How Sick is Sick? Why “Just Wear a Diaper” is Not Good Advice.

Just wear a diaper.  This was the response of my now ex-boyfriend when I told him how sick I was due to my Crohn’s disease, that I was unable to travel, and that if I was ever going to leave this cannabis legal state for another more affordable one I would need help with literally everything that entailed, up to and including supporting me with physical caretaking for the duration of the trip and likely continuing once I got there.  Before I started to feel significantly better, about a year and a half after beginning treatment with medical cannabis, I was extremely, extremely ill, more ill than I had ever been in my life, sicker than I ever thought possible, and so sick I actually thought I would die.  I hadn’t slept well if at all in literally years by then, I had been unable to eat or digest food without extreme physical distress for the same amount of time, and had lost significant weight.  But more importantly than weight, sleep or nutrition, every last drop of my former vitality was gone and no matter what I did or didn’t do, including 2 full years of compliance, dutifully taking Western medical treatments that were actually making me worse, nothing helped to quash the hellish, unrelenting pain and symptoms of my serious chronic illness.  I was absolutely circling the drain.

Before this happened to me I had no idea it was even possible to be that sick.  How sick was I?  Well, I was so sick that eating food put me in severe distress, so much that not eating at all was preferable, even if I didn’t eat for days, and even if the reason I didn’t eat for days was because I had the flu.  Having the flu and not being able to eat for days actually made me feel better than I usually felt because all food made me extremely, extremely ill including severe unrelenting bloating, nausea, fevers, full body and joint pain, crippling abdominal pain, gut spasms, urgency and diarrhea.  I felt better with a full-blown flu than I did on a normal Crohn’s day.

Remember last time you had the flu?  Try.  Try to remember how badly it sucked and how long it lasted, how your whole body hurt inside and out, how you were cognitively slowed if not downright impaired, how you had a massive fever and a crippling headache, how difficult if not impossible it was to do everyday tasks like driving, conducting telephone or in-person business like making and getting to an appointment or getting prescriptions filled, how hard it was to work a full day (or how hard it was to even move) how you lost your appetite completely, how you shit and/or puked your guts out if you even tried to eat or drink.  As an un- and undertreated Crohn’s patient, having the flu and all it entails was actually bliss for me and better than I could ever hope for on a normal day because I couldn’t eat, and where food made me extremely, extremely ill.  In fact, if I hadn’t come down with the second-worst flu of my life 2 days before I was scheduled to travel across the country to legally treat my Crohn’s disease with medical cannabis, I may not have been able to make the trip at all.  That is how unbelievably sick I have been as a Crohn’s patient, but I have found that it was and is impossible to get anyone to understand it if they have not experienced it themselves, and that generally-well people just do not get what being seriously or chronically ill is really like and apparently it’s impossible to explain it to them.

So why is “just wear a diaper” not good advice to someone who is chronically, incurably and progressively ill, basically incontinent and unable to predict when, where, how frequently etc. they will have to “use the toilet” whether or not there is actually a toilet around?  Because diapers aren’t meant for sick people, that’s why, and diapers do not make someone who is extremely ill well again.  They just don’t and they just can’t.  Believe it or don’t, there are limits to what diapers are able to do, you see, and it has everything to do with what diapers were (and were not) designed to do in the first place.

Babies shitting into diapers aren’t sick, elderly people doing the same thing aren’t sick.  Get it?  They do not have crippling pain that accompanies their often unpredictable need to shit, they do not have to puke at the same time they are shitting, they do not have to figure out how to lay down and shit at the same time — or do all of this while puking — because they are too ill to sit up and shit or to sit up to shit-while-puking.  If you do not have Crohn’s disease yourself, it is likely that you have never considered that it was even possible to be this sick just like I didn’t know until it happened to me.  But hearing this kind of fuckwittery — like “just wear a diaper!” — from people who are supposed to care about you is not helpful.  Please read on if you do not wish to seriously hurt someone you are supposed to care about but who has, unfortunately, fallen seriously chronically ill.

My (now!) ex literally thought if I just wore a diaper that I would be good to go, that I could just go to the store and shop for him (while I shit up and down the aisles and while standing in line and doing all of this amongst other people), that I could go on job interviews and perform not just well but better than any other candidate so that I would actually be offered the job (while copiously shitting inside my business suit the entire time in front of the interviewer, staff and potentially in front of their clients), that if I just wore a diaper I could (somehow) manage to sit up in the car long enough to even get where I was going, and then get myself home again, even though I sometimes couldn’t even sit up on the toilet for as long as I needed to shit and actually had to lay down in the shower to shit multiple times.  He just assumed that if I could just manage to contain my shit and keep it from being seen by other people, that that meant I was well and no longer sick, and that I could (somehow) manage to once again do everything else I used to do effortlessly — everything I had been able to do before I got sick, even though I was still sick and even though a diaper is not a cure for being sick — but that is magical thinking if I’ve ever seen it.

What about the farting, I asked?  What about the smell?  This is an actual conversation I had to have with another adult human being, someone I was with for 15 fucking years, who did not believe me when I told him I was sick and when I did tell him still didn’t get it, made no effort to get it, and didn’t even seem to care.  Does my dignity count for nothing anymore as an ill person who can no longer work full-time or perform the activities of daily living because I can no longer reliably control when and where I shit?  That’s right.  It absolutely doesn’t count at all.  Once you are a Crohn’s patient, your dignity no longer matters to anyone except to you.  You will be very lucky not to end up in a homeless shelter shitting your pants in front of everyone with no clean clothes to change into and if you are somehow able to avoid that fate you will be fortunate indeed.  I myself may not in fact be able to avoid that fate as I have now reached the end of my personal resources and ability to deal with my illness alone, and am facing looming homelessness as a seriously chronically ill person with friends and family unwilling or unable to help.  And giving out advice — like “just wear a diaper!” — please believe me, is worse than no help at all because it’s fucking insulting, enraging, and a completely exhausting waste of a sick person’s time, energy and sanity to deal with.  But I was subjected to it anyway and have been subjected to this type and degree of misunderstanding the entire time and still am, with no end to it in sight.

The only way I could avoid being abused this way was to stop talking to everyone I thought I knew, and everyone who was supposed to care about me but obviously didn’t.  Because if you can’t listen to a sick person and accept what that person is telling you at face value, it absolutely means you don’t care.  If you cared, you would care enough to understand and believe what a sick person has gathered the physical, mental and emotional grit to attempt to communicate to you and to prioritize patients’ self-reports over the Big Pharma propaganda that’s inside your head self-servingly telling you that there is a consumerist remedy for everything, even when there’s not, and in the case of Crohn’s disease and other confounding autoimmune diseases that do not respond, do not respond well, or do not respond for long to conventional treatments, Big Pharma absolutely lies and has every reason to lie about that.  Believing someone you supposedly love over Big Pharma propaganda is a tall, tall order apparently, and other sick people know exactly what I mean.  Most well people have no idea what I mean and most have no idea what corporate propaganda even is, how effective it is, and how it has likely shaped their own views and the cultural conversation about illness, chronic illness and incurable, progressive disease.  Of course it has.

Here are some more examples of how sick I have been since I was diagnosed with Crohn’s disease, a crippling autoimmune disease that is incurable, largely untreatable, and progressive:

1. I have had to figure out how to shit lying down.

In not just one but 2 types of situations I have had to figure out how to shit lying down, both problems I solved by crawling into the bottom of the shower, laying down and shitting that way until I was done, no matter if that took hours or the majority of the day.  One, when I was simply too ill to sit up on the toilet for as long as I needed to fully shit.  And two, when I was trying to take a shower and was in and out so many times to sit on the toilet to shit that I was exhausting myself and causing water damage not only to the bathroom floor but also the baseboards and walls and anything that happened to be on the floor at the time.  Completely spent, not completely washed, and physically and mentally unable to continue to step in and out of the shower (or sit upright on the toilet by then anyway) I simply laid down in the bottom of the shower and shit there until I was done.

2. I have laid on a blanket on the floor in front of the heater and shaken uncontrollably not just for hours, not just for days, but for several consecutive months.

If I had not been here completely alone I would’ve surely been taken to the hospital many times by now because most roommates, most caretakers and most Western people would not tolerate the kind of deviance it takes to eschew Western medicine even when you may actually die, and I do think I was dying at the point I began months of uncontrollable shivering and shaking.  Based on my symptoms I probably had some kind of gut or other infection, but I had worked so hard to cultivate good gut bacteria and had spent so much time and money on that pursuit that I refused to undo all my hard work by submitting to toxic Big Pharma poisons including antibiotics and I didn’t care if my decision “caused” me to literally die (or more to the point, if it prevented capitalistic patriarchal medicine from “saving” me).

I did not fucking care because Western medicine had done nothing for me up to then except to reliably make me worse.  A natural death-by-infection would be heaven compared to a life and early death filled with iatrogenic illnesses and injuries caused by Western medical treatments I fundamentally politically disagreed with, which weren’t working for me anyway and which were actually making me worse, and which I therefore flatly did not want under any circumstance, let alone where any such treatment was forced on me against my will.  All of this unnecessary and extraneous medical trauma accumulates and affects sick people’s lives even more and even worse than they were affected before from their disease alone, and I was not and am not going out like that, even if my disease ends up killing me.

3. I couldn’t physically or mentally safely drive a car for long periods of time — up to 2 or 3 months if not longer — and had to order food and necessities from Amazon including supplies for myself, my home and my cats.

Running out of kitty litter is like simultaneously running out of toilet paper, baby wipes, water, Kleenex, paper towels, actual towels, T-shirts and anything remotely wipe-like as well as not having a toilet, a bucket, a cooking pan, the ground, or anything to relieve yourself on or in.  As sick as I was at my worst, I never, ever, ever allowed myself to run out of kitty litter (or cat food or anything I needed for my cats) a single time and I am grateful for and proud of that.  My 2 adopted shelter cats are happy, healthy and well-taken care of and they are the only part of this experience — traveling across the country alone to treat my serious chronic illness with medical cannabis — that has not been absolute, utter and unmitigated hell.  I hope we can stay together forever.  I frankly cannot imagine how that will ever happen but it consumes my thoughts, so instead, I just try not to think about it.  I love them, and love on them, as much as they will tolerate and I atheist-pray that I will be able to continue doing that with them indefinitely.  I hope, and I hope, and I hope.

4. I have gone weeks and months only eating 200-300 calories a day, where a subsistence diet requires at least 1200 calories a day, and it took me all day to get and keep it down.

This is equivalent to one tortilla, one or two slices of lunch meat, and some raw fermented sauerkraut where I attempted to keep my weight on and to maintain my gut health as best I could, all the while battling the severe anorexic-type effects of Crohn’s including lack of appetite, crippling nausea and complete disinterest in food.

5. I have had to smoke marijuana not just before and/or after, but during meals and after every or every-other bite, just to maintain my appetite and interest in food from one bite to the next, and to dull the excruciating pain and symptoms that eating food caused before I could even finish a meal.

6. I have woken up crying every morning — when I could even sleep, and where I even had the energy to cry — devastated that I had not died overnight and having no idea how I would get through another day of the hellish, unrelenting agony of un- and undertreated Crohn’s disease.

Death literally would be better than this on every level and I have atheist-prayed for death since I have been ill more times than I can remember or count.  Notably, I haven’t prayed for death once that I can recall since I’ve been treating with medical cannabis, at least not because of the physical effects of the disease itself.  Waking up each morning being varying degrees of sick — but notably not devastated to be alive — is something I owe to my handcrafted cannabis treatment protocol and something that 2 entire years of conventional Crohn’s treatment was never able to offer me where it was not helping, not helping much, or not helping for long and where I was only becoming progressively and terrifyingly worse.

But as I have heard other autoimmune disease sufferers report, the pain and disability of their illness is awful, but when combined with the misunderstanding of family and friends can and does make seriously ill people’s grossly diminished lives simply not worth living.  And that’s even before what’s left of your “life” — meaning your social and financial presence — disappears like a fart in the wind, where there simply is no social or financial (or familial) safety net for many if not most people once they have the bad luck to fall seriously, chronically ill.  The Crohn’s experience — and the experience of others with serious chronic and autoimmune disease — consists of the illness itself which is far beyond anything a well person could ever contemplate + friends and family not believing you are really sick or how debilitating a serious chronic illness really is + financial and other social fallout/problems indirectly related to your disease, all of which the sick person has no control over, and all of which conspire together to utterly destroy sick people’s lives.

A fucking diaper is not a panacea in a case like this, any more than conventional Western medicine and Big Pharma poisons are a panacea, meant to easily, completely and permanently make seriously chronically people well again so that they no longer inconvenience other people — or affect them at all — with their illness and with their falling-apart lives.  That is the reality of serious chronic illness and pretending otherwise, that incurable diseases are curable, and that progressive diseases do not progress, is cruel, self-serving and no one should expect any sick person to tolerate it.  If I sound a bit angry that I have been expected to tolerate it for going on 6 years now, ever since I was diagnosed with a serious, incurable and progressive disease, it’s only because I am.

 

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16 thoughts on “How Sick is Sick? Why “Just Wear a Diaper” is Not Good Advice.

  1. This is one of the most eloquent and agonizing things that you have ever written. I am in tears. You convey so much, so brilliantly. Thank you for your communication. ❤

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  2. Thank you Mary, and thank you for reading and commenting. I have waited to write these last 2 posts for the right time and until the right groundwork had been laid. I think I accomplished that.

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  3. Yes, I am amazed at your ability to function. Still one of the best writers online.

    I have used the shower, but now, mostly to keep clean. It was so hard, and always wet and so cold, just cleaning up and then having to get back in again. I seem to be in a remission of sorts now. Now about four bowel movements a day, which is waaaay less than it has been. Minor IBS symptoms, but still urgency and where do you go if out? Starbucks is good. I map them out and shop or have appts near them. Generally clean, private, not having to have someone else sitting next.

    Can you get Jiffy cloths? They are more substantial than paper, larger than wipes, will hold liquid soap when you squirt some on. Dispose.

    I found probiotic yogurts to make me worse. No kombucha, no pure saurkraut, no kimchi or anything fermented. I thought it was supposed to help? No. When I couldn’t get out to get any for about five days, I improved. Now I never touch it. I can tolerate some dairy so I eat plain ice cream, hagen daaz.
    xxx

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  4. Hi mb, thank you for your comment and kind reply. I have found that I need probiotics and fermented foods, but ONLY if they are nondairy and only 100% organic. I feel ok for about a week without anything fermented, but then I start declining, especially if I don’t have fresh produce as well. I think the fresh produce has beneficial microorganisms on it so if I only eat canned food I start to become ill from it but again, I can only eat organic, even if its fresh. The MMJ is a powerful anti inflammatory and I do not know which of these things (fermented/probiotic, fresh organic produce and MMJ) has helped what, or helped the most. I seem to do the best when I have easy and plentiful access to all. If you “only” have urgency and not full body symptoms you probably do not have IBD, but certainly IBS is bad enough. I’ve not heard of Jiffy cloths but I am intrigued. My wipes budget is currently not funded so I’ve just been taking showers lol. That’s not anything I can reliably do when I’m extremely ill, and I’m heat intolerant now to boot, but its working alright for now. Luckily, water and utilities are included in my rent.

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  5. Could you please tell me what I can do for you? I don’t think I have more to share, and what good is it anyway. Is there something I can actually DO for you? Just say and I will if at all possible. I am a bit luckier now that I am on pension. It comes, however I feel, until I don’t.

    Something else: Did you have colic when you were a baby? That’s a sign of crohn’s. Infant Crohns. Remember that if you ever hear a very young baby screaming and screaming day in and day out, all night, and unable to be comforted.

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  6. Yes, my mother told me I had uncontrollable colic that served as reliable birth control for her friends and which caused her to hate me because I was inconsolable and stressed her out to the max. She never bonded with me, of course she is also extremely cold anyway, never wanted kids, and was only impregnated in the first place via rape (3 times, once with a colicky baby, me, then with my sister, then with an infant born with a terminal congenital disease). Fun times. The only thing I can ask anyone to do, because no one is physically here, is to donate to my Patreon page. A larger one-time donation is better than a bunch of tiny ones if you can manage it. I am trying so hard every day to find a way out of this mess. Unfortunately, without the physical presence of someone who cares to and can help me and my cats get to safety, money is the next best thing. Thank you for offering and wanting to help.

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  7. Maybe called J-Cloths there? They are in the laundry, dishes detergents, sponges, Mr. Clean etc aisles. Best thing about them is you run hot water and soap them up and they are soft and thorough without tearing or being soggy. Because they are bigger you can use one instead of several baby wipes.

    Ok I’ll Patreon.

    My symptoms are mild compared to yours. And I could be totally wrong about probiotics. Truly, I can’t figure it out.

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  8. Everyone is different mb, you may not have figured it out and you may never, but your experience may be totally different than mine. The quality of probiotics is important as well, I have had contaminated probiotics that gave me thrush instead of actually doing something useful. High quality supplements are the only quality supplements as far as I can tell. Or maybe you just don’t need them. I spent 3 years and my life’s accumulations in trying to figure out what worked for me, but in the end, does it even matter? It’s all just unsustainable anyway. If we can’t get what we need more or less effortlessly from our environment, meaning food, water and air, we have completely lost and I think that’s where we now find ourselves. It shouldn’t be this hard to be healthy and we should NEVER have to align ourselves with a corporation or a manufactured product to make us feel better. This has to be the end of the road. Patreon me only if you want to, and have it to spare. Thank you for reaching out and for wanting to help.

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  9. Hi, thanks for the link! I have researched fecal transplants and it seems like they are not effective for small bowel Crohn’s which is what I have (mostly). I did read once on a Crohn’s patient forum that a man suffering from Crohn’s was so desperate for relief that he did a DIY fecal transplant except he thought you were supposed to drink it. :/ That’s how desperate Crohn’s patient are for relief, they will literally drink someone else’s shit if they think there is ANY chance it will make them feel better. And many of us are so used to drinking sickening fluids like enteral feeds, barium and other test preps and the like that drinking shit probably didn’t even seem that weird to him. I doubt it worked but it is a grim illustration of how utterly, utterly desperate Crohn’s patients are, and we need to ask ourselves why that is. It’s because it’s a HIDEOUS disease and the conventional treatments DO NOT WORK. That’s what I hope people are getting out of this blog and others discussing autoimmune disease because that has been the big revelation for me and what is completely buried by Big Pharma propaganda about how treatable Crohn’s really is. It really is not treatable with Big Pharma poisons at all, and because it’s progressive it only gets worse.

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