Since getting acites quick came on very quickly I don't really know a lot about it, I know you have to limit fluid intake, but doctor at hospital I was in told me no as it would make my  HE worse, does it ever leave as I have heard people say I used to have acites just wondering how they managed to get rid of it, I was also taken off water pills as doc from hospital said they were making my condition worse low red blood cells)  seeing my heptologist in June hope he will have answers as well Thank You All.  Annette

17 Replies

  • Hi, can you clarify this for me? The doctor you mention said not to lower fluid intake because it makes HE worse? I live with fluid rentention, not lots but being a small person, it hurts, all that fluid. I try for no more than 2 literes a day or less. I have fotten rid of very serious Ascites 3 times now myself by swimming in the ocean, drastically reducing fluid and food for weeks. The ocean has an effect of equalizing pressure from its body by pressing againt the fluid in my body. Its called something like Osmotic Pressure. I eat only special foods, very litle sodium. These things help me a huge amount. I cannot take fluid pills because they drop my serum sodium so low it could throw me into coma. I am allowed one once a month or once a week. Its a very tough disease to fight. I will be grateful if you have time to tell me what your doc said about HE and not restricting fluids drastically. Bless you, good luck...

  • Agreed, I had massive acites prior to transplant for three years..fluid restriction is number one on the list..less than a liter a day, and yes, lowwwwww sodium diet. A fresh food diet is reccome dead. Lots of fresh veggies and fruits, etc. 

  • Hi catfishjumping it was the consultant at the hospital I was in that said I must drink and not restrict fluid but I am still restricting to 1.5 litres daily, he has taken away the best water pill I had spirolactone he said was making my condition worse, I presume he was talking about my very low red cells, I was very ill at the time so am not really sure, I would love to do what you do but I can't swim when I get my energy back I will go out for gentle walks, hope that helps can't go yet as my legs feel like jelly when I walk, no hard exercises for me like I used to do 3 years ago because of varices, could you please tell me what you eat as the could help me as well I know what you mean I am only 5.2 and the swelling in my stomach really shows legs also swollen good luck to you also.  Annette

  • Mostly organic grains, polenta baked, oats cooked for an hour slowly, buckwheat cereal, Bob's Red Mill has all kinds of organic grains that are GMO free. No milk, no butter, no cheese. I do not add salt to food. I do not eat spices. I keep sodium at 0 to 700 milligrams a day, no food from tins, nothing processed, sweet potatoes, kale, carrots, red peppers, organic eggs, rarely organic chicken, raw unfiltered honey, currants, dates, raisins, walnuts, oranges, apples, beets, organic bread from health food store, lemons, limes, organic bananas, avacado, pineapple, most of my fruits and veggies I juice so I get huge amounts of vitamins and minerals from them. I try to keep it to 2 liters a day. I still drink coffee but only organic, there are mixed reviews on coffee, I eat lots of organic yogurt. Foods in the U.S. Are heavily sprayed, many are loaded with GMO so I buy organic, its hard work on the liver sorting out toxins, it really cannot do much of that. Dates seem to be the most powerful liver fuel. They are dense so maybe 2 at a time or 3. Lemons clean the liver, the liver loves lemons and dates. Yogurt is easy and helps digestion, it should be organic. I probably eat 2000 calories a day of these foods. I hope I hear if any of these foods make you feel stronger. I am happy to share recipes. Its easy to throw an orange, banana, apple and yogurt into the blender, its very healthy. I keep food simple. If I eat sugar or processed food or anything other than whats stated here, I begin to get ill fast and I begin to have more mental confusion and lots of distention in my entire trunk organs and my organs begin to hurt. 

  • Dear Annette,

    It is very important that you go straight to the hospital if you have huge amounts of fluid. Do not wait until June. You are having to juggle between ascites and HE which means somethings got to give. 

    If you feel poorly - go straight to A&E

    Yours truly,


  • Thank you Pear I certainly will I don't know what to do between HE and Acistes I am still in shock thank you for you kind advice.  Annette

  • Its always very hard for me to steady my mind and health after any dramatic episodes with my liver. I have not had HE but I have had other instances when I almost died, mostly from bleeding as my platelets are very low. Do you have someone tthat can help you even a little right now with eating and rest?

  • Yes I have but I have to lose my pride be humble and ask your right. Annette

  • Yes I know too how that is. I am the same way. Some I ask are poor help actually but some help is better than none when we are truly down. How I wish I had someone to help me that really wants to. Mostly, almost entirely I am alone in this. 

  • Yes I have 2 adult daughters who are burying their heads in the sand, as if this is not happening I have to ask for help, when I think they should know I need it, that's me I suppose I do like you feel alone in this though.  Annette

  • Hi there! I had massive ascites, but without the HE.

    For me, the water pills stopped working.

    They started draining me. I would be drained sometimes up to 19 or 21 liters at a time.  I got to the point being drained every ten days.  Then a shunt was recommended, although I doubt it would be in your case because of the HE.

    The ascites, for me was so dry painful. I had to sleep with pillows on either side of my belly.

    Then I got a transplant. I still had the ascites for 2 months, then it went away. 

    Actually, the ascites has come back and I'm being drained next Monday again. There's fluid in all four quadrants, a substantial amount. I've been feeling sick again lately, exhausted and in some pain, but my kidney counts have been bad..I thought it was that.

    So, I'm not sure. I'm not the norm though.

    Ascites normally stops after transplant.

    But, as I'm sure you've been told, ascites and HE go hand in hand. 

    Cheering you on!

  • Thank you dckimberley oh you poor thing I also thought acistes went away with transplant, have you seen your heptologist, you have been through so much already, acites is as you know an awful thing, my tummy is hard but not massive please let me know how you got on, I was told by my heptologist before I got acistes because I have portal hypertension ( had massive GI bleed 3years ago) that it's likely I could get acites how right he was.  Annette

  • Nods, yes have seen heptologist..I think they are trying to sort it out. They did find some minute blood clots in the portal vein, and I've been taking blood thinning injections nightly, so I really don't think it's that. They said some people take eight to ten weeks to get rid of fluid. But it's weird. And I look like I. Pregnant again, which I just can't

    Are you in pain? Is it in just your belly? Or lower extremities also? 

    Another thing, should you get any shortness of breath..go to A&E immediately. Sometimes the fluid will go around your lung and heart area. 

    When I first got ascites in 2012 I thought I was having a heart attack..that's what brought me in. I thought the weight gain in the 4 months prior was some sort of fluke..or middle age catching up.

    Have you had drains before? 


  • No never had drains Ascites is new to me appeared within 6 months swelling on legs first then ultrasound picked up Ascites lower abdomen now gone up to stomach not in any pain just discomfort. Annette

  • Right, ok. Well, normally they will start with tablets, such as spironolactone, and laysix (not sure what that is called in the UK) and sometimes Lactulouse which is actually very good for HE. 

    Hopefully they will be able to control it with that. If not, they will start the drains. 

    Ascites is one of the illnesses associated with a decompensated liver, but so is HE, as I'm sure you know.

    I don't know a lot about your story. Are you on the transplant list? Or waiting to be assessed? Just curious!



  • Hi my gastroenterolgist is referring me for assessment for transplant I was taken off of sprionolactone but I want them back they were good I daily with lasix was working bit nervous about assessment though. Annette hope you keeping well

  • The assesment will go fine. I can't imagine they won't want to put you on the list. I'm a patient at Addenbrookes, and they have always taken such wonderful care of me.  I even have a drain specialist there, and she is just brilliant! For me, the ascites was the worst thing. I also had Hep C , but was blessed to recieve the new treatment using harvoni for 12 weeks, then a little more than a month later, I got the call! So grateful!

    Cheering you on! Let me now how you get on sweetie!


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