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5:43pm December 20, 2013

philomenae:

Just wanted to say thank you all for following me and I’m sorry my posts are mostly reblogs as opposed to personal posts. I figure if I have nothing positive to say, don’t say anything.

Unfortunately, I require a surgical feeding tube called a j-tube and will be consulting a surgeon about such this Friday. My chronic illnesses have gotten relatively severe and my general cognition is a mess.

I wish I could say more, but I’m too exhausted and need rest.

Just know I appreciate all of you.

This may be too late, but you might want to talk to the surgeon about a GJ tube.  A GJ tube has a j-tube, but also a g-tube.  If you have gastroparesis, the g-tube isn’t used for feeding, it’s for draining your stomach, which can seriously help when stomach fluids begin to build up in dangerous or nauseating ways.  It’s not a total solution but it can really, really help if you need one, in a way that a j-tube alone doesn’t.  Basically the j-tube is the in port and the g-tube is the out port.  (People without gastroparesis may use GJ tubes differently, but most people with gastroparesis are going to be using the g-tube entirely for drainage purposes.  Draining can also help when you put too much fluid into the j-tube and it refluxes into your stomach.)

There are downsides too so it’s important to research those.

Doctors don’t always know these things because they don’t always have huge amounts of knowledge about gastroparesis.  Having a GJ tube has saved my life because draining the GJ tube greatly reduces the amount of time I aspirate my own stomach fluids when they build up too much, and it’s also greatly reduced my nausea and vomiting and bloating (the g-tube can also be used for draining gas in your stomach).

Um… also draining the g-tube is more complicated than just opening it and putting a cup under it.  Sometimes you have to sort of manhandle the tube in various ways, press on your stomach, and even sometimes swallow air (do at your own risk if you’re bloated/nauseated) to push the fluid out.  And sometimes your sitting position matters.  (All stuff the nurses didn’t tell me.)

Anyway, I was the one who told my doctors about GJ tubes and they agreed it was the best option for me.  I did have to fight to get one – prepare for that.  Even if you need one, sometimes doctors see a feeding tube as the end of the line and try to talk you out of it.  Just remember as much as a feeding tube can suck you can reverse the decision to get it any time, you can’t reverse your own death.  And if you want the feeding tube, stay strong and recruit others to fight for you if necessary.  If they’re trying to talk you out of getting it, it’s because they know you need it – if you didn’t need it, they wouldn’t talk you out of it, they’d just refuse it outright.  So… yeah.

Sorry for being scattered, I’m feeling fairly sick at the moment and trying to throw out the advice as fast as I can. I hope any of it might be helpful to another person with gastroparesis, you or someone else.  Always do research, because you’ll often know more than doctors if you have a rare condition like this… but you know that.  But get the advice of doctors too because they’ll know specific things you don’t.  But sometimes they also have biases.  In my case, I encountered many doctors with a strong bias against a feeding tube.  It was totally unexpected because they’d been consistently recommending a feeding tube for months and months, and then when I was finally going to die without one they stalled on me and did their level best to talk me into just dying and not getting one at all.  It was weird and unpleasant to encounter disability prejudice so.. directly and intensely, while too weak to fight too hard.  It was amazing the way they did a total 180, one minute they were wholeheartedly recommending a feeding tube and saying it was the only way I’d survive, the next minute they were telling me maybe it would be better if I didn’t survive, because feeding tubes are horrible.  Or something.

If they start pulling that sort of thing, and you still want and need the tube, post a request on the gastroparesis tag and I’ll do my best to get as many people on tumblr fighting for you as fought for me.  Can’t guarantee what will happen but will do everything I can, because I know what it’s like to be in that position and it’s hard to fight it alone.  Once a hospital knows the disability community is watching them, they’ll sometimes change their mind about talking you out of life-saving treatment.

I’m not trying to scare or alarm you.  Most likely, that won’t happen to you.  But if it does happen, and you want the help, I’ll do my best to have your back.

(When it happened to me it was a total shock because I was in there last… March or something, and they’d been recommending the feeding tube  and discussing it with me in depth since September.  Then when I needed it, they started coming into my hospital room every single day and trying to talk me out of getting it.  Which, again, is a sign they know you need it.  If they think you don’t need it, they’ll deny the tube, they won’t try to talk you out of it, they’ll just say sorry it’s not covered by insurance because you don’t need it, or something.  So in a weird way if they’re trying to talk you out of it it’s a good sign, it just means they need to be talked into stopping trying to obstruct you from getting it.  There were other issues with me, like developmental-disability prejudice.  But it can happen to anyone.  It happens to people with ALS who really want a respirator, it happens to lots of people who need life-saving treatment, and it’s very bizarre and disturbing when it does.)

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