Many times in my journey to heal myself from the ravages of Crohn’s disease I have felt like giving up. Although I have gotten profound pain relief and some real healing benefits from my handcrafted cannabis treatment protocol for Crohn’s, even on my best days I am still significantly ill; sometimes I begin to panic knowing how close I am to being homeless and I become absolutely desperate for help. Several times I have laid in bed and considered going to the hospital and more than once I have made doctors’ appointments thinking that I had finally come to the end of my abilities to heal myself and that therefore, I needed to reach out for help. But what’s the point of that when, as a chronically ill person with an incurable and indeed untreatable disease I already know there is nothing they can do?
Insufferable tomes explaining legal concepts are beyond the scope of this blog and frankly beyond the scope of my interest as a seriously chronically ill attorney and cannabis refugee so I will just sum up. As was and is my right as a competent adult in this country, I decided 3 years ago to abandon the capitalistic patriarchal Western medical machine that was not helping me with my severe Crohn’s disease. The painful invasive tests, failure to adequately treat either my symptoms or my pain and the aggregating side-effects of my medications were only causing additional medical trauma and making me feel worse.
My experience treating myself with medical cannabis is that it was a feat of trial and error which was both expensive and time-consuming, but that’s probably the way it should be. People are not carbon copies of each other and there is no reason to believe that Big Pharma poisons will affect different people the same way although that is the lie we have been told. Similarly, people will respond differently to different cannabis strains, products and dosages and the only way to find something that you know will work for you is to try it. I was advised in the beginning to document my treatment progression to help me figure this out in an organized way but I was too sick and didn’t have the mental, physical or emotional reserves to document anything. The “budtenders” at the cannabis shops played a very minor supportive role by describing the most common uses and effects in alleviating different symptoms but probably their best advice was that “the nose knows.” With regard to whole flower cannabis (bud) you are supposed to inhale the scent of the different strains and the ones that smell the best to you are the ones you should try and obviously the ones that smell offensive to you are best avoided. Contrast that sage and benign advice with that of Big Pharma particularly in the case of Crohn’s and other autoimmune and chronic illnesses where we are advised and expected to take Big Pharma poisons that we know make us feel worse.
Like many chronically ill people suffering with autoimmune disease, my Crohn’s disease has not responded to conventional treatments which have only provided very temporary and very inadequate relief (if any at all) and which cause crippling side effects of their own which often require even more treatment which causes even more side effects and so on. This grueling and gruesome cascade of interventions for Crohn’s patients relying on Western medicine for relief or for a cure, when Crohn’s is known to be incurable, progressive and unresponsive to conventional therapies is likely to go on and on for infinity or until you die, or until you give up and try something completely different. The first alternative therapy I tried for Crohn’s was the so-called elemental diet which in the United States is marketed as Vivonex, an enteral feed meant to be given through a feeding tube directly into the stomach. It was never meant to be drunk straight but you can take it that way if you are able to and if you can keep it down and getting or keeping it down is not an easy task. Vivonex is a powder that you mix with water to create a sickly looking yellow fluid that tastes like a restaurant walk-in cooler smells — damp, food-like and disgusting.
Whether taken through a feeding tube or drunk straight, the elemental diet offers bowel rest in which you are getting nutrients with no bulk and therefore without anything to “digest” leaving ulcerated, inflamed and otherwise injured and impotent bowel tissue to rest and hopefully to heal. The nutrients are not digested in the intestines and instead are processed directly through the liver. In my own case, the elemental diet didn’t work at all. As soon as the fluid hit my gut it responded as it did to all food which was to essentially reject it as a malignant intruder and cause an immediate fever to try to kill it among other things. I felt nauseated, feverish, spasmodic, bloated and every other sickening facet of Crohn’s no matter what I ate, even if it didn’t need chewing — in my case at least it seemed as if the “bulk” meaning fiber and whatnot of normal food wasn’t my problem. In Japan, they have a similar enteral treatment marketed under a different brand but is the same thing and the same idea. The medical literature seems to suggest that this treatment is somewhat successful to induce “remission” in Crohn’s patients in Japan but is it really? And what does that even mean? Reading between the lines of this journal article, along with personal experience and a bit of inside information have led me to believe that not only is the elemental diet not effective here or in Japan or anywhere, but also that the medical literature is intentionally obfuscating and ultimately misleading on the efficacy of enteral feeds for Crohn’s treatment, the health and wellbeing of Crohn’s patients generally including what clinical “remission” means and what it doesn’t, and where Crohn’s sufferers often end up with their treatments and with their lives.
Somehow in my journey of researching and living with Crohn’s disease and chronic illness generally, I came across the case of disaffected medical doctors killing themselves. Apparently it’s not just chronically ill, chronically let-down and chronically pissed off patients who are becoming disaffected with Western medicine and everything it entails. According to at least one doctor who has taken to researching the issue, doctors and medical students are subjected to what she concludes are “human rights violations” when they are financially coerced by their medical schools, employers and licensing boards to get with the Western medical program and all it entails or lose their livelihoods, lifestyles and all the goodies they were expecting when they decided to get into medicine in the first place.
As a fellow licensed professional also subjected to the standards of my profession I can relate to the financial coercion part, as can anyone who has ever had a job anywhere. The difference with medical doctors of course is that any alleged or actual coercion they experience to get educated and gainfully employed as medical doctors “coerces” them to directly harm other living beings such as the patients they “practice” medicine on and live animals on which they practice vivisection and medical experiments while in medical school. Leaving aside for a moment the question of whether someone is ever morally blameless when they decide to knowingly physically harm a person or animal for their own material gain (or to avoid serious losses including financial ruin and everything that entails in the context of capitalism and patriarchy) I find this research and what it reveals relevant to my own experience as a disaffected chronically ill person who has abandoned the harmful medical standard of care that was only hurting me and making me worse.