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Fecal Transplant - I took the plunge! PART IV

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Ulcerative Colitis
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Posted 8/25/2010 3:54 PM (GMT 0)
Tankor,

I didn't take antibiotics (unless you consider the antibiotic effect of mesalamine), but that might have been a good thing:

https://www.healingwell.com/community/default.aspx?f=38&m=1883932

The only aspect of the CDD protocol I used was the number of infusions. I went with 10 days because I wanted to give the new bacteria every opportunity to set up shop. But, really, it's impossible to know how many infusions you need ... there are way too many variables.

Good luck.
Posted 8/25/2010 9:45 PM (GMT 0)
runcycle, did you do the colonic lavage before hand, and the 1 day fast also? What about the low fiber diet?
Posted 8/26/2010 4:30 PM (GMT 0)
tankor, no I didn't do either of those. Here's a link to the thread where I tried to describe my process:

https://www.healingwell.com/community/default.aspx?f=38&p=4&m=1662417
Posted 8/30/2010 5:11 PM (GMT 0)
hi runcycle,

just wondering how you are doing?
Do you think antibiotics caused your condition in the first place.
Posted 8/31/2010 1:31 AM (GMT 0)
Hi tankor. My colon seems to be doing fine. I am still off of my meds. My arthritis still bothers me, though. My shoulders hurt pretty much all the time, and my SI joint and mid-back pain comes and goes. I'm scheduled to see a new Rheumatologist in a couple of weeks, so hopefully he'll be able to help me get this pain under control.

Have you tried fecal transplantation yet, or are you still in information gathering (and nerve build-up) mode?
Posted 8/31/2010 3:40 PM (GMT 0)
hi runcycle, I have every intention of performing the procedure. I just keep changing my mind about how I will
perform it. I've switched between using antibiotics and not using antibiotics literally 8 times. I was back on the
antibiotic train until a few days ago when I read about a mice study, where the transplant worked better on
mice who hadn't received antibiotics prior to the procedure.

Did you think that intestinal flora is related to arthritis? I guess you expected fixing one problem would help
another. You may have to give it time. Perhaps lacking intestinal flora made you vitamin deficient in stuff
like calcium etc. But I'm sorta guessing, I really have no clue
Posted 9/1/2010 12:08 PM (GMT 0)
If you have the ability to so so, try the non-antibiotic method first. It does seem to have a positive effect, and as long as you know the health history of your donor, it won't be as much of a health gamble. In my case, unless I lied to the doctor about having a condition that required certain antibiotics, I wasn't going to be able to get them.

I do think that intestinal flora is linked to my arthritis, but the reasons could be many. Here is an interesting read about how bacterial antigens effect (or even cause) Reactive Arthritis, which is very similar to IBD related arthritis:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC387405/

Honestly, some of these arthritic reactions (IBD, Reactive, etc.) are so similar, I don't know how science is able to separate them. I think this is where genetics comes into the equation. Our bodies respond differently to bacterial invasions based on how our immune system perceives the threat.

My hope was that by restoring the bacterial homeostasis with fecal transplantation, the colony could return to it's original immune functions and not be up-to-no-good. Maybe you're right. Maybe it does just take a long time.
Posted 9/9/2010 10:38 PM (GMT 0)
anymore updates.

I'm still 3 weeks away or more from attempting the procedure
Posted 9/11/2010 10:59 PM (GMT 0)
Not me, I am still working up a plan myself. And courage.
Posted 9/13/2010 2:15 AM (GMT 0)
Igot some Raw Milk today and I am a little afraid to try it since I am on my last day of Pred w full remission but want to be prepared to try something else if when I go off it I have a flareup. Is it safe to drink with the impaired immunity one would have on Pred? I have moderate UC with terrible achey bones and joints when in a flareup.
Posted 9/22/2010 5:01 PM (GMT 0)
where are all the updates .. I went through the other parts 1,2,3 & everyone was updating constantly.
Maybe alot of them are cured and don't need to update anymore. wouldn't that be great!

I do think alot of you are crazy. Some of the people performing this procedure talk about eating pizza
and halloween candy within days of performing it. I think thats a big mistake.

My plan was to drink raw milk afterward the transplant to help boost the immune system. I was also
going to juice some cabbage juice a few times to help heal any colon damage.

I know were all alittle food deprived at times, but I think if your gonna perform a procedure like this you
should try & do everything you can to increase its chances of working.
Posted 10/30/2010 3:10 PM (GMT 0)
Tankor - did you try the procedure? Any updates from others please?
Posted 10/31/2010 2:07 AM (GMT 0)
Hi idkwia. My colon is doing great these days. I've been completely off all meds for the last 4 months or so. My arthritis never really calmed down, however, and it forced me to get a prescription for Humira that I started taking about 4 days ago. So far, so good with the Humira. I've definitely noticed a difference.
Posted 11/1/2010 1:01 PM (GMT 0)
no I haven't attempted the procedure yet. Just difficult to line things up with
a donor as I don't have a child of my own.

But I think I will do in less than 2 weeks for sure this time.
Posted 11/17/2010 8:47 PM (GMT 0)
tankor: What is your current plan ?

Donor/ways of ingestion/diet

I'm basically in the same boat as you (to restore my intestinal flora which I believe is causing my acne. I have no diagnose of any intestinal diesas but I think that heavy use of acne antibiotics has taken it's toll. Ironic though, acne antibiotics giving me acne) and so no change to get a doctor for this procedure.

Maybe someday in an enteric capsule
"We are developing a more aesthetic version of fecal bacteriotherapy which is safer and potentially more effective with a view to employing it in the treatment of C. difficile. The same procedure could be employed with allogenic samples to treat obesity. An autologous faecal sample, provided by the patient before medical treatment, is stored in a refrigerator. Should the patient subsequently develop C. difficile the sample is extracted with saline and filtered. The filtrate is freeze dried and the resulting solid enclosed in enteric coated capsules. Administration of the capsules will restore the patient's own colonic flora and combat C. difficile (1)."

Any thoughts on this or on neutralization of the gastric acid (which I presume will enable an oral way)?
Posted 11/19/2010 6:23 PM (GMT 0)
Well I've been delayed a bit, not my choice, but just have to accept whatever time my donor will
be available.

I agree that acne antibiotics such as accutane destroy intestinal flora. You may want to get a stool
analysis done, they can give you an idea of the state of your intestinal flora.
The capsule treatment you quoted is probably a ways off. For now doing by enema is the way to go imop.

My plan is fairly simple. Just eat a good diet for a few weeks to hopefully reduce intestinal inflammation, which
I rarely get bleeding and usually just a tiny tiny bit if I do anyways, but still it works better they say with less
inflammation. I will juice fast a few days before, and possibly do a colonic or water enema the day of.
Then perform the fecal transplant, and just try to repeat it over & over as much as possible.

The stool analysis I had said I contained zero bifido bacteria, which is the bacteria in the large intestine. So
I'm very confident it will restore some of that species with an enema.

I will report my success/failure after I'm finished.
Posted 11/26/2010 8:23 AM (GMT 0)
tankor: Are there are cheaper alternatives for a stool anaylisis than Metametrix's ?
Posted 11/28/2010 6:23 AM (GMT 0)
I dunno.

I have heard on some forum that if you order it somehow yourself
instead of going through a doctor you can save $100 or so

I also heard that there is new stool analysis tests that have come out that
are far more accurate than the one I did. It is possible to test zero
for a bacteria but still have it in your system, it just died before making
it to the lab, or they couldn't culture it.
Posted 11/28/2010 6:33 PM (GMT 0)

tesaktz said...
Hello!

The second attempt wasn't as successful. Rather than an evening transfer, we did it in the morning, and I wasn't able to hold it as long. I was quite sick in the evening, feeling pain and losing more blood.

I thought the protocol insists you are in remission and not bleeding nor flaring ?
Posted 11/28/2010 6:35 PM (GMT 0)

runcycle said...
Tankor,

I didn't take antibiotics (unless you consider the antibiotic effect of mesalamine), but that might have been a good thing:

Good luck.

How long has it been successful ? I was pretty high on this process until I started seeing people saying they had to repeat it after 6 months.

Thanks
Posted Yesterday 3:10 AM (GMT 0)
Hi aguywithuc. I think I gave myself 10 straight days of infusions in late June/early July. Then, another 3 days of infusions towards the middle/end of July. I stopped all UC meds in August sometime and did not need any meds at all until the end of Oct. when I started Humira for my arthritis that never went away. My colon had been fantastic since mid July, though, leading up to when I began the Humira, and it still is functioning fine.

If you plan to try FT, you have to do it right. You need to find a healthy individual who is willing to donate stool for at least a week and you have to be there when they do (obviously not in the same room, though, lol). Making sure your colon is mostly healthy, eating right, not using antibiotics or anything else that can effect the population growth of the bacteria is crucial to the success. Some may argue that baby poop is ideal, but I don't agree. Bacteria in infant intestines are set up to digest a limited range of carbohydrates, proteins, etc., and to defend themselves against a limited range of harmful bacteria. Adult feces, in my opinion, has a more diverse range of bacteria that have the ability to perform more complex functions, which would include the defense against the pathogen(s) that are triggering the excessive immune response.
Posted Yesterday 3:42 AM (GMT 0)

I believe the thinking is that the procedure should work best when the colon is less inflamed, but lets face it, for most people its the kind of treatment you use when you are really sick and nothing else is helping!

I did FTs when I was pregnant and in a severe flare which wasn't responding to anything. It definitely worked for me, but only as a maintentance therapy...I reckon I did between 30 and 40 transplants over the course of 4 months. Not terribly pleasant, but it kept me feeling well and allowed me to get off prednisone for the second half of my pregnancy.

Posted Yesterday 4:10 AM (GMT 0)
I did a FT a year or two ago, and it worked great ... for 6 months. However, I only used one infusion (my wife was the donor), so I definitely did it "wrong". 6 months of relief for 10 minutes of work was more than worth it for me though. Since then I've been using diet modification to control my UC (every other day fasting), but once I have 5-10 days vacation I will likely try the FT protocol the right way.
Posted Today 3:18 AM (GMT 0)

runcycle said...
Hi aguywithuc. I think I gave myself 10 straight days of infusions in late June/early July. Then, another 3 days of infusions towards the middle/end of July. I stopped all UC meds in August sometime and did not need any meds at all until the end of Oct. when I started Humira for my arthritis that never went away. My colon had been fantastic since mid July, though, leading up to when I began the Humira, and it still is functioning fine.

If you plan to try FT, you have to do it right. You need to find a healthy individual who is willing to donate stool for at least a week and you have to be there when they do (obviously not in the same room, though, lol). Making sure your colon is mostly healthy, eating right, not using antibiotics or anything else that can effect the population growth of the bacteria is crucial to the success. Some may argue that baby poop is ideal, but I don't agree. Bacteria in infant intestines are set up to digest a limited range of carbohydrates, proteins, etc., and to defend themselves against a limited range of harmful bacteria. Adult feces, in my opinion, has a more diverse range of bacteria that have the ability to perform more complex functions, which would include the defense against the pathogen(s) that are triggering the excessive immune response.

Thanks RC. My daughter is bugging me to try it using her ( 10 years old ) as the donor. She has a habit of forgetting to flush so quite often there remains a reminder of what she is offering me.

:)

Christmas break I will have her for a week and if I continue to do well with no bleeding and 1-2 times per day BM's then its really NOW OR NEVER :)
Posted 3/2/2011 8:08 PM (GMT 0)
Hi everyone. No posts to this thread lately which is a shame. Can anyone give us some updates on how things are going please? Have any of you tried FT for the first time?
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