Disappearing distended abdomen

Hi! I'm new here and wondered if anyone can answer a question that no medical professional has been able to. My sister died on the 28th March of what I believe was undiagnosed liver disease. She had drank too much for way too long and had had various symptoms relating to liver disease. But what I want to know is, just before she died her massive tummy just disappeared. What made that happen? Her doctor tried to say she had put on a lot of weight previously but surely if it had been fat it would have remained? We as a family cannot get past this, as her doctor refuses to entertain the idea that she had liver damage. Thank you.

[Hidden]

Hello,

Welcome to this friendly , supportive forum.

I am so sorry to hear of your loss.

Unfortunately, no-one here is medically qualified to comment on what may have happened in your sisters last days.

May I suggest you ask her doctors to talk through her death certificate diagnoses in order to try and give you some closure and peace?

I have also included a link to bereavement support

nhs.uk/conditions/stress-an...

cruse.org.uk/

Take care

Trust9

[Hidden in reply to Hidden]

Thank you for your reply. I have been over my sister's cause of death with her doctor, but I want to know what led upto her death. Her doctor is pretty certain that alcohol was a strong factor in her premature death, as she was drinking 83 units a week. She was referred to rehab but she had no motivation to stop. The things that were wrong with her in the 2 years before she died were all symptoms of alcoholism, but in the end she died of sepsis and multi organ failure. I just wish we had known what she was going through💔

[AyrshireK in reply to Hidden]

I am puzzled, the doctor says that he/she is pretty certain that alcohol was a strong factor in your sisters death yet refuses to entertain any thought of liver damage. 83 units a week is a pretty horrendous amount and more than likely alcohol related liver disease was indeed the cause of her early demise. Multi - organ failure is usually the way that someone with cirrhosis does die if it claims their life.

Sadly I don't know what any of this gains yourselves, your sister was offered the help she so desperately needed but couldn't/wouldn't stop so sadly her death wasn't preventable.

The British Liver Trust pages on alcohol related liver disease and cirrhosis will probably flag up many of the issues your sister was suffering.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

So, sorry for your loss but sadly you need to grieve and then move on for your own sakes.

Katie

[Roy1955]

Most Drs will simplify a cause of death as a kindness to the surviving family and not give a blow by blow account.

Lung cancer can become lung disease.

HIV can become organ failure.

Same goes for alcoholism.

Nobody wants alcoholic recorded for all time as a cause of death.

[Hidden in reply to Roy1955]

Hi Roy1955, yeah I have heard that. I just cannot understand why doctors don't realise that test results aren't the be all and end all. They said she had deposits if fat on her liver "of no great concern" yet they just seemed to ignore the fact of all the alcohol she was consuming. I know she seemed to have shunned any help to curtail her drinking, but I feel she should have been under some kind of palliative care at the end. It breaks my heart to know all the things she'd been through in her life and the reasons she drank so much.

[Salpal1]

I have the exact symptoms and painful to touch on my upper stomach so confused as to what to do

[Hidden in reply to Salpal1]

Salpal1 I would not waste any time in seeing a doctor. I know it's not easy just now but at the very least they will speak to you on the phone. My young sister had/has a huge stomach during lockdown, and I got her doctor to see her and I have since taken her for an ultrasound which showed a very fatty liver. She has now been referred to a liver specialist. My advice would be not to delay. Wishing you well and sending love and hugs ❤️🤗❤️

[lyn3]

Hi helpcare, first of all my condolences on you loosing your sister, such a heartbreak for you and your family, hugs.The reason i understand why her stomach went from distended to nothing is because when someone has liver failure it causes the stomach and other parts of the body to carry alot of fluid ,usually needs draining, when the person is days /close to death with this the fluid it leaves the stomach and travels to the heart and other organs eventually resulting in heart and organ failure, i am not an expert but a friends husband had the same before he died and she asked the same question but her husbands consultant was kind enough to explain it all to her. Sadly too many are going undiagnosed with liver failure because drs/consultants arent interested in helping that person when they drink until its too late..My hubby isnt well with his liver, they keep saying its only fatty liver but hes got all the symptoms of cirrhosis and the consultant refuses to see him until he gives up the booze completely even though hes hardly drinking now because hes not able to.

Ive lost all faith in the drs and hospitals now.If you need to talk pm me or talk in here as this is such a lovely forum with everyone supporting everyone . Love and hugs..

Lyn..

[Hidden in reply to lyn3]

Oh Lyn! Thank you so much for your reply! It has explained so much and you have been more help and comfort than any professional I have spoken to. Honestly I cannot thank you enough. ❤️❤️❤️ I feel your pain and frustration with the medical profession, as I also feel that my sister was kicked to the kerb because she drank. Would they do the same to lung cancer patients who smoked ?? My sister wasn't drinking much at the end either, as I think the damage was already done and she was growing weaker by the day. I wish you and your hubby all the luck in the world. I know what you must be going through and its so unfair how he has been treated. Loads of people drink and it never affects them.... they are the lucky ones. Sending lots of love and hugs 🤗❤️🤗

[lyn3 in reply to Hidden]

Your very welcome, I have come to believe that everyone on this forum are more helpful than most professionals.Why? because professionals only know their things (and they dont know it all) by studying it, we know more because we live with or through it. My hubby smokes as well and hes got copd, also one lung turned in on itself and alot of scaring on his one lung, hes been discharged because he still smokes. Regardless if they are drs/consultants they still have a duty of care no matter what is the cause of their illness,.,No one wakes up one morning and thinks oh i think ill be an alcoholic, oh i think ill become addicted to smoking or drugs,Its an addiction Im sorry to hear how your sister was treated. Thank you , we just take one day at a time now.

Take care..

[Hidden in reply to lyn3]

You are absolutely spot on about a duty of care. It seems some doctors are letting their personal feelings cloud their professional judgement. I am so sorry for all you both are going through. I truly hope your hubby gets the help he needs. Thanks again for all your help. Take care ❤️❤️

[Kingsleybones in reply to lyn3]

Well done Lyn. Why are people so scared of the truth? It is so much more useful than shame and pity.

[Hidden in reply to Kingsleybones]

Absolutely 😢

[lyn3 in reply to Kingsleybones]

Hi kingsley thank you... I would rather know the proper diagnosis than being fobbed off, at least then you know what your battling with,I believe if they had said right ok we got it wrong he has got cirrohsis (although its in his notes he does have it, and when they realised it was on his notes they deleted it, but what they dont know is i have printed proof it was once on there .:). at least we can try and sort somethings out, but its like sitting on a cliff edge...Im sure we will get to know the full truth of his diagnosis unfortunatly it will come when he wont be around to know it..Its very sad because we arent the only one, there are hundreds that are wrongly diagnosed.

Take care

Lyn..

[Hidden in reply to lyn3]

Thats appalling! How can they change their minds like that? What symptoms does he have that are relevant to cirrhosis?

[lyn3 in reply to Hidden]

Yeah i know , its mad,,Distended belly, swollen legs and feet, enlarged breasts(not sure what its called but looks like hes got boobs), spiderveins on his face, clubbed fingers, tiredness,nauseous, H,E. Intolerent to alcohol. His skin is slightly yellow. loss of sex drive..Wish i knew how to add photos on here i could show just the two lines on the two different pieces of paper, before and after deleted words cirrhosis.

I have a post of update on hubby and i have added yesterdays visit to the drs and then hospital, its madness..

[Hidden in reply to lyn3]

So what do the doctors think is wrong with him then?? To have all those symptoms and not have cirrhosis seems nuts. Does he have ascites?

[lyn3 in reply to Hidden]

Morning ... The drs are saying hes got fatty liver and lung problems, thats about it..When they told him he had fatty liver 2 years ago, and 6 months later had another appointment i asked the consultant how long does it take to go from fatty liver to cirrhosis and she said hes showing signs of it now. That was in 2018, funny enough thats the date it says on his notes cirrhosis,which the dr deleted from his notes.Yes hes got ascites.. Ive had the hospital on the phone this morning with an appointment for him to have the camera down his throat, hes refused to speak to the receptionist because he doesnt want to have anything done anymore because hes sick of going for tests etc and them saying the same old things.

Hes very depressed today because another one of his best friends passed away yesterday 48 years of age, yet another life claimed all in the name of alcohol.Its so very sad. He was diagnosed with fatty liver in 2018,then diagnosed with cirrhosis in dec 2019 and died in ICU yesterday morning..

Very very sad..

Take care.

Lyn..

[Hidden in reply to lyn3]

Oh Lyn, I am so, so sorry to hear about your husband's friend. He must be heartbroken. His own situation must be praying heavily on his mind, so no wonder he's depressed. It must be so hard for you to watch, and to deal with. I can understand why he doesn't want anything else done, as to get the same answers all the time, he probably just can't see the point. This is such a cruel and insidious illness. I am continually shocked by people's stories of how they were fobbed off and not sent for the right tests. I' m terrified as after losing my sister in March, my young sister has been diagnosed with a very fatty liver and is wsiting to see a liver specialist. She is retarded and doesn't really get how serious this could be. It's unbelievable that since time began, all humans have had a liver, yet so little is actually known about it. It must be hard sweetheart, but try to keep your chin up and look after yourself too. Thank you for sharing your story. I'm here if you need me. ❤️🤗❤️🤗

[lyn3 in reply to Hidden]

Evening helpcare..Yeah it is hard for him loosing another friend, and i agree its brought back home to his own situation,Its hard for me to watch him struggle with addiction, to watch him going down hill and not having much of a life ,but its even harder when im not well (as i was last night) and i was saying how i had been up most of the night and why but he just wasnt interested in listening.I chose not to go to the pub tonight with my daughter and my other children because it is her birthday , because i felt bad leaving him home on his own (even though he was in bed) , i came home after spending time with her , hubby said ill get up in a bit and hes still there now. Just seems so unfair that im there for him 100 percent but there is no support from him ,wether im ill or lost a friend (which happened a few weeks ago. ).

Yeah so many fobbed off, its disgusting, and so unfair on the person thats sick and even more the carers/loved ones..Sorry to hear about your sister,, bless her.. If you need to talk in pm , anytime ok,,Love anmd hugs Lyn..

[Hidden in reply to lyn3]

Hi Lyn. I'm so sorry you haven't been feeling well, and even more so that you have no support from your hubby. I felt that my sister's partner didn't have a life either. It was so sad to watch. I can't imagine being in your situation, knowing what you know. What happened to your friend? I'm so sorry for your loss❤️🙏💔 I do hope you are feeling better today. You probably can't find the time to be ill. How can I pm you? Lotsa love ❤️

[Laura009 in reply to lyn3]

Hi Lynn. Yes that is the case. In order to receive full care and treatment your husband has got to give up the booze completely to prove that he is committed to wanting to recover. There is no point doctors treating any disease if the very thing which prevents it healing is still being consumed. It's like trying to put a fire out by continually pouring petrol over it and expecting the fire service to step in and sort it out. If he could just go that extra mile and give up completely, especially as you say he's not even able to drink , he really will be treated in the way you wish him to be.

Take care. Best wishes

Laura x

[Bjw7]

I have worked in health care in the states for 25 yrs end stage cirrhosis, is a horrible disease. You turn yellow, your stomache looks like it could explode. So sorry for your loss . I am also about 3 yrs into my liver disease. I have non alcoholic cirrhosis, hereditary hemachromatosis, autoimmune. My stomache stays horribly swollen. God bless you .

[Hidden in reply to Bjw7]

I'm so sorry to hear of your situation. It's so sad that you can inherit these diseases through no fault of your own 😢 Whst really confused us was that my sister didn't itch, she wasn't yellow, as far as we know wasn't told she had ascites, but was told to double up on her water pills. But there was no doubt about her stomach and it came on almost overnight. I wish you well bjw7. Sending you love and hugs ❤️🤗❤️