Fecal Transplant and Diet (SCD currently)

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Briggs
Regular Member


Date Joined Oct 2012
Total Posts : 66
   Posted 10/18/2012 9:56 AM (GMT -6)   
I just joined, so I'll give a quick intro first:

I was diagnosed with UC about 12 years ago. I'm pretty sure it started due to being on antibiotics for strep throat. I
was put on sulfasalazine which didn't help much, and prednisone which seemed to make it worse. I was having 15-20 bloody BMs a day. Then about 8 years ago I developed an anal fistula which required surgery. The surgeon recommended I go on Remicade to help the fistula heal (since it wasn't healing after surgery due to frequent BMs), and that helped control my symptoms fairly well - I went down to 5-8 soft BMs a day, generally loose and urgent, but no blood or mucus. I want to come off the Remicade though.

My GI changed my diagnosis to Crohn's disease because of the fistula (saying people with UC don't get them), but I'm very skeptical of that change in diagnosis.

I started the SCD 6 weeks ago, and now have 2-3 solid BMs a day, very normal.

I've been doing a LOT of reading of research papers lately (I'm a scientist - I like to understand how things work), and am more and more convinced that for UC, a fecal transplant can be a way to expedite the healing process. I am fairly confident my UC was brought on by antibiotics causing a bacterial dysbiosis in my colon.

The SCD aims at correcting that bacterial dysbiosis by starving off bacteria by taking away their food source (complex carbs), and allowing the balance to gradually be restored. But, that can take years if you are relying on dietary intake to restore the balance (and the probiotics aren't going to help much with that since they are mostly transitory, a small number of strains, etc.).

The FT seems to be a quick way to restore a healthy ecosystem in the colon. But, there are some issues - an inflamed colon can make it harder for the bacteria to take hold, for example.

Anyway - I am planning on doing FTs at home. My wife has graciously agreed to be the donor - we still need to have her tested for pathogens though.

Before I start (and for the first week probably), I'm planning on taking Klaire Labs – Interfase Enzyme Supplement to help eat away any biofilm that invasive bacteria may have built up in my colon, to make it easier for the implanted bacteria to move in and take over.

Right now, I'm not planning on taking antibiotics though, because I am hoping that the SCD has done a decent job of starving off a fair amount of any invasive pathogens.

My wife is a "morning poo'er", which will create some challenges. In particular, I will need to do the transplant in the morning, while the poo is fresh. That is going to make it hard for me to do during the week. I may be able to do it on Tuesday and Thursday mornings occasionally due to my schedule, but not MWF.

So, I will initially be doing them on the weekend, and hopefully Tuesday and Thursday (so 4 days a week), probably for a month or two - and then tapering off. At least that's the plan right now.

My next Remicade infusion would be in a couple weeks, and as of right now I am planning on not doing it, with as well as the SCD seems to have improved things. I'm hoping to start the FTs next weekend (about 9 days from now), to give some time for that to start before the REmicade fully wears off (it's been 8 or 9 weeks since I had it).

One big question I have - while doing the FTs, should I stay on the SCD? For how long? It seems like once a healthy intestinal fauna starts to be re-established, it might be beneficial to eat some complex carbohydrates to help feed them. My diet on the SCD has been very low carb. Bacteria feed on carbohydrates, not protein and fat.

Any thoughts on that?

Also, any suggestions on the transplant would be great. I'm reading through all the threads here on the topic, finding it very interesting (I've also read all the papers I could find on the subject).

Thanks!

Briggs
Regular Member


Date Joined Oct 2012
Total Posts : 66
   Posted 10/18/2012 10:11 AM (GMT -6)   
Oh, I forgot to mention - I'm still trying to decide whether or not it would be worthwhile to do a "lavage" to clean things out before my first transplant. Most of the Borody studies talked about using a Polyethylene Glycol lavage to flush the colon before the first transplant. But, I read here: www.everydayhealth.com/drugs/colonic-lavage-solution that Polyethylene Glycol should not be taken by people with colitis.

Perhaps I should ask my GI about that.... (BTW - my GI is supportive of this, although he said he can not do the procedure for me. At most hospitals, any new procedures done have to be approved by an Institutional Review Board (IRB - the same process I have to go through when doing any studies on human subjects in my own research). He did not feel that the IRB would even consider the process since it has not been approved by the FDA - the FDA can't decide how to categorize it, so hasn't approved it)

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 9088
   Posted 10/18/2012 12:03 PM (GMT -6)   
Doc, Glad to see someone here with some medical and scientific knowledge that also has the disease. Glad your wife has decided to help. I probably haven't read up on this as much as you have but I did want to say that the one person I heard of that had a glowing success from the FT was someone who used a blood related donor who had a similar genenitc makeup. I believe it was one of his children if I remember correctly. I am interested in your thoughts on much of this, not necessarily the FT, so please don't disappear. Much of what you posted are along similar lines of some of the thoughts running through my mind. I believe my UC is related to either the Epstein Barr Virus being in a biofilm in my colon or related to the antibiotic Levaquin which I was taking upon my first symptoms. Please keep in touch.
Asacol 400mgs 2 pills X 4; VSL#3 112.5mgs 1 pills X 4; Renew Life 80B probiotic 1 pill X 4; DGL 400mgs 1 pill X 3; Monolaurin 300mgs 2 pills X 3; Vitamin D 5000 ius 1 pill X 2, Slippery Elm at bedtime only

Discontinued: Prescription - Glycopyrrolate; Natural - enteric peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Lactaid, Zymactive

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 10/18/2012 12:15 PM (GMT -6)   
I don't have much to say about the FT and SCD, but I also developed an anal fistula and have UC. However, I was (and still am) in complete remission at the time and it formed after I had a perianal abscess drained -- up to 50% of perianal abscesses lead to fistulas in completely healthy individuals.

It's my understanding that fistulas form in CD patients independent of an abscess, due to the inflammation affecting all layers of the rectum, instead of just the innermost layer as with UC. So if you didn't have an abscess and were flaring at the time, I'd also question whether you have CD instead.

My CR surgeon and GI both think that I have UC, and that my abscess/fistula were not at all related to my UC. I'm just one of those unlucky people who got one. I also have a relatively strong family history of anal abscess/fistula, as my maternal grandmother and uncle have both had them.
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Currently expecting second child, due in early March 2013

Lodi
Veteran Member


Date Joined May 2012
Total Posts : 680
   Posted 10/18/2012 3:24 PM (GMT -6)   
Hi Dr. Briggs,

I wish you all the best on this trial of yours! I sure hope it works. And please keep us up to date.

I tried to get into an FT trial in Canada but I live too far away and cannot move to the city that it's in.

I've read something that drs who do FTs tend not to use women as donors because of hormonal issues. I would check that aspect out a bit.

Also, a person who might answer your question about SCD is Paul Jaminet. Look at his series on bowel disease and in particular his post about bacterial therapy aka Fecal Transplant

http://perfecthealthdiet.com/2010/07/bowel-disease-part-iv-restoring-healthful-gut-flora/
diagnosed (colonoscopy/biopsy) Feb 2012; U/C throughout entire colon but only partly inflamed?
taking oral Mesasal; Salofalk enema nightly
supplement with Mutaflor; fermented cod liver oil/butter oil; vit B12; magnesium
I avoid gluten and dairy, I eat pastured meat and eggs; some produce; avoid processed food as much as possible; I use olive oil, coconut oil and butter; water kefir

Bacon Girl
Veteran Member


Date Joined May 2011
Total Posts : 5490
   Posted 10/18/2012 4:00 PM (GMT -6)   
doesn't hurt to try it! i did the 10 days of flagyl before i did my 8 FT's but i'm not sure if that mattered or not. it was still a very difficult experience for me. it requires a lot of preparation, cleaning, and help. it is 100% a two person job. if your wife is willing to help, then by all means, give it a shot. i didn't notice any positive benefits from doing it but like any procedure/medication, it helps some people and doesn't help others.

i would stick with SCD while doing the procedure. my only question is why do you want to do this? you said you're having normal bm's on SCD. why would you possibly want to mess this up? before my transplants, i was going 7 times a day and that quickly went up to 15-20x a day.
Joanna, 23
currently: 10,000 iu vit D, Sacro B, 1 tsp cod liver oil, 1/2 tsp l-glutamine, 4 mg astaxanthin
tried: canasa, rowasa, entocort, pred, 6mp, remicade, lialda, welchol, bentyl, LDN, cipro, flagyl, VSL enema, vit E enema, 8 fecal transplants, terramin clay, aloe vera, zofran
diet: paleo/scd 8/17/12 after 5 yrs GF vegan.
no dairy/legumes/grains/starches/seaweeds/fodmaps.

Lodi
Veteran Member


Date Joined May 2012
Total Posts : 680
   Posted 10/18/2012 5:14 PM (GMT -6)   
Banana girl, those are wise words!

Bloom93
Regular Member


Date Joined May 2012
Total Posts : 299
   Posted 10/18/2012 5:47 PM (GMT -6)   
 Dr.Briggs,
 I strongly support fecal transplant.We did for our 18yr old (UC) for  C.diff. after treating with vancomycin.After the home fecal transplant she had a solid 5 months med free remission.My daughter follows the SCD diet. She is back on medication now as a precaution being a college freshman.We are waiting for fecal transplant trial from her GI.They said they are waiting for FDI approval. If you see improvements after the initial few days of transplant try to get back to normal diet to feed the new flora.We missed doing this.Make sure to taper the transplant slowly rather than stopping it after few days.
Hope and pray this will bring you out from remicade and UC symptoms.

Briggs
Regular Member


Date Joined Oct 2012
Total Posts : 66
   Posted 10/19/2012 9:36 AM (GMT -6)   
Thanks for all the responses everyone.

Bananagirl - while the SCD is working for me, the reason I'd like to do this is so that I can hopefully go back to a normal diet. I have a 1 year old and 3 year old at home, and it is rather cumbersome to make separate meals for the rest of my family and me.

Also, the science of FT makes a lot of sense.

A quick overview of my thoughts on UC, etc...:

My sense of what is likely causing my disease is a bacterial dysbiosis brought on by repeated antibiotic use, disrupting the normal balance of bacteria in my system. There is no history in my family of GI problems - so the idea that I just suddenly developed an auto-immune disorder while in my mid-20s never made sense to me.

It seems far more likely that the problem is bacterial in nature. If antibiotics kill off a good portion of our intestinal fauna (and multiple studies have shown that both UC and CD patients typically have about 25% fewer strains of bacteria in their intestines than healthy people, supporting this), that can create room for a pathogenic strain to take over.

I would think that the strain that takes over in one person versus another could cause significant variation in presentation of the disease - and could be the reason for the great variance in symptoms and also what works for some of us.

Anyway - the idea that my immune system all of a sudden decided to start attacking my own colon, or "forgot" how to shut off (the two theories that seem to be pushed by many practicing GIs) just don't make sense. It seems far more plausible that our immune system is reacting to a pathogen (likely a bacteria) that has grown out of balance in our intestines.

When you get a stomach virus, your immune system triggers to try to flush it out (diarrhea, etc.). Bacteria though can physically adhere to the intestines, so aren't effectively flushed out through this process - thus the immune system stays on, and the continued inflamation leads to ulceration, etc. etc..

So, the goal should not be to shut off our immune system (which is what Remicade, Humira, etc. do), but to instead re-establish a healthy intestinal fauna, removing the pathogen that our immune system is reacting to. The aim of the SCD is to starve off the overgrown bacteria by eliminating their food source (complex carbs). But, re-establishing a healthy fauna can take years with the diet alone, as you are reliant on gradually adding good bacteria back through diet (plus you aren't feeding intestinal bacteria while on the diet).

So, it seems like an approach of killing off invasive bacteria (either with antibiotics or IMO preferably with SCD) and then implanting a healthy intestinal fauna is a more thorough way of fixing the problem.

It may not work in everyone, likely for a variety of reasons. There can be differences in:
1. the protocol used,
2. how hard the invasive bacteria is to kill/displace (for example, the MAP bacteria suspected of causing most CD is very resilient),
3. whether active inflamation is preventing the new bacteria from establishing themselves,
4. the quality of the donor material (both the quality of the donor's intestinal fauna, and how well it was preserved and implanted),

With UC and CD, it also seems reasonable that it could take repeated transplants to finish the process since overgrown bacteria could have established themselves fairly deep in the tissue. So, I am expecting that I will likely be doing transplants for quite a while (hopefully 4 days a week for a few weeks, then 2 days a week for a couple months, then 1 day a week, then every other week, etc.).

My current plan is to start the transplants next week, and stay on the SCD for until a week or two after the Remicade has worn off (which won't be long from now). If I am not having any problems while on the SCD and doing the transplants, I will then gradually add in some complex carbs to help feed the new bacteria - probably starting with some rice.

bananagirl said...
doesn't hurt to try it! i did the 10 days of flagyl before i did my 8 FT's but i'm not sure if that mattered or not. it was still a very difficult experience for me. it requires a lot of preparation, cleaning, and help. it is 100% a two person job. if your wife is willing to help, then by all means, give it a shot. i didn't notice any positive benefits from doing it but like any procedure/medication, it helps some people and doesn't help others.

Did you have your donor tested to make sure you weren't introducing a new pathogen into your system? I remember reading a thread where you were talking about your process, but I can't find it at the moment.

Also, were you flairing at the time? From the research, it appears that active inflamation makes it much harder for the new bacteria to implant themselves.

Briggs
Regular Member


Date Joined Oct 2012
Total Posts : 66
   Posted 10/19/2012 9:42 AM (GMT -6)   
garylouisville said...
Doc, Glad to see someone here with some medical and scientific knowledge that also has the disease. Glad your wife has decided to help. I probably haven't read up on this as much as you have but I did want to say that the one person I heard of that had a glowing success from the FT was someone who used a blood related donor who had a similar genenitc makeup.

Gary, most of the studies I've read have indicated that there doesn't seem to be any significant difference in the results related to whether the donor is a blood relative or not.

There aren't similar issues as far as rejection of an organ with an organ transplant, since our goal isn't to actually transplant the donor's tissue, but rather the bacteria resident in the donor's colon (which shouldn't harbor any genetic material from the donor).

[quote]Much of what you posted are along similar lines of some of the thoughts running through my mind. I believe my UC is related to either the Epstein Barr Virus being in a biofilm in my colon or related to the antibiotic Levaquin which I was taking upon my first symptoms. Please keep in touch.

My view is that for most of us our disease is likely a result of some pathogen (bacteria or virus, but probably more likely to be a bacteria) that our immune system is trying to flush out, ineffectively.

What makes you think it's the Epstein Barr Virus in your case? Have you tried taking a supplement like the one I mentioned that I'll be taking to eat away biofilm before I start my procedures?

Briggs
Regular Member


Date Joined Oct 2012
Total Posts : 66
   Posted 10/19/2012 10:16 AM (GMT -6)   
Lodi said...
Hi Dr. Briggs,

I wish you all the best on this trial of yours! I sure hope it works. And please keep us up to date.

I tried to get into an FT trial in Canada but I live too far away and cannot move to the city that it's in.

I've read something that drs who do FTs tend not to use women as donors because of hormonal issues. I would check that aspect out a bit.

Lodi,
Interesting, I haven't seen that come up anywhere (the issue of hormones). At most, I would only think that would be a transient problem (i.e. if my wife's poop has a lot of estrogen in it for some reason - although I wouldn't think it would - that won't cause my body to keep producing more estrogen after the treatment is over).

On a related note - I've had some thoughts about why it seems that there seems to be a high incidence of moms having kids with IBD but not a similar strong correlation between dads and kids having IBD. Based on what I've read, newborns don't actually start out with a sterile colon - they actually pick up bacteria from their mothers. If the mother has a bacterial dysbiosis, then that is likely to be passed on to the newborn, potentially causing IBD problems.

[quote]Also, a person who might answer your question about SCD is Paul Jaminet. Look at his series on bowel disease and in particular his post about bacterial therapy aka Fecal Transplant

http://perfecthealthdiet.com/2010/07/bowel-disease-part-iv-restoring-healthful-gut-flora/

Yup, I've read through that.

Bacon Girl
Veteran Member


Date Joined May 2011
Total Posts : 5490
   Posted 10/19/2012 10:18 AM (GMT -6)   
dr. briggs, i totally agree with all that you've written . i think it's retarded so think that the immune system just attacks itself if it's not provoked by something, such as a bacterial imbalance or some other problem.

i know that it's recommended you follow SCD for 1-2 years. so do you plan on doing one FT and then stopping SCD or still doing SCD while you do all the FTs? this might backfire if you are already doing so well on SCD.

i was flaring at the time of my transplants. i was able to hold it for 6-8 hours on the first few days and then no more than 2 hours the next. i was only taking bentyl at the time and had just finished flagyl. my donor was not tested but she passed the checklist with flying colors- which is really hard to find. she wasn't experiencing any symptoms of illness so i was fine with using her. her doctor wasn't being cooperative with doing the tests since i wasn't having it done at a hospital. i would've had to pay out of pocket and i just didn't have it. i do think we were not compatible since our diets were vastly different (i was a vegan and she ate everything) and i'm sure that played a role at the strains of bacteria being introduced. i'm pretty confident my UC was caused from years of antibiotic and laxative usage. i figured FT had to help, but it just didn't. i was planning on doing it for as long as needed, but after 8 days, i felt like death.

i used dr. borody's protocol just because that's what all the other people and doctors i know used. which one are you using? it can get really messy, but i recommend straining the solution after it's blended. it will go through the enema much easier and won't clog. and definitely wear a face mask or open the windows! the smell can be pretty nasty after it's blended. i'd say the biggest tip is to prepare two enema bottles before you lay down and dispense it. that way, if one gets clogged, you don't have to get up and make another. another reason is so if you just can't hold the first one in and let it out, you have a back up one ready for you.
Joanna, 23
currently: 10,000 iu vit D, Sacro B, 1 tsp cod liver oil, 1/2 tsp l-glutamine, 4 mg astaxanthin
tried: canasa, rowasa, entocort, pred, 6mp, remicade, lialda, welchol, bentyl, LDN, cipro, flagyl, VSL enema, vit E enema, 8 fecal transplants, terramin clay, aloe vera, zofran
diet: paleo/scd 8/17/12 after 5 yrs GF vegan.
no dairy/legumes/grains/starches/seaweeds/fodmaps.

curl3d
Regular Member


Date Joined Feb 2012
Total Posts : 382
   Posted 10/19/2012 2:15 PM (GMT -6)   
Hi Dr Briggs,
Great to see that you are as convinced as I am about Fecal Transplants being effective. Not sure if you read my threads and the journey I took about 7 months ago but I would repeat the same procedure without a doubt if I ended up flaring again. Your thoughts about how this disease works are very close if not equal to my own. I also did a lot of research around fecal transplants (safety, effectiveness and so on) before I decided to do it myself.

I am not however a huge believer in "tapering off" FT's, I just don't see the logic. And this is why; The goal with FT is to establish a normal balance of bacteria by overwhelming the colon with bacteria of the right balance and give this bacteria the upper hand against "bad bacteria" when fighting for the food that exists in your colon. This is where SCD and complex carbs come in. Complex carbs more often end up in our colon because its harder for our body to break them down. This is the only reason there is any logic in SCD at all. What's often missed in SCD is that a lot of fruit actually contains complex carbs as well, like apricots for example.

I seem to get lost in my ramblings so recouping - So what should be the food tactic when doing FT? Well I think most protocols suggest (and I agree with this) that your donor should eat a fibre rich diet. My wife ate porridge for example. Your own diet prior to transplant should be without complex carbs as much as possible. I would focus on avoiding eating gluten and starches and also the most obvious sources for sugar like candy. I have read that some protocols then suggest that you switch to a high fibre diet after you have started doing FT. I personally think this is a bit of a guessing game. How would you know how well you have achieved balance? You wont! And if you start feeding too early then you risk feeding the inbalance again.

There will be enough food in there for sure to feed the good bacteria if your wife is eating a high fibre diet so I really don't see the purpose of adding in more complex carbs yourself. Another problem is that you won't reach your entire colon with your infusion so what if part of your colon has an incorrect balance and the lower part is correctly balanced? You could potentially as I see it then feed the wrong bacteria at the top of your colon while you are doing the bombarding at the bottom.

I also don't entirely buy the whole concept of "bad bacteria". I think it just may be an inbalance that you have to try to correct. When you have a flora which is not in balance then this can lead to this self reinforcing inflammation loop which you have to get out of with medicine sometimes (this is my conclusions from what I have read).

Anyway I should probably stop before I become too confusing. I hope you could follow my reasoning. Best of luck with your FT and feel free to ask any question about how I did things
Status: In remission since beginning of April 2012
Diet: No gluten, no starches and avoiding eating much sugar.
Medicine: Asacol 4x100 daily
FT: Performed Fecal Bacteriotherapy at home using my wife as donor starting the 29th of February for 27 days. Please see tinyurl.com/bw5fn8g for the procedure I used

curl3d
Regular Member


Date Joined Feb 2012
Total Posts : 382
   Posted 10/19/2012 2:25 PM (GMT -6)   
To borrow a term from a US president; I think FT should be done with a "shock and awe" (starve... starve... massive consistent attack for a lengthy period) approach rather than a tapering one! :-)
Status: In remission since beginning of April 2012
Diet: No gluten, no starches and avoiding eating much sugar.
Medicine: Asacol 4x100 daily
FT: Performed Fecal Bacteriotherapy at home using my wife as donor starting the 29th of February for 27 days. Please see tinyurl.com/bw5fn8g for the procedure I used

curl3d
Regular Member


Date Joined Feb 2012
Total Posts : 382
   Posted 10/19/2012 3:11 PM (GMT -6)   
and just a last comment so I don't miss answering your original question with all my ramblings; I see complex carbs as "fuel on a fire for people with UC" and I don't really see the purpose of reintroducing much complex carbs even after FT is done. I think people who have UC are prone to get into this state of an incorrectly balanced colon for the rest of their life. There is carbs in everything we eat and I'm sure there will be enough to feed the bacteria down there without eating gluten or starches. We didn't eat gluten or much starches 5000 years ago so I doubt our bodies are very well adapted or need them. Unless you believe in intelligent design of course - which I don't.

In saying this; if you _really_ miss starches and gluten then sure go ahead and fight to reintroduce them. I don't really miss them that much so I'm probably going to stay away from them.
Status: In remission since beginning of April 2012
Diet: No gluten, no starches and avoiding eating much sugar.
Medicine: Asacol 4x100 daily
FT: Performed Fecal Bacteriotherapy at home using my wife as donor starting the 29th of February for 27 days. Please see tinyurl.com/bw5fn8g for the procedure I used

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 9088
   Posted 10/19/2012 3:58 PM (GMT -6)   
Dr. Briggs:

You may very well be 100% right in everything you said, except for one thing. People do develop autoimmune diseases of all different kinds just out of the blue for no known reason. Obviously there is always a reason, its just that medical science can't explain it yet. While your explanation may very well wind up being the fact you may also find out in the end that your theory didn't pan out and you are left with the preverbial "ideopathic" cause. It's also possible that even if you wind up being 100% correct in your particular case it may not apply to hardly anyone else as many of their causes may be ideopathic. I highly encourage you keep on going though and keep us informed and I certainly hope that you find not only the answer for yourself but others as well (including me).
Asacol 400mgs 2 pills X 4; VSL#3 112.5mgs 1 pills X 4; Renew Life 80B probiotic 1 pill X 4; DGL 400mgs 1 pill X 3; Monolaurin 300mgs 2 pills X 3; Vitamin D 5000 ius 1 pill X 2, Slippery Elm at bedtime only

Discontinued: Prescription - Glycopyrrolate; Natural - enteric peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Lactaid, Zymactive

tankor
Regular Member


Date Joined Aug 2010
Total Posts : 121
   Posted 10/19/2012 7:12 PM (GMT -6)   
A know a fair bit about this procedure and it sounds like you've done ur homework also Briggs.

I would recommend eating whatever foods are safe in the short term, then slowly build up ur diet
from their. I strongly advise to do your best to hold infusions for as long as possible, which I think
means eating less. It has to be harder to hold infusions if your stuffing food down the other end.

Don't ever get complacent with this procedure. Its bacterial warfare going on & you need new species
to implant & colonize. So if your feeling 100% better don't start thinking your cured & running out eating
everything in site. You may think your cured but their could still be old flora lurking around just waiting for
any chance to multiply and dominate again. When you think you've done enough infusions do 5 more

The people who have had the best results with this procedure are the ones that put the most effort into it.
In some cases they have done well over 10 infusions. So be persistant.

GL

Briggs
Regular Member


Date Joined Oct 2012
Total Posts : 66
   Posted 10/22/2012 8:14 AM (GMT -6)   
Sorry for not responding sooner to everyone - with a 1 year old and 3 year old at home, I have no free time on weekends. TGIM! tongue

bananagirl said...
i know that it's recommended you follow SCD for 1-2 years. so do you plan on doing one FT and then stopping SCD or still doing SCD while you do all the FTs? this might backfire if you are already doing so well on SCD.

Here is my theory: I think the reason that UC and CD sufferers need to spend a couple years on the SCD before they can gradually come off is that while the SCD is effective at quickly starving off a pathogen that has taken over our colon, it is very slow at replenishing a healthy fauna.

The probiotics we consume in the homemade yogurt (or by pills) are primarily transient species, and only make up a very small percentage of the normal bacterial community in a healthy intestine. So, we are reliant on gradually rebuilding a widely varied bacterial community through other foods, which is a slow process that takes years - especially since we are eating a diet that doesn't provide much food to bacteria in the colon.

So, my thought is that I can use the SCD to help "clean the slate" in my colon (instead of using antibiotics) - and I would think that being on the diet for a couple months should hopefully have done a decent job at that.

The other issue is making sure that the biofilm in the intestines that the bad bacteria have built needs to be removed - so good bacteria have a place to re-establish themselves. See here for example: bodyecology.com/articles/biofilm-how-this-slimy-coating-is-causing-chronic-fatigue-fibromyalgia-irritable-bowel-and-more#.UIVIZ29Y3Sg
That is the reason for taking the enzymes - to eat up the biofilm. While the diet may have starved off the bad bacteria, the homes they built are still there, which could inhibit the implanted bacteria from taking up residence.

bananagirl said...
i was flaring at the time of my transplants. i was able to hold it for 6-8 hours on the first few days and then no more than 2 hours the next. i was only taking bentyl at the time and had just finished flagyl. my donor was not tested but she passed the checklist with flying colors- which is really hard to find. she wasn't experiencing any symptoms of illness so i was fine with using her.

She could be an asymptomatic carrier of something though. My wife will be my donor, and even though she has perfect bowel habits, she's getting tested just to make sure.

bananagirl said...
her doctor wasn't being cooperative with doing the tests since i wasn't having it done at a hospital. i would've had to pay out of pocket and i just didn't have it. i do think we were not compatible since our diets were vastly different (i was a vegan and she ate everything) and i'm sure that played a role at the strains of bacteria being introduced. i'm pretty confident my UC was caused from years of antibiotic and laxative usage. i figured FT had to help, but it just didn't. i was planning on doing it for as long as needed, but after 8 days, i felt like death.


I'm not an expert on this, but my thought is that it would be worth trying it with a different donor (preferably testing this time), and after taking enzymes to eat biofilm - and ideally getting the inflammation under control.

bananagirl said...
i used dr. borody's protocol just because that's what all the other people and doctors i know used. which one are you using?

A variant of a couple. I'll be doing the transplants via enema, with that procedure being basically the same as what others have done here. Due to my schedule I won't be able to do them every day, so I'm hoping to do every other day for a couple weeks, and then start tapering back.

bananagirl said...
it can get really messy, but i recommend straining the solution after it's blended. it will go through the enema much easier and won't clog.

Thanks for the tip - after reading some of the other threads on it, I made a shopping list this weekend and got my supplies (including a strainer, etc.). I still need to get a new blender though.

bananagirl said...
and definitely wear a face mask or open the windows! the smell can be pretty nasty after it's blended.

I'm going to try a tip I learned while being involved in animal rescue operations with the animal shelter I volunteered at for many years - put some Vick's vapor rub under the nose, and that smell can over-power the senses.

bananagirl said...
i'd say the biggest tip is to prepare two enema bottles before you lay down and dispense it. that way, if one gets clogged, you don't have to get up and make another. another reason is so if you just can't hold the first one in and let it out, you have a back up one ready for you.

Ah, that makes sense.

One question - why do most people use enema bottles instead of enema bags?

Post Edited (Dr Briggs) : 10/22/2012 9:30:54 AM (GMT-6)


Briggs
Regular Member


Date Joined Oct 2012
Total Posts : 66
   Posted 10/22/2012 8:31 AM (GMT -6)   
curl3d said...
Hi Dr Briggs,
Great to see that you are as convinced as I am about Fecal Transplants being effective. Not sure if you read my threads and the journey I took about 7 months ago but I would repeat the same procedure without a doubt if I ended up flaring again. Your thoughts about how this disease works are very close if not equal to my own. I also did a lot of research around fecal transplants (safety, effectiveness and so on) before I decided to do it myself.

Yup, I read through your threads - very interesting!

curl3d said...
I am not however a huge believer in "tapering off" FT's, I just don't see the logic. And this is why; The goal with FT is to establish a normal balance of bacteria by overwhelming the colon with bacteria of the right balance and give this bacteria the upper hand against "bad bacteria" when fighting for the food that exists in your colon.

True. I don't know if the tapering off is really necessary or not - I didn't mean it in the same sense as tapering off of a med like prednisone, but rather just continuing to do them periodically, but at lower frequency, just in case the good bacteria are having trouble "taking root".


curl3d said...
There will be enough food in there for sure to feed the good bacteria if your wife is eating a high fibre diet so I really don't see the purpose of adding in more complex carbs yourself. Another problem is that you won't reach your entire colon with your infusion so what if part of your colon has an incorrect balance and the lower part is correctly balanced? You could potentially as I see it then feed the wrong bacteria at the top of your colon while you are doing the bombarding at the bottom.


Ah, that's a very good point.

What I am currently planning on doing is staying on the SCD for a couple more weeks, until the Remicade has fully worn off, so I can assess how I am doing with the transplants and SCD without Remicade helping out.

If everything is hunky-dory, then I'll try some rice. If everything is still good, then I'll try a little more "SCD illegals".

curl3d said...
I also don't entirely buy the whole concept of "bad bacteria". I think it just may be an inbalance that you have to try to correct.

I think it can be either - it probably varies from person to person. For example, in the case of C. diff colitis, you can definitely say that there is a "bad bacteria" that has taken over that you want to get rid of. Similarly, some Crohn's disease is likely caused by Mycobacterium avium subspecies paratuberculosis.

But, in some of us it may not be so much that there is a bad species but rather that we have an imbalance, and in particular are lacking in certain good bacteria (bacteroides seem to be lacking in most people with UC, for example).

curl3d said...
Anyway I should probably stop before I become too confusing. I hope you could follow my reasoning. Best of luck with your FT and feel free to ask any question about how I did things

Thanks, I appreciate it!

Post Edited (Dr Briggs) : 10/22/2012 9:30:10 AM (GMT-6)


Briggs
Regular Member


Date Joined Oct 2012
Total Posts : 66
   Posted 10/22/2012 9:04 AM (GMT -6)   
curl3d said...
and just a last comment so I don't miss answering your original question with all my ramblings; I see complex carbs as "fuel on a fire for people with UC" and I don't really see the purpose of reintroducing much complex carbs even after FT is done. I think people who have UC are prone to get into this state of an incorrectly balanced colon for the rest of their life. There is carbs in everything we eat and I'm sure there will be enough to feed the bacteria down there without eating gluten or starches. We didn't eat gluten or much starches 5000 years ago so I doubt our bodies are very well adapted or need them. Unless you believe in intelligent design of course - which I don't.

In saying this; if you _really_ miss starches and gluten then sure go ahead and fight to reintroduce them. I don't really miss them that much so I'm probably going to stay away from them.


I probably won't go back to a high-starch diet like I used to be on - but I definitely would like to be able to occasionally eat pizza with my family, some fried rice, etc..

Since I feel my problem was caused by antibiotic use, I would think that restoring a balanced fauna in my colon should let me go back to eating complex carbs - but I'll just have to wait and see. In the few studies that have been done on this, there has been no mention of people needing to stay on a special diet - so I'm hoping that will be the case.

That said, I probably won't ever go back to a diet that centers around starches, like I used to eat.

Briggs
Regular Member


Date Joined Oct 2012
Total Posts : 66
   Posted 10/22/2012 9:20 AM (GMT -6)   
garylouisville said...
Dr. Briggs:

You may very well be 100% right in everything you said, except for one thing. People do develop autoimmune diseases of all different kinds just out of the blue for no known reason. Obviously there is always a reason, its just that medical science can't explain it yet.


Here's the problem with that statement - when current medical science can't explain something, they tend to just label it an autoimmune disease. Hell, fecal bacteriotherapy has even effectively "cured" people of multiple sclerosis (www.2ndchance.info/inflambowel-Borody2012.pdf) - something which most doctors label as an incurable autoimmune disease.

I have had many people as students in my classes who have gone on to become MDs, and one big problem with our medical system is that we don't train doctors to *think*. These students go through educational systems that encourage them to simply memorize, regurgitate, and forget information. They don't develop critical thinking skills, and don't really learn how science works (a process of making observations, hypotheses, coming up with experiments to test those hypotheses, etc. etc.) - and the result is a medical community that views knowledge of how our bodies work as if it were religion, as if Mose's came down from the mountain with a copy of Grey's Anatomy, and our level of understanding is complete.

So, yes, people are *diagnosed* as developing autoimmune disorders at almost any point in their life - but more and more evidence is pointing to the source of those disorders as being something very different than just their immune system suddenly starting to attack itself for no reason.

Particularly considering the skyrocketing rates of many autoimmune disorders (including IBD), it seems highly improbable that genetics is the source, rather than environmental factors (including the use of antibiotics, antibiotics in our food, dietary changes, etc.).

garylouisville said...
While your explanation may very well wind up being the fact you may also find out in the end that your theory didn't pan out and you are left with the preverbial "ideopathic" cause. It's also possible that even if you wind up being 100% correct in your particular case it may not apply to hardly anyone else as many of their causes may be ideopathic. I highly encourage you keep on going though and keep us informed and I certainly hope that you find not only the answer for yourself but others as well (including me).

Thanks, and I'll definitely keep everyone appraised of how it goes. I'm optimistic, but very cautiously so.

I think the reason there is so much variation in what works for one versus what works for another is that there can be a huge range in what kind of bactieral dysbiosis IBD sufferers can have. Bacteria that build up a strong biofilm can be much harder to eradicate, for example, than those that don't - as can bacteria like MAP that we continually expose ourselves to through our diet.

Post Edited (Dr Briggs) : 10/22/2012 9:29:32 AM (GMT-6)


Briggs
Regular Member


Date Joined Oct 2012
Total Posts : 66
   Posted 10/23/2012 7:25 AM (GMT -6)   
For those of you who have done a fecal transplant - did you do any bowel cleansing beforehand? For example, Borody recommends a lavage with polyethylene glycol (i.e. Miralax) beforehand.

Also, has anyone tried enzymes for eating biofilm? I'm still a few days away from starting the transplants, taking the enzymes right now, and having some .... "interesting" experiences with them. I'm trying to take them as far away from meals as possible (time-wise), since otherwise the enzymes will primarily be used for food breakdown rather than breaking down biofilm.

I'm generally experiencing a lot of gas starting about 45 minutes to an hour after taking the pills (belching, farting, stomach pain), and if I take 3 or more pills, I also get diarrhea (which I'm otherwise not having at all right now).

For example - last night I took one pill before going to bed, and two pills when I got up during the night to pee (I usually have to a couple times at night - I drink a lot of water). about an hour later I woke up with severe stomach pain, and spent a while trying to get some gas out. Eventually I went to the bathroom and had some diarrhea that was surprisingly foamy. Again, my stools have been very well-formed since starting the SCD, so there is definitely something going on with the enzyme pills.

I'm wondering if that is an indication that the pills are actually eating up biofilm in my GI tract. Presumably the gas would be from breaking down the exopolysaccharides in the biofilm.

BTW, this is the enzyme treatment I'm using:
klaire.com/images/InterFase_Update.pdf

Any thoughts?

Bacon Girl
Veteran Member


Date Joined May 2011
Total Posts : 5490
   Posted 10/23/2012 9:23 AM (GMT -6)   
dr. briggs, i fasted for 24 hours beforehand with just liquids but i didn't do a cleanout. it wasn't necessary with all the crapping i was doing.

do you think you really need the enzymes? i've read that very few people even need them and it's only people who have tested positive for enzyme deficiencies that would benefit.

as for why most of us didn't use an enema bag, probably because it's more to clean. that tube is really long and if poop gets clogged in there, it would be hell to clean out. even just cleaning it in general would be messy. i reused my FLEET enema bottles but i've heard some people just buy new ones for each transplant.

and to answer your question about doing it again. i don't think i would just because of how laborious the process is and the no benefit part of it. luckily, after i did the transplants, i had plenty of stool tests so my donor never had a disease. it just didn't work. i don't regret doing it just because i want to try everything.
Joanna, 23
currently: 10,000 iu vit D, Sacro B, 1 tsp cod liver oil, 1/2 tsp l-glutamine, 4 mg astaxanthin
tried: canasa, rowasa, entocort, pred, 6mp, remicade, lialda, welchol, bentyl, LDN, cipro, flagyl, VSL enema, vit E enema, 8 fecal transplants, terramin clay, aloe vera, zofran
diet: paleo/scd 8/17/12 after 5 yrs GF vegan.
no dairy/legumes/grains/starches/seaweeds/fodmaps.

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 9088
   Posted 10/23/2012 11:44 AM (GMT -6)   
Dr. Briggs: I really like the path you are following. I have investigated the biofilm connection myself before and there is some real good science behind this arguement. I strongly believe that the Epstein Barr Virus has been residing in my colon in a biofilm, giving me UC. Unfortunately, there is no known way to irradicate the EBV from your system. I have geared my natural treatments toward combatting EBV but have been disappointed in the results. I have not suffered any "die off" effects from these treatments with the possible exception of one. I took Zymactive for about a week. It contains several different types of protease digestive enzymes aimed at aiding in getting rid of the EBV. My UC got incredibly worse from doing this and I began bleeding every day, several times per day due to this and eventually I had to stop. My symptoms improved after getting off of it. Now you are making me wonder if I didn't panic over my condition as this may have been the "die off" I was actually looking for. Could it be that all that bleeding and worsening symptoms was actually the biofilm beginning to break down? On one hand it could but on the other hand I may be on the completely wrong track in the first place. If I knew the end result I would do it again but I'm too scared. Before the Zymactive I had actually tried Pepto Bismol as it's main ingredient has been associated with breaking down biofilms. Unfortunately, the only thing it did was turning my stools dark and nothing else.


I totally agree with you that physicians are not being doctors although I don't know if the fault really lies with them. They get their schooling and learn that there is no cause of UC and there is no cure so the only thing they can do is treat the symptoms only. Since this is what the book says they don't even make an attempt to figure out the cause, other than testing for C-Diff. Insurance is also to blame. They have their guidelines and it ties the doctors hands further in trying to actually be a doctor, trying to find out what the cause is. If the doctors were to order a bunch of tests (for example - looking for biofilms) the insurance would say, "Why did you do that? Don't you know there is no known cause for UC? We're not going to cover that". I asked my GI if he would agree to an experiment, prescribing me a medicine that worked on my first autoimmune disease to see if it would work on this autoimmune disease. Like any medicine it had side effects but I tolerated it well even at high doses. Since the medicine was not approved for treatment of UC he refused. I imagine he was trying to cover his butt in case something went wrong and it came back on him. I was very disappointed but understood. I found some of that medication laying around myself and gave it a try anyway. Unfortunately, no luck.
Asacol 400mgs 2 pills X 4; VSL#3 112.5mgs 2 pills X 4; DGL 400mgs 1 pill X 3; Monolaurin 300mgs 2 pills X 3; Vitamin D 5000 ius 1 pill X 2, Slippery Elm at bedtime only

Discontinued: Prescription - Glycopyrrolate; Natural - enteric peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Zymactive, Renew Life Probiotic 80 billion

Post Edited (garylouisville) : 10/23/2012 11:54:50 AM (GMT-6)


Briggs
Regular Member


Date Joined Oct 2012
Total Posts : 66
   Posted 10/23/2012 12:52 PM (GMT -6)   
bananagirl said...
dr. briggs, i fasted for 24 hours beforehand with just liquids but i didn't do a cleanout. it wasn't necessary with all the crapping i was doing.

do you think you really need the enzymes? i've read that very few people even need them and it's only people who have tested positive for enzyme deficiencies that would benefit.

The enzymes are ones specifically intended for breaking down the biofilm that some bacteria build in the intestine. Some bacteria build a plaque-like biofilm to live in on our intestinal walls. The biofilm protects them from things like antibiotics, and keeps other bacteria from moving in.

So, I'm not taking them to help me digest food (such as I would if I had some form of enzyme deficiency) - rather they are for the purpose of breaking down the biofilm home that some invasive bacteria build in our intestines.

For some interesting reading, see
thefunctionalmedicinecenter.com/2012/01/biofilms-key-curing-gastrointestional-infection/

If you google for "gastrointestinal biofilm", youcan find lots of articles - there has been a lot of research into that lately.

bananagirl said...
as for why most of us didn't use an enema bag, probably because it's more to clean. that tube is really long and if poop gets clogged in there, it would be hell to clean out. even just cleaning it in general would be messy. i reused my FLEET enema bottles but i've heard some people just buy new ones for each transplant.

What about disposable enema bags? This is what I was planning on using:
www.amazon.com/gp/product/B0016LG9KM?ie=UTF8&tag=digesheali-20&linkCode=as2&camp=1789&creative=390957&creativeASIN=B0016LG9KM

I'd rather not have to clean out any FLEET bottles, so being able to just use and toss one of those bags (and tube) is appealing. :)
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