August 21, 2017

Fecal Transplant Advice: Is my daughter a suitable donor for treating my eosinophillic colitis

Here is a long discussion with several messages back and forth `

Hi Michael,
I am wanting to ask if you think my daughter (aged 5 years old) would be a suitable donor for me?
I know that you have written about this in your book, and suggest that she might be too young to have developed the correct gut flora for such a purpose, but I am limited with my options..
I have been diagnosed with UC 2 years ago.
I have taken no western medication of any kind.
I have followed the SCD diet on and off for 1.5 years
I have fasted on two occasions for periods of time up to 2 weeks
I take  natural anti-inflammatories and healing remedies such as tumeric, licorice, l-glutaimine, sodium butyrate, slippery elm, more recently boswellia
Currently experiencing a flare.
Want to try the FT now but need a suitable donor.
thanks for all your efforts, your website, your book and your care
George
Type of Contact: Patient or care giver

Time: March 2, 2014 at 11:15 am
Contact Form URL: http://fecaltransplant.org/contact/

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I’m just digging through my email inbox today. Thank you for getting my book and congratulations on taking responsibility for your health and doing your own research. Before I go any farther, were you diagnosed with Ulcerative Colitis after full testing by medical doctors including stool tests to rule out colitis caused by a known infectious bacteria and did you have a colonoscopy to view the inside of the colon? Also have you ever had gastrointestinal problems before being diagnosed such as stress related diarrhea or food allergies or intolerances? I had problems with stress-related diarrhea throughout my life even before being diagnosed with UC and is appeared to play a role in the development of flares as well. As a natural remedy I believe Valerian root extract is very helpful for relieving urgency and helping slow bowel transit time as part of fecal transplants. I believe this slower bowel transit time also helps foster a more healthy balance of bacteria in the intestines.
Considering your options at the moment it could definitely be worth it to try fecal transplants with your daughter as a donor. At a minimum if your daughter has been healthy and been able to avoid antibiotics for the most part this could be very helpful. While I heard doctor’s presentations on bacteria diversity and their theories as to how much bacterial diversity was necessary for proper fecaltransplants, I think even a lack of bacterial diversity from a child can be solved going forward over time.
I also believe L-glutamine and / or whey protein powder is an essential part of healing too. I personally recommend whey protein shakes because you can get a wider range of amino acids and it’s not entirely clear to me how much more helpful L-Glutamine is compared to more protein in general. I would caution against trying too many different natural remedies at the same time, especially during a flare. Based on my experience I believe that some things that might be helpful in a non-flare state with slower bowel transit time might offer little to no help during a flare or might even become an irritant.
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Hi Michael
Thanks very much for your responseRe diagnosis, I had a colonoscopy about a year ago, along with stool and blood tests.  Biopsies taken and I was given a diagnosis of eosinophillic colitis.  Bit of a rare one it seems, but it might simply be a precursor of ulcerative colitis.  Symptoms are very much the same and mine are focused in the rectum/stigmoid areas.  Stool tests came back negative for infectious bacteria, parasites etc.  however, I’m currently having my stools and bloods tested again right now as I wanted a second opinion. My first diagnosis was made by a doc in Thailand, where I spend most my life.  I’m now in the UK, and having tests on the health service here.

I was given pictures of the colonoscopy, and a pathology report.  I can send to you if you like.  Either way, it showed very minimal amounts of inflammation, some eroisions, a few polyps etc.  It actually looked quite good, but I was also feeling pretty good at the time because I got the diagnosis during a good period.

I am now flaring again.  I skipped the second colonoscopy here in the UK because I feared it would aggrevate the ulcers/inflammation more.  So i’m just waiting on blood and stool results.

Thanks for your advice.  I agree with you that too many things at the same time is not necessarily good.  I’m a little tired of trying everything and nothing really working.  The only thing has really worked everytime is fasting!  But I’m holding off this time.  It takes so long to regain weight and get back to normal diet.

So, I think the time has come for the fecal transplant.  I’m all set to do it.  In fact I was all set last year after watching your online video instructions.

I’ll let you know how it goes anyway.  Just waiting for the right time, which i think will be in 2 weeks..

Thanks again

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Hi Michael

FINALLY….I built up the courage to do this!

I think the timing was just right because I had managed to suppress my flare to just some mucous (v. little pain, no blood (or very occasionally)).  I was still having problems with incontinence when passing wind, and I did feel that my condition was still fairly volatile.

Anyway, I did it!  A fairly complex process it seemed, and difficult not to get into a mess.  My daughter (my donor) was very interested to know what was going on behind the bathroom door.  Anyway, overcoming the mental barrier was the hardest thing.  Now that is done, i feel fine about it.

I did the second yesterday and now waiting for my daughter to go to the loo again for the third today.

I held the first in for 4 hours

Yesterday I held in for about 5 hours.

In fact not much came out, which i suspect is a good thing.

I passed good stools both days, with some accompanying mucous.

I have passed wind without anything else too!  Amazing feeling… Can’t describe the feeling in words but I’m sure you know..

Both days I felt like a 5 year old and full of energy and light!!!

WOW!

sO, anyway, I had a couple of concerns/questions if you have time, but if you don’t then don’t worry.. I appreciate all you have done so far to inspire and encourage me to do this:

1. the mixture i insert is quite liquid.  I wonder if too liquid, but it seems to be the only way it’ll flow through my enema system.  I guess if i can hold it in, then its ok right?
1b. am i right in thinking that I dispose of the solid matter that gets caught up in the mesh?
2. i get about 300ml of solution each time.  do you think that is enough?
3. my daughter now has a cold!  only mild.  do you think that’ll be an issue?  should i hold of until she gets better?

4. If i haven’t passed a stoll in the morning can i still go ahead and do the transfusion?
5. I’ve been strict with my daughters diet but its hard for her.  can she have milk (i’ve read it might be best for the donor to avoid milk during this)
6. how long should i go on for?  since the results have been so good so far, I was thinking 5 days and then see?

Sorry for all the questions…

Hope you have time to respond.  I can’t find much support elsewhere for this.

Thanks

George

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Hi George,

Congratulations on getting started. I’ll admit nerves definitely delayed me from taking the plunge. Yet then once I did I wondered why I hadn’t done it sooner. I think overcoming this fear of the unknown and of being responsible for treating oneself takes some courage.
In answer to your questions:
1. Liquid is fine and ideal as long as you can hold it in. You really need it to be basically a liquid so you do not clog the enema system and you also want to make sure it gets as far up into the colon as possible and can maneuver around any obstacles such as existing stool.
2. 300 ml (about 10 oz.) should be enough. I used an 8 oz. rectal syringe and things ended up working out for me.
3. Hopefully a cold is not a problem. I am not aware of any doctors whose protocols include stopping due to a donor having a mild cold or flu.
4. You could without having done a stool first, however I would wait until after your first stool of the day. For me this usually wasn’t a problem since I was having multiple bowel movements per day and I often waited until night time to so the fecal enemas.
5. I didn’t have my donor restrict his diet at all. If she can tolerate milk without any problems then it shouldn’t be a problem for you. Whatever is in the colon has either been fully digested in full or the person has the right balance of bacteria to help digest it. Either way if its not a problem for them I don’t think it should be a problem for you.
6. How long should you go for? That is a good question and I don’t think there is a one size fits all answer. You could try 5 days and see. I guess it really depends on how far up the colon you were able to get the enema and how much bowel transit time there has been. If you are only going once or twice a day, yet the new bacteria is colonizing then you may be well on the road to recovery. However it is hard to say. In retrospect I believe my results would have been faster and five weeks worth of enemas un necessary had I more aggressively used medications to manage inflammation the whole time I was doing the fecal transplants. If you have a flare under control such that you are not having lots of urgent and watery diarrhea then the new bacteria may become established faster.
Other considerations include if you had pre existing Irritable Bowel Syndrome (IBS) diarrhea predominant in addition to Colitis. I did and I think this made getting the new bacteria to establish and be helpful much more difficult until I treated that as well.

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Dear Michael

thank you for your response.

fortunately diarrhea has never ben a big issue for me

things still improving

thanks again for your support

George

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I’m glad you are doing well and that your case sounds comparatively
more mild than many other cases. I just re read your earlier emails.
That’s interesting that it is ulcerative colitis without diarrhea,
based on your symptoms and test results it sounds more like Proctitis
since I thought most cases of UC that go beyond the rectum included
diarrhea. The good news is that with the inflammation concentrated
mostly in the rectum then getting the enema contents there is
relatively easy and stool getting in the way would be less of a
problem. I think you are on the right track to wait and see about
further fecal transplant enemas to see where you are at now. I would
encourage lots of whey protein shakes for the next 2 -3 months, the
manly body builders kinds :) (most have high amounts of L-Glutamine in
them) so that you can speed mucosal healing and then continue with the
other things that are working.  Depending on energy level and amount
of blood loss in the past you may also want to try some Vitamin B12
and iron supplements for the next month or two as well. Then in the
future after a good 3 – 6 months of things being in good shape and the
mucosa presumably healed then you can start to re-introduce foods
previously thought to be problem foods.

I’m skeptical about the diagnosis of Eosinophilic colitis as opposed
to just Proctitis (limited to the rectum) or Proctosigmoiditis (rectum
and lowest portion of the colon just above the rectum.) I don’t know
how they could determine this based on a biopsy and without
identifying a suspected cause. Your previous treatment approach before
fecal transplants appeared to be sound based on the diagnosis, however
if the diarnosis was not correct and the problem is more of a
bacterial imbalance or lack of certain strains of bacteria necessary
for regulating the immune system that would explain why your best
attempts to treat it with diet and supplements was limited in its
effectiveness and why the fecal transplants appear to be so effective.

I not believe that very strict, limited diets are a necessary solution
to inflammation in the long term once the root cause of the
inflammation has been effectively addresses and the body has healed.
This maybe because I was raised on restrictive diets and became tired
of them and then tried very restrictive diets for years while
attempting to treat my case of Ulcerative Colitis. Many foods I
thought were problem foods not seem to be a problem anymore now that I
am so much healthier.

I believe that while diets and drugs and or supplements might be
helpful for reducing inflammation while the lining of the intestines
is inflamed, once the intestinal mucosa has sufficiently healed and
this “root problem” has been resolved then then many foods that appear
to be triggers now will most likely not be a problem in the future.

Just because previous tests did not reveal the presence of known
bacteria or parasites doesn’t mean that something was not there at
some point in the past or was an unknown parasite that they do not
have a test for. However if it was absence of certain bacterial
strains and / or an imbalance of bacteria then that would not have
appeared on any tests since the dynamics are not yet understood by
medical science and could potentially include many different
variations.

In any event it sounds like you very well may be on the right track,
so congratulations!

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Hi Michael

Thanks for your time looking into this and helping me.  It really is a contrast from the 10 minutes I get with my doctor!

So, yes, I agree that my symtoms are not quite ‘normal’ compared to the majority of ulcerative colitis stories that I hear about.  My brother has ulcerative colitis, and he and I have compared our symptoms to find that actually we often suffer from almost completely opposite problems. For example, he was bleeding heavily and I would only have drops of blood, or he had a lot of diarrhea and I am almost constipated at times..  Sadly though, most doctors jump at the hereditary link, they rarely even listen to my symptoms and then quickly make a diagnosis of ulcerative colitis for me too.

I also agree with your idea about avoiding the strict/limiting diets when possible.  I have moved away from the SCD diet since starting the fecal enemas as I feel it offers a better environment to maintain a good balance of bacteria.  I’m still being very careful with combining foods though, and I pretty much avoid anything refined. I’m really not sure if I ever had any actual problem foods as such.

I’ve also gone back to my l-gluatamine supplementation.  I have a good quality source, naturally made/fermented.  I will try the whey though, since you recommend it.

My energy levels have dropped over the last year or so since when all this started.  I put it down to the dieting mainly.  Right now, I’m feeling ok.  I never really lost much blood.  Just drops really.  But maybe vit B12 for a while might be a good idea anyway.  I’m not eating too much meat right now.  ONly fish and chicken really.

Re the diagnosis of Eosinophilic colitis, well I guess it was just a pretty clueless doctor in Thailand.  He even admitted that this was ‘out of his comfort zone’.  He siad that it is a westerners’ disease and recommended I went back to the UK to get tests and treatment.  I also think I have proctitis/proctosigmoiditis since it are these  points that I feel the burning when flaring.  Again another complete contrast to my brother, who feels the pain much higher up.

The dysbiosis argument makes a lot of sense to me.  I do worry though that it is possibly the ‘effect’ of colitis as opposed to the ’cause’.  Still, hopefully rebalancing the gut can help resume normal behaviour again.  This is my hope anyway.

I do wonder if I had (or even still have) some parasite unknown to medical science.  This is why I went down the oregano oil route before embarking on the Fecal transplants.  I thought that 3 weeks of oregano oil at a high dose might help kill off any nasties, and now I’m repopulating with a good balance of bacteria.  In fact I did notice improvements while taking the oregano oil.  The fecal transplants just seemed to take it even further.

Today I did feel like there was a slight step backwards though.  I have been having fairly good stools over the last 3-4 days (since the FTs began) but then, today, I passed stools with undigested foods.  Carrots!  This was a little disappointing but I’m putting it down to the fact that I probably still haven’t healed yet.  I still see mucus in my stools.  It kind of coats them, so must still have some inflammation.  And plenty of rumbling too.

I keep telling myself to be patient.

My daughter is being amazing!

OK, well thanks again.  I’ll persist with this, and will send you an update in a few days.

George

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You’re welcome, I’m glad I can help.

By the way did you do a complete colon cleanse, just like prep for a
colonoscopy before you started the fecal transplants? This would help
flush out much of the existing bacteria and the stool that harbors it
and even feeds it. Almost every protocol I have seen included this,
however I did not do it and thought it was un-necessary for people who
are having active watery diarrhea, however in your case where you
don’t have this problem it could be a worthwhile consideration.

I know in my case I always had some GI disturbances like diarrhea and
undigested foods even before I got Ulcerative Colitis. The initial
flare (with blood) started while I was traveling in South Africa which
lead me to believe some sort of infectious agent might have been at
the culprit. Even 60 mg of Prednisone would not stop the blood from
the initial flare. Finally it was the addition of Cipro that got me
into remission.

Many years later I also saw positive effects from another course of
Cipro and then another from about two days worth of Vancomycin.
However it always came back again.

When I was doing the fecal transplants, I had an initial improvement
and then went backwards with a flare, which I eventually beat using a
combination of various drugs which I was then later able to taper off.
However my case was very different than yours, which you have largely
managed without having to use stronger drugs. While it is hard to say
what is actually going on I believe that there is a process where the
microbiome needs to establish a “new normal.” I think inflammation
after an initial infection is treated is triggered by a lack of
certain essential bacteria. Doctors generally believe the known
differences in bacteria for those with Inflammatory Bowel Disease are
a result of inflammation and diarrhea rather than a cause of it.

I believe the answer is actually both at the same time s a
self-perpetuating loop. The gut symptoms contribute to the
continuation of the original cause, so the only way to break it is to
limit inflammation and change the gut bacteria for long enough to
break the cycle. For example watery diarrhea contributes to the
persistence of bacteria which cause inflammation and ulceration of the
intestinal lining makes the body susceptible to ulceration from foods
that might not otherwise be a problem.

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Hi Michael

Well, whether cause or effect, the FT enemas are helping thats for sure.  I’ve done 5 now and I have seen a big improvment.  I’m not 100% yet, and I did see some blood again yesterday, like there is still an ulcer or open erosion in the sigmoid/rectum that gets knocked when i pass a stool. But much less mucous, vurtually no pain (just tender) and I pass some good stools too.

I did an aloe vera enema before the first FT.  The intention was to cleanse the colon, replicate the lavage like you suggested.  Not sure if it was sufficient but it did feel good and a had a big exit 20 mins or so afterwards.

Its good to hear your story.  I’m not expecting a quick fix.  I’m focusing on a balanced diet now with lots of whole foods.  Moved away from the SCD diet.

I’m away for a couple of weeks as from Monday so will take a break from the FTs for that period, and then maybe continue when i return.

Fingers crossed what I’ve done so far will hold and the bacterial balance will continue to thrive in these conditions.

Thanks again for your help and advice

George

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