Severe Ulcerative Colitis,
the condition I have just been diagnosed as having, has no known cause
and no known cure. Apparently, stress causes it to flare up, and once
that's happened, you're stuck with it for the rest of your life. All
the doctors know is that for some unknown reason the body's immune
system suddenly goes hyperactive. They think this happens after it's
successfully combated some harmful bacterial infection in the
intestine, and the white cells begin relentlessly attacking the good
bacteria in the intestine as well, damaging and inflaming (and
sometimes rupturing) the intestinal wall in the process.
The
medical profession's utter cluelessness about this disease does not
surprise me, because they are equally clueless about most of the
diseases that, today, seriously incapacitate and kill most people. The
job of the doctor today is to push the medicines hawked by Big Pharma,
and if those pills don't work, to perform surgery, taking out the
disease and frequently the essential organs it is preying on at the
same time, or to prescribe massive doses of toxic chemicals or
radiation that indifferently kill everything they get near, good and
bad. I don't blame doctors for acting this way. This is the best they
can do with the medieval tools and knowledge at their disposal. They do
what they must.
For most diagnoses and treatments, this is the
best that medicine can offer, that science can offer, that simplistic
solutions in business, politics and every other complex domain can ever
really hope to accomplish in the face of complex problems. Like the
Israelis in Lebanon and the Americans in Iraq and soon Iran, the
strategy is do something spectacular, so the (im)patient/customer/voter
thinks that something dramatic and active is being done. No matter that
it is nearly as likely to make the situation worse as better. Just try something, anything.
It
is causing considerable consternation already among the specialists in
my case that I'm not prepared to authorize Shock and Awe missions in my
body. I indicated that I am prepared to treat the condition with non-steroidal
anti-inflammatory drugs, and pro/microbiotics, in combination with
other natural treatments. That's all. NSAIDs don't cure the condition,
of course, they just relieve the swelling and discomfort.
Pro/microbiotics attempt to restore the inappropriately-destroyed
bacteria in the intestine, but it's problematic -- the digestive system
is so hostile to most bacteria at different points that getting the
'good' bacteria to the right place is a little like trying to replace a
dictator with an altruist in a country at war, without the combatants
noticing. The purpose of both is to make the patient feel better,
relieve some of the stress of pain and discomfort, and give the body
time to try to figure out how to heal itself.
Doctors
generally know this is a hit-and-miss proposition, so they'd rather go
in, guns a'blazing, and kill, overwhelm, or remove something instead.
This approach, thanks to learnings from previous victims (er.. I mean
patients), actually statistically improves your chances of living
longer and better, at the risk of masses of unpredictable side effects
that, for some, are worse than the disease. But the point remains:
there is no cure, and there is no known cause. Without either, it's a
mission of desperation. I'd rather give peace a chance, even if that
chance is not great.
The specialists are trained to try to psych you out when you point out these facts and risks to them. Here's a fascinating article
that shows how most doctors are humiliated and infuriated when they are
unable to convince patients to be 'rational' about the pros and cons of
organ removal, steroid treatments that shut down your body's natural
functions, and bombardment with massive doses of toxins. At least the
article concludes that ultimately the patient's decision must be
respected, and that (I love this quote): "In deciding that CW's choice
should be respected, her psychiatrist reasoned that the patient's
decision is consistent with her long-term values in which
self-determination is central and that it is reasonably in accord with
her well-being, although her decision might not maximize her length of
life. Depression is influencing her decision without making her
incompetent to decide".
There is some sanity in the world after all.
I'm sitting here staring at my prescribed bottle of prednisone, a powerful steroid anti-inflammatory, whose function is essentially to cripple the body's immune system.
Something stronger and more dangerous than NSAIDs is needed for my
'severe' case, the experts insist. This is all they have. The 64 side
effects are dreadful and sometimes disastrous. I am strongly leaning
towards getting a second opinion, from a doctor whose attitude is a bit
less partial to 'fighting fire with fire', even though the symptoms are
now into their fourth week and have left me unable to concentrate and
exhausted.
I don't want to be an alarmist with this report. My
condition is serious and chronic, but not immediately life-threatening.
I just think I owe it to you, my dear readers, to be honest about my
situation and the fact that my reaction is not stereotypical. It is
also not up for discussion or negotiation, so please save your advice,
at least on this matter.
Just like Seth Roberts' attempts to find the cause and cure of his personal diseases, through slow painstaking, rigorous self-experimentation,
I will be using this 5-step plan (decide on objective, select base-line
data, research and imagine hypotheses, test those hypotheses through
immediate feedback, improvisationally, and keep practicing what seems
to work). Doesn't this make a lot more sense to you than the learned
helplessness of one-size fits-all conventional-wisdom 'best practices'
and 'solutions', many with no hypothesis to support them at all (just
the result of terribly limited trial and error)?
We will try some things, and see what happens.
No pictures to illustrate this article. You don't want to see pictures of this. Really. Thanks to the dozens of readers who have sent me self-experimentation ideas, cases, websites and other alternatives for GI diseases. What I'd moist value right now is some hypotheses (no proof needed, just possibilities) about why white cells might suddenly turn on and kill healthy, essential bacteria.
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