Posted in Developmental disability, Developmental disability service system, disability rights, HCBS, medical, Self-advocacy

Best hashtag ever: #GetYourBellyOut

#GetYourBellyOut is the best hashtag ever,

I’d better backtrack.

I had an ISA meeting.  That’s Individual Support Agreement.  At the last second, they brought a Surprise Administrator.  That is what I am calling the lady who showed up at the door to the meeting even though I’d been told that the only people present would be Laura (my DPA and soon to be adoptive mother) and my two case managers.  Surprise Administrator (SA for short) was someone who works in the Howard Center administration.  Surprise because they didn’t tell me she’d be at my ISA meeting until she was at m

The ISA is Vermont’s version of a person-centered plan.  It, of course, just like in other states, does not have to be either a plan or person-centered to qualify as a person-centered plan.  The meeting was certainly not very person-centered.  It degenerated into a shouting match mostly.  And a lot of it was the Surprise Administrator telling me that I was off-topic.  At my own ISA meeting.  When attempting to explain my ISA goals.  Which were “off-topic” because they didn’t like

So it was good that there was a moment of comic relief in all that because otherwise it was just a shitshow that went nowhere productive.

This moment of comic relief came at an unexpected time.

I had defined my first goal as survival.

I meant it.

I actually had specific, concrete actions I wanted taken in order to get to that goal, but the Surprise Administrator was busy telling us that this was impossible.

So at some point an exchange very close to the following took place between Laura and the Surprise Administrator:

Surprise Administrator: Survival isn’t a goal.
Laura: Yeah it is!
Surprise Administrator: It’s a vague goal.
Laura: What’s vague about it? If her heart keeps beating…
Surprise Administrator: Yeah but some people define survival differently than others, like some people define it as being hooked to all kinds of tubes and vents and stuff.
Me: (silently but firmly pull shirt up to show two feeding tubes and an ostomy bag)
Surprise Administrator: OH MY GOD I DON’T NEED TO SEE THAT PUT YOUR SHIRT BACK ON RIGHT NOW!

After the amount of sheer bullshit that went on in that meeting, I can’t even try to make myself feel bad about the amount of giddy, giggly, juvenile pleasure I got out of that incident.  Especially given how sleep-deprived I was at the time.

So later on I discovered the best Twitter hashtag ever: #GetYourBellyOut.

It’s the complete opposite of the Surprise Administrator’s hashtag, which I imagine would be #PutYourShirtOnMel.

The idea is people with ostomy bags are supposed to pull up our shirts, take selfies, and post the pics on Twitter under the hashtag #GetYourBellyOut.

It was started by a guy with a colostomy.  The point is to reduce shame and stigma around colostomies, ostomy bags, stomas in general, etc.  It’s mostly about colostomies but can apply to anyone with similar things.  My ostomy bag goes over a healing jejunostomy stoma after the tube was removed, and I’ll continue to need an ostomy bag to catch the bile until it heals.  Which could be months.

So this is the picture I posted to #GetYourBellyOut:                                               

#GetYourBellyOut

Which is basically, in the above picture, roughly the same sight the “PUT YOUR SHIRT BACK ON” comment was inspired by.

I’m just… highly amused there’s a hashtag for exactly what I did spontaneously out of frustration.

Anyway here’s a Get Your Belly Out website for Crohn’s and Ulcerative Colitis.  I don’t have either of those things, but I love their website picture, which is a bunch of bare bellies with stomas and ostomy bags! 

STOMA BELLIES!

I’m a huge fan of anything that makes people realize that bags, tubes, holes in weird places on the human body, and the like are a normal part of life for a lot of people. And not a cause for excessive bellyaching (oh come on, I had to say it) about having to see it…

Posted in joy, medical

Meet Linden, my pet feeding tube ^_^

So um.  Sie doesn’t have a name (well sie does by the end of this post, I decided to name hir), and I’m not sure sie’s gonna have a name.  I haven’t named tubes since Enid — long story.

But I swear with the way they move, these little MIC-KEY buttons can look like they’re alive.

So meet my tube. Sie’s a 14 French MIC-KEY button jejunostomy tube, 3.5 cm stoma length.  I think sie wants to say hi here:

I think sie’s adorable.

And yes, sie moves.  Mostly peristalsis, the natural movement of the intestines, but it makes it look like sie has a little head that peeks around.  Most of the time when sie’s in hir dressing sie moves a little less, which is good (you don’t want a J-tube spinning, sie has a long tail inside of me).

Sie’s modular.  Which means that the part you can see is just the part that attachments can clip onto.  There are different extension kits for different types of syringes and feeding attachments and situations, and all of them are pretty cheaply replaced.  Which means if one of your extension kits breaks, you don’t have to replace the entire tube inside you.  You just replace the external extension.  Usually when I’ve had MIC-KEY button J-tubes they have needed internal replacing only every 6 months or less, and in my case we were usually just being cautious and could’ve gone longer.  For some people they last years.

Because there’s not a big giant dangling thing coming out of you, low-profile tubes like MIC-KEY buttons are a lot safer.  They don’t catch on things and yank out very often.  They don’t need to be taped down to prevent movement.  And the ones that do need to be taped down, taping doesn’t really prevent all movement, so they move more and that can put wear and tear on your stoma.  They’re also really good for young children because children are less likely to see a giant dangling thing and play with it and yank it out by accident.

Here are some of my tube’s extensions:

An ENfit syringe putting coffee into a MIC-KEY button J-tube.
An ENfit syringe putting coffee into a MIC-KEY button J-tube.

This one goes to an ENfit connector.  ENfit connectors were designed for everything from tube feeding attachments to syringes, to make it so that it’s impossible to confuse a feeding tube with an IV, a mistake that can be fatal.  So I like the idea of ENfit, although it was messed up pretty badly when they tried to make it universal for all existing feeding tubes and it wasn’t, and neither was their alternate solution.

A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector to one side of the connector.

A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector, and a feeding/medication syringe attached to the other side.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector, and a feeding/medication syringe attached to the other side.

This one goes to an ENfit connector but allows two connections.  This means you could have one part connected to your feeding pump, and at the exact same time be putting meds in the other part with a syringe, without having to unplug anything.

The cath tip syringe attachment for the MIC-KEY button J-tube.
The cath tip syringe attachment for the MIC-KEY button J-tube.

This one allows a normal 60 mL cath-tip syringe to put things into your tube.

Photo on 8-19-18 at 10.03 PM
A two-port tube extension, one for a cath tip one for smaller medicaion syringes, for a MIC-KEY button J-tube. There’s a 20 mL medication syringe attached to the smaller port, with hydrocortisone in it.

This one allows two sizes of syringe — cath-tip and a smaller kind that are often used for medications.

And there are others in various shapes and sizes, those are just the four I use the most often.

Here is a video showing how easy it is to put in the extensions.

My old tube was not modular.  It was a 12-French MIC* J-tube, and it is one of my least favorite tubes.  But it is the only one they will implant surgically, then you have to wait six weeks minimum before you can switch to the tube you want.

A picture of my old feeding tube (the one that finally got swapped out to a decent tube on my birthday), which was not low-profile or modular or just about anything else useful other than just being a J-tube. My skin looks horrible in this photor for reasons, it's nowhere near that bad now.
A picture of my old feeding tube (the one that finally got swapped out to a decent tube on my birthday), which was not low-profile or modular or just about anything else useful other than just being a J-tube. My skin looks horrible in this photor for reasons, it’s nowhere near that bad now.

As you can see in the photo above, the tube is all one piece.  If one part breaks or wears out or stretches beyond usability or gets clogged, you have to replace the entire thing. It’s also a constant safety hazard because no matter how well you tape it down (and taping it down creates its own safety hazards that are different) it’s gonna still be able to move and get caugh on things.

So my new tube… maybe I should give hir a name, I’m just not sure what name to give hir.  I guess I’ll call hir Linden for now, and see where it goes.  I’m just tired of not having a name.  So Linden, Lindy for short.

So here are the official photos of the old MIC tube i had, and the new MIC-KEY tube.  It’s night and day, even though they serve the same function.  The following is a Halyard 12 French MIC* Jejunal feeding tube.  And really sucks as feeding tubes go.

This is the tube that gets surgically implanted by default. It's not a very good tube, it's flimsy, it's not modular, and I was infinitely grateful to be able to get it replaced on my birthday this year. I've had long experience with this kind of tube and most of it bad. It's a Halyard MIC J-tube, 12 French. Most of what's in the picture goes inside you so you don't see it, you just see the floppy part hanging out the top.
This is the tube that gets surgically implanted by default. It’s not a very good tube, it’s flimsy, it’s not modular, and I was infinitely grateful to be able to get it replaced on my birthday this year. I’ve had long experience with this kind of tube and most of it bad. It’s a Halyard MIC J-tube, 12 French. Most of what’s in the picture goes inside you so you don’t see it, you just see the floppy part hanging out the top.

The following, on the other hand, is the kind of tube Linden is, called a low-profile feeding tube or a MIC-KEY button.  This kind of tube is modular and generally wonderful.  Again, the long tail you see is mostly inside of me.  The tail is part of what makes J-tubes (intestinal feeding tubes) different from G-tubes (stomach feeding tubes).

Screen Shot 2018-08-28 at 10.30.20 PM
A Halyard MIC-KEY button jejunal tube shown as the tube part on the right (most of that tail is inside of you so you only see the part above the balloon generally) and then some tube extensions (which help you put things into the tube) and otherequipment on the left. A MIC-KEY button is modular, so the part that is in your body is an entirely separate piece from the part you use to put things into your body. The internal part takes a procedure to replace (you could do it at home but it’s not recommended), but it rarely needs replacing. When the external parts wear out, you can replace them quickly and cheaply without requiring any procedures or even contact with medical people. The lack of dangling parts contributes to how long-lived these tubes tend to be.

So meet Linden again:

A MIC-KEY button J-tube on a large somewhat scarred-up belly with ostomy bag behind it.
Say hi to Linden again!

Linden with hir makeshift paper towel dressing.
Linden with hir makeshift paper towel dressing.

And I hope you find hir as cute as I do, even though a lot of people would find it weird to call a feeding tube cute.  I kind of wish I could give hir decorations, but there’s no way that would either be safe or stay put, so no point.  But I can name hir Linden and show people the way sie moves.  ^_^