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Fecal Transplant - I took the plunge! PART IV

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Ulcerative Colitis
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Posted 8/21/2010 12:01 AM (GMT 0)
I must saying the fact you've had a colonoscopy's tells me you have a more serious condition then mine. However for a long time
I have been eating super healthy, & all I have is loose stools, 1 bowel movement per day.

I've read several stories of people who did 1 fecal enema with there baby and there symptoms ceased immediately. If your having
bad symptoms at the moment I really think you should try it one time. I'm not just saying this to make you the guinea pig. You could
be 1 fecal enema away from very reduced symptoms.

Same with you miracles. 1 Fecal enema could implant a lot of beneficial bacteria. As far as I know they will only do the procedure for
C-diff in north american. Even then they will only perform it after a C-diff patient tries different antibiotics. Which is pathetic as the curerate
for C-diff is over 90% & patients no longer require meds. Why they don't perform it far more often is beyond me. Is it a money thing. If
thats the case its pretty sickening they choose profits over helping people. They only perform it when your about to die, heaven forbid you
die and you become worthless. Pretty sad
Posted 8/21/2010 1:24 AM (GMT 0)
Honestly the colonoscopies are in part because of the same overenthusiastic doctor who for no good reason tested me for lyme, then gave me antibiotics. So I am not sure, at least at the time, that the colonoscopies were for serious issues. In fact, none were found. I am coming round to the FT route, definitely. I just need to enlist my wife's help who, as of now, is less than enthusiastic though the more i give her to read, the more she is willing to help out. I think she just wants me to do the mixer part! Then there is the delicate issue of figuring out how my 5 year old will allow me in the bathroom with him at, uh, the right time. He is pretty funny, complains he needs his privacy!!!!
Posted 8/21/2010 3:11 PM (GMT 0)
When I saw my GI Doc yesterday and we were going over my options (increase pred, remicade or surgery - none of which are too appealing) I mentioned fecal transplantation. He just about had a flippin cow. He told me that it was for c-diff only and that U.C. is an autoimmune disease that has nothing to do with the flora in your guts. Why are the Docs here in the United States so stinkin' closed minded!!?? Preliminary results show that fecal transplants have a higher success rate than remicade, but that doesn't stop the docs from pushing remicade on you all the time. Why not do a trial for F/T for UC patients at least here in the U.S.? Prove to us that it doesn't work before jumping to conclusions.
Posted 8/21/2010 3:56 PM (GMT 0)
CGK,
For what it's worth, my daughter's first GI warned us against probiotics - saying there was no research on them and some could be dangerous. We switched docs. My daughter's current GI is considered the "best" pediatric GI in the country and though she doesn't give me the warm fuzzies either she does believe fecal transplant makes good scientific sense (though she won't facilitate it) and she also believes that probiotics such as VSL are helpful. Maybe your doc gets wined and dined by the Remicade guys or maybe he's just clueless. Probably both.
Posted 8/21/2010 3:57 PM (GMT 0)
C-G_K, have you tested your intestinal flora?

Personally thats what I really think a fecal transplant is about, restoring intestinal flora. In my opinion regardless of your IBD, if your
intestinal flora is lacking things as mine is such as bifido, then its impossible to be in perfect health. These bacteria are responsible for
absorbing vitamins and keeping proper intestinal PH among alot of other things. It is most effect for C-diff, but there have been testomonies
of UC patients having good results with the procedure.

Doctors say about doing trials that its very difficult to do because a patient knows whether or not he is getting an enema. As opposed to giving
one group a particular drug, and another group a pill that contains nothing. However why can't they just give one group of people an enema with
safe dirt water or something. We really don't know the system though, so hard to comment.

Sunspot, I hear you on the difficulties. I have a few idea's. Getting a gas mask is one. This site and individual was setup through Australia to give
patients the equipment to perform the procedure. She says she has special enema bags. I don't know what that means, and I don't think you have
to use her stuff. But i'll link it anyway http://www.metromedical.biz/ ...
Posted 8/21/2010 4:17 PM (GMT 0)
Before I go on prednisone, I have always had stool checked for infection, and it comes back "normal flora" or something to that effect. I have never had a more discriminating test done to check for specific healthy strains of bacteria.

How does one go about doing that? I would be very interested in doing so.

Sometimes I wonder if my constant use of rectal meds (mesalamine and hydrocortisone foam) doesn't kill off healthy flora in the rectum. Swimming in these unnatural substances can't be good for them. Murphy's law being what it is, the unhealthy bugs probably thrive in that environment.
Posted 8/21/2010 4:30 PM (GMT 0)
CGK, I'm not too sure about steroid creams. On this forum I feel like I answer alot of ?'s, which is fine. When
I'm lurking on curezone I seem to be asking the ?'s, as these guys have taken there knowledge of this stuff
to another level.

I posted your ? about where to get a stool analysis done in the US on curezone. http://curezone.com/forums/f.asp?f=460&p=303
They can answer this better than I can. Just give it time, and someone will respond with some good info, I promise.
Posted 8/21/2010 4:44 PM (GMT 0)
thx tankor, I will check it out.
Posted 8/22/2010 6:49 PM (GMT 0)
In several of the places I have been looking at the directions for the "at home" FT procedures, I have seen where people just blend together the fecal matter with saline, and then put it into an enema for deposit.

But then in others, apparently people strain the blended picture, and then only deposit the strained material. What are most people doing here, and is one better than the other? I'd hate it if by straining you are getting rid of a large portion of the bacteria you want to have in your system.
Posted 8/22/2010 7:04 PM (GMT 0)
No. I did not strain the mixture.

After doing fecal transplantation a second time, about two and a half years later, using again my granddaugther's poo, I have a slightly different conclusion as to my experience with fecal transplantation. I think that the fact my granddaughter was breast feeding at the time really made a huge difference. Both times fecal transplantation helped, but the first time, when my granddaughter was breast feeding, it was a miracle. I stopped bleeding just like that when I had been bleeding a lot. Anyway, I've read that breast milk helps good bacteria in the gut while keeping bad bacteria at bay. Perhaps, that's why. Not only did I put good bacteria that had never died from antibiotics into my colon, but the poo was a gooey substance that probably contained material that helped the good bacteria to take hold in the colon. Something to think about when doing fecal transplantation, especially for any young mothers on the forum who are flaring after giving birth.
Posted 8/22/2010 8:01 PM (GMT 0)
Subdued,
That's interesting. I know Dr. Barody explicitly makes the point that the donor should be an adult as they have a wider variety of bacteria in the gut. We're trying to decide who the donor should be for our daughter so I'm a little confused by all of this.
Posted 8/22/2010 8:01 PM (GMT 0)
Subdued,
That's interesting. I know Dr. Barody explicitly makes the point that the donor should be an adult as they have a wider variety of bacteria in the gut. We're trying to decide who the donor should be for our daughter so I'm a little confused by all of this.
Posted 8/22/2010 9:09 PM (GMT 0)
ya I'm aware they say that. But I found so many sources saying that the intestinal flora is pretty much
complete after the age of 2. One thing you get with an adult is more volume. But the same beneficial
bacteria exists in children. You can probably use a small child also without worry, whereas I wouldn't
perform this procedure without extensive testing on an adult.

I think I'm gonna try this once with no antibiotics but using my own natural approach. Hopefully it works
Australia says its probably not something your gonna want to have to do again, but I'm prepared to do
whatever it takes. Trial and error might be part of my protocol
Posted 8/23/2010 11:44 AM (GMT 0)
Subdued, I notice from your signature that besides the FT procedure, you also appear to have a pretty strict diet still. So have you found that despite the FT procedures you used, you definitely need to continue to be careful with foods? I was curious whether for some after FT and getting "cured" they find that they can go back to eating things they previously were unable to.
Posted 8/23/2010 12:25 PM (GMT 0)
Are there any other place in the world where they preform Fecal Therapy for UC patients, than the one in Sydney (CDD)?
Posted 8/23/2010 2:41 PM (GMT 0)
This is from a Doctor in MN that responded to my request

I am sorry to say, but we do not have a protocol to perform fecal bacteriotherapy for ulcerative colitis.  The procedure is only offered to patients with recurrent, refractory C. difficile infection.  Your idea is reasonable, and in 2003 Dr. Borody in Australia has reported a few patients with UC who benefited from bacteriotherapy, but they haven't published anything new since on the question.

 

We are currently considering setting a protocol for a non-C. difficile indication, and perhaps more will follow.  But, we will need to take things in the proper order, e.g., IRB approval first, setting up data monitoring board, etc.  However, I have to stress that there is still essentially no data to suggest this will work for UC.  It is established that colon flora is different in UC compared to normals, but personally I think that is the consequence of disease rather than the cause.  

 

For what it is worth, I treated three patients with refractory C. difficile colitis and underlying Crohn's disease.  Their C. difficile infection was treated, but their Crohn's didn't go away.

 

If you're having terrible rectal pain, you should have a careful exam for an anal fissure.  Prednisone is only a temporary crutch in management of IBD.  However, you may actually need an immunomodulator drug like azathioprine or 6-MP.

 

Posted 8/23/2010 4:01 PM (GMT 0)

sunspot19 said...
Subdued, I notice from your signature that besides the FT procedure, you also appear to have a pretty strict diet still. So have you found that despite the FT procedures you used, you definitely need to continue to be careful with foods? I was curious whether for some after FT and getting "cured" they find that they can go back to eating things they previously were unable to.

I don't know. My diet is not as strict when I'm not flaring. I will eat pro-inflammatory foods. I just try to balance them out with anti-inflammatory foods. For years, I ate very poorly, and I'm now eating healthier to improve my colon health (although I've been giving into sugar cravings lately). I used to get IBS all the time after being on antibiotics for years, and I ignored the IBS symptoms, until I got IBD that is. I still will get IBS symptoms if I consume anything with HFCS, crystalline fructose, foods high in fructose, and artificial sweeteners. So I avoid those like the plague. I think it is an issue with my liver not being able to digest the stuff, because I get liver spasms after drinking alcohol and the antibiotics I took are known to be hard on the liver. Hopefully, my liver function will improve with diet and no antibiotics.

So I really think it depends. If the only issue is imbalanced fecal flora, then FT should be able to balance it out. For how long really depends on why the fecal flora got imbalanced in the first place. I read somewhere awhile ago that the fecal flora is easy to become imbalanced for those who have UC. That could be a reason why FT may work but not as well for those with UC. As for me, I think I have some form of Colitis from having been on antibiotics and am not genetically prone to getting flares. The first time I did FT it worked, until I had to go back on antibiotics that is. The second time I did FT, I was in remission but showing signs of going into a flare. I'm now in full remission, but I also went camping in the mountains and was drinking hard water. I think the magnesium and calcium in the water also helped.
Posted 8/23/2010 5:19 PM (GMT 0)
Subdued, quite interesting.  Did your doc ever suggest that perhaps IBS was a precursor to IBD?

Oddly the literature tries to make clear IBS is not a precursor to anything else, but I always wonder and have concerned that, at least in the case of IBS-D, it can't be that this has no negative effect.

Posted 8/24/2010 1:57 AM (GMT 0)
No. I never mentioned to my doctor that I had IBS. He's not the type that would care. His method is to see the condition of the colon and treat any inflammation with meds. I trust him in doing colonoscopies. That's why I go to him. Plus, he'll see me right away. I don't have to wait for an appointment.
Posted 8/24/2010 8:19 PM (GMT 0)

Hi Linda,

  Its Haileys mom Kelly. I am back to the forum. Hailey did really well for 4 years straight.

 Her immuneoligist gave her the pneumocal vaccine in April of this year and it started a flare within two days for her. She was put on the same antibiotic that she had before ( rocephin) that took the colitis away for four years straight.

 She developed C- dif from the antibiotic this time. She just had a colonoscopy done yesterday and her entirely colon is inflamed again. The new gastro is concerned with how inflamed it is and he thinks that c- dif is still there. He prescribed the second dose of flagyl yesterday, and wants us to start her on Imuran.

 I have been keeping up with all the latest on things, and actually printed out the Probiotic therapy home infusion protocol to take to her doctor. I will be taking it to her immuneoligist  tommorrow and to her gastro On September 9. Keep me posted on anything else.  I am sure they both will discourage the treatment.  I am keeping my fingers crossed.

 We have her brother's stool ( he's 6 or her sisters stool she's 8) we would love anyone that has done the procedure to give us their opinion on it.

Posted 8/25/2010 1:49 AM (GMT 0)
Hey guys! I heard someone mention earlier that they had salmonella. I know how to cure it! It's so simple it's hard to believe. All you have to do is eat cilantro.

I've caught salmonella three times in the past two years from eating Wal-Mart produce*. The first time, I was totally sick for about seven days because I didn't know what I had or what to do for it, and I felt so awful I didn't want to get up out of bed and go to the doctor. Then I got on the internet and found out it was salmonella. I found an obscure website which said that cilantro would kill salmonella bacteria.

The next time I got salmonella, I knew right away because I recognized the characteristic abdominal rumblings in the early stage. I started eating several fresh cilantro leaves every few hours, and the salmonella was wiped out before it could get off the ground. Same thing happened the third time I got salmonella.

*I know for sure I got salmonella from the produce at Wal-Mart. I carefully retraced everything I had eaten the week before the salmonella started. It had all come from my own refrigerator, and only one other person in my family had gotten sick. I knew there was only one thing that only I and the one other person had eaten. The first time, it was a mango. The second time, it was fresh garlic. The third time, it was grapes.

I see a lot of you get tired after doing fecal transplant. Here's why I think that might be happening. There's something called die-off reaction. When you have a lot of bad bacteria in your colon, and you kill a lot of it all at once, the dead bodies of the bacteria release toxins into your colon, which are quickly absorbed into your bloodstream. It can cause fatigue, weakness, or flu-like symptoms.
Posted 8/25/2010 3:28 AM (GMT 0)

 http://scienceblogs.com/aetiology/2007/12/fecal_transplants_to_cure_clos.php

The post number  96 is the post that has the complete directions on the fecal transplant.

 

Post Edited (haileys letter) : 8/24/2010 9:45:14 PM (GMT-6)

Posted 8/25/2010 11:24 AM (GMT 0)
Quick question for those like Subdued who have done this technique - what did you use for delivery? I have been looking into the supplies and there appear to be disposable enema bags you can get, re-usable enema bags, and then there are enema syringes.

What is the best option here?
Posted 8/25/2010 1:35 PM (GMT 0)
I just wanted to add an update to my progress. I completed 10 days of home transplants in early July and am still doing fine. One interesting note I observed was that since I completed the transplant, I was a little conflicted as to whether or not I should continue taking my 2 Lialdas per day. I wasn't showing any flare symptoms at a the time. I experimented by not taking them first 1 day, then later on 2 straight days, etc. After a couple of days off Lialda, then taking it again, I actually noticed a little blood in my stool (could have been UC, or maybe hemms). But, I decided to roll the dice and come back off Lialda to see if maybe the bleeding would stop on it's own. To my surprise, it did.

I then added another 2 days of infusions with my wife as a donor, and haven't taken Lialdas since. My intestines seem to be doing great right now. I do acknowledge that it is Summer, so the time of year might be a factor, but if I can make it through Fall and Winter without meds, I will be ecstatic.

Another note, my spondylitis is doing just ok right now. I am still experiencing arthritis symptoms. These may take longer to peter out, but who knows. Currently, I am really trying to work on the mental aspect of UC. Here is an interesting read:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774724/

Good luck to all of you who are thinking about trying this. The hardest part really is just trying to find someone to be a willing participant.
Posted 8/25/2010 3:01 PM (GMT 0)
runcycle,

did you use the protocol from the cdd. Did you take antibiotics prior to the transplants?
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