January 23, 2014 at 7:15 pm #77474lisasParticipantmarions wrote:Thanks so much, Lisa, for chiming in on this with the informative information.
Ha. Some would argue TMI! Seriously, though, that placement right where your bra band lays is a huge issue that I guarantee you people don’t think about.
Good luck with the procedure. You’ll be fine!January 23, 2014 at 7:09 pm #77473marionsModerator
Thanks so much, Lisa, for chiming in on this with the informative information.
MarionJanuary 23, 2014 at 6:58 pm #77472kvollandParticipant
Hi Denise –
Looks like LisaS did a great job explaining about the drains. My husband had his put in four days before his surgery to relieve some of the pressure from the bile build-up and get his liver working better. Then it was in for a month after surgery.
I would ask you doctor how much bile they expect it to drain and what to do if it drains more. We were told at most about a liter a day but Mark’s drained about 6-7 liters a day. He ended up in the hospital 2 days after it was placed for dehydration and a super low sodium. The doctor said it was a rare reaction to having the drain placed that caused the liver to overproduce and get rid of too much bile (of course it would happen to us). I had asked how much would drain but not what to do if it drained too much so ended up calling on-call doc really early in the morning.
Now we were told that he could shower normally with it in just no soaking in the tub. And to wash the area carefully with warm soapy water and rinse well. He did have to flush it daily (I did it) and we kept a record of how much drained every day so the doc could keep track of how much it drained. When his got to draining very little they pulled his. Definitely ask for the prefilled syringes. You should be able to get a prescription and get that filled at a pharmacy.
Like LisaS he only hurt for a day or two afterwards but that was hard to judge since he ended up in the hospital so soon afterwards and then had surgery.
Good Luck and keep us posted.
KrisVJanuary 23, 2014 at 6:32 pm #77471lisasParticipant
I have had PTC drains since October. They aren’t bad (especially since my bilirubin level without them was through the roof and I itched like mad) and my bilirubin is now 0.3 and the awful itching is long gone). They told me I’d be really sore for about 72 hours after putting them in and on a lot of pain Meds, but I didn’t find I needed a lot of pain meds. I was sore – mainly getting up and out of bed or a chair, but it was pretty manageable. I don’t know how long I would have taken off work just having them put in because I ended up back in the hospital for 9 days with another issue and having major abdominal surgery. When I get the tubes changed, I’m back at work (although slow), the next day.
The thing I hate the most is giving up long hot baths. You can’t submerge them in water. The waterproof bandages work pretty well in the shower (although I now stand with my back to the water as much as possible and always change to fresh, dry bandages after showering). I’ll hate not being able to swim this summer. I live in Texas, we have a pool and grandkids who love the pool. That part will suck.
I have two drains. One is almost centrally located on my torso and the other is on my right side and lower down. The one on the right makes it impossible to sleep on my right side. Fortunately, I am a left side sleeper. However, I generally try to sleep on my back to avoid rolling over on them and I found using a wedge shaped pillow as a base really helps. My mom found me one at Walmart in Dallas, but I realized they are hard to find in smaller cities (I went all over valdosta Georgia looking for one when we were at my inlaws house).
The drain in the middle of my torso is a trickier placement, primarily because the male dr and the male OR nurse probably didn’t give much thought to the fact that, while it’s placement may be optimal for drainage, it’s right where my bra band is. I’ve had to limit the types of bras I can wear (the cheapie target sports bra is most comfortable because the band can be sort of rolled up to fit just above the drain). That placement is the one thing I wish I’d known about and raised with my dr when I got them initially, but I had just been diagnosed and my brain wasn’t functioning on all 4 cylinders at the time and I had no idea what to expect.
When I went in for my latest tube replacement (about every 6-8 weeks, the tubes have up be changed), I mentioned how uncomfortable this was and the doctor doing that procedure moved it slightly lower (guess the nurses told him what I said to them in pre-op). He wasn’t my original surgeon. It has made a difference comfort wise.
They can and do leak if they get grit in them and since bile is gritty, it’s easy for it to happen. If you start running a fever, it’s important to call your dr ASAP. It can often mean the start of an infection, followed shortly by the drain leaking at the incision site. I’ve gone through 2 different rounds of antibiotics shortly before 2 of my tube changes (both times I sprung a leak). Bile also stains permanently, so I’ve learned to sleep in/wear dark colored t shirts instead of white.
They have to be flushed daily with a saline solution. I am able to get premixed syringes to flush with. Way better than mixing your own solution. They come individually wrapped. Easy to use and travel with. You’ll develop a system for flushing. I have my syringe unwrapped, uncapped and ready to go in one hand when I take the drain cap off. I also have a wad of toilet paper wrapped around the tube, just under the cap. I go through a lot of toilet paper because when you uncap the drain tube, bile/fluid often bubbles out faster than you can twist the syringe on, so be prepared to catch it before it spills on your clothes. Sometimes my husband will help me, but I can usually manage this on my own.
The tubes can be uncomfortable when they get jostled. I initially taped mind to my torso to help with that. I’m at a point now, I let them dangle most of the time. Probably not the sexiest look, but hey, whadda you gonna do (to quote tony soprano).
I personally like the gauze pads that come with a precut drain hole in the middle to bandage the tubes, although you won’t find them at most chain pharmacies.
I’ve been able to keep my tubes capped most of the time. When I first got them, I wore the external bags at night and I also wear them a night or two after getting the tubes changed. Ask about whether you can cap your tubes or not. If you do and you spring a leak, putting the bags back on can help reduce the leakage you have to deal with and make you feel better (last time, I had a lot of pressure and discomfort in my abdominal area before I put the bags on and actually called my oncologist, because I hadn’t felt that before – putting the bags on really helped relieve that). I always travel with a set of new bags, just in case of an emergency. Also, make sure they give you plenty of extra bags if you have to wear them. They are impossible to find at a pharmacy.
Hope this answers your questions. Finally, a question I know something about. If you have more, just shout.January 23, 2014 at 6:16 pm #77470marionsModerator
Denise…I hope that others will chime in on this. Betsy has much as experience with percutaneous drains, but she does not visit our site often. Just in case, I will enclose a link to her postings:
But I truly hope for someone to share more recent experiences with us.
MarionJanuary 23, 2014 at 5:32 pm #9172dbomsParticipant
Hi all, hope everyone had a great new years. I haven’t been posting much because I’ve been the hospital with bile drainage issues. I had my 6th ERCP to try to get stents farther up the ducts, however they cannot get them high enough. So next week I’m having percutaneous drains put in. Any experience and advice about this would be greatly appreciated. Love to all, Denise
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