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Fecal Transplant - I took the plunge! PART IV

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Posted 8/2/2010 12:15 PM (GMT 0)
Here is the link to part III

https://www.healingwell.com/community/default.aspx?f=38&p=1&m=1662417

Posted 8/2/2010 3:28 PM (GMT 0)
Jeanneac,

What is VSL #3 ?

Posted 8/2/2010 4:26 PM (GMT 0)
Hi Poo -
VSL#3 is a probiotic that has gone through some clinical trials and is thought to be helpful for UC or pouchitis. I know of a young girl who had terrible pouchitis that wouldn't respond to anything - about 8 years ago - so finally the doc started her on VSL and she went into remission.
It's expensive, but each packet (a powder you mix with applesauce or a cold drink) has 450 billion - so, figure, one packet of this has more probiotics than a month's box of Align... so per bacterium, the cost is not bad.
There is a prescription-only strength, VSL#3DS (Double Strength) that is 900 billion per packet and my prescription insurance covers much of the cost.
Posted 8/2/2010 6:46 PM (GMT 0)
Do you do anything to "prepare" yourself before you actually do a transplant?  Like it kinda makes sense to me to flush out your system before introducing *hopefully* the good bacteria into your body.

I am very very close to actually doing this, but can't seem to find a www link that works (several I've tried seem to be broken, or they just don't give the down and dirty details)  for a step by step procedure.

I'll keep ya posted if I do and what happens - probably a few days away yet though!

 

Posted 8/2/2010 6:59 PM (GMT 0)
I know Dr. Borody does a bowel prep before the infusions. I'm pretty sure his 2003 article is on pubmed. Previous threads on fecal transplant here have links to the home protocol so you might want to search those. Good luck.
Posted 8/2/2010 7:04 PM (GMT 0)
Yes, actually that's the only official info I have found was the original 2003 article by Borody et al.  Fascinating!  (I was curious what people do at home, since obviously I can't administer antibiotics to myself...)  In the methods section he also mentions the "orthostatic lavage" which I googled and found that patients drank a huge quantity of electrolite solution to clense the entire colon, sounds kinda like prepping for colonoscopy.

 

Posted 8/2/2010 7:16 PM (GMT 0)
If you go over to Jini Patel Thompson's site and go to her forum section and type in "fecal transplant" you'll get the home protocol. The poster there is carrying out the procedure on his child and has already successfully helped another child with it. I don't think many of the people here did a clear out or the abx (though your GP might give you those). My daughter's GI thinks it's good science but refuses to be involved in any way. Our family has been through all of the tests which we did through our GPs just in case we do carry this out. Has your donor been tested? As for the other stuff, you could just try it and if it works, great, if not, then try the clear out, the abx etc etc.
Also, Jini Patel just posted (on her site, you have to buy it) a teleseminar with the RN who worked with Dr. Borody to develop the protocol years ago. She mentions some interesting things like the fact that she used to add (and I think he still does but I'm not sure ) things like slippery elm, psyllium seed, natren probiotics to the mix. She was also very keen on the diets which the donor and recipient were supposed to follow. She wasn't too keen on Dr. Borody's decision to use heavy duty abx to sterilize the gut (they were not doing this before) but she did say that he was a genius and in the future we might discover that this was the best thing to do.
Let us know how it goes.
Posted 8/3/2010 3:21 AM (GMT 0)
Good new NY Times article discusses hygiene hypothesis, genome project on gut and other body bacteria, and fecal bacteriotherapy...

http://www.nytimes.com/2010/07/13/science/13micro.html?pagewanted=1&_r=2

Posted 8/3/2010 9:22 PM (GMT 0)
Hello!

I am on day three of what I tend to call PT (part-time poop transfers; such time-consuming work!). Leading up to the PT, I was bleeding and feeling terrible following a bout of food poisoning that induced a flare of UC (12 years, Asacol, 6MP). I went on Cipro for a week to clear out the infection, which smelled of sulfur and dead things. After a few days, the smell disappeared but the violent spasms and blood loss continued, so my partner and I decided to engage in some PT.

Our approach:

1. Me: Cipro for a week, largely a liquid diet.
2. Me: resume eating fiber and whole foods.
3. Partner (loving, adventurous, daring!): poops in a cup, places it in a blender with saline solution, and fills two plastic enema bottles.
4. Me: Insertion of half to a full bottle.
5. Together: we watch a movie, engage in reading, or sleep.

On the first attempt, I held the PT for about three hours; I used some of the leftovers (four hours old), and held that for another two hours of so. The next morning, I had much reduced pain and a more formed stool than I've seen in weeks.

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.

Last night was our third effort, and I was able to hold it for about six hours. This morning, I woke up exhausted, but I've been bleeding less and feeling less abdominal pain, both of which are welcome!

I'm optimistic about this process. Whether this feeling of increasing wellness is the placebo effect in action or medically accurate, I don't care. Anything that reduces the pain and inspires me to eat is good.

Question: has anyone else feel a similar level of exhaustion? I feel like it is a healing exhaustion, but wow, I couldn't move this morning!

I'll post more as we move forward. Wish us luck!
Posted 8/6/2010 12:45 PM (GMT 0)
tesaktz,

I felt sickly while trying to hold the FT, I also remember feeling tired as part of the over all sickly feeling.

I did three FTs in 4 days a week ago. I was in pretty good shape before that, with diarreah 4 or 5 times a day, but no active bleeding. I have improved to 1 primary BM (usually in the morning) or a combination of solid and semi-solid stools, maybe 3 or 4 very small BMs throughout the day (mostly very small discharges of mucus), with almost not urgency or cramping. I've had a bit of gas though.

I am very encouraged that the benefit of the FT has stayed with me and not dwindled away. I have also stayed on a pretty restricted diet in the hopes of not irritating my colon.

My donor has been out of town, but I intend to try to do 1 FT per week in the hopes than I can work my way up to a total cured state.

It sounds like doing the FTs at night seem to work best. I'm wondering if it will be okay for me to refrigerate the donation until evening? My schedule is about to get busier with school starting soon and it will be difficult to dedicate most of a day to this proceedure.

What do you all think about refrigerated donations kept for 6 hours or so before use?

 

Posted 8/6/2010 2:46 PM (GMT 0)
The last 2 days, I tried FT.  My "donor" is an evening producer, so both times it has been late afternoon or evening, and I have been able to do the "transfer" pretty much right away.  I was surprised that I had no trouble holding it.  Both nights after doing this I slept really really well and woke up about an hour later than normal.  I didn't feel at all sick or weird or off, just slept well. 

I will try this for a week and give a more comprehensive chat about what I did and what the results were.  I can't belive I'm doing this, or telling anyone I'm doing this, but it certainly is an interesting biological experiment!

 

Posted 8/7/2010 10:45 AM (GMT 0)
killcolitis,

I looked up Jini Patel Thompson and became interested in an article she wrote about raw (unpasturized) milk. I always loved milk and cheese and I've been a little bitter that with UC I've had to give up all dairy products :-(

But this article suggests that the problem is pasturization of milk.

http://ezinearticles.com/?The-Raw-Milk-Cure&id=986854

This second article by Jini is about breast cancer but explains more clearly what is harmful about the pasturization of milk.

http://ezinearticles.com/?Breast-Cancer-Cure---Could-Dairy-Be-The-Culprit?&id=1149818

So with very little effort, I found a local, organic farm that sells raw milk and cheese from raw milk. I drank it in 8 oz. glasses at a time (dure to fear of a bad reaction) but noticed my gas and bloating diminished within a couple hours. So I drank more. I think I drank 32 oz. last night and about a half lbs. of cheese. I slept through the night and I seem to not be producing mucus at all this morning.

Here's a link to help people find raw milk in your area, if you are interested:

http://www.realmilk.com/where1.html#ga

Cheers Ya'll !

Posted 8/7/2010 2:26 PM (GMT 0)
HI Poo Bare, that's great. Are you still doing well with after the FT?
Let us know how you do with the raw milk. I've read Jini's protocol about it and it makes sense. We use goat's milk or sheep's but not cow's, though we don't use raw. It's illegal in Canada and though I could find a farmer who sells it locally I'm still a little worried about the dangers of it (though I drank it myself as a child).
thanks for keeping us updated.
Posted 8/7/2010 9:49 PM (GMT 0)
Hi killcolitis,

I definitely improved with the FTs. My BMs got much more solid, but I also got gasy, bloated and produced more mucus than before. Also, since my donor is a mid-day producer, FTs took most of a day for me. And then I felt sickly the rest of the day.

Today is the second day with the raw milk and I feel GREAT!!! I feel completely normal! the gas and bloating is much less, (almost completely gone) BMs solid, and no mucus. Raw milk is not legal for human consumption here either (Atlanta, GA, USA) but organic farms sell it for "pet consumption". Reading their website, it is clear that people are drinking it because they use all sterile equipment and chill the milk to 34 degrees as soon as it comes out of the cow.

From what I read, it is only non-pasturized milk that has the probiotic bacteria needed. All pasturized milks are damaged. I was causious about this too because dairy was something I had to give up over a year ago due to it causing severe bloating and flares and bleeding for me. But that was pasturized dairy products.

so, I'm hoping this positive trend continues because then I can do raw milk and not have to do FTs anymore.

I'll keep you posted !

Cheers!

Posted 8/8/2010 12:30 AM (GMT 0)
I will also be interested to see how you continue with the raw milk. I have read a lot about it, I had enough trouble just trying to find Pasteurized milk, not Ultra-Pasteurized here in KY! But in my search I did come across an article that said some people with IBD had eliminated their symptoms by drinking raw milk.

We move to a new state in 2 weeks and there it is actually legal to buy it from farmers so I hear it is a lot easier to find! That may be the first thing I do, find a farm with raw milk!
Posted 8/8/2010 4:53 AM (GMT 0)
Poo Bear,
Keep us updated. It was dumbfounding to me when I was researching raw milk that one of the main propents of the "raw milk cure" was one of the founders of the Mayo Foundation (now the Mayo Clinic).
I"d try raw milk if it were me with UC (I used to drink it as a small child) but since it's my child I'm scared of the salmonella risk etc. Might try it though. Good luck.
Posted 8/8/2010 12:04 PM (GMT 0)
Hey Everyone,

I had a bit of a down turn last night and this morning. But I don't yet think it is due to the raw milk. Especially since I was feeling so good and improved so much with it.

I had an orientation for my new job yesterday and gave in to the temptation to have a cup of coffee (non-organic coffee, with non-organic sugar and hazelnut flavored coffeemate, yuk). It was delicious, but coffee has proven to be very bad for me in the past.

Also, I had a vegetable soup that normally I put through a strainer to get the biger vegetable fibers out, but I didn't strain it this time.

Also, I was taking Jarodophilous and stopped taking it when I started the raw milk.

Also, I'm beginning to really feel the stress with school starting in a week and I will be teaching and going to grad school and working an internship and working my home remodeling business for extra cash, and I have SO much to do before next Monday!!!

Honestly, I think it was the coffee. And I'll probably just need a couple days to repair the damage and I'll be right back on track. But I'll keep you all posted so you'll know if the raw milk is working for me.

Cheers!

Posted 8/10/2010 1:44 PM (GMT 0)
AmyGrace:

Do you mind posting what you did while you were pregnant as far as prep for FT's? I am doing better by having added back my Rowasa enemas but have cheated on the SCD diet...just very difficult to keep up. I have 1-3 BM's a day with some blood in stool. Otherwise I feel pretty good. I hate knowing I am taking medication while pregnant but what else can I do at this point!??
I know my GI doctor won't be open to FT's but I am going to mention it to him anyway. Just wish he was open minded..i think I might switch to someone else.
I was flaring midly as I am now when I found out I was pregnant so I am hoping I dont get any worse.

My husband and I recently did a stool culture. His came back fine ..mine came back negative except it said I had no normal enteric flora which I found very interesting but it also made since.

I also had an allergy test done and apparently have some food allergies.

Anyway...would love to hear what you did!!

Thanks

KK!
Posted 8/10/2010 8:39 PM (GMT 0)
Well, I did try this, and here's my little story. 

I have a healthy 3 yr old donor.  I did 4 consecutive days of FT (used a cup and fork and distilled water/saline solution to mix, used empty enema bottle for the transfer).  I was very surprised that I was able to retain this concoction all afternoon and evening and through the night.  Had urgency in the mornings after I did it, but that isn't too abnormal for me, I guess.  I also was able to do it, lay down for 5 or 10 minutes, then get back up and resume my day as usual.  No abdominal pain or weird feelings afterwards either.  For the 4 days I did it, I did NOT notice any changes in my symptoms.  I had about 3 bloody bm's each morning and pretty much felt fine the rest of each day, same with the 5th day.  On the 6th day after I started I had to do an enema for a flex. sigmoidoscopy.  Rectum looked good but sigmoid colon had some swelling and lots of little red dots.  Had 5 bloody bm's that day.  Now it's day 7 after I started and I only had 2 bm's this morning with greatly reduced quantity of blood.

In addition to the FT, I am trying to totally clear out my system and basically start all over again.  I ate a mostly liquid diet all day on day 6 and all day on day 7 (today), NO sugar, grains, dairy, nuts, etc.).  So I realize I've made several drastic changes all at once, but maybe that's what it will take to reverse my current mode of being.  Time will tell what happens next, and since I'm doing this all at once it will be tough to tell what made a difference, if there is one (which I certainly hope there is, for the better!).

Posted 8/11/2010 3:17 AM (GMT 0)

Hi KK

I was already on a low residue diet, but the recommendation from Dr Borody via my GI was to eat a low-fibre diet for 2 weeks, and then fast the day before the first transfer and then switch immediately to a high fibre diet. I was to do the transfer for 5 days and then weekly for maintenance if required. It is often recommended to take an initial course of antibiotics, however this was not deemed necessary for me.

The treatments definitely worked as a maintenance therapy during my third trimester. It was unpleasant, but I'd already been hospitalised twice and things weren't looking good for me which is why I was so keen to try this.

My husband was my donor.  Fortunately he is an evening pooper, so I did the transplants before bed.  The sample size was anywhere between 100 and 300 gm, which I mixed with an approx equal amount of saline.  The enema bags were sent to me from Dr Borody's clinic.  Administered whilst lying on my left side (bottom half slightly elevated if possible) , then lay on my back, right side and tummy for 10 minutes each.  Then a nice long hot bath!

Am happy to answer any queries you have.  Best of luck!

amygrace

Posted 8/11/2010 1:49 PM (GMT 0)
Amygrace...thank you so much! I am currently doing better since having starting using rowasa enemas again. Would love to get off of them at some point but dont want to make any drastic changes b/c of my pregnancy. I will probably mention this to my OB/GYN and i'm sure i will get some CRAZY looks from him but we will see. As for the GI doc....I am i search of a new one!!
Posted 8/11/2010 2:54 PM (GMT 0)
I think my ob/gyn was happy for me to do it as he wasn't keen for me to use IV steroids again, and didn't have any experience with remicade during pregnancy. I gave him one of Borody's papers to read that I had printed off the internet - probably gave the whole process more legitimacy than if it had just been me explaining it to him. When I initially asked my GI about it, he seemed skeptical, but concede it was worth talking to Borody as my UC was so out of control! It would be nice if all medicos were so open-minded.

Good luck!!

Posted 8/12/2010 1:17 AM (GMT 0)
I had FT to treat IBS at Dr. Borody's clinic in 2003, and unfortunately it didn't work.

I found it nearly impossible to reach Dr. Borody. Have others had recent success reaching him? Also, at their clinic, I'm also wondering if they still supply stool from a set of screened donors, or if you have to bring your own donor?

Thx.
Posted 8/13/2010 12:27 PM (GMT 0)
I am curious and fascinated by FT for gastrointestinal problems. I see that C. Difficile and UC have been two of the major illnesses which have seen many people with fantastic results.

I am curious about using it for severe IBS-D. I am both excited but fearful to do something that would further exacerbate things, but I do have the luck of a young son (5 years old) who is in incredibly good health, has healthy stools, and there is a part of me that would imagine this could really be my "cure".

I did a CDSA 2.0 test (Genova Laboratories) which showed poor levels of major bacteria in my colon (no bifido for instance), and frankly my IBS has no cramping, pain or anything else, just constant and chronic D, which started a couple of years ago with no sign.

I have had two colonoscopies with nothing being found, along with capsule endoscopy, upper GI tests, etc.

I just have a strong (very strong) feeling this has to do with a flora imbalance in my colon.

Any views here on such a procedure? Any downsides? Anyone made worse?
Posted 8/13/2010 12:45 PM (GMT 0)
HI I'm new to this forum also

But I've looked into this procedure alot.

Is it pretty common that most of you in this forum have taken antibiotics at some point in
your life before you developed your IBD?

For sunspot, you are lucky to have a healthy 5 year old.
As far as the extensive research I have done, the biggest risk is you contracting whatever
your donor has... aids Hepatitis etc. So you have no worries there

The real truth is from all my research I've realised this is pretty common in the animal world.
Ocassionally I used to see my old dog eat some crap from another dog, and thought you stupid
dog. Crazy how animals seem to be way ahead of us, turns out that dog knew what he was doing.
Elephants do it, its a procedure used by horse owners also.

You situation sounds similiar to mine, although I have IBS-D, but I wouldn't call it severe.
However I do eat pretty well, so it might get severe it I eat junk constantly.

I've spoken to Australia, and I still plan to ask a few more ?'s.
I haven't heard of anyone having a major complication form this procedure. I have read about
a few who didn't get better, or relapsed after 6 months or so. I'm not sure why that is.

1 ? I have for all of you is "Did you follow Borody's procedure and take antibiotics before performing
the transplant" ?
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