The Absurdity of the Euthanasia Discussion in the Absence of Effective Medicine and Social Support for the Seriously Chronically Ill.

I cannot tell you how absurd it is to be seeking euthanasia as the final end to this awful Crohn’s journey when I’m not suicidal and I don’t want to die.  What I do want, all of which is illustrated brilliantly in this clip, is 1. effective medical treatment for my disease, or failing that, consistent access to effective pain and symptom relief, in my case medical marijuana which has been used successfully for thousands of years to ease specifically gut ailments and which use is supported in contemporary peer-reviewed medical literature particularly for Crohn’s; 2. social support with fulfilling basic tasks and the activities of daily living like shopping, cleaning, cooking and the like; and 3. to be relieved of external constraints that make existing as a chronically ill person a living fucking hell and a consistent nightmare, which constraints have nothing to do with being ill and everything to do with being an oppressed person and failed consumer/producer under capitalism and patriarchy.  Constraints like poverty.  Fear of (and actual) male violence.  Disability-based (and all) discrimination.  Things like that.

But I can’t have any of those things — effective medical treatment, social support, and freedom from oppression — because under the current system those things don’t actually exist so the easiest thing for everyone would be for me to simply disappear or to have never been born in the first place.  Failing that we have euthanasia otherwise known as assisted dying or medically assisted suicide.  Of course, poor and other unsupported “euthanasia candidates” — who likely don’t have $12,000 and the good health and social support needed to have their efforts rubber stamped/make it official — just know and experience this process as good old-fashioned suicide.  Who knows what Chris Rock really thinks about euthanasia for seriously ill and dying people but he’s not wrong to see the absurdity in it, at least under the current system.

Continue reading “The Absurdity of the Euthanasia Discussion in the Absence of Effective Medicine and Social Support for the Seriously Chronically Ill.”

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Crohn’s Disease is a Terminal Illness. Coming to Terms.

After researching this disease for going on 6 years now, I believe I have come to a rational conclusion about Crohn’s disease which is that it is not a so-called incurable progressive disease but a fatal one: based on all the evidence including anecdotal evidence from patients themselves I now believe that Crohn’s disease is a terminal illness.  I have more or less concluded that before but for some reason I hadn’t yet come to terms with it.  It’s not easy to come to terms with something like that but not because I suffer from what is almost certainly going to cause my untimely death but because everyone, and I mean absolutely everyone is lying their asses off about Crohn’s disease including how “treatable” it is, what kind of quality of life Crohn’s patients can reasonably expect, how predictably disabling it is and why, and how it’s probably going to end.

But before we get to the end it’s important to start at the beginning and admit what Crohn’s disease is at base: Crohn’s patients, including myself, have to medicate in order to eat.  And that is serious, very serious indeed.  If there is anything that is any less compatible with life than a disease that prevents the sick person from eating I can’t think of it.  A disease that prevented the sick person from breathing wouldn’t be any less compatible with life than Crohn’s is, it would just be quicker.

Continue reading “Crohn’s Disease is a Terminal Illness. Coming to Terms.”

Is Crohn’s Fatal? The Elemental Diet & Enteral Feeds for Crohn’s Treatment in Japan, Medical Newspeak and Reading Between the Lines

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.

Continue reading “Is Crohn’s Fatal? The Elemental Diet & Enteral Feeds for Crohn’s Treatment in Japan, Medical Newspeak and Reading Between the Lines”