Discussion Board Forums General Discussion question about external bag to drain bile

Viewing 12 posts - 16 through 27 (of 27 total)
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  • #61035
    janetinfl
    Member

    I took my husband to the emergency room last week. He ended up having a bleeding ucler and was really dehydrated. He was stablized and moved to a hospice unit in Jacksonville. The external drain has been cancled, and he is tired of everything. I am hoping he can get stablized with pain medication so that I can bring him home. Our son flew from North Carolina and really helped me, but he went home last night and said his good-byes. I am all alone this morning, and trying to keep control of myself.

    The doctors say he has days or weeks. It has happened all so fast. It has only been 9 months since diagnosis. Our 45th wedding anniversary is next month, June 17th. I am going to miss him more than life itself. This will most likely be my last post. I thank you all for this forum and all your help. Janet

    #61034
    betsy
    Participant

    I’ve had external drains for about 3 years now. I’ve been given different meds to help with the itching…..cholestyramine helps and I am also taking 75mg Lexapro which has really helped ease the itching. I haven’t had success with any over the counter meds or lotions but an oatmeal bath feels wonderful and helps temporarily with the itching. I think he will feel better with the drain. The risk of infection is there but in my case I had to have the drain.

    betsy

    #61033
    janetinfl
    Member

    The Mayo called again and changed the appointment for Friday. The past 2 days he just sleeps. Therefore he isn’t itching. Why is he sleeping so much. I go into the computer room, and he falls asleep in the middle of typing an email. This really has me concerned. Should I be? Is this normal when the b-rhythms are elevated.

    The only pills he has taken is the Doxepin and one Tramadol. Is this why he is sleeping so much.

    I can’t believe how much he has gone downhill in the past 2 weeks.

    #61032
    lainy
    Participant

    Janet, this is good news! Thanks for letting us know and hope all goes well.

    #61031
    pamela
    Participant

    Janet,

    I will be praying that your husband finds relief once the drain is in place. All the best to both of you.

    Love, -Pam

    #61030
    janetinfl
    Member

    The Mayo called this morning. He has an appointment to put in an external drain at 7:30am. He had an MRI last week, so I imagine they think it is possible. I don’t think he has any other choice at this point.

    Thank you for all your replies.

    #61029
    mlepp0416
    Participant

    Janet;

    My husband Tom had 2 external drains for 7 1/2 months after his surgery (resection). 18 months later when he started turning yellow, they put in another external drain to drain off the excess bile that was backing up in his system. The interventional radiologist will determine which bile duct would be the best to target. Tom had had the gravity feed drain bag. It required a flush and a bandage change every day and I had to clean the wound area. He did get a few infections, but they were always able to be cleared up fairly quickly with the right antibotics.

    Tom was lucky in the respect that although his bilirubin levels were VERY high, he never experienced any of the itching with it. The reason that we decided to go with the external drain is that they could not get a stent interlized because of the location of the tumor and without the drain, his bilirubin levels would continue to climb and eventually that would compromise his entire system.

    Tom had that tube for over 2 years until he passed away from kidney failure on 11/20/2011. I would again opt for the external drain as it allowed Tom to go out into public without having people stare at him because of his color.

    In order to Tom to avoide infections from the external drain tube he eventually had to go on a 4 week schedule for his drain tube exchanges.

    Hope this information is of some help.

    Hugs,
    Margaret

    #61028
    marions
    Moderator

    Janet…you might also want to take a look at some of these previous postings re: external drains:
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5480&p=2
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3892
    Hugs,
    Marion

    #61027
    pcl1029
    Member

    Hi, for itching
    please read the message from this link.
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=6515

    A good and experience GI specialist can put in stents under the ERCP procedure but it will be a challenge for the intrahepatic CCA type; I know Mayo Clinics likes to have MRCP done along with the MRI scan;if so it may give additional information to help finding the locations that are most needed to be stented.(ie:the locations where the bile ducts are most dilated in the liver) Of course they can also use the percutaneous method instead of ERCP to provide “external drain” for the bile to flow out of the body.
    It is more difficult for cirrhosis patient to completely recover from all those radiation procedure than just patient without it. But still it is worth it to have the stents done if possibility is allowed.

    God bless.

    #61026
    lainy
    Participant

    Janet, I have posted on this a few times and am concerned that you could not find it. Teddy had an external drain and had no problems except it had to be changed like every 6 weeks to 2 months. They give you a twilight sleep and you don’t feel a thing. Teddy was lucky as his drains never got infected and he had them for about 2 years. Before and after Whipple surgery. The itching can get so bad it is unbearable. We found a cream called Sarma (Walgreens and CVS) and it worked well and also cool showers and or ice bags helped too. People who have tried the Sarma also said it worked for them. Bottom line is if it gets really bad your husband will be using all his energy to fight the itching and he will be exhausted. Also with the drains there is no need for meds that will make him sleep. I am not sure the drain helps in any other way except to open the duct for bile drainage. Bile that is not draining can cause a heap of problems. By the way they inserted the drain from his side to the bile duct. Best of luck.

    #61025
    janetinfl
    Member

    I typed this……….

    I am under the impression they are certain they can bring down his b-rhythms for more therapy. But a drain would help with his itching.

    I meant to type the word Can’t. They aren’t certain they can bring down his b-rhythms. So is a drain worth it to relieve the itching?

    #6829
    janetinfl
    Member

    I have posted before about my husband who has intrahepatic bile duct cancer. He was diagnosed in Sept. 2011 with stage 4. Since then we have been going to the Mayo Clinic in Jacksonville. He was on a chemo trial, but was kicked out because his platelets went below a certain level twice. He has the regular gem/cis one time at X-mas time. Scans show no growth. Next he had chemo embolization that targeted a small tumor that was located on the border of the 2 lobes. Later he had radioembolization to attack the large tumor. MRI showed that the radioembolization killed about 1/3 of the big tumor. The chemoebolization did nothing to the small tumor.

    About 8 weeks after the radioembolization my husband started turning yellow. To make a long story short cancer has spread to the smaller lobe. He had another MRI.

    The oncologist read to us the report from the radiologist. Since his b-rhythems are so high no more chemo or radiation can be done. The only alternative is to put in an external drain. The problem is that so many bile ducts are now compromised. The question is what bile duct to target. We were also warned of infections these drains can cause.

    I am under the impression they are certain they can bring down his b-rhythms for more therapy. But a drain would help with his itching.

    My question to you all is it worth it to put in a drain with all the complications that can arise. The past few days the itching has really been bad. The doctor prescribed Doxepin and the short acting oxycotton. The didn’t really help. Yesterday I gave him the Doxepin in the morning and a few hours later 2 tramadol. That really put him to sleep, but he woke up without much scratching.

    At this point in time, my husband deoesn’t want the drain if it won’t reduce his liver enzymes enough for more treatment. My question is what medication is there out there to relieve the itching?

    Another question is the drain with all its side effects worth it to relieve the itching?

    I am waiting for a call from the Mayo for an appointment with the radiologist for him to explain the chances he has of putting in a exterior drain with bag that would work. His report sounded rather negative.

    Can anyone on this forum that has had experience with an external drain on a bile duct inside the liver? I searched for forum for this answer, but didn’t see anywhere from anyone about the location of the drain.

    The doctor explained that there are many bile ducts that drain into the main bile duct. The radiologist would have to make a good educated guess on what bile duct to target that would drain the most bile. He can’t put the drain in the main bile duct. I also must add that my husband had cerossis of the liver. The most drinking he did was in college. I can’t remember the last time I saw him have a beer.

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