valjee

Hi Betsy,
I’ve been catching up with your posts as well – I thought I had problems? Oh dear, mine are as but a blip in comparison! I’ve felt ill enough over just 10 weeks with the external drain, let alone 10 months – I think you’re the hero! Think it’s fair to say I’ve been pretty bad tempered!

A three hour MRI sounds ghastly – the level of noise gives you a headache after 40 minutes – that’ll have been some headache. I seem to recall the liver MRI requiring a lot of breath holding – that won’t have helped any.
I hope you’re feeling a little better now. It is all very tiring.
Today I had my extra special scrub & hair wash in the shower plus change the dressings over the drain, then had to take my Mum to the doctor’s surgery, I waited there about an hour (sitting in the car), we got home, I got a quick lunch & that was pretty much it, there was no energy left to do the other things I was planning on. And I am GOOD in comparison to even three weeks ago. I sympathise!

Eddie Izzard is very funny indeed & a very interesting man. Last year (I think!) he ran 43 marathons in 51 days! I believe he’s done quite a lot of ‘serious’ acting as well as being a stand-up comedian.

Best wishes, Val

Hi All!
Maybe the Coke/bile cocktail is a peculiarly British invention! We have a national reputation for stoicism!

I was threatened with this back in the very early days of the illness after the very first drain. The hepatologists seem very keen on this option!

The logic as I understand it is that we need bile to aid the digestion of food, mainly to ‘process’ the fat soluble vitamins & minerals.
Apparently we produce around one to one and a half litres of bile a day. If the bile duct is blocked & a drain is inserted the bile will take the easiest route, which is usually via the drain & outwards into a bag. If the output is all or mostly into the drain bag then you will quickly begin to become deficent in said vitamins etc. so the body needs supplementation in order to minimise this.
If the loss into the bag is less than the total bile production & the jaundice symptoms are improving then the system is absorbing a percentage of the bile.
When the drain is subsequently ‘internalised’ the bile is all taken back into the system so no need for supplementation!
Here, the bag is removed from the drain tubing & the tube is ‘capped’ so the blockage in the duct is bypassed with the internal part of the drain acting as a stent but external access to the bile ducts is maintained for cholangiograms etc.
Hence, the drain is working internally but still has external access by way of about 4inches of tube with a cap.

That’s how it’s all been explained to me so I hope that helps!

Lainey, so good to hear from you!

I don’t think Coca-Cola will be taking up this flavour any time soon! Lets say it’s best described as ‘interesting’.
The bile has a strong ‘musty’ flavour & coke seems to be the only thing that will disguise it sufficiently! I tried several other things (not being a fan of Coke, or fizzy drinks in general), blackcurrant Vimto, dandelion & burdock etc etc but it was frankly much worse!

I was told to take 100ml bile to 200ml Coke three times a day, but this dilution is not really enough! I’m afraid I was only compliant twice a day! I just couldn’t bear to do it more than that!
It’s best (for future reference!) to measure out the Coke, let it go flat, then add the bile. If you add the coke to the bile the result is inches of fluorescent yellow foam which does not settle & you have to remove the foam with a spoon…… rather offputting!
My strategy was to do the mix, stand in the garden, in the breeze, gaze at the distant hills & down it as quickly as possible!

Much as I hate to admit the docs seem to be right on this, I did feel much worse & my digestion was significantly worse if I didn’t comply! And it makes poo brown again!

It’s also very interesting (I don’t get out much) how much the consistency of the bile changes day to day & even hour to hour. There are ‘bits’, greasy blobs, I even had some tiny stones come through the drain, I believe the Rad man told me this was normal, but as I was under the influence of Midazolam I can’t be sure if this conversation did take place or I dreamt it!

However, it does mean that there are times when the bile is just not drinkable.
The ‘greenish’ days were the worst.
Another good reason to take the cocktail when in the garden – it really doesn’t do to spit a large mouthful across the kitchen or living room! Quite acceptable on the lawn!

Hi Andrea, I’m being treated at Derriford Hospital in Plymouth. There is a team of Hepato-biliary-pancreatic surgeons & an excellent hepatology department. One of the Hepatologists (it may be both -I only know the history of one) trained at Kings in London & was sent to the Devon outpost so that there was a good department available for the south-west of England.
It seems likely (in the absence of any evidence of recurrence of a tumour) that my current problems are caused by scar tissue blocking the bile duct & hence the liver, resulting from the previous resection.
The rad man has told me I’m not suitable for a metal stent as they do block over time & the plastic tubes (such as I currently have) can be accessed & changed under sedation, usually without further surgical intervention.

I’m sorry to hear that your Dad’s stent is a problem. I do hope he continues to do well, even with the high bilirubin & the drain. It seems to me that we are often able to continue functioning quite well despite high bilirubin levels.

I wonder if your friend’s dad was having the bile via iv as a more palatable alternative to the oral dose? I can only imagine that the docs see the oral route as needing less medical intervention for those of us stoic / daft enough to comply!

Marion, I hope all this info helps! I’m more than sure you know virtually all of it so please excuse my ‘teaching granny to suck eggs’ explanation! Thank you for your other advice. I will endeavor to check in on here a little more often!

Very best wishes, Val