I have followed the posts for a few months but never actually posted. I don't have a specific questions I just wanted to share some of our experiences. My mother was diagnosed with cirrhosis last August after many many years of test and nobody being able to come up with an answer. She continually had low blood platelets was constantly prone to infections, rushed into hospital on a regular basis for many years without any answers being provided. Many tests were carried out for cancer and many other things but to no avail. As a last resort her own GP referred her to the Liver Specialist. On our first appointment he advised he had looked over all the tests and all the scans etc and was able to diagnose instantly from what he saw. My mums is not alcohol related they reckon it is from her diabetes and medication for rheumatoid arthritis. In December she was also diagnosed with a tumour on her liver. Things are not good and have progressively went down hill in the last 6 months. Some days we cannot wake her it is like she is unconscious, she also has periods that she cannot walk. My mum shakes constantly so much so that she very rarely is able to feed herself, bath or dress. The hardest part for us as a family to deal with is the psychosis which happens fairly regularly she hallucinates, she gets angry and in general is she is like a different person. Her and my dad have been together for over 50 years and it breaks my heart for my father. Anyway there is nothing that can be done for my mum as things are too far gone but I have read on this forum and heard from many different people including the doctors that if you keep yourself healthy, cut out salt and watch your health generally it doesn't have to all be bad news. The one thing I would like to stress on is bowel movement it is extremely important that this is monitored. My mother has to take 3 lots of lactulose and 2 senokot tablets every day as if she doesn't go to the toilet she is off the scale. My mum has now gone into long term palliative care as we were unable to cope at home. It is heart breaking for us all as she is only 71.

12 Replies

  • Sorry to hear of your story. Well, as some who takes lactulose daily, I can assure you I don't need to monitor my bowel movements, they monitor me. ;-)

    The lactulose draws the ammonia out, which would otherwise build up and travel up to the brain causing HE (confusion).

  • Sorry all so for your story. You point out how lactulose is important and I don't understand why it's not working for your mum. I know I lost my mum through cirrhosis she would climb the walls it was exhausting watching her. If I knew about the importance of lactulose then we could have saved her it was a long time ago but I know she was not on any medication in fact it's like we all day back oblivious of what was happening it wasn't till she vomited blood we got medics involved. I hate my self for not knowing more back then. I suppose my punishment now is I have cirrohisis my self through alcohol abuse and thank god for todays technology i learn a lot and have the the support and questions we all need


  • The lactulose keeps my mum's bowels moving regularly. If this did not happen she would become extremely agitated and confused. even had episodes of hallucination. Unfortunately she sometimes refuses the lactulose. her liver is unable to flush the toxins from her body so they go straight to her brain. I knew nothing about any of these things either. when mum was diagnosed we were told to manage her diabetes and cut out her salt intake. I had read a lot on the Internet and have now experienced most of symtoms. don't feel bad this is a cruel disease. lactulose would not save her it just helps with symptoms. It is very soul destroying watching your loved ones deteriorate from any condition. All the best to you.

  • Hi the actilax I was on really blew my stomach up and the specialist took me off I am really worried as I do get constipated as I have to take pain meds from a serious bus crash.i am using other meds for constipation but my bowels don't work like they did before the hep c treatment I just completed after 6 months.i think I have been mislead.i am so worried now.And being so stressed from my best friend dying of liver cancer after only 6 weeks it concerns me a lot.any advise would be welcomed.kind regards Cathy-anne

  • Oh boy Dort! I am so very sorry for what your family and your mother are going thru and I can relate to it all to well! Is almost identical to my story and what I went trough! If I never see lactulose the rest of my life, it would be to soon! Sounds like she's a candidate for a liver transplant, has you and your family have look into it? I had mine a couple months ago and still recouping! I wish you all the best! I came back from the death and she can too! :)

  • Hi lucdizz. I mean it in a nice day but if you read my post again you will see my mum died of cirrohisis a long time ago. I have it now due to alcohol abuse i was told at Xmas after swelling up. I am not being on transplant list as my scans and bloods don't seem to alarm doctors that much too suggest it. Im staying away from that demon that followed me around on my shoulder for so long so that's why I'm probably still here Thank god


  • So sorry to hear your story life can be cruel at times. Please remember all the good times you and your Dad had together with your Mum. Your Mum knows you all love her and she is now getting all the help. Take care xx

  • Hello GeorgeDav. You mighy also want to read my post again i never mentioned my dad. Besides he has past away away as Well . I have cirrohsis now I was saying also and lucky to have more knowledge now than when my mum had it. ..

  • Sorry about that Dort1234 thought I was replying to Clouston22. Wish you all the best.

  • No I'm sorry GeorgeDav. My fault I never read your message right it never had my name on it. I just read straight after a reply from someone and assumed it was meant for me my mistake


  • My thoughts go out to you and your mum , having taken care of my own father for 16months with secondary cancer of the brain I know exactly how to feel .

    This is such am awful disease to have. I have cirrohsis too. 9 years since diagnosis. Only since end of last year I was having symptoms I should have put together. Tiredness, itching, sleep disturbance which I still have and memory loss.. now under queen Elizabeth hospital. All I can say is be with her and talk to her about anything, make the last however long one that is as comfortable as it can be . Linda

  • Clouston 22

    I am so sorry! My mistake! I guess I didn't read all the way nor the rest of your posts :( with all rejections meds I am taking, my brain runs to fast and but it doesn't think straight! I am sorry you can't get a liver but if doctors think you don't itl it's great news! mine was Nash but had a brother who died from excessive drinking! I never thought in a million years, I was going to be diagnosed with the same illness as his since I didn't drink, maybe a glass of wine every now and then! Good luck and God bless!


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