Topic: External Stent

We are being told that my mom's stent is probably plugged again (2nd time in 5 months) and that she may have to go to an external stent.  The MD's seem to be fighting so hard to avoid this that I am curious why.

Can anyone tell me about their experiences with the external stent?  Are they hard to maintin?  Uncomfortable?  Need replacing as often?
Any information would be helpful in making this choice.

2 (edited by walkingthepath Sat, 14 Jan 2012 09:43:00)

Re: External Stent

If by external stent they mean internal/external, where the stent is a perforated tube in the duct with a tube that goes outside of the body, then I am surprised that that wasn't done before the internal stent.  I had two internal/external stents (both ducts) for a while and was so happy to have them internalized.  But I knew because the doc told me that they would get clogged and need to be cleaned occasionally.  That's what I thought was happening a few weeks ago, but it turned out that the tumor had grown up past the steel stents and was crushing the duct above the stent. So now I have another internal/external stent.  But enough about me.

The external part of the stent is a tube ending in a valve outside of the body.  If there is blockage in the duct, a "bili-bag" much like a urine bag is attached to it to take the overflow. 

The advantage to the tube is that the docs can insert a wire to manipulate the stent and can insert contrast dye to check to see how the duct is working, all without any sedation or pain, just a fluoroscope and a quick check and the doc has a full picture.

Disadvantages are many.  The tube hurts and may make it hard to take a full breath.  There is pain after the tube is put in that may be significant for a while - it certainly has been painful for me.  The tube is held down by stitches which can pull out.  It is difficult to take a shower because you need to waterproof the hole in your body and the dressing and tube coming out of it.  You will need to flush the line with saline on a regular schedule, and also change the dressing.  If a drain bag is needed, you need to incorporate the bag into your daily wearing apparel - usually the bag is warn hanging from the neck so that the drain point inside the bag is about nipple level or higher, so that the bag doesn't drain liquids from the intestines all the time.  You will need to empty the bag (if you have to have one) and keep everything clean.  The tube and stent will need to be replaced - how often depends on how often it gets clogged but every 8 weeks or so is probably a fair estimate.

Unfortunately, if your internal stent isn't working, the external tube is the only way to go.  I can only offer my experience with this and hope your experience is positive.  As always, please have your mom talk to her doctor about the effects of any procedure, get her to write her and your questions down before the visit, and go with her or have a friend go to have another set of ears to catch anything that mom might miss.

God bless and prayers for your mother,
Michael

Re: External Stent

Shar, Teddy had an external stent but that was 6 years ago and I know things have changed. His needed changing every 3 months. He never got an infection but it did get irritated around the site. We found a gel that really helped. I had to clean the site daily and he emptied the bag often. It hung below the waist and was anchored by a band to his upper leg. He actually golfed with it. Hard to say if it was uncomfortable as he had such a high pain tolerance and never complained. At the same time he had a kidney that was failing due to the CC tumor pressing on his ureter. SO, he ended up with the external drain and a tube in the back for the kidney. The tube in the back is the one he hated. Eventually that one was able to come out as they stented his ureter. Ah, the joys of of CC.  Best of luck on this one.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: External Stent

Hi Shar,
I've had external drains for a couple of years.  Mine are usually changed every 6-8 weeks.  I am given conscious sedation and antibiotics during the procedure.  I flush them daily with saline.   As far as clothing is concerned, I attach mine with a smaller binder clip to my waistband.  I can hide the bags inside my pants as long as they have an elastic waistband.  The stitches do hurt while they are healing and I don't feel very good for the first couple of days.  I had a knack for catching the tubing on door knobs and kitchen knobs which is very painful. I can't sleep on my stomach anymore.   The good news is, I haven't had cholangitis since the drains  and I'm forever grateful for that. 

Hope this helps.

Betsy

Re: External Stent

Betsy, I am so glad you adjusted to the dreaded drains but your description cracked me up although it was sadly probably the truth. I could just picture you bouncing from door knob to door knob. I am so happy you learned how to manuever again. To me the bottom line is we have to adjust to whatever is sent our way and you do a beautiful job of it!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: External Stent

Thank you so much for all your posts.  This is all so new and foreign to us.  I can honestly say that six months ago I had not heard of an external stent or bile duct cancer.  I keep thinking that I am learning so much more than I ever wanted to know.  Thanks again!

Re: External Stent

Lainey,
thanks for the compliment smile     

Betsy

Re: External Stent

Shar:

My husband Tom had 'external drain' tubes for most of his 4 year fight with CC.  After his original CC resectiion, he had a JP drain tube coming out of his lower belly as the liver had developed a bile leak.  And some of the bile had leaked into a cavity behind his liver so he had another tube coming out of his side.  At that point I had to do nothing with either of those tubes, except measure and record how much bile his body was putting into those drains.  (and of course, smell it for foul odor which would mean an infection)..  He had those two drains for 7 1/2 months.

Then we jump 18 months forward when he started turning jaundiced.  He had another tumor that involved the hepatic artery and his bilirubin level was over 24K (over 24 but it's measured in the thousands)  They tried to get an internal stent in at that time to relieve the pressure on the liver and to rid his body of the excess bile to lessen his bright yellow color.  His urine was also dark brown as his kidneys were doing their part to help rid the body of the excess bile.  They tried about 4 times to get an internal stent in using a different technique each time and were unsucessful, so the only route to go was an external drain.

I was onboard with that and so was he.  His interventional radiologist never gave up trying to get the sent internalized.  Each time a tube exchange was done, he looked for a path to get a stent inside and each time it was a no go.  Even Mayo clinic tried twice and they could not do it.

With Toms' eternal drain, I flushed it daily, cleaned the site with a good antiseptic cleaner, even using a q-tip to clean out the 'hole' where the tube entered his body, then flushing everthing with the antiseptic cleaner, even the tube.  I would then put a 4x4 gauze pad under the tube and another one (folded to size of course

9 (edited by mlepp0416 Sat, 14 Jan 2012 21:14:38)

Re: External Stent

Shar:

My husband Tom had 'external drain' tubes for most of his 4 year fight with CC.  After his original CC resection, he had a JP drain tube coming out of his lower belly as the liver had developed a bile leak.  And some of the bile had leaked into a cavity behind his liver so he had another tube coming out of his side.  At that point I had to do nothing with either of those tubes, except measure and record how much bile his body was putting into those drains.  (and of course, smell it for foul odor which would mean an infection)..  He had those two drains for 7 1/2 months.

Then we jump months forward when he started turning jaundiced.  He had another tumor that involved the hepatic artery and his bilirubin level was over 24K (over 24 but it's measured in the thousands)  They tried to get an internal stent in at that time to relieve the pressure on the liver and to rid his body of the excess bile to lessen his bright yellow color.  His urine was also dark brown as his kidneys were doing their part to help rid the body of the excess bile.  They tried about 4 times to get an internal stent in using a different technique each time and were unsucessful, so the only route to go was an external drain.

I was onboard with that and so was he.  His interventional radiologist never gave up trying to get the sent internalized.  Each time a tube exchange was done, he looked for a path to get a stent inside and each time it was a no go.  Even Mayo clinic tried twice and they could not do it.

With Toms' eternal drain, I flushed it daily, cleaned the site with a good antiseptic cleaner, even using a q-tip to clean out the 'hole' where the tube entered his body, then flushing everthing with the antiseptic cleaner, even the tube.  I would then put a 4x4 gauze pad under the tube and another one (folded to size of course) over the top of the tube and then cover the entire site with a TEGADERM FILM!  This is the best as far as bandages go.  In the two years that he had that drain tube, he could take showers without fear that his bandage would get wet.  I always used gloves when ever I touched his drain, or flushed it, or cleaned it.  It just became a part of my daily routine. 

External drains can also become clogged and then the CC patient can get a rather severe infection in the liver.  This happend to Tom about 4 times in two years.  They used to change out his tube ONLY after an infection.  I am a good talker and talked his interventional radiologist to talk to his PCP and discuss doing the tube exchanges MORE frequently, we started at every 8 weeks, infection resulted.  Moved to every 6 weeks, infection resulted.  Moved to every 4 weeks and NO MORE infections!  YEAH!  So each and every month until Tom passed on 11/20/2011 he had a tube exchange.  Never once during all the time that he lived with that tube did his skin break down at the site.  A little red at the site of the stitches when they were first put in.  Other than that, nothing.  His doc and the nurses were amazed and kept telling me that whatever I was doing to "Keep it up" and that when they saw Tom's name on the schedule they knew that when they took his bandage off, his skin was going to be an nice as a baby's butt!

There were time's when Tom complained about the tube.  He hated the first two - three days after a tube exchange cause the stitches hurt until the skin healed.  He hated having the bag but realized that in the big scheme of things it did help him to look normal, rather than a glow in the dark yellow.  He learned to pin it in place so that the tube could be pinned higher up on his shirt so the tube didn't show when we went in public.  Eventually we talked the doc into shortening the tube a bit. 

His doc that did the tube exchanges for Tom had done them so many times that he'd always tease that they were going to get the tube exchang down to less than 4 minutes.  It generally took him about 5 min from the time he inserted the wire until the new tube was in place.  And he also added more drain holes to the length of the tube that was inside the body.  This also helped to keep the tube from plugging up so quickly.  That is also why it is so important to flush the tube daily, to keep those holes open so that the bile comes out the tube into the bag, rather than to be leaking along the outside of the tube onto the bandage.  If this happens - call the doc right away as it means the tube is plugged!  You can try first flushing it 2x a day, but if it still leaks onto the bandage, INSIST on a tube exchange.

That too happened with Tom and is another indication that the external drain is plugged.  And bile is VERY caustic to the skin so it's important that the site be cleaned every day, and that bandage is clean and dry with minimal 'stuff' on the bandage.  The only day that I did not change the bandage was the day that the tube exchange was done.  But I hated doing it the next day cause the bandage they put on was so yucky w/blood, etc.

Tegadern film is very expensive.  We were lucky in the respect that Tom was a Veteran and got all of his medical supplies from the VA.  They sent 4x4 gauze pads, 10CC flushes, Tegaderm film, gloves, etc.  I had to buy Q tips and the antiseptic wash.  Band Aid brand about $4 - $5 a bottle.  At first I used the antiseptic that they give you when you get your ears pierced and that also worked well, but the bottles are so small that I switched to the Band Aid brand of antiseptic wash and that worked even better.  I bought 6 bottles once when Walgreens was clearancing it out!

I hope this info is helpful, feel free to ask me any questions about tubes/exchanges/ flushing/cleaning the site, etc.  I'm kinda like the resident expert on external tubes and bile bags.  Even when Tom was inpatient, he'd tell the nurses right out...."No one touches my drain except my wife" and all the nurses were so extremely interested they asked if they could watch (and learn) while I did it.  Many nurses had never even had a patient with a liver bile drain bag.

Go with God and hang in there!

Hugs,
Margaret

Re: External Stent

WOW! Margaret, you just brought back so many memories that I had forgotton about. I used to do all the same to Teddy's external tube. When I think back now I think, man, I did that??? Only thing is they had me clean the site with alcohol and yes a Q tip and then I would use a gel around the site. I remember folding the gauze and taping it!  I would take a large baggie and tape that over the the site so he could shower. I guess all those things begin to fade after a while. I also remember now that Teddy pinned the tube to his under shirt and once they did shorten the tube. Teddy always said I was his best Nurse but it was a job I would have given up gladly had he improved to a point I could be fired!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: External Stent

Help!
I need advice. I have the internal kind of drain with the holes, as well as an external drain with bag. It has been three months and my skin around the opening is sore and red. I also have pain inside if I have to move from laying to sitting. I feel like the drain is trying to come out. I have a cholangiogram on Monday. I wonder how bad it is if they remove the drain and then later it needs to be put back in? They seem like they prefer keeping them in forever. My drain tube has been "snagged" and pulled on several times throughout my various activities . What are the chances of getting it taken out and NOT getting another one?! Any advice would be helpful smile

Re: External Stent

Hi Laura, we need someone to invent an easier way to drain, don't we? My husband had external drains and had your same type of problem with them. I found out there is a Gel you can put around the wound site and that helps with the red and soreness. Sorry, I don't know what it was called but any Parmacist would know, it is over the counter. Perhaps seeing if the radiol/ONC can shorten the outside drain might help also. Teddy had 2 external drains and the whole CC thing started while out of town. On the flight back home, 2 months later, both drains blew out! Not painful at all and a Doctor was sitting across from us and pulled then totally out. I had an extra bag with me and I adhered it to the hole. So, I know they can come out and put new ones in. Perhaps they need to take a picture of how the tubes are situated and then will know what is going on. Best of luck.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: External Stent

Hi Laura:

I had a PTC for 5 months. The site around the catheter became VERY irritated, so much so that I was sent to a dermatologist. I have not had the drain for four months, and it has taken all this time to knock the rash down with topical meds! Next time, I will definitely try the gel at the site.

I assume that whether your drain gets removed or not depends on your bili levels and how your duct is draining. During the cholangiogram, they may push contrast into the biliary tree and watch how well it drains into the bowel.

The first time they put in the catheter, it can be painful. However, while in place it develops a track, so subsequent replacements are fast and relatively painless.  I suppose, if its removed for a while, having it replaced again later could result in some pain again. For me the pain is only during the procedure.

I hope this helps.

Mark

Re: External Stent

Laura...Margaret postings referring to drainage tubing issues are all over this site and might also be of help to you. 
http://www.cholangiocarcinoma.org/punbb … =227919096

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