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8:23pm July 21, 2015

skythrown:

Hey, bendyweb (/spoonieweb?), I need your help!

A friend of mine is in the hospital with aspiration pneumonia and for various reasons they’re talking about giving her a PEG tube tomorrow. She really wants to talk to someone who’s lived with one before she makes a decision, multiple people if possible.

I know there are EDSers with tubes, so I offered to make a post looking for people who wouldn’t mind answering her questions, but anyone at all who is willing to talk to her tonight would be great.

I don’t know if I can talk to her tonight or not but:

1.  I have hypermobility syndrome, not sure if it’s EDS or not but EDS-ish symptoms beyond joint hypermobility run in my family on my mom’s side (prolapsed organs, skin fragility, aortic aneurysms, etc).  So I might or might not have it, but I definitely have some kind of hypermobility syndrome.

2.  I have gastroparesis, which is sometimes more common in people with hypermobility or EDS and which (for me) results in frequent aspiration pneumonia.

3.  I have had a GJ tube (a combination of a tube into the stomach – g-tube – and tube into the intestines – j-tube – in one tube that goes in at the tomsach level) for the last two or three years.

I can also say:

The GJ tube saved my life.

The J tube means that I get a tube into my intestines, bypassing my stomach altogether.  This means that food doesn’t have to go into my stomach, ever (I sometimes drink soup broth but I drain it out my G tube, do things like that at your own risk because if you don’t drain well you could aspirate, and the weirdest ingredients can clog up tubes).  Same with meds.  Which means I get to eat without losing the 70-odd pounds I lost during this whole ordeal (it’s bad to lose that much weight that fast no matter how heavy you are to begin with).  And also means that nothing has to go into my stomach which means less aspiration risk.

The G tube means that I can drain things out of my stomach.  This prevents aspiration pneumonia.  I used to aspirate – badly, not silent aspiration or minor aspiration, but “waking up barely able to breathe and coughing up bile for upwards of an hour and then getting pneumonia” aspiration – several times a week.  I now aspirate like that several times a year, and only sometimes get pneumonia from it.  But in order to do this, I have to drain always while I sleep (which is when I aspirate the most readily), which means a suction drainage bag on the tube at night and in the afternoon, and then I also “burp” the tube (get stomach contents out of it by hand into a cup or the toilet) at least a couple times a day if not more. 

For me it has been crucial to have both a G tube and a J tube. 

Complications:

When my tube was first placed, the anesthesia didn’t take, leading them to maybe not do as good a job as they would have if I wasn’t screaming and writhing the whole time.  This meant that when they placed it, a part got stuck in between my stomach and the surface, which was excruciatingly painful.  This resolved quickly when they moved the tube.

Tubes clog and pull out easily, especially J-tubes on the clogging.  I have both of those things happen a lot, although I’ve only once had it pull all the way out - other times it’s just pulled partway out, and most of those times I’ve been able to shove it back in, even though that’s not the recommended course of action (I just don’t always follow recommendations unless I can see there’s a reason that’s better than my reason for disobeying them).

When my GJ tube pulled out that one time, it created a stomach ulcer right on top of a blood vessel.  The J tube is rubbing on the ulcer so it hasn’t healed in years.  I will soon need to make the decision to get a separate J tube that goes directly to my intestines, and then a G tube that goes to my stomach, rather than the combined tube.  Separate J tubes have risks of their own, it’s real surgery unlike a G tube insertion, as in it’s done by a surgeon under general anesthetic and not just an interventional radiology team under heavy sedation, and there’s more infection risk I think.

I have an infection at the top edge of my stoma right now, with an abscess.  Before this, my skin was perfect, and I wasn’t doing anything different, so they think it’s a fluke, not something I did.  And I am on immune suppressants for myasthenia gravis so that probably helped the infection get a foothold.  I’m on antibiotics and awaiting a CT scan to see how deep the infection goes.  But it’s possible that the location is not even related to the stoma, and that I could have gotten it at any other slightly irritated point on my body.

Because of the infection, my presence on tumblr is unreliable.  But I will say that if there’s any reason that your stomach doesn’t work well, you should seriously consider a GJ tube or a G tube plus a J tube.  Because the J tube will let you not have to put things into your stomach at all if you can’t or don’t want to.  A  G tube alone won’t do that.  And the G tube is important for preventing aspiration pneumonia because you can drain stuff out of it, not because you put stuff into it.  If you put stuff into it, it’s no different from eating those things, and they’ll still get aspirated unless they come out again through the tube.

This is all assuming you’re aspirating stomach contents, rather than aspirating because of dysphagia or something.  If you’re aspirating what you swallow that’s a different issue where bypassing just your esophagus is often enough to prevent much aspiration (unless you also have reflux).  In which case you may only need the G tube.

Research every kind of tube out there so you can make an informed decision – don’t just trust that the doctors will pick the perfect tube for you.  I got a GJ tube partly because I asked for one specifically.  There were people who thought it wouldn’t work, because feeding tubes in general when taken over the entire population of people with feeding tubes don’t prevent aspiration and may even make it worse.  But in individual cases they totally can and do prevent aspiration.  I’m alive right now and not dead from repeated pneumonias or starvation (both of which simultaneously forced the issue of the feeding tube, because both were correlated with my gastroparesis becoming more severe) because I have a feeding tube.

I was told by doctors that once you have a feeding tube it’s really hard to take care of and you have no quality of life ever again.  This is not true.  Also, feeding tubes are totally reversible.  You can eat with one in, and you can take it out and the stoma will heal over eventually.  So even if you got one and didn’t like it, you could get rid of it.

They’re not without risks, but for me the benefits outweighed them by far.  And I am happier and more alive than ever, which the doctors who told me I should go home and die rather than risk having the kind of “quality of life” you have on a feeding tube… I doubt they’ll ever understand how much I love my tube.  And it’s much easier to take care of than people imagine.  In fact, it’s easier than eating and taking meds orally was.

And also, signal boosting for any other tubies who might be in more of a position to talk to someone tonight.