I am becoming an expert in observing my own bile drainage. At least through the external tube, and through some inference the internal stent as well. Last night I was hiccuping again in the middle of the night, which seems to happen when my liver is swollen with bile and it presses against my diaphragm (just a theory). Anyway, I woke up this morning with a sore side, feeling like the bile had been backing up inside me. It hadn't drained into the bag all night (for 11 hours), so I was nervous about my morning saline flush. Twice a day I try to inject 10mL of saline into my bile ducts through a 3-way valve at the external drain site.
I managed to get about 6mL in, and then it started hurting a lot, much more than usual. As in unbearable pain for 5 minutes - because the bile ducts got over dilated. Even 1mL less might have been much more tolerable. I need to be so careful, and this is why I am very hesitant about letting anyone else do that flush. So we were all concerned this morning and thinking of calling into the hospital, but I tired another flush 15 minutes later, and that time all 10mL injected smoothly, and now it is flowing again out into the bag.
The contents of the bile itself , lately seem to range from a clear tea coloured fluid, to something more akin to porridge. Back in BC, before I started chemo, it was only ever clear and dark. The solids coming out are mostly dead cells, but also a little congealed bile too. And it really varies. For 5 minutes it might be clear, and then 5 minutes of junk, and then 5 minutes of bubbles, and then back to clear again. I have no idea what the dead cells are though. It could be because of infections I have had and/or do have, or they could be dead while cells that have been fighting the tumour, or white cells fighting the infection, or they could be chunks of the tumour itself (best case). But a lot of solids have come out over the last month, much more that could be the tumour, or else I wouldn't have a tumour left. So who knows.
Today, as it happens I am going in to see the doctor who admitted me the last time I got infected, just as a follow-up appointment, so I will mention all this. It is interesting, but no doctor really seems to specialize in bile, and there isn't much to be said for looking at the discharge under a microscope because it would just be dead cell walls and it wouldn't be possible to say what those cells used to be. Otherwise, I'd be getting a microscope myself and trying to see.
Now, maybe I have a live culture growing still in my bile. So, just a few days we took a sample of the bile drainage to try to grow a culture from it, so we'll see what becomes of that, although since I am taking antibiotics again (cipro), it might dead and not prove anything.
All in all, this whole external bile drainage seems like a huge hassle to me, and along with the PICC line, having two tubes sticking out of me all the time is just annoying. But... necessary for now. It sounds like radiation will cause swelling and swelling in my case could mean more blockage of the bile ducts, so I will probably have to live with this for at least another 7 weeks.
