Cannabis Refugee, Esq. One Year Later. (Meta Discussion)

As my readers may’ve seen or sensed from the recent comments and content on this blog, I have become disillusioned with the CRE writing project and may decide not to continue writing about my experience as a Crohn’s patient trying to survive outside the Western medical system that was not helping me and was only making me worse.  As far as I can tell, this project has not inspired any additional writing or critical thinking on this subject, my posts have not been widely shared or inspired much interesting feedback, and this work has not opened up any additional opportunities for me in the way of writing or activism.  Of course, those were not the reasons I started this blog in the first place but they are to be considered when looking into the future of this project and whether it is in my or anyone’s best interest that it continue.

My original intent in starting this project nearly one year ago was to document my experiences as a seriously ill woman for whom conventional medical treatments were not working including the social, financial and health-related fallout of this system that seems designed to control and punish sick people while we carry the blame and shame for Western medicine’s failures and even its lies.  At times my health and financial situation have been so precarious that I actually believed (and still do believe) that I am going to die here, alone and in the middle nowhere, and I wanted the truth about what happened to me to be known or at least knowable by those who would wonder what the hell could’ve possibly happened that led to that sad and lonely end.

Continue reading “Cannabis Refugee, Esq. One Year Later. (Meta Discussion)”

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Crohn’s Disease and Euthanasia. Medically Assisted Suicide for Intractable Pain and Symptoms in “Nonterminal” Illness

This man, Jason (Jay) Franklin, has Hirschprung disease, a congenital birth defect in which the colon and possibly also the small intestine are not properly enervated causing bowel obstruction and inability to pass stool.  He had his first abdominal surgery at 14 days old which left him with a life-long colostomy bag and has had, in his estimation, 15-20 or more additional abdominal surgeries in his life to treat obstructions and iatrogenic illnesses from the treatments and surgeries themselves as abdominal surgery and manhandling the intestine actually cause bowel adhesions that require more surgery and so on.  At the time this footage was taken, he was on opiate pain relievers and Valium to dull the severe pain and physical and emotional distress of his disease which medications leave him cognitively impaired and he still has severe symptoms that leave him disabled from working and which prevent restful sleep.  He is also still unable to digest most food and is unable to care for himself and lives with his mother.  In this documentary, he is observed in his ordeal to apply for and be accepted to a Swiss euthanasia program called Dignitas where he intends to take his own life due to the intractable pain and incurable symptoms and progression of his disease.

While this man does not have Crohn’s disease, his condition is similar in many ways including severe intractable pain, gut issues leading to malnutrition, malabsorption and dehydration, and the incurable nature of his illness which Western medicine nevertheless does not consider terminal because there are “treatments” available when his bowel becomes obstructed, when fistulas open between his bowel and bladder causing him to urinate feces, and when he develops life threatening infections and sepsis.  Swiss euthanasia clinics appear to be the only such services available to nonterminal patients who suffer from intractable pain, and this video documents his attempts to navigate the financial and bureaucratic minefields standing between him and his chosen escape from his suffering: assisted dying, otherwise known as euthanasia or medically assisted suicide.

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Building Empathy for Crohn’s Sufferers. When “Good Days” Aren’t that Good and “Bad Days” Are Awful. Yes This is the Same Person.

As I have mentioned here before, Crohn’s patients talk openly amongst themselves about the hideous realities of Crohn’s disease but these things are mostly not shared outside Crohn’s communities.  Please watch this video in which a Crohn’s sufferer sums up the heinous reality of living with Crohn’s including extremely prevalent “suicidal ideation” which is completely and utterly taboo in some cultures including American culture for whatever reason.  Listen to the medical and bodily horrors this woman has experienced, the shared horrors many Crohn’s patients suffer or at least can relate to, and assuming they have been blessed with the gift of imagination can probably imagine they themselves may have to face in the future as a result of their shared incurable, largely untreatable, progressive disease.  The Crohn’s experience is literally a bloody horror show nearly beggaring belief — can you blame them for only wanting to tell the truth to other people who are going through the same things?  This woman has a severe manifestation of Crohn’s called Fistulizing Crohn’s and after struggling and resisting for years recently submitted to an ostomy surgery and will have an ostomy bag for the rest of her life.

Continue reading “Building Empathy for Crohn’s Sufferers. When “Good Days” Aren’t that Good and “Bad Days” Are Awful. Yes This is the Same Person.”

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”