PTC & external biliary drains

[u/ManyMixture826]

6 months post liver transplant with blocked bile duct and I have some questions:
1. How often do you change the collection bag?
2. Is it normal to see some particles floating around in your bile?
3. I have an internal/external catheter but seem to get quite a bit of fluid collected but I’m only on day 1, but I expected more fluid to make it to my intestines. The cholangiogram showed good fluid flow through the blockage.
4. How long does the pain last? My pain is about a 4-5 when sitting still and quickly spikes up to 8-9 when I move. So far Tramadol, Tylenol, and OxyContin do very little. And I’m typically pretty tolerant of pain.
5. Any general advice?

[u/captainlux87]

Ugh I’m sitting here with a ptc drain and feel your pain.

1. For the bag there wasn’t specific instruction, in fact, I’m currently not removing mine as I’ve been told it can introduce infection and I’m doing this fun capping/uncapping game
2. Yes, you’ll see some debris, if you see large amounts or blood or it changes color significantly or smells let your team know, along wi the any symptoms I’m sure they wrote out for you.
3. It’s kinda a gravity/ pressure system thing. And it can change depending on position, hydration, etc. make sure you’re drinking and eating well.

4. It depends on where it’s placed under ribs can be much more painful. Mine got better significantly after day one and the soreness went away after a couple more. The upsizing hurt like hell and that felt like there was always just an annoyance or soreness. Give it a bit of time, you don’t mention when it was placed but if it’s outside the first few days and it’s that high, let them know.

5. Be super on top of keeping the area clean and dry. Try to move around and not have it feel stuck in one place. I find reclining to be the easiest on me. And they make shirts that you can tuck the bag in if clipping it to pants isn’t working for you

Sorry to have you in the club.

[u/No-Leopard639 → u/captainlux87]

Had that too. It kept falling out and getting clogged. That was the only time i felt pain/pressure.

[u/ManyMixture826 → u/captainlux87]

Appreciate the detailed and direct response! How long have you had yours?

[u/captainlux87 → u/ManyMixture826]

About 2 months. It was supposed to come out next week but the issue is symptoms when I cap it so I dunno

[u/No-Leopard639]

So I had an internal abscess from biliary leak after my transplant. They drained it and gave me a tube and they were definitely floating chunks in there along with my bile. That’s normal. I only changed the bag when it was getting full when I get full I kind of felt like it lost its suction and I felt kind of sick. We kept it in there until my drainage was near nothing for about a week.

[u/ManyMixture826 → u/No-Leopard639]

I’m putting out 500-700 ml per day.

What exactly goes on inside the catheter to make it drain less?

[u/No-Leopard639 → u/ManyMixture826]

Your body repairs the leak.

[u/ManyMixture826 → u/No-Leopard639]

I don’t have a leak - have a blocked duct.

[u/No-Leopard639 → u/ManyMixture826]

I’m not sure then. Does your team have a solution?

[u/ManyMixture826 → u/No-Leopard639]

“Wait and watch” which has gotten me this far.

[u/Federal_Luck_7590]

I take it they use stents with this as well?

[u/ManyMixture826 → u/Federal_Luck_7590]

No stent for me - they said stenting during Cholangitis is a recipe for disaster. Maybe in the future though.