3:50pm July 19, 2013

Spoonie friends want to take a read? (TMI warning o.o)

charmanderschamber:

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The following only applies if this is about what I think it is, of course, knowing that gastroparesis and other motility disorders are linked, including in me… IANAD…

So you’re talking about motility problems lower down than the stomach?

I’ve been hospitalized for impacted bowels many times before. And to the ER even more than that.

It’s extremely dangerous. It can kill you I’m many different ways. And it’s made me delirious many different times, in fact started my downward spiral into becoming delirious almost any time I’m sick enough or hospitalized.

Anyway.

Enemas are actually not that bad once you get used to them, even though they hurt a lot sometimes. When I get them, I do the enema in bed and then hold it in as long as I can, then rush to my bedside commode once I can’t.

Hospital sized enemas are daunting. But I can tell you, one time when I was so ill that I literally can’t remember my time in the hospital except tiny snatches of hallucination… it was a gigantic hospital enema that made me feel better. Like giant bag of gunk going through a hose into my ass.

It ain’t pretty, but it’s so much better than how sick you will get if you keep just going you’ll get better. I used to be terrified of enemas. But then they saved my life a bunch of times. And the relief afterwards is worth every bit of pain.

And the longer you wait the worse it gets. And by worse, I men once you get enema you might have giant turds ripping through your asshole at great speed.

So dealing with it now is better than that.

And giant turds ripping through I’d better than turds so big they can’t go through, and needing someone’s hand up your ass at best, and emergency, potentially dangerous surgery at worst.

And those things are better than getting extremely ill, sepsis, delirium, death, or near death.

You can’t fuck around with this. Just can’t.

Most people are okay with going several days without pooping. I can build a dangerous blockage in only three days without pooping. As in, delirious, non-stop vomiting and retching for days on end, poop blocking my urethra and needing to be catheterized, elevated white count that seems to terrify the doctors, and the sudden realization during a moment of lucidity that this can kill you (or wishing for death during another moment of  lucidity, because the pain is some of the worst I’ve ever felt).

That’s a composite description of many different experiences with blockages. I used to get blockages, whole or partial, all the time. It lessened when I went to a liquid diet and then a feeding tube.

But it used to be so bad doctors demanded a routine from me.

Two Miramax every day.

If I don’t poop that day, double the dose.

If I still don’t poop, enema.

If I still don’t poop, emergency room.

This was before my gastroparesis was even diagnosed, some of it probably before I even had true gastroparesis, but I have had lifelong intestinal motility problems. I was 15 at my first ER visit for this, and that was after years of partial blockages.

I know enemas are bad. But they’re better than the alternative. I’ve managed to barely avoid emergency surgery or death, but only just, and I’ve experienced everything else I just described on this post.

And I’m serious. Act now. Not later. If the enema doesn’t work, you need an x Ray probably at minimum to see what exactly is happening. It may not be poop blocking it. Your intestines could be twisted. You need to find out NOW. These things can go bad fast and be fatal.

And once this is solved, you need to work with the doctors to get a routine like mine was. To prevent as many of these as possible.

This is the sort of thing where I learned a long time ago I had to set aside my fear of enemas or risk death. I don’t know if you’re afraid of enemas or just find them inconvenient or painful, but when necessary they’re necessary.

Some other things.

One time with a partial blockage I managed to clear out by being prescribed five different meds at once in an emergency only situation.

If you drink Miralax you have to also drink tons of fluid because it works by pulling water into your intestines.

That is all. I really really really hope you pull through this with the minimum of problems. Because my pain has hit a nine from blockages before, and I’ve got chronic severe pain so I never use that number lightly. Like the kind if pain that can make a non depressed person suicidal. (Happened to both me and a friend during blockages, the suicidal thoughts vanished when we got pain control or treatment for the blockage.)

Also if you’ve got enough stuff in there it can take days of enemas and laxatives to get it out. I was one hospital room over from a guy whose laxatives and enemas all started working at once and it blew all over the wall. And I’ve shit the bed in the hospital under similar circumstances. Luckily the nurses understood. But I’ve had hospital stays where the entire length of the stay was taken up by trying to shit out all the stuff behind the blockage. 

But this is one situation where better out than in completely applies.

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