The IBS is . . . I keep thinking I have it under control and it keeps randomly acting up. I just spent three days in intermittent pain, and am STILL in a little pain, though it's settling down and I should be okay tomorrow.
I am afraid to eat anything. I'm doing better than I was for a while there, but it's still a fight to make myself put food in my face most days even though I know that not eating enough is sometimes as bad as eating the wrong things. For a while it was so bad . . . like goddamn, I lost thirty pounds. THIRTY POUNDS. Do you KNOW how fucked up that is?
It's not the pain. That's not what I struggle with the most. I mean, it takes a physical toll if it goes on for too long, but mine isn't all that bad so mostly it just hurts in 5-10 minute bursts, and even when it's bad it goes away pretty quick. By itself, it's not bad enough to get me really down.
No, what does me in about having IBS is:
How it's totally random a lot of times, so I can't count on not being in pain on any given day.
Having to worry at all times where the nearest bathroom is, and if there's not one, suffering considerable anxiety that only makes it more likely I will need one.
Having to carry, JUST IN CASE, a change of clothes, plastic bags, toilet paper, meds, supplements, baby wipes, and all that crap if I'm going to be on the road long enough for bathroom access to be an issue.
Deciding I just won't eat when I go out because that's better than triggering an attack and easier than explaining my dietary needs to people I hardly ever see or may never see again.
Going hungry for hours and hours because the effort to prepare food and be afraid of what it will to do me is too great, when I could just completely avoid both of those things at one fell swoop. Yes, this is a reasonable choice to make sometimes. You would make it too, trust me.
Losing restaurants as a neutral meeting ground almost entirely, both because there's not a whole lot that is safe to eat and because just trying to eat out is nerve-wracking on top of the general strain of socializing. I'm an introvert and I'm mentally ill. It's hard for me even without sudden intestinal cramps at the table.
Not being able to do normal things like meet people for early holiday meals or get an early start on a day trip, because if I leave and my body goes into "We're in the car for GOD'S SAKE DON'T POOP" mode, I won't see that shit again until tomorrow, at which point it will often be excruciating.
Having to try to explain this to people as a very real thing that absolutely affects what I am willing to do for them. And that doesn't mean I'm a bitch. It means this hurts and makes me tired and if I can possibly avoid it, I will, so please forgive me for not really wanting to go do that early dinner thing and possibly triggering an attack that will screw with me for a week.
Never having pizza again.
Having to put up with people equating my "I will shit out my own toenails if I eat this" with their "it gave me a tummyache one time." They don't mean anything by it, but trust me, if you have a relatively normal digestive system that behaves itself 9/10 of the time so that you can still eat ice cream, pizza, steak, hush. Just hush.
Having to put up with hlepful people and their hlepful advice. Which is usually inaccurate or old news, in addition to being presumptuous, invasive, and occasionally gross.
Let me tell you, wow, if you ever need to feel like an un-sexy marsh witch, sitting inside a smelly bathroom and seething in your own fecal vapors sure is a great way to kick that into high gear.
Constantly second-guessing everything I put into my body. Even water.
Ibuprofen is a reliable trigger! So is Aleve! That's right, the two most effective OTC painkillers/anti-inflammatories in existence will make me acid-crap my way into the next world. Hahaha you have a headache, fuck you!
Drink enough water to stay hydrated and reduce the constipation a little? Ahahaha fuck your full night's sleep, then! Fuck it in the ear!
Feeling a little wistful that you're actually happy about a lot of the rest of your life, meaning that suicide isn't really on the table anymore so you can't even look at the possibility and go "Welp, as long as I'm killing myself, that'd sure keep me from ever having to experience the wrath of god pouring out of my asshole ever again."
The question "If you could trade bodies with anyone for a day, what would you do?" doesn't immediately call to mind elaborate sexual scenarios or the thrilling possibilities of international travel. I don't even think about robbing a bank. Instead, I fantasize about switching with someone who can eat a goddamn ice cream sandwich without feeling like there are monkeys fighting inside their colon. And then killing my actual body so that I never have to switch back. Robbing a bank won't make the pain stop.
Having to explain to the cats why I'm short-tempered or don't want to play. Oh, wait, I can't explain that to them. They're cats. So they just think I don't love them.
The way it ravages my butthole, leaving it more than functional enough to work, but not at all functional enough to play. Fucking bullshit, man. Humiliating, disgusting bullshit.
Knowing that science can do almost nothing for me, leaving me to my own devices to slowly figure out a diet and supplements that work.*
Having to pay for those supplements, which cost between 1/5 and 1/4 of what I get in disability. A hundred to a hundred and thirty bucks every month. But it's for something that works at least a little.
Having to pay for that food -- try a $5 food item that makes me sick immediately? I just lost $5 that could have bought me two cans of soup that I know I can eat. That's four meals. I am poor. I'll stick with what I know, and that means progress on identifying trigger foods is a crawl at best.
Knowing that even if science could help, if it was a shiny new experimental drug, or off-label, I probably would never be able to lay my hands on it.
Knowing that it upsets the people who love me to see me in pain, and knowing that this isn't something they can get away from any more than I can.
Knowing that it's annoying and frustrating to other people that I can't do things or eat things that I used to be able to do or eat.
Knowing that they're gonna get it wrong sometimes even if they try really hard so I'm gonna be stuck spending a lot of resources having to tell them they messed up or I'm gonna have to eat whatever it is and just pray. And knowing that if this happens, it's probably my fault for not giving them enough information.
It's a tiny thing, but "OH MY GOD, ARE YOU SURE? NOT EVEN A LITTLE? THAT SUCKS!" Yes, I know. Please. Please stop. Please stop and go away please. I'm tired. I need you to go away now. Please go.
Being too tired and hopeless to help people plan around what's wrong with me so I can have nice things anyway.
Probably never eating at my favorite Chinese food place again because it has reliably hurt like hell no matter how carefully I choose what I eat.
I can point to where every kink in my colon is because I can feel basically everything that happens in there.
Farting is not much fun anymore. If I have gas bad enough to be amusing, I'm usually in a lot of pain. Kind of steals my flatulent thunder.
Realizing that by the standard Mankoski pain scale, the worst cramps put me at about a 7. (I could maybe function if it were just pain and not something that requires me to limit my activity so I can get to a bathroom.) Only for, like, 10 seconds at a time, every two or five minutes, for half an hour, though, (sometimes three times in a night but that's pretty rare) so when the doctor asks how the pain is, I just sort of wiggle my hand and make an ehhhh... noise because I am convinced that it's not that bad, and that beyond this level of pain is some SUPER-LEGIT level of pain that is just waiting for me to display my gross hubris before it pounces and makes me wish I was for honest and true actually dead. I think I hit an 8 once, but that was for two minutes tops and I didn't actually throw up so maybe it was only a seven. Maybe it's only ever a four and I am just a gigantic weenie.
Even having thoughts like the paragraph above. Even having to wonder whether my pain is worth respecting. Let alone worrying at least once a day if I am simply "reacting badly to a small amount of pain" and not "reacting well to serious pain." i.e. "How much of this am I making up because I'm a huge drama queen?"Getting so used to the little twinges at a 2 or 3 that I don't even think to mention them. They come and go all the time. It's no big deal.
Realizing that pain meds would probably only make things worse by constipating me. Then realizing that the worst pain is completely unpredictable and doesn't last long enough for painkillers to kick in, so it's moot anyway!
Reading advice like "If you suspect you might have an intestinal obstruction, see the doctor at once!" and laughing so I don't cry because all of those symptoms? Sound almost exactly like IBS! Even if I could afford it, I don't want my medical record full of false alarms, because god save me I may someday need to trade on my clean record to get pain meds for something really serious.
Feeling like I can't talk about it because it IS gross and embarrassing.
Feeling like I can't talk about it because I know people who have it way, way worse than I do so why am I even complaining?
If it was just the pain, just the pain at the exact same level and frequency I currently experience it -- hell, even if you made it worse and it happened twice as often -- I could take it. I wouldn't be happy, but I could take it if that's all it was.
It's not. It's everything else. The collateral damage. And it's knowing that it could get worse. A lot worse. And being keenly aware, since this has already made so many things so frustrating for me, of how much is still left to take.
When you sit there and think "I want to go home!" and what you really mean by that is "I want out of this body, like, right now!" there is something very, very wrong.
* No. Don't offer hlepful advice unless you're literally willing to buy the unicorn powder for me or come and cook magic happy butthole elf noodles or whatthefuckever for me.