Diagnosed with cirrhosis

[Horsemum101]

Today I found out I have stage 4 fibrosis which is cirrhosis. I quit drinking over 10 years ago, I've had weight loss surgery and lost over 5 stone which as reduced my fatty liver to practically zero. I don't have hepatitis or autoimmune liver disease, yet I still have cirrhosis. I'm only 41. I'm feeling really lost and low.

[Anthonysmate]

I have stage 3-4 Fibrosis with bridging, in the United States it is referred to as pre cirrhosis or even early Cirrhosis, in the UK it's still Fibrosis but the severity is only one step away, there are experimental drugs now in study to counter the bridging, bridging is when a small area of the Liver is Cirrhotic. My consultant noted my abstinence from alcohol and my weight loss on my last consultation, my bloods were fine he put me down for another appointment in December - His opinion concerning myself - I have fibrosis with a very small area of bridging which must be monitored, I'm doing all the right things so I give myself a good chance of it not getting to full Cirrhosis, but he can't guarantee anything. * My diagnosis was after all tests including biopsy * I would ask for clarification from your consultant, as I did.

[Horsemum101 in reply to Anthonysmate]

Thanks for your reply. I'm feeling lost and scared. What you say makes sense. I should wait until my consultation on Friday to get the full picture.

[Anthonysmate in reply to Horsemum101]

Yes, make a note of what you are concerned about, because they usually ask at the end have you any questions for us, if they don't politely say, please excuse me but I have a few concerns I need answering to the best of your ability....

[Researchfreak in reply to Anthonysmate]

Hi I have stage three liver fibrosis and have never been a drinker overweight or anything else. I have a lot of other things going on too. Including two weekly transfusions. Re sphincter of oddi be careful with this as it is nearly impossible to diagnose and I’ve had a surgeon wanting to cut the oddi without really knowing if that was what it was (this is a specialist). I said no as it could make pancrititus worse. Do your homework.. liver transplants are a lot more accessible than they were. You have youth on your side. Keep fighting

[BritishLiverTrust4]

Hi Horsemum101

You might find the list of possible questions on our website helpful to prepare for your appointment.

britishlivertrust.org.uk/in...

[pushthrough]

Sorry to hear the news. I’m 39 with cirrhosis so I know how you feel. It takes some adjusting but you can live a pretty normal life. You quitting alcohol 10 years ago kinda throws me off though. Maybe it’s possible you had f3 for a long time and something put you over the edge. I went from awesome blood work to cirrhosis in like 2 years. They say from alcohol which I did drink.

[Qr83k_-Jd in reply to pushthrough]

I too was totally surprised when I was told I had cirrhosis although I drank after work I was gobsmacked. I said it couldn't be true but I had the fibroscan and it seems I have it. I was very scared and I felt awful and so alone. Then I found this website and the rest is history.

[Horsemum101]

The doctors are baffled! I am an alcoholic. I was drunk most days before I started to cut down for a year then I quit.

[AyrshireK in reply to Horsemum101]

Did you eventually have a liver biopsy? I think the last time you posted you were waiting for one. From this and past posts you have obviously had fatty liver with a massively elevated ALT (liver inflammation marker) score indicated in some of your blood tests - this together with a previous history of alcohol over indulgence would all be sufficient to tip your liver into a fibrotic/cirrhotic state. The more aggressive form of fatty liver disease i.e. NASH might have accounted for fatty liver turning to cirrhotic tissue.

At this stage you need to continue with your successful abstinence and continue with your healthier diet regime plus increase your exercise if possible and this will hopefully give your liver the best chance of remaining stable and even possibly reducing some of the damage.

Even having cirrhosis isn't the end of the world - you can still do lots to keep healthy.

Katie

[Horsemum101 in reply to AyrshireK]

Thank you for your positivity, that really helps

[Horsemum101 in reply to AyrshireK]

Oh and no, no biopsy yet. I changed hospitals so had to start again with all the tests. I'm having an Endoscopic ultrasound on Tuesday.

[AyrshireK in reply to Horsemum101]

How have you found out you have cirrhosis?

[Horsemum101]

I've had 4 hospital admissions in the last 5 weeks. My discharge sheet from yesterday says it. I wasn't told before. I had a fibro scan a couple of weeks ago that showed the result apparently. I know it's only a partial diagnosis as they are also testing for Sphincter of Oddi Dysfunction.

[AyrshireK in reply to Horsemum101]

You've been through the mill, hopefully your new medical team can get to the bottom of what is going on and get you stable and pain free and able to go on living your best life.

Katie

[pushthrough in reply to Horsemum101]

Wow, sorry to hear that.

[Rshc]

I am sorry you are going through this. If you continue to live a healthy lifestyle there is no reason to believe you cannot live a long and happy life. When I was researching cirrhosis (my partner has it caused by alcohol) I did come across some research about the link between liver disease and weightloss surgery. It may be worth looking into (from reliable sources of course).

[Horsemum101 in reply to Rshc]

I had weight loss surgery 3 years ago. That's how I lost the weight. I still have more to lose but I'm so much healthier than I used to be.

[drittz78]

I don't know what weight loss surgery is but are you still overweight? If so that might be the issue. It could be hereditary as well or that you had Cihrosis for a long time and didn't know.

[YvonneM60]

I'm so sorry to hear your news . I had a near fatal bleed last year Varacies , I wasn't aware of , when I was on the ward I too was told that I had chirrosis ! I havnt drank in 18year and built a new good life. I was devastated to say the least . I was then told by my Gastroenterology team thar I did not have chirrosis and my bleed was caused by chronic pancreatitis. I was so relieved , only to be told again that I had chirrosis ! This went on for months .

Finally No chirrosis although because of mu portol hypertension my insides aren't brill . I have banding every 4 week to help avoid another bleed .

My liver is shrunken on the left side .

I'm so angry as I've been seeing a specialist for years foe my CP yet somehow I have been left to deteriorate and this is the result!

I'm now living my life , I'm feeling good at the moment so that's what I'm working on .

I know I'll deteriorate therefore why I can I'm doing everything I can.

For me it's the only way !

To live nit just be Alive ! To feel Alive ...

Hope this helps a little I still have a niddling feeling that I may have chirrosis but what the he'll I'm Alive . Last August after loosing 5 litres of blood I wasn't so sure,!

[Horsemum101 in reply to YvonneM60]

I just read about your experiences last year! Goodness, I'm so glad you're alive. I'm also in Manchester and I was discharged from one hospital because they assumed I had taken too much Paracetamol and therefore the problem would solve its self. I don't take Paracetamol any more yet I'm still ill. The main Manchester hospital has taken on my care and the attitude couldn't be more different. I'm so relieved. Also the other hospital decided that because I'm an alcoholic I'm also a drug seeker, therefore they refused me pain meds whenever I turned up in A&E! I'm sober 11 years and never taken street drugs in my life.

[mtk0925]

Wow that’s quite a lot to go through Doesn’t sound alcohol related. I drank a lot in college and then weekend when I was out of college then just here and there. I haven’t been dx with cirrhosis yet. What are your symptoms? What led you to the hospital? You might need a second opinion. Have you been checked for autoimmune disorders

[Horsemum101 in reply to mtk0925]

If been checked for all the usual liver suspects (hep, autoimmune, cancer). A blood test last August because I had a lot of pain under my right ribs showed my ALTs were 1300 instead of under 55. My ALTs go crazy then normal then crazy again. The pain associated with high ALTs is when I end up being admitted into hospital. I'm currently on my 4th opinion 🤦‍♀️

[Qr83k_-Jd]

I felt the same as you did when I was told I had cirrhosis. I found this website and since I haven't looked back. I was lonely, terrified and very miserable. Anyhow, I found this site and have never looked back. It is confidential and I have received loads of advice, support and the people here are fantastic and trustworthy. They have helped to change my life and don't know what I would do without the help and support of all the people here. So please do not feel alone as we are all with you and we can identify with you. Good luck on your journey.

[Horsemum101]

Thank you for that message

[Robert1220]

I have stage 4 NASH/Cirrhosis and I am slowly coming to terms with it. I suffer with anxiety and depression so learning this was like throwing petrol onto the flames. It was and is such a scary time but this forum has really helped me to understand and deal with this condition. I have lost almost 3 stones, my diabetes has returned to normal range and so my GP is pleased and said to continue doing what I'm doing. But I find periodically, that I need this reassurance and then I'm okay for a while. So please try and look forward and make those changes. Kate is so knowledgeable and gives such good help. Take care x

[Tizzwas]

Hi Horsemum,

I also have Cirrhosis (diagnosed on December 21). I was gobsmacked and embarrassed to be told in front of a busy ward that it was my own fault because I liked a drink!! I have been very ill and it's exacerbated what depression I already had. I've not touched alcohol since my diagnosis, and nor do I want to - I never considered myself as dependent. I only went to the doctors with a swollen tummy which I found out later was ascites, since then I've had a couple of abdomenal drains and seem to be more stable with diuretics. I had sepsis in 2017 and I have asked if this could have kicked things off but they said no, even though I went into organ failure at the time. Nope it was all drink and my fault, now I get treated like a raging alcoholic by nearly everyone, I think that's actually worse than the pain. I'm also in Manchester and aside from two lovely specialist nurses I have found the care to be awful.

I hope you start to feel well again soon xx