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.”

Underpants Gnome Logic: Treating Crohn’s Disease with Biologics. An Illustration. (Phase 1. Destroy Your Immune System. Phase 2. ?? Phase 3. Feel Better).

The Underpants Gnomes from South Park have this critical thinking thing down.  Exactly as well as anyone taking (or giving) biologics to treat autoimmune disease, anyway.  I wish there was more rampant discussion about this literally everywhere, but if there is I haven’t seen it.  The best I have seen is this post by RA Warrior (links within) addressing Big Pharma propaganda, specifically how Big Pharma lies about every facet of autoimmune disease including how disabling autoimmune diseases are, how effective the treatments are (necessarily including a cost-benefit analysis considering the iatrogenic illnesses and injuries inherent to Big Pharma treatments including biologic treatment) and how these diseases progress.

In fact, autoimmune patients know too well that the reality of living with an incurable, untreatable and progressive disease — and autoimmune patients often live with more than one — exists in stark contrast to the messages in these propaganda campaigns: these diseases are often extremely disabling and cause systemic (not merely localized) effects; the symptoms including pain and disability are NOT treatable, where they do not respond, do not respond well, or do not respond for long to conventional treatments including biologics; and autoimmune diseases are progressive where you will be lucky to just stay the same and not get worse.  None of this is consistent with the claims that autoimmune patients can “get their lives back” with any Big Pharma treatment, let alone a treatment that destroys your immune system like so-called biologics do.

Continue reading “Underpants Gnome Logic: Treating Crohn’s Disease with Biologics. An Illustration. (Phase 1. Destroy Your Immune System. Phase 2. ?? Phase 3. Feel Better).”

Autoimmune Women Are Supposed to Pay Doctors to Give Them AIDS. Are You Fucking Kidding Me.

Remember when “they” were saying that getting AIDS was like the worst thing ever?  I do — I am a child of the 80s afterall, and I was in 4th or 5th grade when the AIDS crisis hit and everyone was terrified of getting AIDS, children (children!) were being told to never have “unprotected” sex because of the AIDS, early on we were being told not to use public drinking fountains and to ostracize children with AIDS so as not to get AIDS ourselves.  Remember Ryan White?  I do!  I didn’t even have to Google to find his name, 40 years later I still remember his name and his story by heart, he was from my state and a few years older than I was.  He scared the shit out of everyone because he wasn’t doing anything “wrong” when he contracted AIDS like having the unprotected (or gay) sex.  That poor soul got it from a medical procedure, in his case, a blood transfusion for hemophilia.  Tragic.

Soon it became passé for anyone to trouble themselves with “how” anyone contracted AIDS — AIDS patients deserved our compassion, our respect, our acceptance of their physical and mental decline and resulting disability, regardless of how they got it.  Remember Ali Gertz?  I do.  She was a straight, affluent, white female and she got HIV and developed AIDS from a single sexual encounter with a man.  Of course, the man was bisexual and almost certainly got it from another man but by then it ostensibly didn’t matter…unless a woman gave her baby AIDS, then of course the woman was the Devil.  AIDS didn’t discriminate, AIDS was a horrible, painful, untreatable disease, a death sentence that no one deserved…except mothers who gave their babies AIDS, they deserved everything they got and more.  But deserved or not, no one was disputing that AIDS was serious, painfully serious, brutally final.

At some point “they” started saying no it’s not the AIDS specifically that’s the problem, it’s the HIV you don’t want, and that’s a virus so just use Universal Precautions and you should be fine!  Fairly recently they started saying it’s possible to “live with” HIV and never develop full-blown AIDS at all.  The message there appears to be that AIDS is actually what you don’t want afterall.  AIDS — Acquired Immuno Deficiency Syndrome — where your immune system becomes weakened, decimated and destroyed and you develop life-threatening opportunistic infections from bacteria, viruses, parasites, fungi, you get cancer (or more than one) and then need to be treated for the cancer(s), your quality of life plummets to zero and you can no longer work or play effectively, your friends and family have to care for you, even though there’s nothing long-term they can do for you, and you die painfully, skeletally, covered in sores and rashes, beyond spent, half out of your mind.  That’s the effects of the AIDS mind you — the HIV in and of itself appears to be relatively harmless except that it causes AIDS, and AIDS is still bad, very very bad, something unequivocally to be avoided.  Are we clear on that?  Good.

Enter “biologics,” the class of “treatment” — read Big Pharma poison — approved for managing autoimmune diseases like Multiple Sclerosis (MS), Rheumatoid Arthritis (RA) Crohn’s disease and more.  The so-called “side effect” of biologics — read iatrogenic illness and injury, meaning additional illness and injury caused by medical attention and treatment itself — is that biologics “change how your immune system works.”  That obfuscating bit of Big Pharma propaganda brought to you by the literal pricks at Johns Hopkins Arthritis Center.  Of course, “change” here means “destroy” and going from having a functioning immune system to not having an immune system at all is certainly a change so they aren’t technically lying but WOW, just wow.

Continue reading “Autoimmune Women Are Supposed to Pay Doctors to Give Them AIDS. Are You Fucking Kidding Me.”

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.”

Pardon My Schadenfreude. Discussing Disaffected Doctor Suicides

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.

Continue reading “Pardon My Schadenfreude. Discussing Disaffected Doctor Suicides”

How Can a “Tummy Ache” Be So Disabling? Sh*t Friends and Family Members Say to Crohn’s Patients. Part II. The Treatment.

In Part I of this series, I described the mind- and body-shattering symptoms of Crohn’s disease, a crippling autoimmune disease of the digestive tract that also causes systemic effects like joint pain, skin eruptions and fevers.  Since getting my Crohn’s diagnosis, friends and family members have spoken and acted in such ignorant and hurtful ways towards me and my situation that I have unapologetically cut off contact with almost everyone I know.  I just didn’t have the physical or mental stamina to deal with their hatred or to correct their misperceptions about me, my disease or my “new” life complicated by serious and debilitating chronic illness.  When I say “hatred” I am referring to hate as a verb: the process and practice of othering me, my body, my experiences, my needs and my life.  I am sure if anyone asked them if they hated me they would say they didn’t, not in the noun-sense of feeling hateful emotions towards me.  But in the political, material sense, othering is hatred — the kind of hatred that civil rights groups have actively resisted and sought to eradicate because othering causes disenfranchised people to suffer and die when their needs, desires, interests, perspectives, histories and calls for justice are roundly ignored.

In this Part II, I will describe the horror of Crohn’s treatment which apparently one has to actually experience in order to understand or empathize with.  In my experience, which I have seen mirrored in many online support groups for Crohn’s patients, the accepted treatments for Crohn’s are often brutal and offer minimal or no relief.  Furthermore, with its toxic Big Pharma poisons, invasive tests and risky surgeries, Crohn’s treatment often causes “side-effects” that are as bad as or worse than the disease.  For example, an immune-system obliterating series of infusions was the next weapon in my gastroenterologists’ arsenal and is known to cause opportunistic infections, cancer and even death.

Continue reading “How Can a “Tummy Ache” Be So Disabling? Sh*t Friends and Family Members Say to Crohn’s Patients. Part II. The Treatment.”