delta30 said...
Hi Guys, i put so much hope in FT when I went To Borody, did all antibiotics and diet and everything i was told but according to my latest scope last month it did nothing< oh wait he said there was improvement and no colitis in the rectum and the right side was improving too but biopsy shows everything still there and active. i think people with infectious colitis, cdiff etc have far better chance and that what his success numbers consist of IMO.
I apologize if you have already included this information in a previous post, however I am curious because I am trying to figure out what is happening with some cases where this is apparently not working.
- What was your condition going into the fecal transplants? How extensive and deep was the inflammation?
- Were you in an active flare (significant blood in stool) or were things somewhat more managed?
- How many fecal transplants did you have and by what means?
- What medications were you taking before during and after the fecal transplants?
- Did they have you take protein shakes or other nutrients to support health (high amounts of iron and B vitamins) and mucosal healing?
- Were any attempts made to treat urgency and / or limit diarrhea or IBS using longer acting anti-spasmodic drugs including anti-depressants / anti-anxiety drugs?
Over the last year I have personally talked with about
20 people by phone or email who have been successful using fecal transplants treat and cure UC. There could be many others who have done this that I have not been in touch with since over the last year 23,000 have viewed my DIY video on YouTube and over 200 have gotten my book. For those who seemed to be struggling at first we tried to figure out what was missing from the puzzle, some tried to limit or discontinue drugs too soon and then went back on them for a time. Some people ended up doing all of the things I did, others did little more than the fecal transplants themselves and it worked fine, some added in additional elements to attempt to maximize healing and the effectiveness of the fecal transplants that seemed to be helpful too. I can say that all of the people I spoke to were very determined to make this work, most had done extensive research and were quite knowledgable.
Based on the bits and pieces I have seen in discussion forums like this one, most without extensive documentation, reasons that people considered to be a non-success included the following possible reasons:
- problems with the donor stool quality, maybe they were suffering from constipation or diarrhea or were elderly or infants which could mean their stool does not have the same amount of diversity as others do.
- Not taking medications before, during, or after
- starting during an active flare that had not been brought under control using medications.
- having a flare develop during fecal transplants and stopping FMTs rather than attempting to treat the flare while continuing
- Doing them for only a few days or at least less than 2 weeks,
- not doing them in a way that gets the stool all the way up the colon
- not using drugs to help limit diarrhea and / or fiber supplements and foods that add bulk to stool
- Having co-morbid diarrhea-predominant IBS due to stress / depression that was not treating with anti-depressants / anti-anxiety drugs
- lack of taking medications that aid in mucosal healing (mesalamine)
- inadequate nutrition to support mucosal healing due to prolonged illness, restrictive diets, and not taking supplements like whey protein shakes / meal replacement shakes to add extra protein needs to expedite mucosal healing and or iron and b vitamins to combat low red blood cell counts bordering on anemia.
What I advocate doing is given the fact that this does appear to work for some people when doing certain things which manageable downside risk comparable to or less severe than most medication alternatives, this is worth doing if you are very dissatisfied with your current treatments. I think the best chance for having ideal outcomes include simultaneously addressing all of these problems proactively before, during and after the fecal transplants or as soon as they appear to be a problem while doing the fecal transplants and then gradually reduce and drop these elements one by one over an extended period of time of up to six months or at least until a few weeks after it looks like the symptoms are gone.
As for where the distinction between being a cure and remission, I got that from Dr Borody's article "Treatment of Ulcerative Colitis using Fecal Bacteriotherapy" published in Journal of Gastroenterology in 2003. This article gave me hope, I felt I owed it to myself to give it a shot first before resorting to surgery. At that point I had nothing to lose but my colon. Whether it is called remission without any signs of the illness, without maintenance medications, that has continued this way for many years or just simply a cure is a choice I suppose. Personally deciding that I would fight for a cure motivated me much more than fighting for remission. I'm sure its gone, and I will never allow it to come back, because I now know exactly what I would do to simultaneously hit it with everything I now know will work.
Below I have included the first two paragraphs of the discussion portion at the end of Borody's article.
DISCUSSION"Although these are case reports several observations can be made. All patients had documented idiopathic UC with an absence of detectable infective agents. Complete reversal of UC was achieved in all 6 patients following the infusion of human fecal flora. All patients ceased anti-inflammatory therapy within 6 weeks and did not require further treatment during the extended follow-up period. After 1 to 13 years, patients remained asymptomatic with a healthy colonoscopic appearance and normal histology. Though there is little doubt that UC can go into clinical remission, chronic UC has not been known to spontaneously resolve both colonoscopically
and histologically without relapse for up to 13 years, as observed here.
To our knowledge, these 6 cases
document for the first time the total disappearance of chronic UC without the need for maintenance treatment. This is an unprecedented finding that demands explanation through further research.
FIGURE 1. Patient 5, prior to HPI: Descending colon with intense UC visible on colonoscopy.
FIGURE 2. Patient 5, 1 year post-HPI: Normal mucosa with some scarring.
Our cases differ from the remissions commonly seen in clinical practice. Remission in UC is a term describing significant clinical improvement often measured by an activity index.
There is currently no definition of remission that demands colonoscopic and histologic normality with no re-currence after a prolonged period
without medication.[/] Perhaps in the future, if such a therapy can achieve prolonged
absence of UC without maintenance drugs, the result should be considered a “cure”.