Alarming Ascites

[MrsWorried]

Hubby had ascites drained 10 days ago, approx 8 litres. Despite increasing doses of diuretics, fluid is building up again. Is this normal? What is a long term plan of care? Still in hospital so no access to alcohol but know he will drink again once home. Any advice most welcome

[Rshc]

I am so sorry you are going through this. Does he have a cirrhosis diagnosis? How long has he been an inpatient for? Is he getting any support through detox? My partner was hospitalised due to extreme ascites and edema (he had to stop taking diuretics for a time due to low sodium) and then when he was put back on a high dose of diuretics it did take a number of weeks for the fluid to go. However it is possible to have ascites that does't respond to diuretics - it would be best to discuss this with his hospital as they will be monitoring him and weighing him daily so will have a better idea if the diuretics are starting to work

[MrsWorried in reply to Rshc]

Rshc, thank you for replying. He has been a heavy drinker for 40 years. We've not been together all that time but as long as I've known him he has been advised to reduce his alcohol intake. Default answer is denial and always find another - implausible- reason. In the past year he has been hospitalised several times (seizures, brain haemorrhage, falls, detox, gut issues) and eventually referred to gastro consultant who confirmed cirrhosis this summer. He's been receiving regular contact from addictions team, also from a dietitian, but although he's reduced his consumption he is still drinking.

He's lost all muscle tone, gone from being a fit tradesman to an old man that walks with a stick. I have to watch him to make sure he's safe in the house. Exhausted all the time. Constantly bruising and bleeding. Barely eating. Struggle to get him to take medication. Loose bowels - yellow/green. There's a funny smell about him - not sure what this is. Oedema in feet, ankles and lower legs, skin now badly cracked. Itches constantly. Confused and unable to retain any info.

Diuretics for 4 months now upped to max dose after draining but weight goes up and tummy is bloated.

Been inpatient for 12 days now. Hopefully this week someone will come up with a plan for moving forward.

Sorry for rant, just not getting any answers!

[AyrshireK in reply to MrsWorried]

Hi MrsWorried, sorry to hear about the situation you find yourself in. It sounds like your hubby is very, very poorly at this given time showing many of the red flag symptoms of decompensated cirrhosis. Obviously, hospital are going to battle their hardest to try and get these symptoms under control but without a complete cessation of alcohol and doing all he can to get himself well there will be fairly limited options going forward.

The BLT website page on cirrhosis may be a place for you to gain more knowledge on what it going on as regards symptoms being displayed.

britishlivertrust.org.uk/in...

You don't say how old hubby is or whether transplant has been discussed (this only possible with sobriety and lifelong commitment to remaining alcohol free).

I do wish you the best of luck, hope you can look after yourself in all this, hubby is in the right place just now and hopefully they can get him more stable. He sadly probably is on a bit of a knife edge just now and you may need to prepare yourself that this may not have the most brilliant outcome - it certainly won't if he can't stop drinking.

The BLT has a page on planning for the future in light of advanced liver disease and whilst no one wants to think about it we do need to make sure all the proper care packages etc. are in place. britishlivertrust.org.uk/in...

Thoughts with you.

Katie

[MrsWorried in reply to AyrshireK]

Thanks Katie it's just so horrid isn't it and you feel so useless xx

[Positive001 in reply to MrsWorried]

Hi MrsWorried. When you say he will start drinking again when he is home, does he go out to the pub to drink, or buy his supply and bring it home ? You are in a position to stop this happening if he is bringing it home to drink. Pour it down the sink ! I assume he is too ill to work ? Cut of his access to money so he can't buy it. I had to do this with my husband ..... it's called tough love and you have to be very strong and determined !

Good luck you are going through a really hard time and you have my sympathy.

Laura x

[MrsWorried in reply to Positive001]

Hi Laura, thanks for your reply. Correct he's not working and I've stopped working to care for him. Money is an issue but he doesn't understand budgeting never has. So long as there's money for booze and fags life's good.

All throughout our marriage I've never succeeded in stopping him from drinking. If i said no to buying it, life would be awful. I can query the second or third bottle, but i can't remove his crutch, that one bottle, not when the GP and addictions nurse agree he can't stop "just like that".

I'm probably very weak, and you'll all criticise me, but that's how it is. He feels he has the back up to continue cos it's dangerous to stop "cold turkey" so i would be making it worse ny refusing to buy or let him buy it.

[Aotea2012 in reply to MrsWorried]

As someone who used to drink far too much, I know the mindset. I’d find any reason not to stop. You are right, he can’t just stop cold...that’s dangerous. It sounds like he’s had contact with alcohol services and I’m sure when they explained about the dangers of stopping without supervision they didn’t mean carry on. Now that he’s in hospital I suspect they will have done a detox as he’s had no access to alcohol, they’d have had to. So that excuse will have gone. The problem is...he doesn’t sound like he wants to stop completely. No amount of pleading from you will make him....it has to be him wanting to that will succeed. I got very sick....and that was enough for me. I haven’t touched a drop since my hospital admission back in March 2021. My relationship with alcohol was very distorted and it had gone from social heavy drinking into something completely dependent. I have to say...I haven’t looked back since I’ve stopped. I feel very well and consider myself to have had a close shave. I really don’t miss it. Certainly don’t crave it and don’t have a problem with the idea I’ll never drink again. It’s just a fact of life now. If you’d told me that 2 years ago I’d never have believed you. Don’t beat yourself up...he’s a grown man with a problem with drink. You can’t solve it for him, only he can do that. So don’t start taking on the guilt and all the negative emotions that generates. He has the problem not you.

[MrsWorried in reply to Aotea2012]

Thanks very much for being so understanding. Congratulations to you! You're doing so well yourself xx

[Positive001 in reply to MrsWorried]

Yep l get it. It's easier for you in the long run to just let him get on with it. If only he would agree to a medical detox where he would be given drugs to stop the side effects of withdrawral, as they did for my husband twice, but still carried on drinking.

Dreadful situation. So sorry for you.

[MrsWorried in reply to Positive001]

Thanks, he's had medical detox but as soon as we leave hospital the first stop is to buy "supplies". Maybe this time might be different? Who knows?

[Positive001 in reply to MrsWorried]

Hopeless isn't it? Such a waste of time and NHS resorces 🤷🏻‍♀️

[MrsWorried in reply to Positive001]

Indeed. Have a good day yourself x

[redpoint72]

Hello love.

I was also hospitalized with very bad ascites. Diuretics didn't work for me. I was weighed every morning...was hardly eating at the time. I had trouble getting my breath..so they performed 1 of several paracentisis. I think it was about 10 or 11 litres...oh the relief. Slowly but surely the fluid got less.. unfortunately as im writing this, my lower legs,ankles, and feet are gaining more fluid...im awaiting a tel consultation with my gastro consultant .this is despite walking several miles a day. I stopped all drink over 3years ago . My own gp won't increase my spironolactone,as says its extremely hard going on the kidneys. Im afraid if your other half isn't willing to cease the drink,things will slowly deteriorate. Its not an easy task at all to do. Even with me not drinking for over 3years....there are still health problems....something ive just had to accept and get on with. I go to every single appointment with my gp and gastro consultant....anything they recommend i do ,i do it. .

I hope he improves.

My best love.Chris

[MrsWorried in reply to redpoint72]

Thanks Chris, all the best to you xx