|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 (justthe 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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