as small as a world and as large as alone

3:29pm August 31, 2014

SERIOUS CONTENT WARNING: MEDICAL PROCEDURE INVOLVING CHANGING A FEEDING TUBE AT HOME INCLUDING LEAKING BILE AND BLOOD. PROCEED TO WATCH VIDEO AT YOUR OWN RISK.

I’m seriously impressed and seriously jealous.  I’ve been asking my doctors for over six months about the possibility of having a separate g-tube and j-tube, like this girl has.  What I have is called a GJ tube.  It’s a combination of a G and J tube that goes in the hole made for a G tube.  It’s complicated and it requires a doctor to change it.  It also means that the J tube is small and clogs easily, resulting in the need for more frequent changes.

As you can see if you actually watch the video, this girl has a G tube and a J tube both.  That’s a G tube in one hole going into her stomach, and a J tube in another hole going into her intestines.  The tubes are less complicated than a GJ tube.  Her doctors are more able to choose what gauge (size) the J tube can be, which is the major attraction for me. 

AND.

She can change the tubes.

By herself.

On her living room couch.

With no doctors.

And nothing but frigging hand sanitizer.

Which, for me, would mean so much less trauma and PTSD-like reactions than I get having to go into Interventional Radiology every time I need a frigging tube change.

She can just order a new tube in the mail and change it with her own hands.

That is so amazing to me.

Of course, there are good reasons I might never get a separate J tube.  One of them is that it requires digging a new stoma into my intestine.  That is only possible if there is a good site for one.  A doctor told me he would look for a site during a routine tube change, but he never got back to me on whether he found one, and did not write about it in his report on the tube change at the time.  And digging a new stoma always has a risk of infection and other complications, and I still haven’t decided whether those are risks I’m willing to take.

But it would be so cool to just have the two separate tubes.  There are so many things it makes easier.  Including if one tube fails, the other one doesn’t fail.  And you can change them one at a time.  And you don’t have to worry as much about them spinning and getting tangled.  And they don’t clog as easy.  So there’s a million upsides, but I don’t know if they outweigh the downsides or not.

Oh and speaking of blood, yesterday I was burping my g-tube and this big thick hunk of blood came out all at once.  I don’t know what that was about.  Probably a remnant from the tube change.  The stoma has been bleeding a bit today.  The doctor told me all that was normal, so I’m not worrying too much.  But the blood was pretty gross, it was unusually thick and large.  But then he did just stick a wire in there a couple days ago, near an area that I know I have an ongoing stomach bleed, so yeah.

I love how nonchalant tubies get about things like “oh and my stoma is leaking bile all over the place, because I just pulled a giant tube out of my intestine, no big deal, I’ll just throw some more gauze on it.”  Because that’s really how you get, until you see people around you reacting in horror and realize that this isn’t normally how people live their lives.

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