Topic: percutaneous drain

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

Re: percutaneous drain

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:
http://www.cholangiocarcinoma.org/punbb … er_id=4018

But I truly hope for someone to share more recent experiences with us.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

3 (edited by LisaS Fri, 24 Jan 2014 17:32:17)

Re: percutaneous drain

Hi, Denise

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.

Impatient patient.

Re: percutaneous drain

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.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: percutaneous drain

Thanks so much, Lisa, for chiming in on this with the informative information. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: percutaneous drain

marions wrote:

Thanks so much, Lisa, for chiming in on this with the informative information. 
Hugs,
Marion



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!

Impatient patient.

Re: percutaneous drain

Lisa...  maybe not now and hopefully not later will I need a drain, but I can guarantee you that I won't forget your advice.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

8 (edited by LadyLinden Sun, 26 Jan 2014 21:12:39)

Re: percutaneous drain

Dear Lisa, Thank you for the valuable information you provided.  I am on my 5th stent/ERCP inserted in October, 2013.  The gastroenterologist cleaned the metal stents in January, 2014.  He was able to clean one stent 100% but the other he could only clean 60%. I may be headed for drains.  Do you know if drains are the usual procedure when stents cannot be cleaned? If I am a candidate for drainage tubes, I will remember your great advice!  Thank you.  Pat

Re: percutaneous drain

Pat, I don't know much about the stents or what happens if they get blocked. We've talked a bit about stents in my case, but I think my oncologist wants to wait to see if it's possible that I can get my tubes out completely after my radiation. It's my understanding that changing the metal stints out is harder - more potential scarring, although they don't have to be changed as often as the plastic tubes.

Sorry I don't have more info.

Impatient patient.

Re: percutaneous drain

Pat...at times additional stents can be placed. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: percutaneous drain

Thanks for all the great advice.  Had them placed last week Thursday, went home the same day at 8pm  never got pain relief.  finally went back in on Tuesday for another work up and long story short saw that the tube had turned over on itself and was hitting up against my diaphragm.  I just knew I had pneumonia because I couldn't take a deep breath.  So back to IR to  fix it.  came home yesterday.  it is still sore the right drain, I hope it better pretty quick, I'd rather birth a baby than go through  this again.  UHHGG

Re: percutaneous drain

Ooh, sorry they got turned. I imagine that was really uncomfortable. Replacing them isn't as bad as getting them in the first place. Says the woman who had to go to the ER last night with 102.9 fever and a likely tube infection. Today, on cue, one started leaking. So, I'll be going for replacement set #4 tomorrow. I keep telling my very cute interventional radiologist we have to stop meeting like this!

Lisa

Impatient patient.

Re: percutaneous drain

Denise,
I will text Betsy and have her log in to give you some insight. She is wonderful!
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: percutaneous drain

Hi Denise,
I'm Betsy and have had drains for 5 years.  LisaS post was so well done.   I had a tube at the bra line too and bought demi-bras - not much support but very comfortable, pretty too.   I am not able to cap my drains.

- If your stitches become sore, heat a wet, clean washrag in the microwave and then hold it against your stitches.  It really helps speed up healing process and feels great. 

- For pain relief I take percoset or tramadol. 

- I use small binder clips to clip my bag to my pants.  Most times, I can hide my bag inside of my pants.  For showers, I have a cheapo plastic belt I wear that I clip my bag to. 

- It takes me a couple of days to feel better after a tube change.   Watch for signs of infection:  fever over 100, right shoulder pain, nausea, bad chills. last thing you want is another trip to the hospital, yuck!  I am taking a prophylactic dose of cipro.  have jammies and nice clean sheets on my bed waiting for me when i get home from tube change smile  oh, btw, i spend a fair amount of time in my pjs, so i have quite a few pairs....a girl has to have some fun, right!!

- I use 4x4 cotton squares to cover my stitches and paper tape to secure the squares.  I had problems finding tape that didn't bother me.....didn't like silk tape.  there are also wipes you can get a script for to use before you apply your bandage.  Its called "skin-prep" by smith &nephew.  many times my skin has gotten raw from tape so now i use this prep before using the tape.  miracle product!    Hope these tips help.

Re: percutaneous drain

I might mention that Betsy always looks like a million bucks!

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: percutaneous drain

Thanks for the complement LisaCraine!    big_smile  I'll get back to you tmrw re. next week.  Just got home from a tube change and need a nap.

betsy

Re: percutaneous drain

My husband has external drain too. I agree with what has been said by Lisa & Betsy.  But, I wanted to add that the sure prep pads are miraculous! I also highly recommend Micropore tape. My husband suffered with his skin breaking down for about 9 months due to the bile and tape. Both can really do a number on your skin. All it took was one caring hospice nurse to see how bad it looked and she made sure he had the sure prep pads. Unfortunately our hospice pharmacy doesn't have the Micropore tape, so I have to buy it. But, it is well worth it. No skin problems ever since.

Re: percutaneous drain

My husband Mark finished radiation in December and we had glowing results of the tumors very timely death!  But, over the past few days Mark has gotten more and more jaundiced.  Today we were told that they wan to put drains in because they can't get the bilirubin under control without it.  So, beig decisions.  The mass is neucrotic and therefore is dead but not getting much smaller in the process.  So, the bile ducts have begun closing up again and this time the meds are not working to stop it.  So, they are wanting to do interventional radiology and see if they can get through the blockages to put in a percutaneous drain.  It sounds like there is a tremendous life change with these drains in place.  He has always been an active man and worked a lot outside and in the shop, also with the cows and such.  What are the limits the doctors give or that some of you have encountered in just daily living activities.

Re: percutaneous drain

Hi, I went for my 7th ERCP 2/25/14.  It was found that I had another serious blood infection.  Access to the left metal stent could not be attained, so the following day the doctors placed a perc drain and an outside bag.  My pressure has been 85% relieved.  My team of doctors have explained everything so thoroughly.  I DID talk to the doctor about the placement of the tube and bra line.  I arrived home yesterday.  I have a life expectancy of 3 months.  It has been a fast life!!!  So glad I didn't hold back on living it to the best of my ability.  The new "NORMAL" is laying in a flat position, not able to do much for myself but have a caregiver who assists me.  I was sent home with an antibiotic infusion that starts today and must be administered every six hours.  This is to keep the infection under control. I think accepting the fact I have a terminal illness that I can't do anything about has helped put me in a peaceful place.  I am ready for my departure.

Re: percutaneous drain

Hi Pat, 

Sorry to hear things are not going well for you.  Glad that your doctors have been totally up front and explained everything to you as I have always felt that knowledge is power.  Your great attitude will also help you along the way.
Your understanding and acceptance will help to keep you in that peaceful place.   You are in my thoughts and prayers.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: percutaneous drain

hisprazr wrote:

.It sounds like there is a tremendous life change with these drains in place.  He has always been an active man and worked a lot outside and in the shop, also with the cows and such.  What are the limits the doctors give or that some of you have encountered in just daily living activities.


Sorry it's taken so long for me to answer. The last month has been a blur, as I had some infections crop up and was in the hospital and had my tubes changed twice.

As far as restrictions, other then not immersing them in water (swimming, bathing), none really. I don't recommend sleeping on your side because you can bust the stitching (learned that the hard way once). Otherwise, they don't normally interfere with my daily activities when they are capped off. I plan to ride my bike plenty when cycling season starts. They will probably keep me from paddle boarding, just for the risk of falling in the lake and dunking them. I think I could play tennis or golf okay with them. Bottom line, if he feels like he should or shouldn't do something because of them, check with his doctor.

Impatient patient.