as small as a world and as large as alone

10:40pm June 8, 2013

More cyborg stuff.

These are pictures of the equipment I use with my Interstim device. The last photo is what it looks like when the programmer is turned on and connected to the device by putting a small plastic thing (shown in second photo) over the battery in my butt.

I’m about to get this moved to a more padded area of my butt, and possibly replaced altogether depending on what they find in there. But they told me I ought to be fiddling around more with the amount of power going to the wire, so I’ve been doing that. (It used to be at 1.0, now it’s at 2.2 (1.9 was while I was still adjusting), and suddenly I can pee again almost effortlessly. They told me the reason it was so hard to pee was because I haven’t been adjusting it enough, and they were completely right.)

So basically I got this because I have trouble peeing. You can also get it for urge incontinence, but my problem was more and more that I couldn’t pee on command, and so I was getting a lot of infections.

When I first went to a doctor about this, he gave the predictable response you get when you’re a DD/psych patient, which was “It’s impossible to forget how to urinate, urination isn’t voluntary, it’s all in your head, go home and forget about it and you’ll be able to urinate again.” That was when I was 19 and scared shitless of doctors, so I didn’t bother telling anyone again until I was in my late twenties and it had gotten really bad.

That time I had a real doctor. Who immediately sent me to a urologist. Who did a lot of testing. It was unpleasant. I’ve blocked out most memories of it but it involved a catheter and I hate catheters even though by then I’d had them a bunch of times due to trouble peeing. They’d cath me in the ER and send me home, or one memorable time sent me home with a Foley and a leg bag and expected me to know how to take care of it.

So the tests showed that all that time I’d had a spastic urethra. Or rather the muscles around the urethra were spastic and when they spasmed shut no amount of effort could make me pee.

So first they signed me up for biofeedback where I learned to loosen the muscles slightly. But it didn’t work most of the time. Although it came in handy later.

After that didn’t work they gave me this implant. It is most commonly used for people with urge incontinence. But programmed differently, it can be used for people who retain urine due to muscle spasticity. And that’s what it does for me.

There’s a battery in my butt, and then a wire threaded through my tailbone into the muscles that control urination. It sends some kind of electrical signals into the muscles that makes the muscle relax enough that I can control it in order to urinate.

That’s where the biofeedback came in handy. I learned voluntary control of that muscle (not voluntary, my ass) so that I could very consciously loosen it. But that only works when the Interstim device is also working enough to stop the spasms on its own. Without that, I can’t control the muscles well enough to pee.

I know this is a lot of talk about peeing. But I’d never heard of this thing when I went to the doctor with problems peeing. Now, there’s nobody in my state who implants these and I have to go to the next state over to get it done. So it’s not widely known. And it’s especially not widely known as used in spasticity involving urinary retention. Because seriously literally every video or material they showed me was 95% geared towards people with urge incontinence, not people with urinary retention. It was frustrating trying to find information about it. Because urge incontinence is extremely common.

I do have incontinence as well, but it is mostly because of difficulty getting to the toilet in time, it’s not the same as people who pee every time they hear running water.

Anyway if you retain urine and you have anyone telling you that it’s normal or all in your head or that urination isn’t voluntary therefore you could not possibly be having problems doing it… They’re almost certainly wrong and you need to see someone who knows what they’re doing.

As a DD person with a psych history, I hear more than my share of “you don’t know what you’re talking about” or “it’s all in your head”. But almost every time there is an actual objective test for whatever I have… I show up on the test as having it. Funny, that. I have more documentation of the reality of my conditions than most people do, yet get taken less seriously than most people.

ETA: I was also having a lot of trouble loosening my butt, and I guess the muscles are connected because it worked. That’s a vital part of reducing internal pressure, in order to make liquid flow downwards instead of upwards through my feeding tube, and changing the level of the Interstim made an enormous difference. I know that’s kind of a gross topic but it’s really really important with a feeding tube and most people aren’t even aware it makes a difference. If you’re capable of loosening your rectum a bit, it also seems to loosen your insides so they don’t push the water back up at you. Or if they do push it back up, it’s not as bad. Right now I’m at the not as bad point.

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