So for the past week or so I have been in a full-blown Crohn’s flare. Being sick as hell all the time anyway, even when my GI symptoms are relatively minimal (meaning, minimal for me as a person with a chronic and debilitating autoimmune and GI disease) I guess I had forgotten how bad things can actually get! Despite having recently worsening symptoms like crippling fatigue, arthritis in my fingers, toes, shoulders, hips and spine, dizziness and trouble walking, my GI symptoms have been at a blessed minimum lately, consisting merely of having to ruthlessly police my own diet and avoiding most foods available in the supermarket or anywhere; waking up nauseated every single day and having to lay (well, writhe around) in bed for an hour every morning trying to fart (apparently extreme bloating makes one nauseated? Who knew!); being hit randomly throughout the day with stabbing abdominal pains, gas and bloating, “heartburn” which is really esophageal spasms that feel more like a cardiac event than a gastrointestinal one, pangs of nausea and other distressing sensations, and being glad I live alone so I can accomplish this daily ritual/grind in peace.
Other than that (!!) I felt relatively okay until about 10 days ago when the dreaded intestinal gurgling began. As far as I can tell the gurgling starts as I become more and more inflamed and less and less able to control my symptoms — is it masticated food trying to bypass an obstruction? Because that’s what it seems like to me. In short order I was in a full-blown flare in which my abdomen feels, looks and is like a bloated whiskey barrel overstuffed with boggy loaves of bread, broken glass, 190 proof alcohol, and poison. The broken glass, alcohol and poison are self-explanatory (severe sharp/gnawing/grinding pain, burning, smothering malaise). The boggy loaves of bread are my inflamed intestines and that’s exactly what it feels like — for instance, instead of moving and/or bending easily at the waist, bending over becomes grueling and distressing and literally feels like I am working against a waterlogged loaf of Wonder bread where my appendix and terminal ileum should be (abdominal right lower quadrant). There’s another loaf where my ascending colon should be and so on. If I drop something on the floor whilst in this sorry state it better be something I won’t be needing for awhile because I literally cannot bend over (or reach!) to pick it up again.
Continue reading “Aaaaaannnndddddd…We’re Back to Grateful. I Literally Forgot What a Full-Blown Crohn’s Flare Was Like.”
Recently I met Cheryl, a member of my adopted community here in the Middle of Nowhere, Cannabis Central, USA. Cheryl is a bit older than I am, used to be a writer of religious texts. Even had one published before self-publishing was a thing. A bona fide published writer. Writers are a weird bunch (obviously) and Cheryl is certainly weird, and was probably a bit (way) off even before she got sick — like me, Cheryl is seriously chronically ill. I haven’t asked about her diagnoses but like many chronically ill people and especially chronically ill women, she likely has more than one illness, and it is likely that at least one of her afflictions is an autoimmune disease. As I am learning, these illnesses, for whatever reason, tend to travel in packs. I personally only have one that I know of — Crohn’s disease — but since moving residences 2 weeks ago and finding myself unable to get out of bed much and wracked with head-to-toe pain and crippling fatigue ever since, I am once again wondering if I have another one although I have learned through reading other Crohn’s patients’ testimonies online that Crohn’s all by itself is enough to render anyone the barely-walking dead and that is indeed how I feel. Cheryl, on the other hand, has been buried under her particular prison for years.
Continue reading “Cheryl Went the Other Way. On The Path Not Taken.”
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.”
As I have continued to educate myself on the horrors of Crohn’s disease and the experiences of Crohn’s patients I have found that the discussions on the Crohn’s patient forums and message boards have been the most helpful. The patients there discuss openly and honestly what is going on with them, how they are feeling, how this disease has affected their lives. In reading their accounts, I noticed that four general themes arose again and again: firstly, that Crohn’s treatments are not effective at all, or if they work at first the relief doesn’t last, and in any case cause disabling side effects that are often even worse than the disease itself; secondly, that Crohn’s patients — having found no relief from conventional doctors or conventional treatment which often makes them worse — are often crippled from their illness and wish that friends and family were more understanding about how disabling Crohn’s can be and that it’s not just a “poop problem” but a systemic, chronic, incurable inflammatory autoimmune disease that often manifests outside the gut as well; thirdly, that even on their best days, Crohn’s patients still feel significantly ill and negative test results do not always correlate with decreased symptoms or decreased pain or increased ability; and lastly, and perhaps unsurprisingly considering the first 3, that there is a high depression and suicide rate among Crohn’s patients.
Please watch the following Crohn’s origin stories and see if it doesn’t make perfect sense that Crohn’s patients would tend to talk about the topics above again and again and again and again and again. And all this suffering, every bit of it, is due to iatrogenic illness and injuries resulting from Big Pharma voodoo and medical interventions themselves, including medical mistakes; the utter failure of the capitalistic patriarchal medical machine to relieve their suffering one bit; and cannabis restriction and prohibition, where the only substance on Earth known to reliably treat either chronic pain or chronic inflammation (and this does both) is cannabis, otherwise known as marijuana. And speaking of iatrogenic illness and injury (including so-called side effects) cannabis does it with literally zero risk of death and a relatively high risk of “euphoria” otherwise known as a feeling or state of intense excitement and happiness.
Yes, it seems that in the case of using medical cannabis to treat chronic inflammation, which it is known to do reliably and well, the most common “side effect” is to also simultaneously treat acute and chronic physical and mental pain. Now there’s a thought. Listen to their stories and see for yourself if you think these people deserve better. See for yourself if you think these people deserve the option — just the option! — of trying medical cannabis to treat this horrible, horrible disease and everything that comes with it.
Continue reading “A 4/20 Post. Crohn’s Disease Origin Stories. Sponsored by Big Pharma and Cannabis Prohibition.”
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”