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By Michael K Hurst
Text copyright 2013
www.FecalTransplant.org
All Rights Reserved
Table of Contents
Introduction........................................................................ 6
Part 1: My Story..................................................................8
The Beginning life before the flare...............................................8
First Colitis Flare and diagnosis..................................................... 10
The anti-biotic Cipro brings about my first remission............11
I try diets for IBS.................................................................................. 12
I try the drug Remicade / New Years Eve in the E.R................15
I poop my pants on a night out (literally).................................... 15
Skin infection sends me to the hospital for 4 days................... 16
Anti-biotics to the rescue, again, for a moment.........................16
Finally preparing for surgery.......................................................... 17
I first hear about Fecal Transplant................................................ 19
I cancel Surgery to pursue Fecal Transplants............................22
Success finding a doctor.................................................................... 22
I am introduced to a mentor............................................................ 23
Finding a donor................................................................................... 25
Starting the Fecal Transplants without a doctor....................... 26
I add Bupropion and other drugs to my treatments................29
Its Gone! Im cured!........................................................................... 31
A colonoscopy reveals further evidence that I was cured!.....32
Defeating the self-perpetuating cycle of Inflammation...........33
Continued good health and lessons learned............................... 35
Introduction
Digestive diseases including Ulcerative Colitis, Crohns Disease
together known as Inflammatory Bowel Disease (IBD) is one of the
five most prevalent gastrointestinal disease burdens in the United
States, with an overall health care cost of more than $1.7 billion.
Up until now the established medical community in the United
States considers this illness to be one without a medical cure and that
it commonly requires a lifetime of care. Each year in the United States,
IBD accounts for more than 700,000 physician visits, 100,000
hospitalizations, and disability in 119,000 patients. Over the long
term, up to 75% of patients with Crohns disease and 25% of those
with ulcerative colitis will require surgery (Gut. 1989;30(3):36770)
However it is also true that over the years the medical
communitys understanding of infectious diseases has continued to
become more advanced and many illnesses that were once attributed
to other factors are now known to have bacteria as a contributing
component including stomach ulcers.
Before I go any further let me clarify that I am primarily
speaking of Ulcerative Colitis in this book. To distinguish Ulcerative
Colitis from similar illness, UC is ulceration in the large intestine
which is not caused by:
Infectious colitis, caused by a known pathogen that is typically
detected on stool cultures. This includes Pseudomembranous
colitis, caused by an infection or overgrowth of Clostridium
difficile bacteria, which usually occurs following
administration of antibiotics.
Ischemic colitis, inadequate blood supply to the intestine,
which typically affects the elderly
Radiation colitis in patients with previous pelvic radiotherapy
Chemical colitis resulting from introduction of harsh chemicals
into the colon from an enema or other procedure.
While I treated myself of Ulcerative Colitis, the most common
and best known use of this treatment at the moment is for
Pseudomembranous Colitis caused and infection / overgrowth of
Clostridium Dificile bacteria. Others have successfully used this to
Part 1: My Story
Welcome to my story of how I successfully won the fight
against Ulcerative Colitis. This illness became serious enough that I
came within 3 days of scheduled surgery to remove my colon.
Specifically a full colostomy with restorative proctolectomy. As
anyone who has gone through Ulcerative Colitis or Crohns Disease
knows it can get to the point where it can really wear you down
psychologically as well as draining you physically from loss of blood,
malnutrition and more. After nearly 12 years of this, some without
health insurance, I was ready for it to all be over and I was told
surgery would offer that.
However I still had some nagging doubts as did my family. If
this were an autoimmune disease and not some sort of an infection
then why had it suddenly started after traveling to South Africa with
my family. Why did anti-biotics seem to help me? Why did immune
suppressing drugs seem to help sometimes but not other times? If
stomach ulcers could be caused by bacteria, then why would the same
not be true farther down the digestive track? Then questions
lingered.
Before I go any further let me start by giving an overview of the
course of my illness, treatments used and more.
had gone done my pants leg and into my shoes. I went back to get my
friend and told him we needed to leave right away. He said a few good
byes while I went downstairs out into the February cold. The poop in
my socks felt cold as the other shit on my legs started to dry. My
friend came out and we got in the car. I had to drive him back to my
place to get my car and he headed back home through the city and
down interstate with the windows open to deal with the smell.
went to the new doctor and was given a prescription for Flagyl and
was also tested for known parasites and causes of travelers diarrhea.
These tests came back negative. I also wanted to give a maximum
dose of VSL #3 a try once again, (3.6 Trillion CFUs) perhaps at the
same time as Flagyl.
However the insurance declined to cover VSL #3, even the
prescription-strength version, even after my doctor wrote a note so
that I could appeal the decision. My out of pocket cost for VSL #3
would be nearly $700, so I abandoned that idea.
At about the same time, after 30 days of taking Flagyl I was still
not having any significant results. My doctor said my only option was
surgery. Based on the failure of almost every other known treatment
option his arguments made sense. However I still didnt want to do it
except as a last resort since I knew that sometimes the illness seemed
to get better. Maybe it would once again.
I then went on a cross-country book signing tour for another
book I had published, so I kept myself going using Prednisone.
However after I got back I was sick once again. My life was really
hectic when I got back, I didnt have a regular job, I had to move from
my apartment and my business as an author and speaker was at a
slow point.
was making the best of what seemed like a pretty bad situation.
However while I was home at Christmas time my parents
asked about how this would work. I originally thought I could have
the surgery and then fly home to Florida. However while discussing
recuperation time with my parents I called the nurse at the Colorectal
surgeons office and when I spoke to the nurse I learned that it was
not advised to travel on a plane for up to 4 weeks after surgery, nor
lift any object weighing more than 5 lbs for fear of it causing the
stitches to rip. I realized that I would not be able to even care for
myself so I would need to move back in with my parents while I
recovered.
I also had some other concerns and questions, what if this
illness would never get better and only get worse? Why were there
sometimes periods of remission? There was also the matter of cost,
while I had found an individual insurance plan, there were high
deductibles and copayments. The two surgeries were listed at
$25,000. My father also spoke of going abroad to have surgery. Many
of our doctors are from India and they speak English, you might be
able to find a good one there.
Ouch! Although my parents were able to cover it, I had mixed
feelings, I still didnt feel good about having to rely on them while I
was an adult, and if I wasnt going to be able to care for myself while
healing it was like I was going back to being a child.
All of these questions kept swirling through my head, but it
seemed so hard to deal with all of this. I had also sought out doctors
that had graduated from top medical schools, and gotten second and
third opinions. Could it be that all of these doctors had overlooked
something?
Since a nurse in the surgeons office in the Washington, DC area
said I wasnt going to be able to fly for a few weeks after surgery I
decided to have surgery closer to home at Mayo Clinic in Jacksonville,
Florida.
not be. It was also thought that the first one might be the most
important one.
In the meantime while waiting for I got a questionnaire for my
would-be donor, most likely my brother. The questions were pretty
standard and were mostly looking to identify the likelihood that my
donor had certain blood-born illness or bacteria or other parasites in
stool that could be transmitted to me.
Illnesses that would be tested for included bacteria or
parasites known to cause travelers diarrhea and or food poisoning. In
most cases the presence of these such as cryptosporidia, microspora
and Clostridium difficile toxin would have presented very obvious
symptoms almost immediately.
Other illnesses to test for included the blood born viruses HIV,
hepatitis A, B, and C, cytomegalovirus, Epstein-Barr virus and syphilis.
While a complete battery of blood and stool tests would be
done, once I looked at what was being tested for and looked at the
questionnaire and likelihood of these illnesses I realized that for some
people like my brother the likelihood of having any of these illness
was almost non-existent. I will go into a little more detail later about
this topic, however suffice to say that I realized the risk of getting any
harmful diseases was very low and once testing was included could be
almost completely eliminated.
Next there was the matter of arranging to travel to have the
procedure done. This was not too much of a big deal however it was
still a logistic to be considered. This would be an undertaking
certainly but I had great confidence that this could work.
I am introduced to a mentor
Dr. Kelly gave me the contact information for a woman she
knew of who said she had successfully performed the procedure at
home. A day later I called and got to talk to Sky Curtis, a health
advocate who told me that her sons case of Colitis was cured by doing
what she called Fecal Enemas.
We spoke at length for a long time and she had obvious learned
a lot about this. I asked her what she meant by cured, the conventional
wisdom was that this was an incurable illness. She said he had no
symptoms for over a year, with no dietary restrictions, no pro-biotic
supplements and was not taking any drugs for the medical condition.
Her sons condition sounded like it had been much worse than mine
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and included Crohns Colitis meaning that there was also some
inflammation in the small intestine.
Rather than 5 days she told me they had done them every day
for 3 months. Since he had been taking high doses of Prednisone, he
got used the anti-anxiety drug Ativan to help him get to sleep at night
and then gradually tapered down the frequency until they were down
to once a month and then were about to discontinue them since her
son had now been healthy for a year. I asked her about him now, and
she said he is enjoying life as a young man, I havent even heard from
him in a week.
I expressed dismay at having to do these every day for a few
months and then continue them after that for up to a year. She said we
thought we could do these for just 5 days, but that wasnt enough for
my son, it came back. So the second time around we didnt want to
take any chances. Is it necessary to do this many, I dont know, but Id
rather do more than necessary that not enough.
She kept encouraged me, I know this is going to sound kind of
funny coming from someone old enough to be your mother, but what
really bothered you the most about the prospect of having surgery. I
said to her, I know this may sound shallow, but I like being a bachelor
and dating and I take great pride in my body. How could I continue to
live this life with a bag on the outside of my body?
She said well there you have it, suck it up for a few months and
do this so you can get back to carousing with women, staying up late
at night until you crash on a couch somewhere.
What she said got through to me, and I began to wonder
whether 5 enemas were going to be enough. I also had read Dr.
Silvermans study that said low volume enemas that were selfadministered at home were just as effective. Ms. Curtis also told me
about using rectal syringes instead of an enema bag. The process she
described was much more simple than that of using an enema bag. I
asked what about waiting a few months for the doctor, she said you
could, but remember they are only planning to do the first one for you
anyway and Ulcerative Colitis could take many more fecal enemas
than c. diff Colitis. At that moment I decided, why not try this myself
first now, rather than wait 3 months.
Finding a donor
I wanted to continue to live in the Washington, DC area rather
than move home for several months, so I looked into other options.
Sky also told me that the donor did not need to be a relative nor even
the same blood type as me. She said just find someone who is healthy
and had good regular poop once a day. Also the stool did not
necessarily have to be used right away, it could be refrigerated in an
airtight container for up to 5 hours.
I started to think about who I could look for that might be a
good donor. Then it hit me, one of my clients from my coaching
program who had gotten some really great results. I knew him very
well and knew that he was pretty open-minded, so that he would at
least strongly consider what I was asking for rather than dismiss it
based on the ick factor alone.
I met up with him to go on a hike on the Billy Goat trail by
Great Falls and presented my plan to him. We would get an apartment
together and he would basically give me a stool sample a day. He
asked if anything invasive would have to happen, if there would be
any cost to him or if he would be responsible if I got sick for some
reason. I told him no.
I asked a little about his bowel habits and medical history and
then gave him the donor screen questionnaire, so far so good. In the
meantime we moved in together and I made the final preparations.
I also looked to see if I could find a lab to screen for illnesses.
Unfortunately when I called a lab they would not accept a specimen
from an individual. I called a testing company and was told that they
would only do tests upon the explicit request of a doctor.
So I asked myself the question, were tests really necessary to
determine if my donor was a suitable one? He had had an HIV test not
too long ago at a health fair, although his lifestyle did reveal him to be
high risk to begin with. He was a heterosexual white male, careful
with safe sex and no IV drug use.
I looked at the prevalence of illnesses like Hepatitis A, B, and C,
Syphillis, Epstein-Barr, very low and if someone had these illnesses
they would manifest soon after exposure. I looked at various stoolrelated illnesses, once again most of them were not found in the
United States and most of them would cause symptoms almost as
soon as detectable levels were found in stool.
So I concluded that even without tests, most of these illnesses
5
took Immodium an hour before doing the infusions and also Gas-x to
help with gas.
Within the first few days I noticed that things were getting
better, however I kept going since I still had lots of gas. I thought this
might be because the bacteria was fighting to colonize in the colon
still. I thought I should keep seeding new bacteria until I could be
confident the new bacteria had completely established itself.
In the meantime I was working a job full time and sometimes
even entertained visitors at my place. One time I went off, prepped
and did the enema then walked back to the living room to brainstorm
with my roommate and a woman I was dating. Then an hour later
made my 10 foot dash to the bathroom.
I kept going with the fecal transplants, although after first
getting better things started to get worse once again with another
flare, blood in my stool once again. It had now been about 3 weeks. I
went back on Prednisone, and when that didnt help I increased it
back up to 30 mg. I was starting to get discouraged, however my
mentor encouraged me to keep going.
After another week or so I called my old Gastroenterologists
office for a refill, the one who referred me for surgery and l and was
told by the office that I needed to come in for an appointment. I
wondered how this was going to go. In addition to going to the
gastroenterologist I decided to continue to look for other options. I
searched on the Internet and found some more options including low
dose naltrexone and Bupropion among others. While there was a lot
of discussion about Low Dose Naltrexone (LDN) there was less about
Bupropion. Although I found a study for LDN as well as some
anecdotal reports on internet discussion forums.
I also found some discussion groups where people spoke about
successfully using Bupropion (Wellbutrin) to treat Crohns Disease.
Further research found a study for Bupropion for Crohns Disease that
made it to stage 3 trials without anything ever being published. I was
puzzled about this, were no results published because it didnt work?
Or were no results published because it did work and would compete
with other drugs for Crohns and Colitis like Remicade which cost
thousands of dollars per dose. In the absence of knowing one way or
the other I was left wondering.
I went in to my Gastroenterologist who was very displeased to
learn that I had gone ahead and done the fecal transplants myself in a
8
way that was unsupervised. I showed him the printed studies and told
him about how I had talked to a doctor as well. After talking to the
prominent doctor I had planned to do the Fecal Transplants with, he
did calm down a little, however he wanted me to immediately have
stool tests done. I fulfilled his request to have a stool test done and
have another Colonoscopy. The GI doctor also insisted that I stop the
fecal enemas right away and rapidly taper off of the Prednisone. I
complied with those requests, although I ordered some Prednisone
from an overseas pharmacy when I got home to have ready and also
planned to resume the fecal transplants at a later date too.
I also asked for a prescription for Low Dose Naltrexone, shown
him the study I had printed out and explained that had a 30-year track
record as being a safe drug. However he dismissed my request for a
prescription for Low Dose Naltrexone and did not want to look at the
study I had brought with me. It was his belief that LDN was largely
quackery without scientific basis to back it up. In all fairness I later
came to doubt LDN too even though I tried it for about two months,
however I was frustrated by the way my doctor dismissed it without a
specific reason.
person might take for granted, but for me this was truly amazing. In
my mind I remember saying to myself, its gone.
It couldnt be, really, could it be that this was finally gone? Over
the next couple of days I continued to get better and better while
finishing tapering off Prednisone, from 30 mg to 0 in 10 days. The
good conditions continued. I started taking Low Dose Naltrexone at
4.5 mg even though my condition was already much better. If nothing
else I thought it would at least help support continued good health.
The starting dose was 4.5 mg in the one study I had seen LDN for
Crohns Disease, so I went with that.
After another week I thought I was good enough to stop taking
Apriso, however a few days after I stopped that I started to have some
watery diarrhea and what I thought might have been blood in my
stool. In retrospect it might have been salsa or hot sauce, but I treated
it as a resumption of symptoms. I guess it was too soon to go off it so I
went back on Apriso and the mesalamine suppositories for a few days
until I went off it again and my stool promptly started to get more
solid.
Things were going well for about another 6 weeks, while I
continued taking the low dose naltrexone, along with Apriso,
Bupropion and Silenor. The LDN had some unexpected side effects
including severe insomnia when I took it at night. A couple of nights I
got absolutely no sleep, even though I had taken Ambien and Silenor.
Later I ended up switching my dosage into the morning. I was amazed
that 4.5 mg of this drug could have this much impact when the FDA
approved dosage was 11 times higher at 50 mg. I kept taking the 4.5
mg capsules until I read on a discussion forum that many people were
using lower dosages than 4.5 mg, however I could not find any studies
that had been done at those amounts. Nevertheless I ended up giving
it a try. Since I could not split the non scored tablet into 11 pieces, I
read about how what some people were doing was crushing the pill
and dissolving it in 50 mL of water 50 mL and used an oral syringe to
measure out the amount of water so that I had 1 mL per mg in a small
yogurt container.
then I had to prepare for a colonoscopy. I was worried this
might upset the delicate balance of my newfound health. However at
the same time this would give me some proof that it worked.
reason why getting better can have some ups and downs is because of
a few reasons.
1) The lining of the colon has to repair itself after many years of
chronic inflammation. This means that the intestines will have
to heal ulcers and scar tissue which may have made the lining
of the colon have less elasticity. The damaged walls could make
it more vulnerable to various foods, especially those higher in
fiber and they may also be less able to absorb water. This could
also be a source of periodic muscle spasms and diarrhea as
well.
2) Bacteria that originally triggered the inflammation might come
back from spores or other sources to become active again.
However the new bacteria is now hopefully stronger enough to
keep it in check.
3) Diarrhea can be both a symptom of the inflammation and
inflammation-causing pathogen as well as a condition that
contributes to inflammation and inflammation-causing
bacteria.
I think that to become healthy all of these factors need to be
resolved. This might happen eventually just be treating the bacteria
alone, but I think a combination of approaches is the best way to go.
What finally got the symptoms under control for me in a very
noticeable way was when I started the drugs Silenor and Buproprion.
Silenor is a low dose of Doxepin, an off-patent (cheap) tri-cyclic antidepressant that was re-patented for "sleep maintenance" (ah, those
crafty pharmaceutical companies). Once the samples of Silenor ran
out I got a prescription for Doxepin 10 mg capsules and used about
half each time. Buproprion also known by the brand names
Wellbutrin and Zyban, is also available as a generic in all forms
including the Immediate Release form that I used initially and the
extended and sustained release forms I later used.
Bupropion was actually studied for use in Crohn's disease in a
study with results that were never published. Why were results never
published either positive or negative? Who knows. It couldn't possibly
be because if it were an effective TNF-a inhibitor, no one would spend
thousands of dollars on Remicade. You can also find some discussion
threads on the internet where people say they successfully used
Wellbutrin for Crohn's Disease or Colitis.
3
for?
As a further note you don't need anyone elses permission to be
healthy. I know I was strongly discouraged from doing this by my GI
doctor and I have heard many stories from others who have contacted
me. Unfortunately many of the bad things they claim could happen
have no basis in reality if you know about the process and have read
the studies.
I know it sounds kind of bad to say, since presumably most
doctors and other people want their patients to be healthy, and many
have been very helpful to me. However doctors also need patients to
treat or else they don't have anything they can keep doing. Perhaps
this explains why they make unfounded claims about how this could
be harmful. So I encourage you to read up about this and realize that
the worst-case scenario from receiving an enema from a healthy
donor is that it doesnt work. However the positive benefit if the fecal
transplants work for you, as they have for many others, is that you
will be healthy and likely won't ever need to see a Gastroenterologist
ever again!
While this option has worked out for some people there are also long
term risks and consequences which I thought would negatively impact
my quality of life. While at first it sounded good, the more I looked
into it the more real problems I saw. This was not a complete solution
where I would not have to do anything special for the rest of my life, it
seemed more like replacing one set of problems for another set. As I
saw if what is the point of a solution to improve your quality of life if it
diminishes it.
Advantages
- Doctor says I cant get colon cancer because you wont have one.
- Doctors say this is what I should do.
- My family will take care of me and I wont have to be responsible for
taking care of myself for at least a few months.
- There will be no need to take drugs with severe side effects
- Relatively consistent bowel movements, significantly less risk of
acute flares.
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3) Fecal transplants
This time I will discuss the disadvantages first, since there are
comparatively few. While I am obviously biased towards this solution,
because it very clearly worked me, you will see that my reasons make
perfectly good sense and can apply to your case too.
Disadvantages
- Ew, poop is icky. Come one really? If you are thinking this way ask
yourself can this really be any worse than cleaning up after crapping
your pants with bloody diarrhea, having to constantly clean your
bathroom or worse wearing a bag that you have to empty 5 - 6 times a
day for the rest of your life or adapt to a J-pouch where you have to go
5 6 times a day.
- Its not what my doctor wants me to do. Your doctor may say it will
make things worse, even if he cant support his assertions with any
published studies or even a single case study.
- People may think it is weird and wont be supportive.
- There is a very slight risk that you will get an infection from bacteria
that is missed in stool tests.
- There is a possibility a flare could occur which was either triggered
by the fecal transplants or was going to occur anyway.
- Depending on your case of Ulcerative Colitis you might have to do
these for a month or longer, which means that you should live with or
be able to easily see your donor every day during the course of
treatment.
9
of just in remission.
After the treatment has effectively seeded a healthy bacterial colony,
your intestinal lining has healed and you are having well formed stool,
you will no longer need any maintenance drugs or highly restrictive
diet to sustain remission. It has now been 15 months since I stopped
taking Apriso and my digestive health has continued to improve, it is
now better than at any point I can remember in my entire life.
In Borodys paper he documented the treatment of 6 patients
who are now healthy 1 13 years later without any maintenance
drugs and with no signs of remaining illness. In his words since the
medical establishment defines the illness as permanent and incurable
it cant be cured. But why cant that way of defining the disease simply
be wrong? The history of western medicine is littered with past ways
of understanding illness that are now considered obviously wrong
and with treatment options that are now known to cause more harm
than good, sometimes even killing or maiming the patient.
Consider also if you choose to think of things this way, can you
ever say you have completely overcome an illness? Certainly doctors
have legal and ethical obligations in their profession, which limit their
use of language, and continued vigilance to treat potential threats is
part of their job. Speaking to you as a person who wants to be healthy
and get on with your life, then you will need to think differently.
was something outside my control. Also the tools and actions to treat
this illness were not under my control, rather I was dependent upon
doctors to know what to do, to be able to prescribe drugs, tests and
procedures such as surgery.
So I thought what benefits did other people gain that I knew of.
I remember a story my father often told about my maternal
grandmother (his mother in law) who seemed to constantly complain
of being sick. While the natural response that most people will give to
a sick person is sympathy, some of my grandmothers friends knew
that dealing with her required a different approach. One time when
she was sick in bed, her friends stopped by, its too bad youre sick,
because youll miss such and suchs party tonight, you wont believe
what they are going to be doing. Well, its time to go, we cant be late.
What happened next? While, there were some legitimate reasons she
could be feeling bad including cancer, a bad back, after effects of
having Polio at college age, she got herself dressed, make-up on and
went to the party with her friends.
Basically my fathers conclusion was that while my
grandmother did have health problems she often overemphasized
being sick to gain sympathy and attention and as a way to gain and
exercise control over a situation. However when acting sick meant
missing out on life and not having fun, she would find a way to rise to
the occasion and carry on in spite of being sick.
So I challenged myself, what advantages did it offer me? How
often was I using this illness as an excuse for not being where I
wanted in life professionally, financially? Was I using this an excuse
for not taking full responsibility and to gain sympathy? In my honest
assessment, yes I was doing this. I was not always as compliant as I
could have been with medications, diets and other treatments. I
thought do I really want to gain attention and some degree of
happiness from other people in the form of pity and sympathy? Or do I
want to gain it from having a positive impact on others and by doing
great things and by being self-reliant.
If I had gone through with surgery, it would have essentially
lead me back to being fully dependent on my parents since I could not
afford the cost of surgery and other medical expenses or to not work
for a significant period of time. Even though they said they would
help me and do everything necessary to pay for medical treatment. As
an adult why should they have to be responsible and pay for this and
2
not me? While all the answers I got were, youre sick and you cant be
responsible for making yourself well, thats the responsibility of the
doctors.
Was surgery really the only option then at that time, no it
wasnt. But, had I even been doing the fecal transplants as well as I
could have, by not taking drugs like Prednisone and Apriso and
seeking other options to add to my treatment regime? So, no there
was more I could be doing to take responsibility and act in a positive
manner. I also chose to renew my focus on health and switched the
pictures in my mind. I reaffirmed my decision, to rid myself of this
illness in the fastest, least expensive most powerfully effective way
possible or die lead me to health. I decided not listen to those who
said it couldnt be done, I simply couldnt afford to. I couldnt ask
questions whose answers would not help me get healthy. So the over
arching question became how can I make this work instead of lets try
to make this work? So, I did that and within 10 days the illness was
gone
Was my sudden shift to good health because of the power of
my mind alone? No, I did many things in the physical world, drugs,
nutrition, which enabled me to make permanent the changes that the
fecal transplants had already helped set in motion by changing the
bacterial in my colon and contributed to getting better. However this
single-minded focus on health was what led me to make the physical
decisions.
So I challenge you as a patient with Ulcerative Colitis and / or
Crohns Disease to be brutally honest with yourself. I say this not as to
blame or feel bad about yourself, but to enable you to take full power
and responsibility for your life.
- Am I really doing everything that I can to make myself well?
- Is there more I could be doing to make myself well?
- What advantages does it offer you to continue to be sick,
emotionally, monetarily, in life in general?
- Do you believe you need permission from others to be well?
- In what ways are you rewarded for being sick, in terms of gaining
attention, having an excuse to avoid doing things you dont want to do
or are afraid of doing?
- In what aspects of life do you gain power, or having to take risks?
- What would you lose if you were healthy?
3
precaution because some parasites that may not cause any noticeable
harm in a healthy person might impact a person whose health and
immune system has been weakened by Colitis.
d) Ideally your donor would live with you or practically next door so
you can get stool while it's fresh. Someone from your immediate
family would be ideal, however it does not have to be a family
member. I actually used one of my former clients from my dating
coach business and we got an apartment together.
e) Another consideration, pick someone who is relatively thin and
generally matches who you are as much as possible. At the time of
writing there has been some research showing that gut flora can play
a role in whether or not someone becomes overweight and even some
experimental research to see if Fecal Transplants could help people
who are obese.
It is also possible that gut flora might also impact many other
aspects of bodily functions including hormones and could potentially
impact autoimmune diseases as well. So finding someone who is free
of as many diseases as possible is key. Finding a person with a similar
body build as you would also be ideal although it is hard to say how
necessary this is. In my case my donor was a man with a similar body
build, tall and thin and about 5 years younger than me.
Eating a diet relatively high in fiber can be helpful to make sure your
donor goes on a regular basis. I dont think it is necessary to alter a
persons diet significantly while they are donating other than to
ensure regular bowel movements occur. If there are no problems I
dont see a need to change anything.
10) Use the stool immediately or close the air tight container and
refrigerate it for up to 5 or 6 hours. Do not freeze it as this could
damage the bacteria in the stool. I didn't want to have to put my life or
my donor's life on hold for this, so the fridge was our friend.
11) The recipient of the donor stool should take an anti-diarrhea drug
like Loperamide (Immodium) about an hour before the enema.
Loperamide is an anti-spasmodic which means it will help reduce the
feeling of needing to go the bathroom (urgency) and help you retain
the enema for longer. Anti-gas medicines like simethicone (Gas-x) can
also be helpful to reduce bloating.
While Loperamide is effective, based on my experience I now
think the addition of anti-depressant or anti-anxiety drugs is key
because they can work continuously to calm muscle spasms whereas
Loperamide only works for 4 hours. While I did not start using 5 mg of
Doxepin and 300 mg a day of Bupropion until after the end of doing
these transplants, I did have an immediate sustained remission within
a day after starting these!
12) Prepare an area where you will administer the enemas. This could
be the floor or even your bed covered in such a way as to protect it. At
first I would cover your mattress, a comfortable pad or even the
carpeted floor with a plastic garbage bag and then a towel and / or old
4
16) Put the nozzle into the bulb and this is ready to use.
17) Carry your rectal enema over to an area on the floor covered in a
plastic trash bag. This way you can easily clean up any spillage later.
- Lubricate the tip of the nozzle with a little KY or other personal
lubricant, you may also want to lubricate your anus as well. Grab the
nozzle and get into a proper enema position, lying on your left side
with hips slightly elevated or on your back with your legs up squeeze
the mixture into your rectum until the bulb is empty or almost empty.
Admittedly all of this can seem a little (ahem) weird at first, especially
the positions. However remember why you are doing this, to cure this
illness once and for all so you can go back to living life in good health.
If not this, then you will probably relapse back to pooping your pants
or having an ostomy bag on the outside of your body.
18) Once you are done squeezing out the contents of the enema, put
your rectal enema onto the trash bag right side up if you can (this
means little or none of it spills out) or into a small bucket of soapy
water. Wipe gently with toilet paper or baby wipes. You may also pull
your pants back on because after wiping there should not be any
leakage unless you are ready to have a bowel movement. If makes you
more comfortable then you could always wear an adult diaper, but I
did not do this.
19) Retain the enema for at least an hour or as long as you can. If you
do this at night time before bed, you might even drift off to sleep for
awhile. Have something like a chamber pot nearby or do as I did and
make a quick 10 foot dash to the bathroom to expel the enema.
To retain the enema better and help it travel farther up your
colon shift from lying on your left side onto your back after a few
minutes and then onto your right side with your hips elevated with a
cushion. The reason this is helpful is that this movement will guide the
mixture as it travels through the contours of your large intestine.
7
Ideally the mixture will travel up through the rectum, then left
through the sigmoid colon, up through the descending (left-side)
colon, right through the transverse colon, then down the ascending
(right-side) colon all the way to the cecum and the Illeocecal opening
at the end of the large intestine.
The ability of the bacteria to travel all the way to the Illececal
opening either directly with the mixture or by colonizing their way up
from farther down the colon is key to making this work. While having
the mixture travel there directly might speed up the process, note that
the bacteria can and will also work their way up the colon especially if
diarrhea is limited and competing bacteria is relatively weak or
limited.
Whether or not this works for Crohns Disease in the small
intestine might be determined by the ability of the mixture or the
bacteria that it seeded making its way past the Illeocecal opening from
the large intestine. Other possibilities include using a medical device
traveled either through the digestive tract to the small intestine or up
through the Illeocecal opening. Or it is possible that Crohns Disease
confined exclusively to the colon might be successfully treated using
just the fecal transplants in the colon, or that the inflammation in the
small intestine is a secondary manifestation of the bacterial
imbalance / infection in the large intestine.
20) Clean your equipment by washing out the rectal syringe and
letting it air dry. If the nozzle starts to get a significant of poop drying
on the inside of it, then use a pipe cleaner or the end of a wire coat
hanger to scrape it out.
21) Repeat daily for anywhere from 5 days to a month or so if
necessary. While I did it everyday for 5 weeks based on the advice of
another person. Dr. Barody only did it for 5 days with his patients.
Other options include every day for I believe that if you can
effectively slow diarrhea and limit bowel movement down to 2 - 3
times a day or less then the newly transplanted bacteria will establish
themselves faster.
22) Take over the counter drugs like Loperamide (Immodium) to
treat symptoms like gas and diarrhea. Some amount of gas is normal
from new bacteria establishing and old bacteria dying off.
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Conclusion
So there are the steps for the Fecal Transplants. Feel free to
contact me through my website http://www.FecalTransplant.org for more
information.
As a note even once the enemas have established the new
bacteria in the intestines it still could take some time for sustained
improvement without at least some relapses. In my experience there
were some dramatic breakthroughs where things got better and then
some relapses. However over time the relapses were not as bad and
now 18 months later I actually have better bowel movements, less
diarrhea and urgency than I did before I was diagnosed with Colitis in
the summer of 1999.
Also you dont have to do this perfectly per se for it to work.
The bottom line is you have to get a new bacterial colony to establish
itself which contains healthy bacteria that is more dominant than
inflammation causing bacteria. Once that has occurred it is also a
matter of time for the bacteria to adjust and balance and for your
bodily tissues to heal.
that persists after you finish taking them. In the case of anti-biotics
even if they appear to work in the short term, they often create more
problems by also killing good bacteria. For example Clostridium
Difficile bacteria overgrowth usually occurs after treatment with antibiotics. After subsequent use of anti-biotics the bacteria often adapt to
form treatment resistant strains. It is also known that strains of c. diff
bacteria are also often found in healthy people without illness, which
could suggest that the bacteria itself may not cause illness as long as
other competing bacteria are present.
Adding in good bacteria can be done using pro-biotic
supplements cultured from yogurt. This can be helpful as long as you
keep taking the pro-biotics and this does seem to help some people.
However these bacteria are not native to the human digestive track
and cannot create a self-sustaining colony.
The course of Ulcerative Colitis, Crohns Disease and even
Irritable Bowel Syndrome is complex and medical doctors in the U.S.
have not agreed on any one definitive cause of this illness. There are
hundreds if not thousands of strains of bacteria that have complex
interdependent relationships most of which are not currently
understood and which may vary from one person to another. Until
this can be understood with more precision, a fecal transplant that
seeds the same colony of bacteria that is benefitting or at least not
harming the host can be an effective solution. I cover anti-biotics and
pro-biotics in greater detail in other questions and in the section that
discusses treatment options.
lifestyle.
Prednisone was not effective. My body was not healing because it was
low on resources necessary to make it happen. Digestive illnesses in
particular can be hard to heal because the illness can reduce appetite
or desire to eat. Damaged tissue can mean less nutrients are absorbed
at a time when the body needs higher levels of nutrition.
Unfortunately more inflammation and diarrhea might led desire to eat
and less ability to absorb nutrients which prolongs the amount of time
it will take to heal. Also some parts of the digestive track may take
longer to heal than others depending on where they are. Certain foods
might also aggravate inflamed areas that are trying to heal as well.
5) Average bowel transit time after the fecal transplants.
It stands to reason that it would be hard for new bacteria to
expand their way upstream through the colon when confronted with
a steady stream of watery diarrhea flowing through it. Its kind of like
swimming upstream. However continuing to the transplants would
force more bacteria in to seed its way in there which could be helpful.
Also helpful would be ways to limit the diarrhea through diet
and anti-spasmodic drugs. I believe this was the decisive factor in my
case. I believe the prescription drugs I took helped slow bowel transit
time which helped the new bacteria colonize and also calm muscle
spasms that may have upset areas that were trying to heal from
inflammation.
I believe it is also possible that continuing to do the Fecal
Transplants after the necessary bacteria have established themselves
could be counterproductive in that the excess bacteria causes bloating
and triggers continued unrest in the bowels which would not
otherwise exist. These symptoms of gas, diarrhea and urgency could
easily be mistaken for continued disease leading someone to falsely
conclude they need to do more or conclude that it isn't working.
6) Psychological stress / distress
It is relatively accepted that a person's state of mind can have
an impact on the course of any illness. Digestive diseases certainly
seem to fall into this category as stressful events or depression can
often trigger flares. But why and how do they impact the illness?
- Psychological stress can cause indigestion, or incomplete
digestion can cause problems because undigested food can start to
decompose in the digestive track. Stress can also weaken the immune
6
active flare, though the starter diet using broth and home made soup
is a good start since it will help provide rest to the bowels. It could
take days or even a week or two to work from the middle of a major
flare. Otherwise in my experience the high fiber foods in the diet made
active diarrhea that I had worse.
In the short-term if your flare is that bad I would go with
Prednisone and / or anti-biotics. Once a flare is past a certain point,
its hard for many treatments that could be beneficial to have much of
an impact. As you may have read on my blog I also had good luck with
certain anti-depressants to calm muscle spasms and slow diarrhea on
a more permanent basis than Immodium.
You might also try an all-liquid diet for 2 - 3 days. There is one
product I've used before called Absorb Plus meal replacement shake. I
later had as good or better results with Muscle Milk either pre-mixed
or powdered, mixed with rice milk and olive or flax seed oil. You also
should get good amount of iron and b vitamins to prevent anemia /
lower RBC.
Q: Thanks for the update. I just had a colonoscopy and Dr says I
am in really bad shape. He wants to put me on Remicade asap. Not sure
what to do.
A: Here is what I suggest:
1. In the short-term do whatever it takes to get the inflammation
down even if it includes drugs like Remicade and/or Prednisone. In
this case I'd go with your doctor on this one for now while you are in
the peak of a flare. Unless you are dealing with c. diff Colitis in which
case anti-biotics and / or Fecal Transplant should be the first-line
treatment. If you want to do Fecal Transplant for Ulcerative Colitis
you still are going to need to do additional things to knock down the
worst of the flare and keep the inflammation under control while you
start this.
In addition to immune-suppressing drugs that here are a few things
you can do on your own which can also help any other treatments you
are working with.
2. Get adequate protein from pre-digested protein shakes like body
builders drink. I used Muscle Milk for a variety of reasons including,
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the term "cure." But then I learned that the surgery can have
complications from obstructions, a restricted diet, either changing the
bag 5 to 6 times a day or going 5 to 6 times a day if you have the j
pouch which is made from part of the small intestine. You would also
have to take B vitamin injections for the rest of your life since the
Ileocecal valve is removed and reformed into the j pouch and be extra
vigilant so that you do not become dehydrated since you do not have a
large intestine to help absorb water.
Emotional Stress
Emotional stress is another commonly attributed cause to a
Colitis flare. There are several possible ways that it could trigger a
flare. It could cause the body to release chemical signals that trigger
an immune system response. This is one theory for how stress
contributes to many different illnesses considered to be auto-immune
disorders.
Emotional stress can also cause lower endorphin levels which
weaken the immune system and can trigger improper digestion and
lead to either constipation, or more commonly diarrhea for those with
Colitis. Stress / depression can also cause improper digestion or
diarrhea which disrupts the balance of gut flora in the intestines.
Nutrient deficiencies
Various nutrients are necessary for the body to regulate the
immune system, this could include iron and b vitamins. An absence of
these throws off the system. Lack of nutrients can also contribute to
emotional stress as well. This could also include a lack of protein
necessary to rebuild after inflammation.
My experience:
I was prescribed Asacol 4 400 mg tablets 3 times a day during
my initial Colitis flare along with 40 mg of Prednisone. After Asacol
and 60 mg of Prednisone was not enough to drive the flare into
remission, the addition of Cipro helped me attain remission. Asacol
was going to be the primary drug for me to maintain remission. I felt
it didnt do much during a flare and I saw the tablets in my stool as if
they had gone right through me.
I was supposed to take it 3 times a day, however I often did not
do that because I would forget the mid-day dose. Therefore I started
to take 6 tablets twice a day and thought it would work just as well.
However almost 10 years later I learned that Asacol really is supposed
to be taken 3 times a day because the drug only actively releases from
the tablet for 8 hours at a time. This could have been part of the
reason it was not as effective as it could have been.
- I also took Sulfasalazine because it was cheaper than the $600
a months supply of Asacol would have cost me out of pocket. This
was the original drug before mesalamine, however drug makers
determined that Mesalamine was the active metabolite that was
helpful to reduce inflammation. Originally Sulfasalazine may have
helped because it has anti-biotic qualities too. However I think you
had to take this one 4 times a day. My doctors were also concerned
that it would be bad for my kidneys and I noticed it stained my urine
yellow.
Years later in 2009 I started to take Apriso, a 24 hour timerelease capsule and it was much more effective. The once a day
dosing was easier for me to remember, so compliance could have been
the primary reason.
I also later took mesalamine enemas and suppositories. I never
did the enemas very many times however the Canasa suppositories
did appear to help when I was not in the peak of a flare. I was told
that enemas and suppositories could help because the mesalamine
gets diluted by the digestive track. Since it appeared to help maintain
remission when I was not in the midde of a flare but was did not
appear to be as effective as treating a flare I think it could be because
it is more effective when bowel transit time is slower.
My Conclusion:
- Apriso seemed to be more effective for me than Asacol,
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although this could have been due to better compliance since I only
had to remember one dose per day. During the peak of a flare these
dont appear to help much, however I think Mesalamine can if you can
slow bowel transit and the worst of the inflammation using
Prednisone.
The suppositories were also very helpful and of minimal
distraction compared to the enemas, since they could be taken during
the day if necessary. Suppositories release the drug for 8 hours, so I
got the most noticeable results during a stretch of time when I was
using them 2 and occasionally 3 times a day when I added the
suppositories to the Apriso capsules made them more effective and
helped beat a flare when I was preparing for surgery in January and
February 2010.
I think taking Immodium an hour before the suppositories was
very helpful too, because bowel movements within a hour or two
afterward sent the contents right into the toilet. The enemas were
supposed to be taken at night however once again Immodium would
have been a good idea too to retain the enemas longer.
bit light-headed or loopy like I had low blood sugar. Prednisone can
also lower seizure threshold and I believe that a combination of 40 mg
Prednisone, 400 mg Bupropion SR (12 hour) and Adderall 10 mg on
an empty stomach when I woke up caused me to have a grand mal
seizure in January 2011 which resulted in being taken to the hospital
in an ambulance. In truth this was actually a very dangerous, however
I had taken all of the various drugs in the past including sometimes in
combination. However all of the above drugs can lower seizure
threshold as can low blood sugar, so you do have to be careful.
Why does Prednisone work?
Prednisone, works primarily by suppressing the immune
system response which can cause ulceration. However why does it
help if the root cause is actually a bacterial infection in a significant
number of Ulcerative Colitis and Crohns Disease patients? Part of the
answer to this might be because during a flare the ulcerated lining of
the intestines and the watery diarrhea that speeds through the
intestines makes it difficult if not impossible for the immune system
to get the inflammation causing bacteria under control. By helping
slow bowel transit time Prednisone helps the good bacteria regain the
upper hand.
Also a result of the intestines beginning to heal and slower
bowel transit time, absorption of nutrients would also increase. Better
nutrition would also help the body, and the increased appetite would
also help since people may also not feel like eating during a flare.
While I have not seen this listed as an effect of Prednisone I
wonder if it might help calm the gut through its anti-depressant
effects. If anti-depressants can help calm the gut and Prednisone
appears to elevate a persons mood, maybe this is another mechanism
by which Prednisone is helpful.
Bupropion (Wellbutrin)
Rather than list this drug along with other anti-depressant
drugs I want to give this drug its own section because of research that
suggests that it might act to inhibit TNF-a, the same inflammationtriggering chemical in the body that biological drugs like Remicade act
on. In my experience the addition of this drug to Prednisone, Apriso
and Silenor caused an almost spontaneous remission by the end of the
2nd day I took it.
I found out about Bupropion from a few discussion threads on
HealingWell.com where a few patients reported that it had
successfully treated their cases of Crohns Diease. I also found a study
called A Trial of Wellbutrin for Crohns Disease, where results had not
been published either positively or negatively even though the drug
showed enough promise in 1st and 2nd tier trials to merit a 3rd tier trial,
however no study results were published on ClinicalTrials.gov. This
seems kind of weird to me and actually makes me think conspiracy
theories of drug companies deliberately hiding results might have
merit.
In any event after I started taking a 100 mg tablet of Bupropion
in the immediate release form 3 times a day I had an immediate
improvement in symptoms by the evening of the 2nd day I took it,
about 30 hours later, including a normal bowel movement. This was
strange to me after almost chronic diarrhea for so many years. This
matched up with experiences I saw from other case studies posted on
0
HealingWell.com.
My advice is to definitely give Bupropion a shot, where you are
doing the Fecal Transplants or not I think this can help a great deal
even during a flare. While it is a TNF-a inhibitor I did not have
negative side effects such as secondary infections like I did when I
took Remicade. While there is a slight risk of the drug causing a
seizure in higher doses, this risk is not any higher than most other
anti-depressant drugs at doses up to 300 mg per day.
Types of Bacteria
- A mystery of sorts, but unidentified at this point, possibly
different kinds or combinations of different kinds of bacteria are the
cause.
- MAP Bacteria could be the cause since it causes a similar
disease in cattle called Johannes Disease.
- MAP and other kinds of bacteria that reproduce from spores
are especially difficult to get rid of. These bacteria cannot be killed in
their spore phase
- Some people might be more susceptible than others because
of a weakened immune system, or have more frequent diarrhea.
- For example Pseudo Membranous Colitis results from c. diff
infection usually when people have a weakened immune system and
when good bacteria have been killed off by anti-biotics.
Examples of anti-biotics used for Colitis or Crohns Disease
Among the anti-biotic drugs sometimes used to treat Crohns
or Colitis are Cipro, Vancomycin and Flagyl. A leading theory is that
MAP bacteria which causes a similar disease in cattle called Johannes
Disease is also a cause of Crohns Disease and Ulcerative Colitis.
Bacteria being a cause of this illness makes sense considering that
stomach ulcers are caused by bacteria as well as travelers diarrhea.
Cipro (Ciprofloxacin)
- Broad spectrum anti-biotic, in the fluoroquinolone family of
anti-biotics, kills off everything good and bad. So it is often used when
other anti-biotics fail or when the problem bacteria is unknown.
- Used to treat Travelers Diarrhea among other infections.
- Sometimes prescribed to Ulcerative Colitis patients when
Prednisone and other drugs have failed to bring the illness into
remission.
3
Pro-biotics
Pro-biotics are bacteria that are believed to be beneficial bacteria that
help body processes like digestion and may either kill, inhibit the
growth of or displace harmful bacteria. Ideally some strains can
colonize in the colon.
A healthy colony of beneficial bacteria leaves no room from
pathogenic bacteria to take over because they are more dominant
strains.
health food stores in large cities. This is not necessarily a bad thing,
but if you are a busy person on the go and are not used to cooking all
of your meals this can be difficult.
- The whole problem is pre-supposed to be controllable from
the diet. However what about the bacterial cycle? What about the role
of psychological stress?
- Intolerances or other co-existing food allergies can further
limit your selection of available foods. For example dairy allergies.
Also raw fruits and vegetables that are high residue can make
symptoms worse including diarrhea, urgency and cramping.
Gluten-free Diet
How / why it works
- Gluten intolerance or Celiac disease means that you cannot
digest foods containing gluten, this undigested food feeds the growth
of inflammation-causing bacteria. For more on this see see The
Vicious Cycle.
- Gluten may not be good for many people besides the ones
with obvious negative impacts due to the structure of the molecules.
- Eliminate gluten and many secondary illnesses considered to
be auto-immune disorders can stop. Part of the underlying theory is
that gluten and other particles are crossing the intestinal walls into
the blood stream when they should not be. Another possible
condition that is often described but not medically established as
leaky gut syndrome.
Disadvantages
- Gluten-free food was expensive and hard to get, but that is
rapidly changing.
- Hard to follow 100%. Even small amounts of gluten can be a
problem that takes days to fix. Foods could be contaminated
without your knowledge even if the food itself is a gluten-free food.
However its also possible that not everyone is hyper-sensitive so
compliance might not always be too much of a problem.
- Many of the problems that are believed to be caused by gluten
might not be a problem for a person with healthy intestinal lining. So
gluten-free might not definitely cure the source of inflammatory
bowel disease, it might just limit irritation while periodic flares still
occur.
Digestive enzymes
- digestive enzymes can be helpful because they help the body
digest food which could otherwise feed inflammation producing
bacteria.
- Proper digestion can also help because undigested or
incompletely digested food can trigger inflammatory responses when
it goes through the lining of the intestine.
- Supplements in pill or capsule form could be useful, or you
could also get them by eating a balanced diet of unprocessed foods.
00
Nutritional Supplements
Adequate protein is essential to recovery from ulceration of
the intestines. Just like your body needs protein to recover from a
workout or from surgery, you need it to heal wounds. I learned this
when my colo-rectal surgeon told me the level of albumin (available
protein) in my blood were low and told me I should start taking a
meal-replacement shake to boost it. I learned that many protein
shakes including muscle milk are also high in the amino acid LGlutamine. I cant say whether it was just the L-Glutamine or all of the
protein that I got, however I was able to taper off Prednisone in 6
weeks while also going into remission.
Other nutrients that are important include iron and b vitamins
to prevent anemia. In my experience when I started to take iron or b
vitamin supplements my energy levels would increase, I could heal
faster from small cuts or scrapes, chronic sinus infection and cold
sores would heal faster. B vitamin supplements can found using
capsules, tabelts, liquid shots and injections. Injection kits are
relatively inexpensive when ordered online, approximately $35 for
the least expensive b vitamin supplements. For iron I would
recommend Angstrom iron, liquid supplement or Comfort Iron also
known as iron glycinate.
Herbal Supplements
Many herbs / plants may have beneficial properties similar to
prescription drugs. However I would recommend care with which
02
ones you use as some may aggravate your condition if you are having
a flare. In my experience I was taking St. Johns Wort immediately
before and during the early stages of my initial flare. This appeared to
significantly aggravate diarrhea. Whether it caused any other
irritation is hard to say.
In my experience Valerian root extract has been very helpful
for reducing the number of bowel movements and helping to create
more bulky well-formed stool.
Several other herbs may have anti-microbial properties. This
can include oregano oil. I have had great success using a product
called sinu-orega to treat sinus infections. It is a mixture of saline and
bay leaves and oregano that has anti-microbial properties. I have also
had good results from a product called Stye Eye Relief made by
Similasan USA which lists sulfur as an active ingredient. The use of
sulfur makes sense considering that a whole class of anti-biotic drugs
is based on sulfur.
There are also many other herbs that may be beneficial for
reducing inflammation, killing bacteria, virus or other parasites and
for calming the digestive track. However the one that has made the
most noticeable positive difference for me has been Valerian.
04
Surgery
As I have already expressed in this book I believe that surgery
should be a last resort option after every other possible option has
been fully explored. This is because the physical affects of surgery are
permanent and irreversible. While you can try most other treatments
and if necessary try something else later this is not the case with
surgery. That said it does seem to be helpful for some people. If a
person has colon cancer or perforation of the bowels happens this
could be a life saving procedure.
Surgery for Ulcerative Colitis can one of 4 different procedures
including The surgical choices are:
1. Proctocolectomy and Brooke ileostomy.
2. Abdominal colectomy and ilcorectal anastomosis.
3. Proctocolectomy and Kock pouch.
4. Restorative proctocolectomy with ileal pouch-anal
anastomosis (IPAA).
IPAA is currently the most commonly used surgery for those
healthy enough and was the procedure I was going to have. It involves
removal of the large intestine (colectomy) with or without the
construction of an ileo-anal pouch or reservoir with a two or tree step
procedure. The surgical option I was given was going to be a two-step
procedure, first removal of the colon and rectum except for a small
stump of the rectum. Then construction of the pouch from part of the
small intestine with a temporary diverting ostomy. The new end of
the small intestine would divert through the side of my abdomen to
the ostomy bag for about 6 months. After six months or so I would
then have a 2nd surgery to connect the stoma to the pouch and the
rectal stump and anus.
Benefits
Doctors call it a cure for Ulcerative Colitis. Once the colon is
gone there can no longer be inflammation in it. After that an ostomy
bag on the outside of the body or a J-Pouch created from part of the
small intestines can be used to collect stool. The risk of colon cancer
is eliminated because there is no colon to get cancer. Drug side effects
are eliminated because the colon is no longer there to get inflamed.
05
Disadvantages
The disadvantages are very significant, especially considering
that with fecal transplants a permanent cure that leaves your body
intact is available. However in my experience brochures from doctors
and surgeons understated these disadvantages. Of course this makes
sense if this is what they believe you should do.
- Permanent and irreversible. Since it is permanent you cannot
attempt other treatments or take advantage of future medical
developments.
- Pouchitis a bacterial infection and inflammation of the JPouch. This often has to be treated with anti-biotics.
- Blockage or obstruction of the stoma, diet needs to be
monitored for this reason.
- The body loses some ability to absorb water, the primary
function of the large intestine, so you have pay extra attention to
staying hydrated, especially if exercising outdoors in the heat.
- You may need to take injections for B vitamins because part
of your small intestine has now been turned into a J-pouch.
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Low-residue diet
In addition to that a low-residue diet, often known as the bland
or BRAT diet includes foods that add bulk to your stool can also be
helpful for making stool less watery and reducing the frequency of
bowel movements. This includes white bread and banana bread
without nuts. In addition to having to go to the bathroom less often
this may also increase the effectiveness of anti-biotics, fecal transplant
and also drugs like mesalamine.
Based on experience I would NOT recommend starting a diet
high in insoluble fiber from raw fruits, vegetables and nuts while
suffering from active diarrhea. For me it made diarrhea and urgency
much worse. While it could be quite possible that allergies or
intolerances to certain foods can cause problems, too much rough
fiber will cause very noticeable problems from increased urgency and
more frequent bowel movements. This is also true of vitamin C and
other highly acidic foods.
From the specific carbohydrate diet I think the home made
chicken soup and home made yogurt which has been fermented for 24
hours is very helpful. However in my experience after completing the
fecal transplants and having my gut heal, even problem foods will not
trigger a flare. In fact the addition of supplements like Valerian root
extract that have calming / anti-anxiety properties seem to reduce
indigestion and occasional diarrhea as well.
Anti-inflammatory drugs / Mesalamine
- Take mesalamine in tablet or capsule form and by
suppository and enema unless you are absolutely sure that you are
allergic to it. I recommend Apriso capsules once a day over Asacol
tablets 3 times a day or sulfasalazine. I found it very difficult to
remember to take Asacol 3 times a day at regular intervals and after
years of treatment I learned that taking it at regular intervals is an
important part of making it work.
The mesalamine suppositories and enemas also help although
they only release mesalamine for 8 hours, so take them 2 or 3 times a
day for maximum effectiveness, at least until you get the flare under
control.
Anti-depressant / anti-diarrhea drugs
- Consider anti-diarrhea also known as anti-spasmodic drugs
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13. Had sexual contact with a prostitute or anyone else who takes
money or drugs as payment for sex?
Yes/No
14. Had sexual contact with anyone who has ever used needles to take
drugs or steroids, or anything NOT prescribed by their doctor?
Yes/No
15. Had sexual contact with anyone who has hemophilia or has used
clotting factor concentrates?
Yes/ No
16. Female donors: Had sexual contact with a male who has ever had
anal sex with another male (male donors circle I am male)?
Yes/No/I am male
17. Had sexual contact with a person who has hepatitis?Yes/No
18. Lived with a person who has hepatitis? Yes/No
19. Had a tattoo?
Yes/No
20. Had an ear or body piercing? Yes/No
21. Been treated for syphilis or gonorrhea? Yes/No
22. Been in lockup, jail or prison for >72 hours? Yes/No
In the past three years have you
23. Been outside the United States or Canada? Yes/No
List location/time spent:_______________________
From 1980 through 1996,
24. Did you spend time that adds up to three (3) months or more in
the United Kingdom? (is there a chance you were exposed to beef
from cattle with mad cow disease)
25. Were you a member of the U.S. military, a civilian military
employee or a dependent member of the U.S. military? Yes/No
From 1980 to the present, did you
26. Spend time that adds up to five (5) or more years in Europe?
Yes/No
27. Receive a blood transfusion in the United Kingdom or France?
Yes/No
From 1977 to the present, have you
28. Received money, drugs, or other payment for sex? Yes
29. Male donors: had anal sex with another male,
even once (female donors circle I am female)?
Yes
I am female
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No
No
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References
Here are just a few of the references I used
Treatment of Ulcerative Colitis using Fecal Bacteriotherapy,
Thomas J. Borody, Eloise F. Warren, BScM,
Sharyn Leis, RN, Rosa Surace, and Ori Ashman, MA
Dr. Thomas Barody, et al. J Clin Gastroenterol. 2003; 37(1):4247.
PMID: 12811208
Available through Dr. Borodys Website:
http://www.cdd.com.au/pdf/publications/paper17.pdf
This article which detailed 6 cases where Ulcerative Colitis effectively
drove Ulcerative Colitis into remission was what prompted me to
cancel surgery and explore fecal transplant as an option.
Success of Self-Administered Home Fecal Transplantation for Chronic
Clostridium difficile Infection,
Michael S. Silverman, Ian Davis, Dylan R. Pillai
CLINICAL GASTROENTEROLOGY AND HEPATOLOGY 2010; 8:471
473 PMID: 20117243
- The article helped form the basis for my treatment protocol and
confidence that self-administered Fecal Transplants at home were a
viable option for me.
Bacteria as the cause of ulcerative colitis
MASSIMO CAMPIERI, PAOLO GIONCHETTI Gut 2001;48:132135
PMID: 11115835
- Self explanatory with some additional evidence and reasoning for
why this is an effective treatment option.
A Trial of Wellbutrin for Crohn's Disease
ClinicalTrials.gov Identifier: NCT00126373 Sponsor:
Altschuler, Eric, M.D. Collaborator: GlaxoSmithKline
Information provided by (Responsible Party):
Altschuler, Eric, M.D.
The existence of this study even though no results had been published
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More Resources
More and resources are coming online each day, however
here are a few.
My website http://www.FecalTransplant.org post
questions or comments or even ask about personal coaching.
PowerOfPoop.blogspot.com
One of the biggest websites out there and a great source of
information and links. Also ask about the Facebook group.
Guide books by Sky Curtis. My mentor in this process, and
an invaluable source of information and encouragement
http://fecalinfusions.com/
http://www.IhaveUC.com Another website with tons of
resources and discussion threads.
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