I’ve joined this site to seek some advice from other people who have had ascites due to liver cirrhosis.
My dad has been diagnosed with stage B liver cirrhosis by a liver specialist and at the moment they are trying to manage his symptoms with increasing protein in diet, water tablets and drains.
His first drain was 6.5 litres around 3 weeks ago, then a week and half ago it was around 9 litres. He’s due for another drain on Wednesday and his stomach is huge! Looks like she’s 12 months pregnant!
My question is it normal for fluid to reaccumulate this quickly? Is there anything he can do to stop it refilling so quick?
Will this ascites ever go away or is he likely to be having drains every week or so for the rest of his life?
Feel so sorry for him as he’s so sore and uncomfortable and getting short at breath at times with it. He’s struggling to sleep in bed as when he lays flat it’s worse.
If anyone can offer advice I’d be very grateful as I’m so concerned about him. Thanks in advance
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So sorry about your dad my mum had regular drains her 1st drain was 15 litres then every 2/3 weeks approx 5/7 litres when her drain was due she became disoriented for a while they told her to monitor her weight every 3 days if the figure was going up she was starting to gain fluid again I do believe they can put a tap in to help with the drainage unfortunately it was too late for my mum at that point all the best to you and your dad
Thank you for taking the time to reply. Sorry to hear it was too late for your mum.
He did see a liver specialist up in Birmingham last week (we live in South Wales). They suggested changing his diet and adding some protein shots.
I joined this forum to get some advice of people that have been or are going through it as some of the information online is a bit scary to say the least.
So much I have read says that ascites is end stage liver disease and with the sheer speed that his fluid is filling back up it’s worrying me. However the specialist said he is stage B liver disease, I am not entirely sure what this means. I couldn’t ask as I wasn’t with him at the appointment as mum attended it with him.
I'm sorry to hear of your father's horrible ongoing problems, particularly with regards to the regular paracentesis (drains), for the recurring ascites.
Firstly let me say that things can get better.
Let me illustrate;
I had refractory ascites throughout 2020 with multiple paracentesis.
On one occasion they removed 21 litres.
I can attest to how uncomfortable painful it can be.
Also, I couldn't even put my socks and shoes on myself.
I also became very breathless.
They discovered that in my case, the excess ascitic fluid was pressing up and partially collapsing my lungs, causing atelectasis.
But to answer your question specifically, re advice and what else can be done;
Eliminating the initial cause of the cirrhosis is the most important thing that can be done.
In my case, that was alcohol.
I'm unsure of your father's situation in that regard as you don't mention that.
The diuretics (water tablets) are another key point that you mention.
In my case Spironolactone 400mg and Furosemide 40mg were used when my ascites was at its most extreme.
Getting the right balance of these is important, but your father's Dr's should be all over that point.
Also the 3rd key point is a VERY low salt diet.
It was particularly key in my case.
I didn't eat that many processed foods and meals, but when I started looking at labels, it appears that almost everything has salt in it.
I now try and cook all my meals from scratch (often batch cooking for the freezer) in order to keep the salt as low as possible.
I was also advised to increase my protein levels which also helps reduces the ascities returning so quickly.
Further down the line, I was informed about possible TIPS procedure if all the above actions didn't work. Luckily for me they did.
Whilst my ascites was particularly bad I used three pillows to help sleeping. Now back to just one again.
Now my ascites and leg edema are managed, although I still take Spironolactone and Furosemide albeit at lower doses.
If you haven't found it yet, I would definitely suggest you look at the brilliant British Liver Trust site.
It was a game changer for me with regard to finding out reliable medical based advice and information.
There are useful virtual support groups (I belong to two of them) and also really useful specialist nurse lead helpline.
If you have further questions, ask away. There are loads of people on here, with experiences that can help you and your father.
Thanks so much for your reply and for the tips and information you have shared. I appreciate it.
It is reassuring to know that things can get better as everywhere I’ve read online it says ascites can’t go away and that it is a symptom of end stage liver disease
Wow 21 litres is a lot, I can’t contemplate how uncomfortable that must have been for you.
My dad also sometimes has issues with putting his shoes and socks on, not helped by the fact his legs are often swollen too with the fluid retention.
We are unsure what has caused the cirrhosis in the first place to be honest. He said he did drink alcohol heavily in his younger years (he’s 63 now) but since then has just been an occasional drinker really. He doesn’t drink alcohol at all now since the doctors advised that he shouldn’t even have the occasional drink.
Unfortunately he does eat a lot of processed foods due to the convenience of them. With him being tired a lot he often doesn’t have the energy to cook things from scratch. This is definitely something he can work on and I will help with if I can. Is there any specific meals you can suggest that are low salt/easy to prep? I don’t live with my dad but If I can get some info on meals that would be good for this condition I would be able to help prep/cook them for him if needs be.
It is shocking how much salt and sugars are in things that we wouldn’t even expect isn’t it! The doctor also mentioned to dad about eating protein rich foods and to make sure he’s having at least 3 meals a day with healthy snacks in between. They have prescribed some protein shots also.
I’ve not heard of the TIPS procedure what does that entail? I know they said they could look at possible transplant in the future but my worry with that is that he has so many pre exisiting conditions that he may not be eligible for the surgery.
Great to hear that your Edema and ascites have improved now.
Thanks for the suggestion for the liver trust website I will have a look at that.
I appreciate all the advice and support that has been given to me so far by you and the other kind people who have responded.
I just hope we can get dad to better health as it’s not nice seeing him in so much pain and discomfort.
Hi Kelly.I can see some other members of this group have already shared some of their useful experiences, which hopefully you can use going forward.
Regarding your question regarding TIPS;
Its full name is 'Transjugular Intrahepatic Portosystemic Shunt'.
It is a procedure simply put, whereby a small tube is put between the Portal and Hepatic veins in the liver.
They do this to let some of the blood that flows through the liver, to bypass the liver, using the "shunt/tube".
It is done to reduce the "portal hypertension", which is the main reason for your father's ascites and associated problems.
I'm sure at the upcoming appointment you mention, the consultant can answer any specific questions you may have, if TIPS becomes an option for your father.
Regarding your meal plan-dietry request;
In general, patients like your father with cirrhosis, are advised where possible, to try and adopt a low salt Mediterranean style diet.
Especially the low salt element, with additional protein.
Ideally 4/5 "smaller" meals across the day, with a bedtime snack containing some carbohydrates.
Personally, I'm vegetarian, almost vegan.
Therefore my specific diet plans will be of limited use to your father, unless you get back to me and tell me he is also vegetarian?
But I can suggest something that may be of particular interest to yourself on behalf of your fsther.
Coming up very soon, The British Liver Trust have arranged for a Zoom meeting with a specialist dietician input on Wednesday 16th April @ 6.30pm.
It will give you an opportunity to hear the best specialist advice for someone like your father.
If you drop a quick email to the address below with a short explanation of your situation, mentioning you heard about the meeting from here, they will send you a joining link email by return.
outreach@britishlivertrust.org.uk
I hope the above information may be of use.
If you have any further questions, don't hesitate to get back.
Thanks again for the info you have put there. It is very useful. Yes I’m sure if the TIPS procedure is an option for my dad that the consultant may mention it.
He isn’t vegetarian no, the problem will be getting him away from the processed foods! For example, I asked him yesterday what he had to eat for supper and he said some boiled potatoes, mixed veg and tin hamburgers in gravy! The boiled potatoes and veg sounded good until he mentioned the tin hamburgers as I know they are full of additives and highly processed.
I will look up online some info on recommended diets for people with liver cirrhosis and see if I can suggest some meals to him that may help.
Thank you for the info about the zoom meeting I will definitely email them to ask whether I can join in with that on my dad’s behalf. Any info/advise I can get will be useful I’m sure.
He is under the care of medical day unit at our local hospital so it’s there he goes for blood transfusions, fluid drains etc. I have a feeling that a call will need to be made to them tomorrow to see whether they can do the drain sooner than Wednesday as he looks very uncomfortable at the moment!
I appreciate the responses of you and everyone else who has replied so thank you again!
Hi Sorry his going through this and your family x my dad is in the same situation,.
He too had draining every couple of weeks until they upt his water tablets and then they got control of it. Not everyone the same but hope this helps x
Hey, thanks for your reply and sorry to hear your dad is going through the same thing. Good to hear that they’ve got control of it by upping his water tablets.
I’m unsure what dose my dad is currently on but he does have a review with the liver specialist in about 7 weeks time so hopefully they’ll decide what they can do next if no improvement.
So sorry to hear about your dad. Everyone is different and every hospital is different in how they manage the diuretics. Ascites are horrible and the drains range from mildly uncomfortable to excruciatingly painful according to my husband. He had his first drain of 10l in 2023 when they discovered Peritonitis. He was put on a prophylactic antibiotic but has since become resistant to it. He accumulates roughly 10 l every 2-3 months and is on a low dose of spironolactone 50-100g. This is stopped every so often to allow his potassium levels to drop and his kidneys to recover enough from the diuretics to allow them to do the drain. He has had a couple of UTIs , one of which became sceptic. At that point the Fuorsemide was stopped. In between this he leads a pretty normal life. We even get to go away in our motorhome .He was told the only way he might be able to stop this is a low salt diet and/or TIPS procedure. Unfortunately he loves salty, processed food and finds it really hard to give this up on top of the alcohol and smoking. The idea of TIPS frightens him as it involves surgery and can cause HE where ammonia builds up in the brain but that can be managed. He was also offered a continual tap which he might consider if it gets worse.
So there are a few options to reduce ascites. I hope your dad can find the right solution for him and get back to leading a better life. Take care.
Hiya, thanks for your reply. Sorry to hear your husband is going through the same thing and hope he continues to improve in the future.
Good to hear that there are other options available to try and combat the ascites. My dad is very much similar to your husband in that he likes salty processed foods. He is a bit gutted that he can’t even have the occasional drink now but I think a change in diet would have the most impact with him. X
Hi, from another South Wales liver patient, also treated at Birmingham.
In my case I was vomiting up blood in 2018 from varices, which put me in hospital locally (Newport) for about 4 days, All fairly steady for a couple of years, then during the pandemic, realised I probably had ascites so went to see the GP. I think they gave me some meds--can't remember what maybe Spiralactone? I was then referred to Birmingham, and shortly after had a transplant assessment. Never had to have drains. I was on the transplant list for about 15m, having my transplant in Sept 2022. I have been very happy with the care I have received locally and at Birmingham.
I wouldn't say it has all been plain sailing, but I am still working (admittedly part time) at 67+ --my choice and I am still enjoying life. Good luck to you and yours, I hope it works out for you all.
Great to hear that you had a good outcome in the end and that the liver transplant worked well for you.
These stories give me a little bit of hope that dad can improve! The liver specialist in Birmingham did say one thing is for certain is that he’s a very ill man but they will do what they can to help.
Good that you never had to have drains, they did try dad on just water tablets initially but the ascites keeps occurring. Maybe it’s a case of needing to amend the dose alongside diet change….
So happy to hear your able to still enjoy life! Thank you so much for replying
hi so sorry for you . Just to add to all the great advice sometimes with ascites they do suggest fluid restriction but you’d have to ask the medical professionals about his individual case. It is indeed possible to turn things around.
I really feel for your dad...I too suffered terribly with ascites last year....I was being drained every week and was then OK for about 2 days then would swell up again...I was so depressed and distressed as I was spending at least 4 days per week in bed. I was then recommended for the TIPS procedure in the July and it's been an absolute like changing procedure...I have not had another tummy drain but due to another illness a couple of drains from.the plural cavity...not had one now since new year eve !! That was due to being very ill with a totally unrelated illness. The TIPS procedure is not without risk but without it I honestly don't think I'd still be here as I was so depressed...please ask you dad's consultant if it's a possibility...good luck
Thanks so much for sharing your experience and I can imagine that having this condition with the associated symptoms would make you depressed.
I know my dad does have his low days where he is fed up of not only being in pain, uncomfortable and tired but also the regular trips to the hospital. He is there at least 3/4 times a week at the moment with the drains and other conditions he has treatment for.
I’m so glad the tips procedure worked so well for you, that’s great news.
I’m not sure what they can offer my dad in terms of other treatments going forward as he has a few pre exisiting conditions which makes any kind of surgery very risky.
One of the conditions he has is Gastric antral vascular ectasia (GAVE) which is nicknamed watermelon stomach which causes chronic upper gastrointestinal (GI) bleeding.
They wouldn’t operate on him for this condition due to GA being risky. He has anemia as a result of the GAVE. He also has sleep apnea.
I just hope they can do something for him going forward.
Having Ascites is very unpleasant. Before my liver transplant in 2017 over about 4months I had a massive build up of ascites fluid and I looked like pregnant man. I found this very unpleasant but the Royal Free Hospital London were unwilling to do interim draining because any incisions for draining run the risk of infection. After my op the surgeons had inserted a drain which took a couple of months to run out. I've been left with a round scar in place of the tube. So basically the healthy liver stopped the ascites. Not had a repeat since then thankfully.
Thanks for responding and sharing your experience. I’m so glad you are doing ok now and that the healthy liver is working well for you.
Did you have long to wait for a liver transplant? I’m not sure yet if this is possibility for dad due to pre existing conditions having an impact on whether they’ll risk surgery.
Sorry to hear about your Dad. I was in a similar situation 8 years ago, but things can get better. Obviously if it is alcoholism related then sobriety is a must. It is not easy, but with support it is achievable. I have seen your responses and they have provided sound advice. What I would say is whilst he has ascites if his behaviour becomes confused, and or you don't think he is himself take him back to A&E. They can monitor him and review him, without awaiting a specialist appointment. Good look for the future, I hope all works out well and please look after yourself too.
Feeling very confused and low tonight, been really teary. Mum sent me the letter of the report the specialist doctor wrote from Birmingham.
It has a load of technical jargon in it that I don’t really understand but from what I can gather it says Dad has very advanced stage liver disease with the cause being MASLD. It states that they can’t carry out certain procedures due to his other health conditions and that a liver transplant currently is out of the question due to him not being strong enough.
It feels like a shock seeing all this is black and white and I’m confused about what this means. Does it mean he can now never get better? Am I going to lose him soon? I can’t bear the thought of losing my dad 😭
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Can I give a little hope?
1st consult questions to ask please 
Post Hospital Admission Appointment?
Signs things are getting worse?
cirrhosis and edema / ascites 
