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.
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