Ascites

[c3c31iaML]

Hello, I wonder if anyone has any advice. I suffer from ascites due to decompensated liver cirrhosis. I have a drain every 2 - 4 months, which can only be performed when the abdomen is so solid during lying as well as standing that I can barely walk/breathe.

I am pretty desperate to stop this swelling - does anyone have any advice? I try to eat as little salt and I dare (considering the body needs SOME to survive) and I take 2 x Colestyramine powders in water per day. I have been told to reduce my fluid intake, such as water/cups of tea etc. and reduce it to 1.5 litres per day. I try but I do get very thirsty! I do not drink alcohol or smoke and live as healthy a lifestyle as I can but still the fluid builds up.

Has anyone treated themselves successfully for this? Hepatology are now considering a permanent drain for me which would be great if it helps me manage this myself without constant visits to Same Day care only to be told my abdomen is not taut enough. My cirrhosis is cardiac in nature, and it is this which is exasperating the ascites so hepatology also need to coordinate this with cardiology.

Any advice welcome! Cecelia

[Mango5cm]

hi - my son had a permanent rocket drain fitted almost two year ago and he has Ascites drained every two weeks . He’s also had a TIPS procedure which has reduced the ascities from 12 litres every week to 6 litres every two weeks . You could ask about this stent but you may not be suitable for it due to your heart problem. Do you have an albumin transfusion when you get drained ? Please get in touch if you have any other questions . I do hope things improve for you . Regards Carol x

[c3c31iaML in reply to Mango5cm]

Thanks for your reply Carol, it is much appreciated. It is the rocket drain they are considering for me so I hope it can help, and do hope that it's helping your son,

I usually have 10 litres drained every couple of months, it's getting there now and I am feeling quite poorly with it. I hope they will agree to a drain soon and for the rocket drain. I don't think I am suitable for the TIPs procedure, but I will check on that. I think it was TEER they suggested but I was not recommended for that.

I do have an albumen infusion when drained, yes.

Thanks again so much for your kind reply. Is there anything else your son does to help it? Dietary wise for example?

Cecelia x

[Nerico]

Hi there .I take spironolactone daily to avoid ascites, I only ever had it moderately but hardly get it at all now, it will all depend on personal circumstances and yours is clearly more severe.

When I was moderating my fluid intake I froze fruit juice in an ice cube tray, great for putting your thirst at bay without taking in fluids.

[c3c31iaML in reply to Nerico]

Thank you! I forgot to mention that I take Spironolatone and Furusemide which does help me pee (lots sometimes!) but unfortunately it doesn't tackle it in it's entirety.

Thank you so much for the recommendation for fruit juice - what a great idea. I will definitely give that a go.

I appreciate your reply.

Best wishes, Cecelia

[Mango5cm]

hi Cecilia I was just wondering how you are . Have you had a drain fitted ? I do hope they are finding a way to help reduce the fluid . Thinking of you Carol x

[c3c31iaML]

Hi Carol

Thanks for thinking of me! No drain or rocket drain yet. I was assessed a few days ago and although my tummy is huge, apparently it's not rigid enough to drain it just now. I feel it has to be soon though, as I am very uncomfortable!

Itching has increased lately too, I'm not sure it there is any correlation, or if it is just that my skin is stretched - as the itching is mainly across the abdomen.

I do feel a bit low today, but all will be better once I have this drain I'm sure.

Best wishes

Cecelia. x