Confused

[broomhall79]

Hi everyone I've been on here a while now but haven't put any posts on for two years I was diagnosed with cirrhosis of the liver three years ago i am 38 years old but I don't know how Long I've had it i was n alcoholic since I was eighteen but started drinking at 14.I recently had a fibro scan i scored 75 Ivery been sober for over three years and feel healthy until recently I've been feeling a sharp and dull pain in my liver and my stools are sometimes black and my wee is brown and smells like poo I've been sent for more test even though am not having anymore pain has anyone on here experienced anything like this as I would be truly greatfull for any information thankyou Xx

[AyrshireK]

All of these symptoms need very serious follow up.

Dark urine may or may not indicate that your kidneys are beginning to suffer as well as your liver. If your poo is black and sticky (tarry they call it) you may have some internal bleeding perhaps from varices in your oesophagus - if you see this you must get some medical follow up - you may need an endoscopy to check for internal bleeds. Any fresh red blood and any blood being coughed up and/or thrown up is an absolute medical emergency.

Sadly your fibroscan score of 75 is at the very upper limit of the chart and confirms your cirrhosis diagnosis. You should be seeing a doctor regularly for blood tests to monitor your liver function, you need an ultrasound scan every 6 months to check your liver and other internal organs and you may even wish to ask your doctor to refer you to one of the transplant centres to 'touch base'.

You are very young, you've done brilliantly to stay alcohol free and your liver has rewarded you with a decent 3 years it would seem. Cirrhosis can exist in two forms - compensated where it carries on and manages to carry out many of it's functions and decompensated where it starts to struggle and has a knock on effect on other organs and starts to fail to carry out all it's functions. From what you have posted you would appear to be going into the decompensated category and you need medical care and attention and the further tests you've been recommended.

Let us know how you get on.

All the best, Katie

[broomhall79 in reply to AyrshireK]

Thank you katie you've gave me some good and useful information I am going for endoscopy this month and a scan plus am getting my bloods done tomorrow I'll keep you informed once I get my results and again thank you x

[Miche49uk in reply to broomhall79]

Very best of luck broomhall I hope this all gets sorted for you.

Take care,

Michelle x

[broomhall79 in reply to Miche49uk]

Thank you Michelle i am feeling better and not as worried as I was because I've talked about things that are happening to me because a lot of people are going through the same or have a loved one in the same position as me and I don't feel as lonely knowing I can talk to anyone about this horrible disease Xx

[Miche49uk in reply to broomhall79]

That's wonderful broomhall x

[broomhall79 in reply to AyrshireK]

What is a transplant centre obviously it's for transplants but what do they actually do and another question sorry katie bombarding you with them but when do they decide to put you on the transplant list do they wait until your really poorly or when they think it's the right time am so confused by it all ?

[AyrshireK in reply to broomhall79]

I am glad you are having the endoscopy, scan and other tests. They should all provide a much better picture of exactly what stage your liver is at and IF you are beginning to show signs that your liver is struggling.

Yes transplant centres do liver transplants but they do say they prefer to see patients before transplant is required so that you have time to wait rather than it become a critical need. That's why I say you should ask to be referred so you can 'touch base' & get under specialist care before it becomes too desperate a need.

My hubby was referred to the transplant unit in Scotland a year before he was eventually assessed for transplant. The T/P unit monitored him ever more closely and infact took over his care. In his case the consultant at the liver transplant centre took charge of his whole condition she took over his endoscopy / banding regime, changed his medication and referred him to the liver specialist dietician to get a grip on his condition.

His consultant there then referred him to be assessed for transplant and after a week of tests he was listed but eventually after 10 months he was delisted as his blood tests improved and this took him out of the qualifying criteria for t/p and they still continue to monitor him at the transplant unit hospital.

There are certain things which doctors look at to decide when it is time for transplant assessment and then during the assessment they check whether transplant is required (i.e. what state your liver is in) and whether you are indeed fit enough to undergo the procedure and don't have any contraindications for transplant (ill health other than the liver, mental well being, social network and more). A good guide to what goes on is detailed on the Scottish Liver Transplant Unit patient guide page (ok this is the Scottish Centre but other UK centre's will do it very similar).

nhslothian.scot.nhs.uk/Serv...

No question is daft and it is best to educate yourself and take ownership of your health so you know what to look out for and also what to ask doctors for. I would add that as you have acknowledged alcohol has been an issue for you and you have done great getting sober - this will be absolutely imperative to remain so and prove your abstinence.

All the best, Katie x

[broomhall79 in reply to AyrshireK]

Thank you once again katie I've learned more and been told more by you than my liver specialist i can't wait to see him because they seem to swerve my questions all I know is that'll need a transplant in the future but wait till I see him this time I'd prefer to be told how bad it really is and for more information instead of being kept in the dark. Thanks you so much katie Xx

[AyrshireK in reply to broomhall79]

Have you had a read at the British Liver Trust page on cirrhosis? I found it a very informative read when my hubby was first diagnosed in April 2012 after a massive upper GI bleed. It gives you a good explanation of what goes on with the condition.

We found you have to be a squeaky wheel and push (firmly but not aggressively) for tests and things which should be happening. At every appointment we take a list of current medications, current symptoms as we see them and a list of questions we want to ask and especially at the T/P hospital we've always found these get answered to the best of the doctors ability.

britishlivertrust.org.uk/li...

Now that symptoms appear to be presenting definitely watch your salt, sugar and processed food intake. Make sure you arn't loosing weight (and muscle) by eating little and often with protein and carbohydrates a must to keep yourself fuelled. If you feel weight is dropping off get your doctor to refer you to a dietician. This is where T/P clinic comes into it's own as they have a whole team of liver specialists - not only doctors but nurses, dieticians, psychiatrists, social workers and more who you can get to see if needed.

Look after yourself and fingers crossed your doctor starts to give you more information - if you are armed with the information then you can take care of yourself going forward.

Thanks for your nice words too, I just try and help where I can.

Katie

[broomhall79 in reply to AyrshireK]

Thank you katie I will definitely be reading it and writing down questions for my liver specialist and to get as much information possible I'll let you know how I get on thank you 😉x

[Faithfull]

Sorry got that wrong and ignor my post I thought you ain't been GP sorry

[Hidden in reply to Faithfull]

Hi

Hope everything goes well for you and well done on abstaining from alcohol for 3 years . Please take care. Lots of love Lynne xxxx

[Faithfull in reply to Hidden]

Thank you you please take care as I no that you always help me and all on here I want everyone to no that without being on here with you all that I'm not alone as I never go out I'm still confused about a lot and I am still waiting on social worker and you all keep me going I only go hospital me day out once twice month because of other illness bless you all for keeping me going.

[Hidden in reply to Faithfull]

Please take care. Lots of love Lynne xxxx

[Faithfull in reply to Hidden]

God bless you lynnexxxxxxx

[Hidden in reply to Faithfull]

Thank you xx

[Faithfull]

Go to GP as you can't chance nothing even if it's nothing but please go

[Millie09]

Hope all goes well ! I was in the same situation 9 yrs ago . Deaths door .but with the care and all the tests done and stopping the alcohol which 3 years is great so well done 😊. Listening to all the advice and correct diet as nutrition is so very important im still here . Yes i have deteriorated since last november but having regular check ups at qehb liver unit . All the best .. linda

[broomhall79 in reply to Millie09]

Thank you millie I hope they sort my diet out on what I can and can't eat and what's best to help your liver keep working to the best it can even with it being so damaged I'll keep you informed on what' happens thank you for your kind words Xx

[Faithfull in reply to Millie09]

Thankyou that's really give me a lift .I don't no what gehn means?

[Millie09 in reply to Faithfull]

Sorry QEHB. is queen Elizabeth hospital birmingham

[Faithfull in reply to Millie09]

I thought it was a special code .lol .

I'm at hospital tommorra for me head got menningona it's no bigger so think I get just another brain Mir in yr . Then I got another endoscopy Thursday coz of bloating ,ulcer,ect .makes me nerves bad test after test but onwards and upwards and hope u ok? Keep I touch .x

[Millie09 in reply to Faithfull]

Lol , its me being lazy 😂. Oh i hope all goes well tomorrow. Well im no fan of endoscopy.. was wide awakr at my last one in june . Nothing bad was found though so cant complain .i have two appts next week one at QE amd the other at good hope orthopaedic triage due to my osteopenia in my hip and bone thinning. No its not nice having all these tests done but they are for a reaaon ... keep yoir chin uo 😊. You too .keep in touch x

[Faithfull in reply to Millie09]

I'm today seeing about meningoma in head ain't got bigger so think that's ok then that camera yes I had it done in March but liver is bit worse or the ulcer, and I have had full hip replacement one yr ago as of degenerate disc disease and bone growths on it and I can walk now but was bed bound yr but I ain't in that pain it was terrible and cement they put in I keep thinking of in op had the builders in lol. Hope you get on alright let me no .x

[Millie09 in reply to Faithfull]

Hope all goes well today faithful ; so you had one in march . I cant stand them bloody endoscopies . My liver has declined now since november .i did have a duodenal ulcer a few years ago but it went after taking lanzaprazole. Oh so you have had a hip replacemet then !! Waa it worth it .🤔.. i have some sort of cupping where there.is abnormal bone growth on top of the osteopenia .seems we have similarities lol . Omg i can just imagine the op lol . Welll i have trouble walking now and dont ask about getting out of the bath 😂😂. Im waitiing on OT to assess me for bath rails and seat .perching stool etc. I have a walkiing stick i borrowed off my neigbour. You take care and yes i will keep you updated and vice versa x

[Faithfull in reply to Millie09]

You sound just like me .today good news meningoma in head no bigger but they done it two times wrong dr I made him laugh when he was looking in me eyes I said take the mask off .cant help it got ADHD and don't mind when I can make someone laugh.

It worker gave me instructions b4op that it does me no harm up down stairs even I was bed bound as of bone growths knocking bits of pelvis off but you no what the pain was unreal before op still can't walk far less pain and hope your it is better than mine and they try trip you on the questions like do u want freedom pass ,really can't walk that far let alone get on bus got the other test 2morra thanks for getting back to me and yes def keep in touch as we do seem alike ,and if u need to no the op ain't bad at all.hope u ok .

[Millie09 in reply to Faithfull]

Hi faitfull ! Oh that is great news ! So pleased it has not got any bigger

Lol , yes you have a good laugh with the drs or anyone if your like me .we may be struggling at times but having a laugh really does help .

Oh i had my pip assesment a week ago ; they really make you feel like you are pretending just to get more money. I have to go everywhere by taxi and that costs me a lot .

Im still waiting to hear from occupational therapy but i .might chase them up with my doctor .

I can imagine how bad the pain was and mine is only just starting .hope all goes well tomorrow 🤞. Keep smiling .. keep me posted .😊

[Faithfull in reply to Millie09]

Sorry ain't been in touch believe me op ain't nothing as I'm still house bound and me back spinal stenosis, it's funny we sound like we got same sort of things wrong and believe me when I say that is like being on that knifes edge in case they may once here a little laugh from you but the laugh is how bad bad is there bad none as they can not empathise that we are human and yes we have to get cabs as we can't walk to the bed let alone the bus stop I hope it is ok I'm sure but I had to get out my help for all bit

[Millie09 in reply to Faithfull]

Hi faithfull , dont worry , i have been busy myself .sunday was in pain with my hip and yesterday .went to liver clinic today .i have put on half a stone in weight and my scan shows i have fatty liver now .due to me not being mobile enough and waiting for assesments on my hip and back i cant be bothered to cook from scratch so i am eating way too much crap food and way too much chocolate lol

I know i should not laugh but it is so easy for them to say no alcohol , no chocolate no smoking .. whats left to enjoy in life ? Does my head in . No news on my pip as yet . Sorry to hear that you are still struggling .. just make sure you keep on to any drs or hospital to make sure you get all the help that you can

[Faithfull in reply to Millie09]

I read your replies again as I don't take things in and get confused who's who on here but I no that I'm so glad you can have a laugh and in me head I keep going to say cheers for that , then I thought ,omg I am glad I never but they no I ain't being funny if I e somethings wrongbutyou do make me laugh and thankyou for that as you sound like me on here .

[Millie09]

Your most welcome . They will sort your diet out . Plenty of protein and veg . Low salt diet diet etc .. keep us posted 😁

[Faithfull in reply to Millie09]

Thanks I been having juices beetroot one is vile but I drink it with other stuff .i think I'm eating right but pop corn sweets you name it trying to lie to myself that if I juice then a sweet or 5 be OK as craving for some thing constant I don't even like alchole taste . The feeling of numb yes ,more numb now I abused my body to do this and trying to work out diet feeling ill and no help but I cannot say it's drink it's sweets do uu no why.?

[Millie09 in reply to Faithfull]

Well your not on your own with the sugar craving .i have tried and cut down then started eating even more sugary chocolate. I was told off last week by my hepatogist that i have fatty liver now where i did.not when diagnosed 9 yrs ago with cirrhosis.

I have started eating more fruit and 60%sugar free choc .but then i have to be careful with my carbs as that turns to sugar too ... well confused

[Faithfull in reply to Millie09]

Thanks for reply first I must tell you no one told me nothing about diet ect I nearly got put back in hospital when i first cut drink out my life as I was overdoing ice cream as it was a family tub a day nearly 3yrs now cut ice cream lucazade now it's cut sweets down after Christmas or when I get help with diet off dr .

[Millie09 in reply to Faithfull]

Hi faithful; i was only told to have low salt high protein diet, nothing has ever been mentioned about sugar in the last 9 yrs since diagnosis

Well done for cutting back !!

I have slowly cut down by half the amount of sugar now .its not brilliant but its a start. There will be a no holding back xmas day though. I domt drink or smoke anyway so that's my pig out lol

[Faithfull in reply to Millie09]

I go threw cravings I stopped drinking 3yrs nearly I'm always checking that nothing has alcohol in it as it even sweets perfume etc as I'm never gonna drink again but then I be up all night eating crap then making a juice lie to myself that it covers the crap I ate but yes Christmas I'm going for gold!