Hi there, just wondering if someone can give me some advice. I have cirhossis and portal hypertension and previous banded varicies and since giving up alcohol I seem to be addicted to water. Have had this problem before when I swap one addiction for another. (Never taken drugs, just alcohol). I drink 3-4 litres of water plus coffee in the morning and soya milk per day and have a swollen stomach (obviously due to fluid). I have mentioned this to hepatologist and GP who were not concerned. I read something on here a while ago that said 1 litre max per day when prone to ascities. Am on 80mg furosimide and 50-100mg spironalactone. I am trying to suck on a sweet instead of pouring a glass of water today but keep getting told "drink plenty of fluids". Any advice on safe limit would be very helpful. Am aware of the dangers with electrolytes as was hospitalised 10 years ago before liver disease due to water addiction but I still do it! Thanks very much,
jules
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jules45
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My hubby has cirrhosis & portal hypertension. On diagnosis he was put onto a daily fluid limit of 1500ml a day (in hospital it was rigourously measured) to prevent ascites. He has never had ascites and has never had water tablets of any description. His consultant at transplant unit said it was ok for him to up his limit to 2 litres during hot weather and that was the last we ever heard about a limit.
With your bladder issues on top of the portal hypertension I think i'd be worried about drinking too much ......... another question for your liver consultant at next appointment.
Hi Katie, thanks for info. I do worry but I just can't help it. It's like I get the feeling that I used to get drinking my first glass of alcohol - utter bliss, then I look down on my stomach and think was that third bottle of water really worth it. I will pursue the issue with hepatologist next month when I see him and perhaps if someone official tells me then I should hopefully take heed. Have an ultrasound on my bladder next week about that issue just to update you. Hope you are both okay.
I was definitely restricted to 1000 to 1500 ml a day when I had ascities. But like you, I couldn't stop drinking water and tea. I was craving cups of tea. I could easily survive on that amount of fluid now but it drove me half crazy when I had ascities?
Makes me wonder if the liquid is not being "digested" properly and perhaps just contributing to the ascities rather than hydrating.
Hi, glad someone else has had the same problem. I agree and think my fluid just 'sits there'. I was catheterised for nearly 4 months as my bladder was holding 3.5 litres that wouldn't shift. Now I'm left with a stretched bladder and due a scan next week. Been told must self catheterise for life regardless of scan results. I just find that 'hand to mouth' habit hard to break. I think you are correct with 1000-1500ml per day but I will ask hepatologist again when I see him next month and perhaps I will listen to what he says. A lot of people say "at least it's not wine" which obviously is good but it's just bothering me as I know it is far too much. I appreciate your time in replying to me. Thanks
Definitely had that problem. I'd be up to all sorts just to get liquid that I thought might not contribute, oranges, grapes, ice lolly's. And after transplant the first thing I wanted was ice, I remember in ICU I was asking for as many cups of it as I could get, although they were reluctant.
But on a serious note I think it's important, do your best.
Hi again, you just brought back a memory of when in hospital due to electrolytes (water addiction) I was on fluid restriction and I would try all the tricks in the book. Going 'for a walk to stretch my legs' but secretly sneaking to the vending machine, but worse than that asking each patient in my ward if they had finished their jug of water and drinking theirs. That was bad but the nurses regularly topped them up but not mine. You have certainly brought back some memories. Gosh, I didn't know you've had a transplant. You must have loads of stories and experience to share. When did you have it and what caused your liver to fail. Mine failed twice but not near transplant stage as far as I was last told. My liver function was 125 which is the best it's ever been and will get no better than that and I constantly check the whites of my eyes but my stomach will only go down if I cut down the fluid. I do actually get thirsty though I'm negative for diabetes. Keep in touch and thanks for the trip down memory lane
I had my transplant about 16 months ago. In many respects I was lucky as I had cirrhosis for about 15 years but when my liver failed it got very bad very quickly. This ment I only had about three months of ascities, jaundice etc... I know it can be horrific. I had all sorts of very embarrassing things happen to my body.
I know some of you guys have these symptoms for years, so I really feel for you.
My liver disease was called cryptogenic which means the cause is unknown.
Wow, only 16 months ago. I was told a transplant would be needed within 5 to 10 years in 2010 but touch wood things are just so so. Yes, some embarrassing symptoms but I'm getting slightly used to being asked questions about bodily functions and the catheter was the worst invasive thing anyone prudish like me could go through. I've been told that my liver could shrink at any time so I just take each day as it comes. Have been to dentist today and even dental treatment ie, extraction holds risks due to clotting issues as I learnt to my peril last year. Simple procedures can become a major issue and I sit and think what is all the fuss about but on paper I am quite poorly.
Yes the catheter thing did sound quite alarming, is that something that will improve if you have a transplant?
I was told 5 to 8 years but managed 15. And for the vast majority of that 15 years I was in major denial. I didn't change one thing about my lifestyle so diet and drinking continued. It wasn't until about a year before transplant I stopped drinking although I have to stress my cirrhosis was not caused by drinking.
Hi again, the urologist said my bladder problem could be linked to ascities but I wasn't given the time at the first consultation to ask him to ellaborate. He wasn't a man with any warmth or empathy. Due a pelvic scan on 23rd which may shed some light although there could be many reasons. 15 years was good considering they gave you 8. I wonder how long I have got with this liver. Am trying to look after the part thats working but it has stopped doing certain jobs within my body so its only doing the necessary functions.
Thanks for your replies and you have given me some hope, keep well, take care
Hi I relate to feeling thirsty all the time and having to drink constantly, the water tablets make you thirsty my GP prescribed a spray for dry mouth called glandosane maybe it'll help, worth a try to minimise fluids.
Hi, thanks for replying to my post. Hope you are well. You have given me some very useful information and I am definitely going to see my GP about getting it asap. Thank you so much for that. Very helpful.
Hi, I had same problem. My tip is to measure out 1.5 ltr into jug, and when you pour into glass use a straw to drink (you don't take so much). Also I leave my glass on kitchen counter, so only drink when I go in there. Take care, Anne X
Hi Anne, thats a good idea - putting water in the kitchen so I get excersise walking backwards and forwards to the kitchen and restrict fluid at the same time. I've been trying my best since my initial posting but evenings are still problematic. Oh well - keep trying
As well as sharing our names, it seems we have a commonality regarding our liver! I have Cirrhosis - mainly due to alcohol but also I have HH (haemochromatosis). I am not diabetic but I drink loads of Diet Coke or cups of lemon tea all day long. I have varices - not needed banding yet. I have Ultrasound on my liver bi-annually & also endoscopy ( varisces are oesophogeal). I take propranolol 40mg×2 daily; Omeprazole 20mg daily; thiamine 100mg x2 daily. My abdomen does swell although I don't know whether that's from fluid. I am a totally addictive person & seem to go from one addiction to another - gave up Alcohol pre-Xmas 2013 & began ice-cream, then biscuits, then cheese, then tea..... more recently it's diet coke, lemon tea. I did drink some alcohol recently but this was to prove to myself (somewhat riskily) that I can control it, however I am now back with lemon tea & diet coke. I have to say that the Consultant doesn't seem concerned about my abdomen & i'm not on water tablets. No-one has mentioned Ascites of which I know nothing other than a small bit I have read!
Basically, it seems that if you need to find any info out then you have to do some digging yourself! Thank goodness for forums!
Hi julie, thanks for reply. I also have an addictive personality not helped by members of family on both sides drinking themselves to death. Have had varicies banded (6 last year). Ascities is when fluid collects in the cavities in your abdomen making stomach swell and creating pressure on other organs. (thats just a non expert description). I had 7 litres drained in 2013. Without the water I would probably drink again. Im on water tablets,(furosimide and spironolactane) thiamine, morphine, sleeping tablet, thyroxine, Vit B, Lanzoprazole, but nothing to reduce portal pressure. Have had some good advice regarding my post so am going to try to wean myself off the quantity but evenings are the worst.
I'd leave the Coke alone without question, it's full of sugar/sweeteners. I am no expert but I know from what I have researched that sugar is no good at all for anyone's liver, certainly a poorly a liver.
I believe that the liver likes pure lemon squeezed into a small glass of water, but I take that just once each day, I drink water through the day on a regular basis.
I am ne ear off the loo, get up at least 2/3/4 times a night, but I don't sleep anyway.
I follow this community as my Dad,and my Brother had liver disease when they died, and they liked a drink, and unfortunately for me so do I.
I have drank wine in harmful amounts for 20+ years, I have had scares, but so far have diagnosed fatty liver.
Since that, I have lost weight, exercise every day, changed my diet completely, and I only drink when on holiday or a special occasion, so maybe 6 weeks of the year.
I am doing very well and feel a lot better for it, but I'm not stupid I know I can still end up with cirrhosis, just live in hope, that's all we can do.
I gave decided that all you can do is your best, at least your attempting to apologise to your liver for what you have put it through over the years, and hope it just might forgive you. Good luck and health xxx
Hi, what a positive reply, I wish I could only drink for 6 weeks of the year. Christmas time I was offered a Baileys by next door but I knew I would get a taste for it and go and buy a bottle 'because it is xmas'. Then the next day I would need a hair of the dog and so on it goes. I think I have drank every type of alcoholic drink that exists but it was vodka and wine that did the worst damage. I live on my own now so my abusive partner can't dictate how I live my life so I try to eat small healthy meals, I see a dietician, who told me most of my excess weight is fluid not fat and to eat more fruit. Obesity and alcoholism run in the family and I didn't get the obesity - quite the opposite but I am hard on myself with my diet, no meat or dairy. It seems that your doing your best in your way and Im trying to do mine. I hope you don't get cirhossis. Seeing hepatologist next month and I have so much to ask him but I have to go on my own due to lack of family so I can't always take all the information in but I shall try like I did last time.
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