Scared

Can anyone tell me why people are on lactulose and what it does? I think it is a stool softener? Also I am worrying about what sort of liver problem I have. I had slightly elevated ALT and ?AST 6 months ago and an ultrasound 5 months ago showing fatty liver. The doctor told me to loose weight. Since then I have gradually given up alcohol, all refined sugar and all but the smallest amounts of fat in my diet. No junk food at all. Have also recently given up diet soft drinks as they seemed to make me feel worse. What's worrying is that I am still getting pains around right side of back and sometimes right in the middle (is that the pancreas?) and occasional stabbing pains on the left under the ribs. And I'm either constipated or have loose stools that stick to the toilet bowl (sorry for TMI!) I am worried because I thought I should feel better after getting healthier. Does this suggest I already have cirrhosis or it's a hepatitis virus? Do they have to do specific tests for those? I am going back to my GP in a month and hopefully will have lost even more weight then. I need to do more exercise but I sprained my ankle 4 months ago which has meant I can only do walking and swimming but I am fairly active all day anyway. I get bad anxiety about it sometimes, was on a verge of a panic attack most of the weekend, so much so I was worried about my blood pressure. I had thought I could reverse my fatty liver and 'go back to normal' but it's increasingly looking like that's never going to happen. I suppose I'm scared. Would be grateful for any advice anyone has to offer.

14 Replies

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  • Lactulose is a stool softener it is also a medicine to remove toxins from our bodies. The pain on your left side could be your spleen as when liver struggles with fat it also effects the spleen, it doesn't mean you have gone past any point, if you are making changes it can be reversed if you was diagnosed fatty liver it just won't happen overnight so don't give up hope 😀

  • I am afraid I can't help you, but am also interested in any answers. I have similar problems. But with severe eating disorders for over 40 years. At the moment approx. 8 st. but has been up to 14 st. or even down to 7 1/2 stone. Binging a great problem at weekends. Loads of chocolate, crisps, cakes etc. Was diagnosed fatty liver after 8 years alcohol abstinence !!! Now and again have a drink again now. Doctors said in moderation was OK !

  • I have been recently diagnosed with cirrhosis - alcohol induced - I know that it's not the same as you but two gp's told me after my first attack when I was hospitalised for three days and they drained 10litres of fluid through my groin, that it was ok to drink in moderation - no such safe thing - I have gone dry - for me and it seems lots of people on here it really is the only way to go

    I can imagine that it must be really difficult for you foodwise, I really struggle to even attempt to eat healthily, I recently bought some kiwi fruit but as my sister pointed out actually eating it would have been more helpful, rather than just giving it a lift home from the supermarket and a short trip to my kitchen bin !!

    I find the people on here a great support, wish I'd found it sooner

    all the best xx

  • Thanks so much for all your replies. Lottie - that sounds like you've had a really tough time. I'm sorry to hear that. Can I ask you what happened when you had the 'attack'? I wonder if I have fluid. I have lost weight but not so much off my upper abdomen (which used to be the first to go flat when I've lost weight in the past before). I have been a size 12-14 most of my life but went up to 16-18 over last 2 years when I had 2 children under 2 at home and some relationship problems. Things better and have gone back down to a size 14 over last few months. Have been eating very healthily though a lot of fruit which I know is sugar. But i went on holiday 6 weeks ago and drank one or two drinks every day and ate puddings etc. Symptoms came back. I think I ate too many nuts last week and it really upset my stomach. I think I need proper nutrition advice and to persevere as the other reply said. I crave something to lift my mood, I know that is my problem. I don't drink tea or coffee so used to get my caffeine highs from chocolate or at least Diet Coke! Now that's banned too. It's hard!

  • Hi Violet

    to be honest it all sort of crept up on me I actually for a long time I didn't feel ill at all. I also resented the fact that my sister kept gently pointing out that I didn't look well and was a funny colour. Anyway to cut a long story short one morning I looked in the mirror and thought ****! sallow was not the word. I had always been a comfortable size 12/14 now I was ENORMOUS, huge stomach, tight and painful, swollen ankles, although I ate I would vomit because the food had nowhere to go just sat on the fluid, I know that now. But point was I was actually starving as I wasn't absorbing any nutrients, my arms and legs were like sticks. Red spidering on my chest. Got to the state that my bowels were terrible, I was vomiting blood, nosebleeds, breathless, couldn't turn over in bed because I was so swollen, terrible pain in my left side because my organs were being constricted, yellow as a banana. During this time my gp did 2 home visits and all he did was prescribe lactulose and bloodtests which showed jaundice and my other levels were off the scale. Finally suggested an ultrasound which he said I would have to wait 8 weeks for. Anyway, got so ill saw senior gp partner who referred me for an immediate ultrasound and the next day I was admitted to hospital, where I spent 3 days having 10litres of fluid drained through my groin and lo and behold I could breathe again ! Also treated for a couple of infections and put on spiro which I still take although now I am down to 100mg per day. First time the consultant visited he asked me whether I was on his transplant list ! I was scared absolutely witless but I got over it. Was discharged, kept up with the meds, was weighted every week by my gp (the senior one, I think they were afraid I was going to take action against them for negligence), in a month or so I recovered. I had previously given up alcohol but stupidly went back to my wine, two years later almost to the day I had another attack, not as serious but still a MASSIVE warning sign, fluid, jaundice. Am now completely dry, have accepted my diagnosis of cirrhosis though I fought hard not to because I truly didn't want to face facts. I still suffer from anxiety sometimes but try to keep active and try not to weigh myself five times a day and check my face CONSTANTLY. I do not consider myself an alcoholic but I was a VERY heavy drinker in the past. I knew that I was developing a VERY serious problem when I started lying and hiding my consumption from my family to avoid the 'but why do you drink when you know about your liver ......' I know that there are loads of things that can affect your liver but for me it was the alcohol. I still miss it, can remember the taste of the chardonnay now but it's not worth it. Sound to me like you need a good nutritionist, ask your gp (no, actually tell them) you need a referral. I know that there is loads of advice out there on the net and somehow 'everyone becomes an expert' but I think that you need some professional guidance, you can then implement their suggestions to your own body's needs and I actually understand that you're allowed to eat things which you like.

    Off to steam clean the kitchen floor, a great anxiety blocker for me and my little rescue Yorkie is slightly incontinent, so it's proved to be a win/win situation ! There was a time when I felt I couldn't enjoy anything, I was ill, severely bloated, desperate and escaped serious organ failure by a whisker. Today the sun is shining, embrace it.

    PS. Roger Moore, you were a massive part of my childhood, still remember ' The Persuaders' with fond memories, long before 007. RIP you lovely guy.

  • Hi violet.. I am so very very similar to Lottie in so many ways .I have been living with cirrhosis 9yrs now , I was a drinker, socially oh and holidays were the worst! We used to start at the airport. My drinking then became my crutch due to a now ex husband 😉.whom beat me black and blue and mentally abused me on and off for 20 years. I was a manager of a travel agent. Loved the job and visited so many places. To cut a long story short, I became dependant on alcohol. It all came to a head when I noticed my ankles were swollen and I was not eating due to no appetite through drink. Then I started getting pain in the stomach area and I was being sick even though the only thing I was fetching up was booze .I never touched spirits so I put my cirrohsis down to long term drinking and I was also told I had malnutrition. I was given a a scan and was told I had cirrhosis. It didn't really sink in at first so I carried on drinking only because I was dependant. Within 3 weeks I started loosing blood ; and I looked 9 months pregnant could not breathe; sleep or even walk. I was admitted in to hospital where I remained for 6 weeks; 3 drains, lots of scans etc... and here' I am. Still alive due to trying to watch what I eat. Low salt; high protein , non smoker as I stopped when I watched my dad go through cancer of the lung which went to the brain (( very hard times)) .I do however have a terrible taste for chocolate lol .I have cut down thid week but that could be due to the weather? Or the lactulose making me bloated 🤔.. my advice would be to go to your gp, voice your concerns and make sure they do whatever to get you answers. Good luck! Linda 😊

  • When I first became seriously ill it believe it was triggered by a bowel problem. I made this worse myself by taking LOTS of over the counter medication to make me go, stop me etc. For me lactulose worked, it was a immense relief (sorry) to find something that seemed to do the job without making me feel like I was trying to pass a concrete slab. I know that some people say that it gives them wind but I don't have that problem. I had suffered terribly from IBS in the past and this was made worse by a rubbish diet. The best thing that has worked for me is walking and I loathe exercise but I do have a very sturdy little doggie who loves the park! Swimming is great though, well done. Also, I found that hot drinks especially coffee triggered bowel problems, herbals teas are a better alternative. I had massive anxiety attacks, especially at night, for me housework helped - yes really - it lets your mind free and gets rid of all that negative energy and you see a positive result afterwards. It is very difficult when you have abdominal pains I too get an occasional pain on my left side under my ribs, is it posture or my cirrhosis, you could drive yourself mad thinking about it. If you're worried go back to your gp and explain things, if he's any good he will see that you are making a real effort and give you the credit and support that you deserve. I too was frightened, afraid to getting the diagnosis and terrified afterwards, went through the usual period of 'I'd rather not know' and initially rejected the diagnosis of cirrhosis but I have now accepted it but I have also accepted the fact that I can do something about it. There are loads of really brave people on here, willing to share their experiences and support, draw on that, I find it a great comfort.

    Wishing you well xx

  • I take Lactulose as well. Started out on the Liquid but it was SO SWEET so my Dr. changed it to a Powder. I take it a little different than the liquid but it has helped me lots. It does give me gas though but that is ok.

  • Honestly you need to chill. It's not all going to resolve overnight it takes time. There are far worse things going on in the world.

  • Hi. Yes the lactulose is part of the stool softening process and in doing so it helps the body get rid of toxins. I must admit I find the lactulose quite difficult because my total thought process is 'where is the nearest toilet'. This makes me quite miserable.

    whether or not you have cirrhosis is not just decided by one or two test results but I think you have done the most important part - stopping the alcohol. I have drunk no alcohol since the early 1990's and even then I was only a light social drinker. Do keep up with this.

    You will lose count of the number of times that you say to yourself that life is just not fair, but do persevere. I similarly was a size 10 / 12 but now have a barrel shaped body. I have hepatic encephalopathy and have been stopped from driving by the DVLA - not easy when I live in a village with virtually no bus service. I was widowed 3 years ago, and have been going through a bad time psychologically recently. My siblings and children are scattered world wide - when he was alive my husband would always have been there for me. I am constantly amazed how far my children travel to attend my out patient appointments with me - but I do not like to rely on their good nature.

    Remember we are all there for you - and having a good moan sometimes can help! Good luck.

  • It also attached itself to the toxins that your liver can't filter out. This prevents the toxins building up on your brain & causing episodes of HE - hepatic encephalopathy, quite scary

  • I was told that a fatty liver was normal for my age (69). I was given no advice as to what - if anything - could be done about it.

  • Hi. People take lactulose for different reasons. It is used for travelers that get diaherria for those. People who have cirrhosis of the liver often take it so that it makes it easier to go to the bathroom and taking that drug is supposed to help your liver in filtering out waste. I was taking the the liquid but too sweet. My Dr. put me on a powder and it is so much better and does not taste bad at all just in a small glass of water. If you have not seen a Dr. that can tell you if you have Cirrhosis you really should so as to know what is going on. Fatty Liver is a sign and some say it can be part of the cause. If you drink you need to stop all of that. You can do things to maybe help you from it progressing fast . I have known I have Cirrhosis for 10 mo. Lots of Protein is good for the liver. My Liver Dr. told me to cut was down on sodium. Read labels because things like ice cream does have sodium. She told me it is best to read your labels so you know and a lot of the packaged and canned food have a lot. I tire easy and have real problems sleeping at night but I cannot sleep in the day either. Make sure to ask about any other meds you are taking is ok for the liver. I have osteoporhsis in my feet and arthritis and my foot Dr. gave a med. that really helped the pain and the inflamation and he knows I have Cirrhosis and it said it was ok. Liver Dr. said NO. Be careful of Herbal stuff too. Even if it is all natural it does not mean it won't hurt your liver. I take Milk Thistle but not the one that has anything else in it per Dr. I have been getting some of the pain you are describing but My Dr. said It could be from my ulcers, but it moves around. Had an Ultra Sound and blood work showed nothing getting worse. Hope you can see a liver specialist. My GP sent me to mine. Hope this helped rather than confused you. Good Luck and let me know what is happening if you want to. I am a very good listener.

    Coleen47

  • Thank you that is very useful information particularly about the protein. I spoke to a dr at my gp yesterday and she has ordered more blood tests. She was pretty dismissive about the pains though. She said they are probably muscular skeletal. I will make an appointment with my normal gp to discuss the blood tests results and try and push for another ultrasound. I am being very careful what I eat/medecines and not drinking. I would rather have a boring life than being chronically ill! If nots too late already!

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