liver damage and varcies

[GTGJ]

hi I’ve just discovered I have varices and I have severe liver damage had no warnings just had a vien that started to be visible on my tummy I also have Crohn’s disease they haven’t said they will band my varices I have to have 6 monthly checks at the moment I also have portal hypertension they have started me on a beta blocker my question is can I go on leading a long life as I’m only 50 years old and very scared I’m also diabetic type 2 I’m so worried and stressed this has all happened in weeks and I just don’t know what to do any advice would be appreciated

[AyrshireK]

Hi GTGJ, welcome to the forum. You are not alone in having a sudden diagnosis of cirrhosis - in my hubbies case it was a massive bleed from varices which took him into hospital (April 2012) where it was discovered he had cirrhosis with portal hypertension. At that time he had just turned 51 - two days before his hospital admission.

His liver damage is deemed to have been caused by auto immune liver disease which has now burned out.

Rather than going for the beta blockers route to prevent future varices, my hubbies consultant went for the aggressive banding regime and he had 42 varices banded over two years then in 2014 he was assessed and listed for transplant but improved sufficiently to come off the transplant list and he is still here, now walking regularly and cycling - including well over 1000 miles last year between his manual bike and electric moutain bike. He will be 63 in April and is back at the 6 monthly monitoring stage with endoscopy every year or two years.

It's key to find out what is deemed to have caused your liver damage and in that way you can tackle the underlying cause to try and stop or slow progression and even possibly undo some of the damage done. With type 2 diabetes - that's a risk factor for non alcohol related fatty liver disease and if that is what has done your damage there is the chance you can slow or stop progression with better diet and exercise.

You mention having a large vein appear on your tummy - this is part and parcel of the portal hypertension and is know as caput medusae - hubby has one at the base of his rib cage joining his tummy.

Life with cirrhosis is a bit of a roller coaster, you will have ups and downs, good days and bad days but you have to adapt to the new you and learn to just ride the roller coaster. Make the most of better days and if you need to rest on bad days then you need to rest.

My hubbies consultant freqently tells us he has patients who have had a cirrhosis diagnosis for 20+ years who are no where near deaths door nor needing transplant. It is possible to lead a good long life even with cirrhosis but you need to do all you can to keep yourself as well as possible.

There is loads of good advice on the British Liver Trust main website.

All the best,

Katie

[GTGJ in reply to AyrshireK]

hi Katie

Thank you for your reply

They are still trying to find out what has caused this problem I have to go for another scan waiting for the appointment to come through reading your reply has made me feel more positive I’m trying to keep well and finding this forum will definitely help me through the bad days I have a wonderful family my husband and son are great but I don’t want to be a burden on them my son is only 23 and it scares me I won’t get to see being a grandma I just hope they find out what’s caused this in the first place

Kind regards

Gracie

[MMaz in reply to AyrshireK]

Katie - it is uplifting and encouraging to read your reply. Being also newly diagnosed with liver fibrosis ( under investigation), shock and fear are my current companions - your reply (and husband) have given me hope. Many thanks, Maz.

[Fibro2021]

May I ask you, please, if you have been diagnosed with liver cirrhosis, or do doctors consider your varices and a vien on your tummy as a sign of non-cirrhotic portal hypertension due to secondary damage to the liver by Crohn's disease? Do you have any minimal signs of hepatic encephalopathy such as chronic tiredness, sleep disturbances, impaired concentration and attention?

[GTGJ in reply to Fibro2021]

yes I have cirrhosis not caused through drinking yes I have fatigue and had sleep issues for a long while now but would never have thought it was anything to do with my liver they are still trying to find out what has caused this I think maybe the crohns has something to do with it I’ve had surgery for the Crohn’s had sections of my bowel removed in 2011 it’s all happened so quick my head is spinning from it all

Kind regards

Gracie

[Fibro2021 in reply to GTGJ]

Thanks for your reply. Have you taken any long term treatment to treat Crohn's disease? It's possible that your cirrhosis may be a medications-induced disease.

[Bantam2]

Hi I am no where near knowledgeable enough to provide answers to your question. What did stand out to me though is how scared and anxious you are. Has your consultant spent time explaining everything as it doesn’t sound like he has? Maybe he did but you understandably didn’t take it all in. Your consultant is the best placed person to give you reassurance, explain what their next steps are, therefore I would write a list of questions to take with you to your next appt and also always take another person with you. If you’re appointment is a while off, then contact the consultant ( I usually find emailing the secretary works best) to arrange a telephone call in the meantime.

I know with the consultants that looked after me pre- transplant they were so helpful and genuinely cared about not only helping from the physical medical point of view but also from an emotional point of view too and would definitely want to allay some of this anxiety and worry.

You sound as though you have had and do have several things going on at once. Take reassurance that they will methodically be looking at different things to make sure the course you go down is the best possible one to follow.

Thanks

[BritishLiverTrust8 Moderator British Liver Trust]

Dear GTGJ

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).

If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Take Care

Best wishes

British Liver Trust

[Oldbits]

Hi, welcome. Firstly dont panic and avoid google. Look after yourself, eat healthy (avoid readymade meals, takeaways, alcohol and reduce your salt intake) and exercise gently. It's a good way to start and a good habit to get into now. Wait until you have more details of the cause so you can tackle it. It is possible to improve and live a normal life with cirrhosis. Yes you will have tired days and good days but as things improve the good days and sleep improves too. Hope you get some answers soon. The liver trust web site has a page with good questions to ask your dr , some you may not have thought of. Xx

[Pie-eater]

Sounds like me about 25 years ago except I haven’t had Crohn’s. I’ve lived a pretty normal life, had a new liver last year and hope to go on for a lot longer yet.

[redpoint72]

Hello gracie. Welcome aboard!.

Your question, can I live a long life with cirrhosis?.

I was similar to yourself, but in my mid 40s when all of a sudden diagnosis of liver cirrhosis was given,with looking back know very obvious serious symptoms. Unfortunately my varices burst big time,a very scary time indeed.

Utmost listen to your medical team, they know what there talking about......

I'm also on carvedilol for portal hypertension, but I've still got varices,and awaiting another endoscopy appointment to check if more banding is required.

You need to focus on taking care of your health, unfortunately it was alcohol that caused my liver issues, so no alcohol in over 4 years for me. I had no choice whatsoever. But im still here, thank god,and I'm so grateful for the help my medical team have given me, also lots of great advice on here the blt forum. It takes a while for things to sink in,and with myself realising life wasn't going to be quite the same again. Try and make sure you get to all of your medical appointments, as that is an important part of your care pathway. As Katie has mentioned, there are certainly ups and downs,and for myself yesterday and today are not overly good days,no energy to do anything, I haven't even walked today which is rare for me.

But ultimately I didn't think I would still be here, heading for 51.....

So it is a positive outcome, unfortunately life isn't all fluffy clouds and rose petals....but,we must move forward with life,and make it the best within our means we can. A good diet is also very important with liver disease, not sure if you have been in touch with a dietician, maybe something to mention when next in clinic.

I wish you well gracie.

My best. Chris