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Ulcerative Colitis
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Posted 9/10/2008 2:03 AM (GMT 0)
My UC came after a long bout of antibiotics to fight a c diff infection. I believe that I was already predisposed to UC, the c diff came in and conquered, then the Vanco brought in the cavalry and took back the battlefield. Unfortunately, the battlefield was now so war torn that it was impossible to bring it back into its natural, fertile state. Or as Sean says, my genome sees the damage, and is still trying to fight the battle. I like the idea of my genomes talking. If only they could talk the UC into leaving...
Posted 9/10/2008 2:19 AM (GMT 0)
Yes please elaborate Delarge. I mean, I was joking and being silly, but there is research out there that suggests a similar relationship. Even my astrometaphysiologist says so >.>
Posted 9/10/2008 2:48 AM (GMT 0)

emory said...
Delarge, can you expand? I would really like to hear more of your thoughts.

It seems that many instances of ulcerative colitis appear immediately after the use of antibiotics, or after experiencing an infection of the digestive tract. Gastroenterologists are often quick to implicate autoimmunity without first conducting a proper investigation. This of course leads to years of destructive "maintenance" therapy through the use of toxic drugs and in many cases, a colectomy. Now, I won't dispute the fact that autoimmunity is a valid theory, however I feel that it has increasingly become an excuse for complacency amongst medical professionals.

The form of treatment for ulcerative colitis with the highest statistical rate of success involves injecting fecal matter from a healthy individual into the colon of a patient (hopefully you weren't eating). The bacteria contained within the donated feces sufficiently colonize the colon to restore a state of symbiosis. This procedure is commonly referred to as fecal bacteriotherapy.

Links:

http://www.jcge.com/pt/re/jclngastro/abstract.00004836-200307000-00012.htm
http://www.cdd.com.au/pdf/toyingmotions.pdf

Given the success of this treatment, it would be natural to conclude that microbes play an extremely important role in UC.

Post Edited (Delarge) : 9/9/2008 8:53:07 PM (GMT-6)

Posted 9/10/2008 5:14 AM (GMT 0)
I'm interested to know if any large controlled studies have been done for this yet. I know there were some small open studies done about five years ago, but anything new and conclusive?
Posted 9/10/2008 5:32 AM (GMT 0)
There is no doubt that microbes play a huge role in IBD, but the immune system still is involved as well, more research to understan how needs to be done.

:)
Posted 9/10/2008 10:41 AM (GMT 0)
It seems as if the bacteriotherapy thing has gone quiet which would suggest it's not working that well. The papers look very promising but there is very little information and only the one place in Australia doing this I believe I sent them an email to which they have not responded. The theory seems good though if 50% or our stools are bacteria there must be more varieties and number in there than 100 years or popping probiotics.
Posted 9/10/2008 2:55 PM (GMT 0)

I think it has gone quiet because those who want to try it can't get in touch with people who have done it. The "yuck" factor is another reason many patients would rather pass the therapy. If I could personally meet and talk with 5-10 patients who have done this, then I would consider it.

I know they say 50%, but alot goes into that percentage. It may have not worked for some because they were too inflamed at the time and the new bacteria could not grasp on to the epithileal layer, thus the infusion failing. Also, it might not work for patients who have had the disease for a prolonged amount of time, and the damage already caused to the colon is irreversable. They do state that they get the best results in patients who are in clinical remission. I believe this is the right therapy to do when you are intially diagnosed, meaning first 5 years. You should also wait to get into remission and then try it.

men8ifr said...
It seems as if the bacteriotherapy thing has gone quiet which would suggest it's not working that well. The papers look very promising but there is very little information and only the one place in Australia doing this I believe I sent them an email to which they have not responded. The theory seems good though if 50% or our stools are bacteria there must be more varieties and number in there than 100 years or popping probiotics.

Posted 9/10/2008 4:27 PM (GMT 0)
Research doesn't go quiet because patients can't contact those doing the treatment. Researchers are always soliciting for volunteers. And a verified 50% success rate would certainly merit further investigation; that's easily as high as existing treatments for a lot of drugs. I'm curious as to why no one has picked this up and run with it, if it really works.
Posted 9/10/2008 4:31 PM (GMT 0)

pb4 said...
There is no doubt that microbes play a huge role in IBD, but the immune system still is involved as well, more research to understan how needs to be done.

:)

Naturally the immune system is involved. What is it combating? That's a much for difficult question to answer.
Posted 9/10/2008 4:43 PM (GMT 0)

Judilyn said...
Research doesn't go quiet because patients can't contact those doing the treatment. Researchers are always soliciting for volunteers. And a verified 50% success rate would certainly merit further investigation; that's easily as high as existing treatments for a lot of drugs. I'm curious as to why no one has picked this up and run with it, if it really works.

Logic would dictate that given the success of Borody, others would begin experimenting as well. Not so. The issue at hand is likely the extreme unorthodoxy associated with this form of treatment.

Popularity is not always a useful measure.
Posted 9/10/2008 5:43 PM (GMT 0)
Ah, but profit motive is. I'm surprised there hasn't been a pharmaceutical company all over this, if it works. It could be "cleaned up" and given a nice name, they could find a way to package and market it and make money off it.

(Not saying there's anything wrong with making money. I like it, too.)
Posted 9/10/2008 10:23 PM (GMT 0)

Judilyn said...
Research doesn't go quiet because patients can't contact those doing the treatment. Researchers are always soliciting for volunteers. And a verified 50% success rate would certainly merit further investigation; that's easily as high as existing treatments for a lot of drugs. I'm curious as to why no one has picked this up and run with it, if it really works.

I contacted a doctor who did a report on a patient with UC in 1989. His patient was deemed cured after having 11 years of UC. His study was called "Treatment of ulcerative colitis by implantation of normal colonic flora." He is mentioned in the Borody's article "Bacteriotherapy Using Fecal Flora."

Well anyways, I contacted that doctor and I asked him why there hasn't been a study on this topic. He told me that a few years back, after the Borody study was published, he was the only doctor to his knowledge pushing hard for years to get a study approved here in the USA. However, he could not get it approved by any medical boards, resulting in no funds for the study. Unfortunately, there is no "medicine involved" and no "money to be made" so something like that isn't going to be approved by medical boards. Hearing this really makes any suffering patient mad of course.

I believe that everyone with UC should at least give this a try. If it means no more medicine and intoxication resulting from it, then go ahead and try it once.

If anyone reading this has tried it, please respond to this thread.
Posted 9/10/2008 11:11 PM (GMT 0)
Let us know how it works out for you, Moeja4eva.
Posted 9/12/2008 8:57 PM (GMT 0)

Delarge said...

pb4 said...
There is no doubt that microbes play a huge role in IBD, but the immune system still is involved as well, more research to understan how needs to be done.

:)

Naturally the immune system is involved. What is it combating? That's a much for difficult question to answer.

The lack of the XBP1 gene disables the normal communication between intestinal epithelial cells and gut bacteria, resulting in dysfunctional immune response and disease.

:)

Posted 9/12/2008 9:20 PM (GMT 0)
Yup i think my UC was brought on by a 4-5 month long treatment of doxycyline (antibiotic), I have been trying to rebalance my bacteria in the guts for some time.  Lately i increased my acidophilus to 4 pills a day. One before each meal and one before bed. I take GNC Natural Brand Super Acidophilus. Its 10 billion CFU, the strongest they have. I am having some great results.

Posted 10/1/2008 9:07 PM (GMT 0)
I know of at least one eprson who said this worked for a while, until he stopped because his donor develoepd some sort of chronic infetcion that disqualified them. I'd like to wake up this slightly old thread for anyone still monitoring. I am toying with the idea of trying this myself... well, after having my donor tested extensively for pathogens and viruses. Sounds yucky as hell but not horrendously difficult to do on ones own, at least minus the antibiotic portion of the treatment. Buy lots of large volume enemas and saline solution so you just discard the bags after each nightly use, use them 1-2x a day for say a week or two and see if it does the trick. Certainly something I'd try before colectemy. I am probably going to try Remicade first though.
Posted 10/1/2008 10:20 PM (GMT 0)
To rebuild your mucos lining you for one need to change your diet and stop sugars and carbs and any other crap that feeds that bad bacteria in order to "starve them out" which by the way probably totally own your intestines. Next start taking probiotics ie acidophilus and bifidobacterium and alot of them. Glutamine also supports the rebuild of mucos in the intestines. Stick out and dont cheat your diet and your will probably see some good results in 3-4 weeks.
Posted 10/1/2008 10:36 PM (GMT 0)

Just wanted to mention that I have used the SCD homemade yogurt off and on and found it to be much more helpful than a probiotic in pill form.  It has 700 billion good bacteria in each cup.  I've never heard of another product that surpasses that amount. 

I ate it daily for a short while before I injured my leg and then was hospitalized for gallbladder issues (my point being that I stopped eating it for a while).  I just started up with it again today.  For those of you who are lactose intolerant, the SCD recipe requires that you "cook" it for 24 hours so all the lactose is killed off. 

Here's some more info on it:

http://www.breakingtheviciouscycle.info/beginners_guide/yoghurt/yoghurt.htm

Posted 10/2/2008 1:44 AM (GMT 0)
Primadophilus Reuteri probiotic aids with lactose intolerance, I had severe lactose intolerance and since taking it daily I no longer have any lactose issues.

:)
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