An update on ongoing troubles….
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Glad you like the strap line, Val. I saw it one day & thought; “That’s it!! That’s exactly how I’m feeling!!” – so I adopted it
Betsy, I LOVE Eddie Izzard. I’m so glad you’ve found him.
Jx
Hi Linda,
Glad you enjoyed it all. Probably more than I did……. I know sometimes my sense of humour is a little OTT for some!Moving along, I will ask who came up with the bile drinking idea when I go for my next outpatients appointment – I bet the docs will pretend they have no idea!
I hope to cheer you up some more soon! Val x
Val,
I absolutely was laughing out loud at your posts. I LOVE your sense of humor. Especially with this CC that is the only way to handle it. Thank you for coming back to the board as we can always, always use more sense of humor to lighten things up.
AND drinking the bile sounds VERY bizarre. I wonder how they “discovered” that this could be an option? My father’s family was from England (my Dad being the first one born in the US), and we enjoyed Monty Python and Benny Hill quite often.
Take care and hope your future days are less busy!
Linda
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 Val,
I’ve been reading your recent posts and I have to say kudos to you for drinking that bile! Oh my gosh – every time I go to empty my drains, I imagine having to drink it mixed with soda…..so gross. I don’t know how you did it but you are my hero
I’m sorry to hear you are dealing with bile duct issues. They can be so trying and tiring. I wish my stent could be internalized but that’s not an option for me because I have a leak as well as scar tissue. Still waiting on the results of my 3 hour MRI. After everything I’ve been through, I thought, “How hard could an MRI be?” Silly me. Well, it was pretty intense and totally kicked my butt. I couldn’t even get out of bed the next day. I had a terrible headache. I think the fasting for 4 hours before the test was what caused me to feel so lousy.My son just showed me a Star Wars clip on Youtube by Edward Izzard. I thought he was very funny. I had never heard of him before. Are you a fan?
Betsy
Hi Marion,
Monty Python is exactly my sort of humour – I’m flattered if my rendition even makes you think of those sketches! Fortunately we have quite a lot of lawned area!Hi Lainey, thank you!
It’s only my attitude keeps me going at times I think. As an aside to that, in March I started a course of meditation classes as the stress was obviously not going to stop I had to find another way of getting through it all, I found this incredibly helpful & although I haven’t done much recently as I haven’t been able to sit properly my blood pressure is still significantly lower than previously.Hi Bob, yes I believe the stent is draining internally, I certainly don’t look as yellow or ‘glowy’ as last week, will have to see what the LFT’s say on Friday.
Yes, I think the idea is to stretch out the blockage by dilation, although having read some of the entries from Betsy & others I’m now a little concerned knowing that this can tear the bile duct. I guess scar tissue is often more stiff than normal tissue on the outside, I suppose this is the case inside as well.Thanks Julia! I love your new ‘strap line’!
Blimey, Val – when we spoke the other day & you told me you had to do unpleasant things with the bile, I completely misunderstood the situation … It never occurred to me you had to DRINK the stuff!!
My admiration for you (which was high before) has just tripled!! xx
Val…..this is British Humor at its best in fact, Monte Python series comes to mind? Either way dear Val, Midazolam or not, I have yet to see a more accurate description of oral bile ingestion demonstrating the benefits of dark colored stool. This leads us the spitting problem, as I could foresee those people lacking adequate greenery to be at a disadvantage.
Best wishes,
MarionHi Valjee,
Do I understand correctly that the stent is currently draining internally? And is there a plan to eventually stretch the area of blockage so the stent can be removed?Praying for a good outcome..God Bless!
bob
Val, thanks for the explanation and I have to say that I just cannot wrap my head around this. You must be one of the best patients ever!! Talk about courage? You are the best and I know your wonderful attitude will serve you well.
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
Hi Val,
My Dad had high bilirubin once 600, and he didn’t have any other signs apart from the Jaundice, did the doctors ever mention why? My dads bilirubin is 260 and he still only has the jaundice. The doctors say he is amazing. Unfortunately there is nothing else they can do for my Dad as they can’t restent as the tumor as blocked the stent blocking all bile flow. He has an external drain but is only getting 200ml a day. My friends Dad had gallbladder problems and they fed his bile back in to him via a IV. If you don’t mind me asking which hospital have you been treated at?
Best wishes
AndreaHi Val….You have been very busy for the last few month; loosing your Dad, norovirus, jaundice, liver biopsy, surgery, external drain, internal drain, balloon dialation and sorry I have to comment: ingestion of bile flavored with Coke or, is it the other way around Coke with bile? Have they explained to you the reason for this. If so, would you mind explaining it to us? Well, the only thing left is a return of energy so I assume that is to follow next. Before you know you will be running a marathon.
Hopefully someone can enlighten us on the external/internal drain, as we are always ready to learn more.
It is great for you to get in touch again especially for those of us not following on Facebook.
Best wishes,
MarionDear Val, its so good to see your smiling face again! So glad to hear you are on the mending road but must admit you really caught me on the ‘recycling of bile’, that is one for the books. Sorry but I had to read it 3 times! Of course Coke a Cola may find it an interesting new flavor. You may be on to something here. Seriously, good to hear from you and please keep us posted especially with new energy coming up around the corner!
Hi All!
I’ve not been on the site for some time, but felt it time for a visit to share the ongoing problems from cc, the gift that just carries on giving!
I was really getting on quite well, had started looking for suitable employment etc etc, unfortunately my Dad was in hospital from the beginning of March after we’d all been pole-axed by the norovirus stomach bug – his dementia made all infections far far more serious.
After several bouts of pneumonia he finally passed away at the beginning of June. I started feeling really quite unwell the following week & put it down to the stress & strain, until I started to turn a pale shade of yellow again. Oh dear.
Blood tests, blah, was admitted to hospital, where the jaundice progressed ‘nicely’, numerous scans, ultrasounds etc later, the docs concluded that my bile ducts were not dilating despite my bilirubin levels being in excess of 800 (in the UK we measure in double digits so normal is 20-ish) – why was I seemingly quite well? Wasn’t that the $64,000 question?Next stage was a liver biopsy, which thankfullly was normal! Also, no evidence of a return of the tumour, so what to do? The dreaded drain couldn’t be inserted under sedation as the ducts were not dilated, so more surgery. Thankfully, again, no evidence of any tumour in the affected area so it appears to be scar tissue from last years resection blocking the liver & causing the problem.
After a four hour op the docs had got the drain in surgically & had opened up three quarters of last years scar which had taken soooo long to heal. Can you hear the sighing?Fortunately, no wound infection this time & as I recovered ‘well’ I was allowed home after 6 days, however, having an external drain with the bag was no joke. I know you can get used to anything eventually but this has been hard. Even with the drains previously they were always internalised which although a pain, was manageable after the body adjusts.
I also (this was the real fun bit) had to ‘recycle’ some of the bile from the drain, i.e. drink it. The only thing that disguises the taste is coca-cola, which I don’t particularly like, so starting each day with a coke & bile cocktail really tested my fortitude!
I had problems with the drain ‘blocking’, which, when I got fed up with visiting the hospital every few days I worked out was an air-lock problem, so learnt how to get that going again.
Last week I had the drain replaced & it’s now been ‘internalised’, a great improvement! The rad man has attempted to dilate the blockage with a balloon so we are now in waiting to see what happens. Yesterday my bilirubin was back up to 88, so more bloods next week. As there always seems to be a ‘blip’ in bilirubin levels after this procedure it’s a wait & see situation.
I’m hoping that I might just start to feel a little better now, or at least have enough energy to do stuff. Any stuff!
The level of fatigue is appalling, although on the bright side I have lost weight! Unfortunatley my stomach doesn’t seem to know that it’s also allowed to loose weight……..Who knows what will happen longer term – my surgeon is considering a liver resection – the only way to free up enough extra bile duct to do another resection to get rid of the scar tissue, but i guess the same thing could happen again -and what to do then?
The Rad man currently favours a semi-permanent internal/external drain – says this is often done in Canada – is he correct?
But as I was under the influence of Midazolam at the time I can’t be quite sure what he said! What a drug!I know I was incredibly lucky that my tumour was found at such an early stage, so was operable, I haven’t had to suffer the rigors of chemo so on that side I have got away with it quite lightly, but the wound infection, along with allergic reactions to virtually all dressings & now this problem, more dressings – I wil be seeing a dermatologist for patch testing next month, it all feels like an uphill battle at times.
I know how some of you are doing from Facebook, a big hello to all of you not in touch on there – one thing I have noted from infrequent visits to this site this year is the astounding number of new members – for a rare cancer there’s a heck of a lot! I hope this is mainly due to better info & the site being so so good rather than an increase in cases.
Hello to you all, ‘old’ or new members & good wishes from the UK!
Best Wishes, Val
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