Topic: Update on John

Hi everyone,

Well after a week in hospital and 13 extra days of oral antibiotcs John is OK.
They cleaned his stints but either scar tissue or the original tumor is growing over the stints at the top where it gets very small.

Tuesday they are going to do an ERCP and try to dialate the biliary tubes and insert teeny plastic stints above his titanium stints.
If that doesn't work they said the only option would be to go from the outside the skin and insert external tubes to drain the tubes properly into a bag of some sort.

Has anyone had this done? Does anyone know the amount of infection you can get from this procedure? I'm going to check on line but I thought I would ask here first since most of us are almost experts of every type of treatment there is.

One good bit of news, the new chemo seems to have shrunk one of his mets on his liver after only 2 treatments. A small ray of hope that we are holding on to.

God bless and keep us all in his Hands,

Re: Update on John

My Mother had 2 external drainage bags.  They are fairly easy to take care of.  She just had to be careful not to do too much, so she did not pull on the tubes.  She had to have hers changed about every six weeks or so, and we had to flush them 2X daily with a sort of saline solution. 

Re: Update on John

Thanks for the info. How is your Mom doing?

Re: Update on John

My husband Joe just had an external catheter put in Friday.  It is not bad to deal with but he has some discomfort from the procedure.  It is amazing to see how much bile comes out of your system in one day.  No wonder he wa jaundiced with all that backing up in your system.  We hear that metal stents mayb e down the road.  We have some choices to make.  Tuesday they will go back in and try and get through the blockage and make it an internal catheter to his intestines.  We pray this will work.  I will pray for you also.  Mary Anne

Re: Update on John

Here is my take on drains after 3 months experience...
First couple of days were horrific, I know I should chose another word so I dont scare you, but I think I need to be truthful and give you all the information. I had major leakage which was so painful morphine did not cut the mustard-though it knocked me out for hours at a time which was some relief. I had CT, xrays, and other tests, but there was nothing wrong per se, just I was one of the lucky people whose body doesnt immediately close up around the drain. After a couple of days, things settled down-almost to normal.
I have had 3 major problems with the drains since they have been put it. I got an infection that required a somewhat lengthy hospital stay (5 days). I also need to be very careful because my drain shifts easily since my bile ducts are now shorter than average since the surgery. Apparently-there are not enough of us with short bile ducts so no company has made drains to fit us. The third problem is that I have developed an allergy to medical grade plastic which is such a shame as the drain is made of it! I have to have special patches cut to fit around the drain so it isnt touching my skin.
When I had the drain functioning as a drain (now it is just a path the doctors use to get into the bile duct without further surgery), the nurses cleaned it daily while in the hospital. I dont have to have it flushed now, just my bandage changed twice a week. You can have different lengths to the tubes so you can keep it close to your body under clothes, or longer so you can place it on the floor and out of the way when you sleep.

My drain leaks at the skin area under the bandages, be warned-this can really hurt if it is acidic enough, and it actually smells quite bad.
You really have to watch what you do. Too much of anything can cause problems (and it really is hit or miss, somedays I can ride my bike and  be fine other times it sends me to bed for a day)

I know I sound very negative, and I am somewhat. But there are days when everything is normal and wonderful. I would rather have the drain than not and be jaundiced-that is truly on of the worst symptoms of this disease. I am much happier and more comfortable with a drain than jaundiced. Hopefully, John will not suffer as I. According to the doctor and nurses-NOBODY is allergic to medical plastic (except me)! If not for my allergy and short bile ducts that cant "grip" the drain correctly, I think everything would be grand. So if John's bile ducts are nice and long, it shouldnt be that much of an issue. Just be prepared that the first couple of days are a nightmare, but they DO calm down.

Best of luck.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope