lactulose: To everybody who is late... - British Liver Trust

British Liver Trust
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lactulose

To everybody who is late stage cirrhosis and taking lactulose,could you please share your experiences:

My partner started it a few weeks ago (again),because he gets constipated sometimes,but very soon he started to get symptoms like gases,pain and discomfort in stomach area.Could it be connected to lactulose? And another question,has anybody with similar condition tried to take any other laxatives?

thanks a lot in advance

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Lactose causes excess wind you can get tablets from the chemist for getting rid of it if he still struggling to go to the toilet with the lactose his gp may prescribe enemas I needed them even when I was downing half a bottle of lactose a day

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Yes,I think he has gases because of it.Thanks a lot as usual your answers are very helpful!

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I gave up on it, as it did not agree with me. I ate fruit and berries by the bucketload. I told the doctors and they were happy, it had the desired results. I was end stage decompensated, now transplanted.

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Many thanks and wishing you lots of health

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My partner hated the stuff. Called it " The Devils' Brew ".

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Well,he was right on the mark about it.

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It has two purposes one is for flushing toxins out of your gut so your body doesn’t ingest and in helping to avoid HE and the other is for Stopping you from becoming blocked down below so you don’t rupture any blood vessels (varicises).i had has all the above symptoms like gas,pain and generally feeling bloated prior to taking it.id persevere if I were him but everyone’s different.at the same time it’s a nasty thing to take.best wishes.paul

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Thanks very much Paul,I just think now he is taking too much of it, just need to figure out the right dose.So there will be no "occupy loo" movement in our house:)

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Hi thewayforward,

My husband's liver doctor said that the ideal is to have 2 to 3 bowel movements per day on lactulose.

Just to let you know - this is just my opinion! - my husband is one of those people who if he has a decent breakfast will not eat lunch, then he'll have supper. Well, one does need bulk in order to get rid of something LOL. His doctors do tell him this, but it doesn't really change his appetite - so I just nag.

Hubby does get gas - a lot - I guess I never have found anything to help that.

Best wishes to you both,

Mary

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thanks Mary,and yes it sounds familiar!

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20ml was enough for me but i still ended up with HE at the end before I got a transplant but very mild.and I did myself being the Hercule poirot of stool investigation lol.perhaps that was just me.wish you both well.paul

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Many thanks,dear Paul

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I was prescribed it but I didn't need it because I didn't have HE (despite my cirrhosis). The "doctors" that prescribed it had me taking 45 ml a day. I was in the bathroom constantly. It was disgusting. I found a good doctor and stopped taking the stuff. He said it was unnecessary. One of the better things I've done for myself.

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That's the thing.You've got to find a good doctor,but usually you are treated by a 'team' that doesn't know you,every time you come it's somebody different that tells you a different thing.So you learn from your own experience

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Hi there,

At one stage I was taking, what shall we call it?? ‘ (that stuff’ works)’ was prescribed to me in one variation or another 16 times a day. Lactulose, lax something and senna just because I was taking so many painkillers for something else, but they never really worked for me. Going 2-3 times a day was never going to happen and if I wasn’t going after 2 days it was enema time. I never understood how clearing everything out, having only hospital food, never eating enough to warrant being full enough to actually need to go to the toilet worked, but there you go. I never had wind or anything because I wasn’t eating enough to need to go. After I came out I just kept a bottle by the side of the toilet and had a swig of it every time I went to the toilet and that seemed to work better than taking exactly xx ml of this xx mls of that. I hope you get it all sorted too as I know I felt a bit stupid that I couldn’t just go and do a natural movement on my own. Good luck.

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That's the thing.Everybody needs his own approach because everybody is different.

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Totally, find out what works for you and stick to it. You know your own body and what it can and can’t do. I did have to laugh when they gave me a poo sheet with pictures of what each one was like. That was a strange conversation to have. Well it was a number 7 then went to a 3 then back up to a 6. Very strange thing to talk about.

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Poo sheet is a serious matter,and one of most important thing in our lives:))))

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You knows it. I was looking for a hidden camera the first time it was mentioned. You should have seen my face when I saw it was laminated!!!!!

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:)

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I made a sheet for my husband with days of the month so he could track his BM's. He got tired of it LOL, so we don't do it anymore.

Since we just hit our 70's I'm not always sure the little things I worry about are due to age, eyesight, or HE. Tracking actual bowel movements is a pain, especially when the person a]doesn't want to and b] has never been that regular :-)

Best wishes to you both,

Mary

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Thank you,dear Mary.Wish you both well and hold on!

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I take it twice a day, keeps me regular with less straining , good for preventing hemorrhoids. I had to experiment a bit to find the right dose, too much and you're in the bathroom all the time, not enough and you're stoved up still. I had awful gas too. I take rifaximin twice a day now as well, it eased up my other symptoms. Only complaint is the size of the horse pills. I also eliminated red meat. Past few months have been better, especially if I don't overeat. Gave in and ate a big, juicy bacon burger last night, paying for it now with nausea and stomach pain despite the meds.

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many thanks for your reply and wish you well!

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If your told to take lactulose by your doctor then take it. As said before, it doesn’t just make you poo, it gets rid of nasty toxins that your liver can’t do anymore. It also stops you straining to poo.

Cheers,

Brett

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Thanks Brett,I understand the importance of the drug.It's just that his condition is not staying the same,gets better/worse all the time,and then he only had a couple of short HE episodes long ago when he was very sick.Now is just occasional constipation and might be connected with gallstones.But he does get irritated when he is constipated.The doctors are changing all the time and saying different staff.So guess we will just figure out the right dosage.

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It’s strange? When I was normal, I never thought about poo.

Now I count every poo every day and look at it to see if there is any blood or if it looks strange. I worry if I can’t poo or if I poo to much.

Yours poofully,

Brett

😂

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People just don't realise how a good quality poo could make you much more happy than roses!

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A gastroenterologist suggested I change to Linseed oil as she found “snake skin “ changes to my bowel and said it would reduce the bloating and gas caused by lactulose.

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Would be great for him too,but unfortunately because of the gallstones he can't have any oil:(

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My mother in law took this to keep the toxins at bay. She hated it and was in the bathroom with diarrhea.

Linda

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thank you,dear Linda

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Hospital recommended I be put on Lactulose, but GP put me on other laxatives, discussed this with liver clinic and each time it comes up, they tell me I need to be put on lactulose, but there is no feedback and I don't know what the issue is. It does give a lot of gas and forgive me for saying this, but now I take every opportunity I can to pass wind, I know to someone who doesn't have cirrhosis they might think I am rude, but, too much wind and it causes dreadful pain.

For some reason I was put on alternatives, like movecol which madees it worse, as in I bleed and end up with very hard waste, awful feeling getting clogged up and have to dig it out and accept that I would bleed heavily, it's worth having enema kit at home in case you need it.

Now been put on Laxido Orange, which helps with the constipation, but not so much with the toxins and find I have confusion a lot of the time.

Diet, exercise and laxatives are my only way of treating the constipation, getting enough water and avoiding certain foods. Bread, soya, cheese, milk, pizza, noodles, pasta, too much salt, not enough water etc. all cause me to get clogged up and pass blood.

I found frozen blueberries, spinach etc. were helpful, flax seed, extra roughage, made it worse.

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Many thanks for such a detailed reply.Wish you well and hold on!

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Hi-I did take it along with Xifaxan at diagnosis as my ammonia levels were very high. Like most-I suffered the horrible side effects-fortunately I was able to control HE with a clean meat free diet-I do eat eggs and a high plant protein diet-and with Xifaxan only. It is important for many to also take Lactulose as the toxins actually bind to and then leave the body-also from what I understand many eventually adjust to it-

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thank you!

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