2:52pm June 13, 2015

So I finally got an endoscopy.

They wanted to do plasmaphoresis, but without knowing the extent of my stomach bleed, they couldn’t. So they finally decided that (now that the adrenal insufficiency and myasthenia gravis have been properly diagnosed) it was safe for me to be put under for an endoscopy, they got a good look at what’s going on in my stomach.

Their assessment pretty much agreed with what I thought was happening: The first time the tube had pulled out, it created an ulcer, with a visible blood vessel opening into it that’s been creating all the blood clots. Then the ulcer never healed because the j-tube was constantly rubbing on it, so I was getting blood clots or liquid blood on a daily basis, but not enough to be worrisome. It could be a problem if they do plasmaphoresis, though.

So they clamped it off, and they’re recommending that I talk to my doctor (yet again, it’s not like I never brought this up ages ago) about having a j-tube surgically implanted, separately from my g-tube. I like the idea of it being over and done with. I’m not so fond of the idea of going through the healing process of creating another stoma, more infection risk, pain, etc. Especially given that apparently j-tubes move more due to peristalsis. Plus the risk of anesthesia combined with bronchiectasis.

All the same, I’m glad to finally have this verified. Last time I talked to my tube-changing doctor about this he accused me of not knowing the difference between blood and bile, laughed at me when I took offense to this, and ignored me when I pointed out that bile doesn’t clot (in fact ignored everything I said from there on out, acted like I wasn’t saying a word – and then tried to interfere with the timing of my tube changes again, because he likes to do everything he can to avoid changing my tube, even if the things he proposes make frequent tube changes more likely).

Anyway now I have yet more concrete proof of things I’ve been saying for years. I’m not even surprised anymore.