#i’ve never had a doctor who actually took my chronic pain/fatigue/illness and disabilities seriously before

[hearteyespierce]

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[cannabisrefugee-esq]

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

January 23, 2019

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.

To illustrate, for the last 6 weeks or so I have been extremely fatigued to the point of being bedridden for most of it.  If it weren’t for having to get up to take care of my cats and absolutely bare-minimally tending to my small business I probably wouldn’t have been able to get up at all.  Once I had to move from the bed to the couch for most of the day because my bed had become damp and clammy from having laid in it for too many hours, days and weeks in a row: I flayed the covers off it and hit it with a box fan.  I couldn’t change the sheets because my only other set has been sitting in the hamper for 2 months waiting to be washed and other chronically ill people know exactly what that means: the last good day I had was 2 months ago where I changed the sheets and did half of my laundry.  Since then I haven’t been able to do a good goddamned thing.

Anyway, I’ve been so unbelievably exhausted recently that I’ve been unable to medicate properly.  Instead of changing my cannabis-infused transdermal patches every day or every other day, a few times I let it go for 4 or 5 days and for that I paid a terrible price: on top of the crippling fatigue and general malaise, as well as the continuous, daily pain and symptoms from Crohn’s which are always present to some degree and never go away, I was also so fucking sick from not medicating that I could no longer eat.  I had terrible stomach and intestinal pain including distressing burning, itching, pulling, pressure and boggy sensations as well as gastroparesis, nausea, heartburn, esophageal spasms and unsurprisingly, a profound aversion to food.  Which was good in a way since I was so tired I couldn’t have gotten to the grocery store to buy food anyway even if I had money to buy it or even a way to get to the store which I don’t.  And all of this misery, every bit of it including my poverty are due to the last 6 years spent as a full-blown Crohn’s patient but again, let’s not forget what Crohn’s is at base: it’s not about fatigue, it’s not about pain in a general or even in a specific way.  Although there is plenty of it it’s not about pain.  Crohn’s patients cannot eat.  We can’t eat.

As one might expect, following days, weeks, months and longer without a proper meal Crohn’s patients often become crazed and try to “eat something” — food which is then processed in our bodies exactly like poison.  We get nauseated and sweaty, we wretch, we heave, we shit our fucking brains out, all of which exacerbates our food aversion.  And as Crohn’s is admittedly a lifelong, incurable and progressive disease it goes on forever.  Forever.  Until you die from it.  No, Crohn’s patients do not die natural deaths peacefully in their sleep at an advanced age.  Crohn’s patients don’t sleep, at least not without massive pharmaceutical or other interventions.  When they die, Crohn’s patients die from not eating, or from the effects of their medications, or both. Or they die on the operating table or by suicide, both because of the Crohn’s.  They don’t have a chance to become old but again, that’s focusing on the end which becomes confusing as to cause.  Here it is helpful to go back to the beginning to what Crohn’s actually is at base: Crohn’s patients cannot eat.  We can’t eat.  And if you can’t eat you die.

All the conventional treatments we take, all the chasing our tails with alternative treatments including medical cannabis that aren’t sustainable anyway, all the resources poured into us (or not) by family and friends, all the money we spend on ourselves to get relief from this hideous disease is because we can’t eat and we are trying to fix that.  Even Crohn’s patients who achieve so-called “clinical remission” using dangerous and life-threatening drugs continue to have issues regardless of what the scopes say, regardless of whether there appears to be any active inflammation or not.  But if the treatment is successful, no matter how sick they still are, even if the medication gives them lupus or diabetes or AIDS or cancer, the “successful” Crohn’s patient will be able to eat.  That’s all we are asking for and it’s all some of us ever get — that’s what the successful ones get.  Although we are still sicker than most people can even imagine, finally, finally we get to eat.

And many Crohn’s patients never achieve clinical remission or have any success or get any relief at all from conventional treatments (i.e. we still can’t eat).  I didn’t.  After 2 entire years on conventional Crohn’s treatments I couldn’t eat a fucking thing.  Out of desperation I spent thousands of dollars on a sickening enteral feed that was supposed to give me all the nutrients I needed but without any fiber or anything to digest — it all went straight to my liver.  But because it had to go through my stomach and small intestine first, otherwise known as eating, all it did was make me sicker.  I was literally starving to death and there was nothing I or my doctors could do about it.  I was absolutely circling the drain.

It took me an entire year on mega-doses of marijuana (approaching 1,000mg THC daily, where 5-10mg is a standard recreational dose and 25-50mg is a standard medical dose) including smoking pot and eating simultaneously — a bite of food, a bong hit, repeat — to be able to tolerate food again.  After I stopped eating GMOs and switched to an exclusively 100% organic diet (including raw fermented organic food and various organic and non-GMO supplements) I didn’t have to smoke during meals anymore, but I still had to medicate daily.  In order to eat.  Of course, marijuana is also an exquisite pain reliever so a goodly portion of my pain and symptoms were also quelled and I felt remarkably better — about 50% better than I had since well before my diagnosis.  I was still extremely sick and I didn’t understand that part but I could eat again, I could sleep again and that was good enough for me.

I thought I would continue to get better though and I didn’t.   Because with Crohn’s the best you can hope for is to be able to eat again and even that’s not expected to last; it’s a progressive disease so you’re doing well if you stay the same and don’t get worse.  For me, because of the pot, I can still eat but I am, in fact, getting progressively worse.  The fatigue is worse, the good days are fewer and farther between but for now, because I can medicate, I can eat.  Of course, I can’t eat dairy, eggs, legumes, or anything in the gourd family (including squash, cucumber and melon) but I can eat.  As long as it’s organic and non-GMO I can eat (unless I can’t).

But what does it mean to be reliant on a consumerist solution — meaning “treatments” of any type including conventional, alternative or herbal including cannabis — in order to be able to eat?  That’s what no one seems willing to say.  From any angle, being dependent on a consumerist solution or any solution in order to eat means that you have an extremely serious and likely terminal disease.  Doesn’t it?  The fact that Crohn’s only gets worse over time underscores that point, where even if you do manage to find a consumerist solution that works, and even if you have easy access to it forever (most people don’t) over time you will find that you’re unable to eat once again.  Crohn’s “progresses” into stricturing or fistulizing late in the game, but early on it progresses from not being able to eat certain things to not being able to eat at all.  That’s the moment you would normally die except for consumerist solutions that only prolong the dying process.   You will face death by starvation again if you live that long where conventional treatments are known to kill you.

And that’s another point isn’t it — the drugs.  How, one may wonder, does Big Medicine justify giving extremely toxic drugs to Crohn’s patients when the drugs themselves cause hideous and disabling iatrogenic illnesses and injuries including lupus, opportunistic infections and cancer?  How can anyone reasonably accept being “infected” with full-blown untreated AIDS via immune system decimating “chemo” cancer drugs which themselves also cause cancer as a treatment for anything, especially something so (allegedly) trivial as Crohn’s disease?  The seriousness of Crohn’s is consistently downplayed by everyone who refuses to accept that it’s a terminal illness if you can’t eat you die, but the fact remains that no matter how sadistic our Big Pharma overlords really are, and it’s a lot, the benefit of the treatment still has to outweigh the risks at least on paper.  And the only way I can imagine that AIDS and cancer are better to have than Crohn’s is that Crohn’s is worse.  More relentlessly painful.  More predictably and profoundly disabling.  More likely to result in imminent death.  And everyone, and I mean everyone is lying about that.

I blame Big Pharma with its fictional Crohn’s drugs commercials that show (for example) a perfectly healthy actor in no distress whatsoever resting one hand on the waistband of his flat-front Dockers suggesting virtually nothing about what Crohn’s disease really entails (it’s not just about having unpredictable “bathroom visits” but it often includes that).  Also, in this culture, “the bathroom” is the final phase of eating.  Duh.  Read between the lines here people.  Eating is not comprised solely of chewing and swallowing (although some Crohn’s patients can’t even do that much).  If you can’t process food you will die and Crohn’s patients cannot process food whether they barf it up, shit it out too soon and too unprocessed, fail to assimilate it even if they can keep it down and/or in, or if they give up and/or can’t “eat” it at all.  I’ve seen Crohn’s patients admit that they often chew up food for the taste/craving satisfaction and then spit it out without swallowing.  That’s not eating y’all.

No one accepts that Crohn’s disease is fatal but now that I’ve seen what I’ve seen, I kind of have to.  I was unable to eat for 2 entire years and I felt like I was dying; I once told a friend that I couldn’t imagine living that way for another 40 years (I was 40 at the time) and I had no idea how right I was about that.  It’s unimaginable in this case because it’s not possible; it is not possible to get out of a fatal disease alive and Crohn’s disease is a fatal disease.  I was, of course, dying.  It took someone like me to figure it out — a professional problem solver and someone used to looking at patriarchal insanity and making perfect sense of it — and even I almost missed it because I was so unbelievably sick and weak, so brainwashed by the propaganda and so insane from the pain and medication I was unable to research much of anything let alone to deeply analyze it.  I spent easily $100,000 and 4 entire years this March getting comfortable/well enough to even attempt to get my head around what was happening to me, to organize my thoughts and to write about it on this blog.  I’ve written about it extensively for almost a year now and I just came to this conclusion a couple of days ago as what seems to me a natural progression of this research, these discussions and this work.  Crohn’s is fatal, I have a terminal disease, and now I get to come to terms with that.

I won’t comment on whether other autoimmune diseases are similarly fatal where patients are also prescribed the same immunity-decimating drugs that cause (essentially) AIDS, diabetes and cancer because I don’t know enough about them, but I think there is plenty that suggests that they are.  Why is letting a doctor give you AIDS better than living with untreated MS, RA and all the other autoimmune diseases that are routinely treated with chemo and biologics that leave the patient without an immune system and who is it better for, seem like questions worth asking.  In the case of Crohn’s, there is at least a chance (allegedly and on paper) that the patient will temporarily be able to eat again; and I think untreated (and treated) MS eventually stops your breathing but I’m not sure.

But why is Crohn’s specifically so downplayed when it is so gravely serious, why are Crohn’s patients specifically expected to continue working and recreating as if nothing is wrong when they are literally fucking dying and have to medicate successfully in order to eat?  Why in this case specifically will no one call a spade a spade and admit that it’s a terminal illness/fatal disease when it pretty obviously is one?   That’s what I’m thinking about now.

Please feel free to leave comments below.

[acyborgkitty]

I just finished watching Jennifer Brea’s incredible documentary Unrest on Netflix. Watch it now. Everyone should. 

My story.

I became ill suddenly, and severely, in September (I think) of 2016. I had just moved to Providence in August from San Francisco, without my partner of 10+ years, to take a teaching job at Brown University. I was teaching a poetry workshop for Frequency Writers, a community writing group, as well as a class I developed for Brown’s Literary Arts department, Experimental Poets of Color. Providence is a city I love, and even though the gig was adjunct (i.e. no job security, no health insurance, etc.) I wanted to be in Providence, and I wanted to be teaching in my fiend. I had health insurance through the ACA at the time, and though I had been diagnosed with several mental illnesses many years before (major depression and general and social anxiety disorders) I felt that my hearth was well managed with the medication I was on. 

I was so happy to be back in Providence, I would walk for hours around the city, sometimes 7 miles in one stretch, listening to music and books. I was thrilled to be teaching the class I desperately wish I had been able to take at any point in my education (which includes three masters degrees), and to be nearer to my friends and family who live in Boston and the surrounding areas. I missed my partner, but we’ve been long distance for much of our relationship (the price of being an artist in academia), and it seemed like he was getting ready to leave San Francisco and head back east himself. 

It was the second meeting, I think, of the Frequency open poetry workshop. It was Wednesday night. I walked to the community gallery space on Carpenter St. where we held our meetings early, unlocked the doors, and made myself some tea. It was a normal night. At some point during the workshop I started to feel exhausted, sick, like I was getting a cold. I pushed through, but took a Lyft home. I woke up the next day and still felt bad. Worse, even. I cancelled that day’s class and stayed in bed. By the next week I still wasn’t feeling any better. I went to the CVS clinic to see if I had the flu, which was going around and apparently quite bad that year. I didn’t, I was told it was just a bad cold, and to take some cough suppressant for the bad cough. 

I thought maybe I wasn’t sleeping well - I was tired all the time - and maybe that was making the cold last longer than normal. I had had (undiagnosed) chronic pain for years which had started in 2007 in my first year in grad school. It was especially bad in my neck and lower back, so I had spent years and a lot of money finding a really good mattress. But I had housemates that were young, noisy, up late, so I invested in an eye mask, noise-cancelling headphones that I slept in, and a white noise machine. I had to teach my classes, but I would show up, teach, and come immediately back home and stay in bed until I had to teach the next class. I spent several weeks like this, thinking it was just a cold, until someone pointed out that colds, even very bad ones, don’t last for several weeks. 

I made an appointment with my primary care doctor in Boston. I’ve struggled finding doctors that take me seriously, like most women and non binary people I imagine, especially with chronic and challenging illnesses. This doctor listened to me, and was gentle, and that was pretty much all I could hope for. He examined me, and tested me for mono, strep, walking pneumonia (which I’d had before, and which was basically the closest comparable experience I had). I had none of them. Then we tested my thyroid, my B12 levels, and my immune functions. He found nothing wrong with me. 

A digression on chronic pain, including a digression on trauma.

I had gone down a diagnostic wormhole several years ago when I’d first started getting tests to see if we could find an underlying cause for my chronic pain. It started in Iowa City, where I did my second graduate degree, and included MRIs, x-rays, testing for immunological disorders, cancers, and basically anything they could think of. Eventually I was referred to a psychologist, because they determined my pain might be a physical manifestation of trauma. And I’d had my share of trauma.

A digression on trauma. I grew up with an emotionally abusive mother who, though never diagnosed, meets all of the criteria for narcissistic personality disorder. I ran away from home as a teenager, living on the streets for most of a year, before re-establishing a relationship with my family, primarily my father who helped me get an apartment, back into school, and eventually into college. At that point my mother re-entered the picture, and my father stopped helping me pay for college, so I worked sometimes as many as 5 jobs while completing my undergraduate degree. I met my partner in undergrad, and he has been an immense help for me in recovering from my trauma, but like so many who were experienced long-term abuse as children, I probably will never be un-affected by my experiences. 

So the trauma angle seemed at least plausible to me, and I went to a year’s worth of sessions with two different people, one a psychologist who specialized in and studied the manifestation of trauma as physical pain, and another who practiced CBT and meditative mindfulness therapy. Both helped immensely with my emotional state, but my pain persisted. So when I moved away for my third graduate degree (my first move to Providence) I transferred care and we started the diagnostics all over again. This time I saved all my records - I have my MRIs and my X-rays still in some box somewhere. We did CAT scans and I went to scores of specialists including  an orthopedic surgeon who recommended surgery; a chiropractor who works with the Boston Ballet Company who diagnosed me as hyper-flexible and gave me strengthening exercises to do that actually seemed to help somewhat; and a neurologist who found nothing wrong with me at all. After four years of referrals and diagnostics, I found a integrative care physician who listened to me break down in her office, prescribed an anti-depressant that is also a sedative to help me fall asleep, and helped me come up with a plan to manage the pain. Massage, chiropractor, walking and stretching, the anti-depressants, 800mg Ibuprofen when I needed it, and Vicodin when nothing else helped. 

After all of this, I wasn’t eager to go down another diagnostic chase. 

Back to 2016.

By this point it was the middle of November. I was so sick that I couldn’t feed myself, I couldn’t do laundry, I couldn’t leave the house except for to teach, and then I spent the next 24-48 hours recovering mostly in bed from the fatigue it caused me. I was experiencing sever cognitive deficiencies, most notably my ability to process and retain information, and my ability to speak. It felt like I had dementia, or what I imagine dementia to feel like. I would read the same sentence over and over again and not understand it, or not remember it when I started the next one. I would fight to get up to go into the kitchen, only to forget what I was there for. Did I need water? Had I fed the cat? Did I need to use the bathroom? My father and brother were taking turns coming down to my house to prepare food for me for the week, and to get my groceries, and to do my laundry. I needed help with everything. I could do one, maybe two things in a given day. Those things included brushing my teeth and feeding the cat. 

I couldn’t even research my condition, given my cognitive symptoms. I was angry, and many days I felt like it would be better to die. I couldn’t read or write, so I took up embroidery as a way to try to keep my life worth living, a way to keep making art. 

In January, 2017 when my partner came to visit for his winter break, we went to my doctor together. I couldn’t remember the questions he wanted me to ask, and I couldn’t have remembered the answers anyway, and I certainly couldn’t get myself there and back without help, so him coming was the only way I was going to get there. I don’t remember much of the appointment, but I do remember my doctor suggested that I might be experiencing a severe prolonged depressive episode. Based on my previous diagnosis of depression. Based on the fact that there seemed to be nothing wrong with me, physically. 

My partner didn’t buy it. I sort of did, or at least I didn’t have the energy to dispute it. My partner started researching, aggressively, and a few months later he came up with something. Maybe, he said, it was my copper IUD. Maybe I had copper toxicity. My doctor said that was impossible, that the IUD can’t cause copper toxicity, but my symptoms aligned, and there are thousands of women on the internet who have experienced copper poisoning from their IUD. So one day in April, my best friend took me to the hospital and I had mine removed. The next day, I felt better. Not 100% better, but maybe 40% better. The next day my partner and I went for a walk, the first time in almost a year I had felt able to do that. 

I kept feeling better. Not getting better, but I stayed feeling about 40% better. A few days I felt almost entirely myself, but then the next day I would be exhausted again. I could do things, but if I pushed too hard, I would collapse and pay for it for days. I learned about spoons, and disability culture and activism. I learned about setting my limits, and prioritizing. I said no to almost everything, because almost nothing was worth the risk of incapacitation for me. 

My brain started to recover too - I could read. I started writing in my journal, not poetry but at least writing of some sort. I felt hopeful that I was recovering. We bought a house, a big old Victorian that needs TLC, and I moved in there with 4 other queer artist friends. I didn’t get the tenure-track job at Brown, but I did get another adjunct offer to teach Book Arts, and I accepted - something I definitely couldn’t have done at my sickest, given that it’s a 15-hr a week studio course. 

But now, a year post-removal, my memory is still a problem. And I still get exhausted a lot. A lot more than I used to, before I got sick. But the anecdotal evidence on the copper IUD detox forums says that it could take years to fully process the toxicity out of your system. The most severe days might be attributed to “dumps” - when the body releases stored copper all at once - and those days feel like my worst ones did when I was at my sickest. I had thought that when I felt better, I would start to do things again, go to poetry readings, have dinner with friends, go for walks, be part of the community I’d moved here because I loved. But I still say no to most things, or write them down in my calendar and don’t go. I know that if I push too hard, I’ll pay for it for days. And “too hard” is a moving target - it changes seemingly randomly, and I don’t know when I’m approaching it until it’s too late. Then I’m in bed for days. 

I’ve been having an especially bad few days. Maybe a week. Maybe more. My memory, my brain isn’t good at sequence anymore, or keeping track of time. It’s frustrating, because I can’t keep track of my own symptoms. Sometimes I remember to write them down, and sometimes I forget, or am too tired. And there’s no one here to watch me, or help me - my partner doesn’t move here until June. Today, for example, I got up at 11 and I fed the cats. And I was so tired that I lay down, and just...passed out. I don’t remember falling back asleep, but then I woke up at 6 pm. I fed the cats again, and then had to go back to bed. The last week has been similar: do just what is necessary, then back to bed. It feels like I’m sick all over again. 

I have had my period, which can be associated with copper dumps. I’m not saying it’s not copper “dumps,” or that it’s isn’t related to copper poisoning. But I watched Unrest and thought: “maybe this is what I have, too?” So many of those scenes were heartbreakingly familiar. I wept through most of it, because Jennifer was saying the things that I’d been feeling. About feeling like it was a good day when all I had done was survived it. About feeling like my life had ended, and that I had a new one now, one that sometimes didn’t feel like a life at all, but one that I still didn’t want to give up. About not being listened to, about not being believed. I wept at the thought of having a diagnosis, after all this time. Of maybe finally at least knowing what is wrong with me. Maybe.

But I don’t know how to find out. I don’t currently have health insurance, because the premium on my ACA policy from last year went up by 50% and I couldn’t afford it anymore, and adjuncts at Brown who teach fewer than 4 classes a year don’t get health insurance, and I’m only teaching 3, and I am barely able to do that; this semester teaching 2 classes took every bit of energy I had. I will get health insurance starting in September when my partner starts his new job in Providence, and maybe then I can get some answers. If I have the energy for it.

My story doesn’t have an ending yet. I’m in bed, as I have been all day. Writing this was the most writing I’ve done since I got sick. I’m grateful for that. It feels like, thanks to the work that Jennifer has done, an important story is at least starting to be told. Not just mine, but one that is shared by millions. 

[cannabisrefugee-esq]

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.

To illustrate, for the last 6 weeks or so I have been extremely fatigued to the point of being bedridden for most of it.  If it weren’t for having to get up to take care of my cats and absolutely bare-minimally tending to my small business I probably wouldn’t have been able to get up at all.  Once I had to move from the bed to the couch for most of the day because my bed had become damp and clammy from having laid in it for too many hours, days and weeks in a row: I flayed the covers off it and hit it with a box fan.  I couldn’t change the sheets because my only other set has been sitting in the hamper for 2 months waiting to be washed and other chronically ill people know exactly what that means: the last good day I had was 2 months ago where I changed the sheets and did half of my laundry.  Since then I haven’t been able to do a good goddamned thing.

Anyway, I’ve been so unbelievably exhausted recently that I’ve been unable to medicate properly.  Instead of changing my cannabis-infused transdermal patches every day or every other day, a few times I let it go for 4 or 5 days and for that I paid a terrible price: on top of the crippling fatigue and general malaise, as well as the continuous, daily pain and symptoms from Crohn’s which are always present to some degree and never go away, I was also so fucking sick from not medicating that I could no longer eat.  I had terrible stomach and intestinal pain including distressing burning, itching, pulling, pressure and boggy sensations as well as gastroparesis, nausea, heartburn, esophageal spasms and unsurprisingly, a profound aversion to food.  Which was good in a way since I was so tired I couldn’t have gotten to the grocery store to buy food anyway even if I had money to buy it or even a way to get to the store which I don’t.  And all of this misery, every bit of it including my poverty are due to the last 6 years spent as a full-blown Crohn’s patient but again, let’s not forget what Crohn’s is at base: it’s not about fatigue, it’s not about pain in a general or even in a specific way.  Although there is plenty of it it’s not about pain.   Crohn’s patients cannot eat.  We can’t eat.

As one might expect, following days, weeks, months and longer without a proper meal Crohn’s patients often become crazed and try to “eat something” — food which is then processed in our bodies exactly like poison.  We get nauseated and sweaty, we wretch, we heave, we shit our fucking brains out, all of which exacerbates our food aversion.  And as Crohn’s is admittedly a lifelong, incurable and progressive disease it goes on forever.  Forever.  Until you die from it.  No, Crohn’s patients do not die natural deaths peacefully in their sleep at an advanced age.  Crohn’s patients don’t sleep, at least not without massive pharmaceutical or other interventions.  When they die, Crohn’s patients die from not eating, or from the effects of their medications, or both. Or they die on the operating table or by suicide, both because of the Crohn’s.  They don’t have a chance to become old but again, that’s focusing on the end which becomes confusing as to cause.  Here it is helpful to go back to the beginning to what Crohn’s actually is at base: Crohn’s patients cannot eat.  We can’t eat.  And if you can’t eat you die.

All the conventional treatments we take, all the chasing our tails with alternative treatments including medical cannabis that aren’t sustainable anyway, all the resources poured into us (or not) by family and friends, all the money we spend on ourselves to get relief from this hideous disease is because we can’t eat and we are trying to fix that.  Even Crohn’s patients who achieve so-called “clinical remission” using dangerous and life-threatening drugs continue to have issues regardless of what the scopes say, regardless of whether there appears to be any active inflammation or not.  But if the treatment is successful, no matter how sick they still are, even if the medication gives them lupus or diabetes or AIDS or cancer, the “successful” Crohn’s patient will be able to eat.  That’s all we are asking for and it’s all some of us ever get — that’s what the successful ones get.  Although we are still sicker than most people can even imagine, finally, finally we get to eat.

And many Crohn’s patients never achieve clinical remission or have any success or get any relief at all from conventional treatments (i.e. we still can’t eat).  I didn’t.  After 2 entire years on conventional Crohn’s treatments I couldn’t eat a fucking thing.  Out of desperation I spent thousands of dollars on a sickening enteral feed that was supposed to give me all the nutrients I needed but without any fiber or anything to digest — it all went straight to my liver.  But because it had to go through my stomach and small intestine first, otherwise known as eating, all it did was make me sicker.  I was literally starving to death and there was nothing I or my doctors could do about it.  I was absolutely circling the drain.

It took me an entire year on mega-doses of marijuana (approaching 1,000mg THC daily, where 5-10mg is a standard recreational dose and 25-50mg is a standard medical dose) including smoking pot and eating simultaneously — a bite of food, a bong hit, repeat — to be able to tolerate food again.  After I stopped eating GMOs and switched to an exclusively 100% organic diet (including raw fermented organic food and various organic and non-GMO supplements) I didn’t have to smoke during meals anymore, but I still had to medicate daily.  In order to eat.  Of course, marijuana is also an exquisite pain reliever so a goodly portion of my pain and symptoms were also quelled and I felt remarkably better — about 50% better than I had since well before my diagnosis.  I was still extremely sick and I didn’t understand that part but I could eat again, I could sleep again and that was good enough for me.

I thought I would continue to get better though and I didn’t.   Because with Crohn’s the best you can hope for is to be able to eat again and even that’s not expected to last; it’s a progressive disease so you’re doing well if you stay the same and don’t get worse.  For me, because of the pot, I can still eat but I am, in fact, getting progressively worse.  The fatigue is worse, the good days are fewer and farther between but for now, because I can medicate, I can eat.  Of course, I can’t eat dairy, eggs, legumes, or anything in the gourd family (including squash, cucumber and melon) but I can eat.  As long as it’s organic and non-GMO I can eat (unless I can’t).

But what does it mean to be reliant on a consumerist solution — meaning “treatments” of any type including conventional, alternative or herbal including cannabis — in order to be able to eat?  That’s what no one seems willing to say.  From any angle, being dependent on a consumerist solution or any solution in order to eat means that you have an extremely serious and likely terminal disease.  Doesn’t it?  The fact that Crohn’s only gets worse over time underscores that point, where even if you do manage to find a consumerist solution that works, and even if you have easy access to it forever (most people don’t) over time you will find that you’re unable to eat once again.   Crohn’s “progresses” into stricturing or fistulizing late in the game, but early on it progresses from not being able to eat certain things to not being able to eat at all.  That’s the moment you would normally die except for consumerist solutions that only prolong the dying process.   You will face death by starvation again if you live that long where conventional treatments are known to kill you.

And that’s another point isn’t it — the drugs.  How, one may wonder, does Big Medicine justify giving extremely toxic drugs to Crohn’s patients when the drugs themselves cause hideous and disabling iatrogenic illnesses and injuries including lupus, opportunistic infections and cancer?  How can anyone reasonably accept being “infected” with full-blown untreated AIDS via immune system decimating “chemo” cancer drugs which themselves also cause cancer as a treatment for anything, especially something so (allegedly) trivial as Crohn’s disease?  The seriousness of Crohn’s is consistently downplayed by everyone who refuses to accept that it’s a terminal illness if you can’t eat you die, but the fact remains that no matter how sadistic our Big Pharma overlords really are, and it’s a lot, the benefit of the treatment still has to outweigh the risks at least on paper.  And the only way I can imagine that AIDS and cancer are better to have than Crohn’s is that Crohn’s is worse.  More relentlessly painful.  More predictably and profoundly disabling.  More likely to result in imminent death.  And everyone, and I mean everyone is lying about that.

I blame Big Pharma with its fictional Crohn’s drugs commercials that show (for example) a perfectly healthy actor in no distress whatsoever resting one hand on the waistband of his flat-front Dockers suggesting virtually nothing about what Crohn’s disease really entails (it’s not just about having unpredictable “bathroom visits” but it often includes that).  Also, in this culture, “the bathroom” is the final phase of eating.  Duh.  Read between the lines here people.  Eating is not comprised solely of chewing and swallowing (although some Crohn’s patients can’t even do that much).  If you can’t process food you will die and Crohn’s patients cannot process food whether they barf it up, shit it out too soon and too unprocessed, fail to assimilate it even if they can keep it down and/or in, or if they give up and/or can’t “eat” it at all.  I’ve seen Crohn’s patients admit that they often chew up food for the taste/craving satisfaction and then spit it out without swallowing.  That’s not eating y’all.

No one accepts that Crohn’s disease is fatal but now that I’ve seen what I’ve seen, I kind of have to.  I was unable to eat for 2 entire years and I felt like I was dying; I once told a friend that I couldn’t imagine living that way for another 40 years (I was 40 at the time) and I had no idea how right I was about that.  It’s unimaginable in this case because it’s not possible; it is not possible to get out of a fatal disease alive and Crohn’s disease is a fatal disease.  I was, of course, dying.  It took someone like me to figure it out — a professional problem solver and someone used to looking at patriarchal insanity and making perfect sense of it — and even I almost missed it because I was so unbelievably sick and weak, so brainwashed by the propaganda and so insane from the pain and medication I was unable to research much of anything let alone to deeply analyze it.  I spent easily $100,000 and 4 entire years this March getting comfortable/well enough to even attempt to get my head around what was happening to me, to organize my thoughts and to write about it on this blog.  I’ve written about it extensively for almost a year now and I just came to this conclusion a couple of days ago as what seems to me a natural progression of this research, these discussions and this work.  Crohn’s is fatal, I have a terminal disease, and now I get to come to terms with that.

I won’t comment on whether other autoimmune diseases are similarly fatal where patients are also prescribed the same immunity-decimating drugs that cause (essentially) AIDS, diabetes and cancer because I don’t know enough about them, but I think there is plenty that suggests that they are.  Why is letting a doctor give you AIDS better than living with untreated MS, RA and all the other autoimmune diseases that are routinely treated with chemo and biologics that leave the patient without an immune system and who is it better for, seem like questions worth asking.  In the case of Crohn’s, there is at least a chance (allegedly and on paper) that the patient will temporarily be able to eat again; and I think untreated (and treated) MS eventually stops your breathing but I’m not sure.

But why is Crohn’s specifically so downplayed when it is so gravely serious, why are Crohn’s patients specifically expected to continue working and recreating as if nothing is wrong when they are literally fucking dying and have to medicate successfully in order to eat?  Why in this case specifically will no one call a spade a spade and admit that it’s a terminal illness/fatal disease when it pretty obviously is one?   That’s what I’m thinking about now...