like that.
4. Challenge your own conclusions. 5-ASA compounds made my UC worse I thought. So one day while in unmedicated remission, I took some asacol and had a shortlived, severe bought of UC. I proved it to myself, and never went near 5-asa compounds again. Since then, I have not been hospitalized.
5. If a high-dose glucocorticoid doesn’t help, you don’t have autoimmune colitis. Look for parasitic or bacterial causes.
6. If you are lucky enough to have a doctor who is a researcher and immunologist, ask him to go over the biopsy slides with you. See what types of inflammatory cells are mediating your disease. It will help guide treatment
Dear JJM, a very BIG thank you fir all your thoughts, research and ideas! Much much appreciated,
Adam