lactulose: i have been taking 30ml twice... - British Liver Trust

British Liver Trust
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lactulose

i have been taking 30ml twice a day for HE. seems to help some but it causes me to have irregular loose bowel movements and you better be close to a restroom. anyone else have this problem

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Very much a normal effect of lactulose (sadly) but it is intended to make you do several partially formed stools a day thereby ridding the body of those toxins which cause Hepatic Encephalopathy (HE). Hubby found that combined with iron tablets he was very often caught (lets say) very short. I have to plan days out and wherever we go make a mental note of available loos - it is a very debilitating side effect and has often affected whether we can go out or where.

From your use of the term restroom I am surmising you are not in the UK. If you are in the UK you could get yourself a RADAR key which gives you access to locked disabled toilets. These are available on Amazon for only a couple or so pounds and they are invaluable.

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jjeff,

As Kate just said its a problem that comes with sorting out hepatic encephalopathy. Were you not warned about it when it was prescribed ?

I was quite happy to take it as it worked quite well together with another medication in sorting my many episodes of HE.

One thing I did which might help. Get yourself a RADAR key. The name RADAR comes from the Royal Association of Disability and Rehabilitation who started the scheme. Then you can access all the disabled toilets. I got mine from the local council offices for free.

You can even get an app for your mobile phone to find the toilet n

earest to where you are.

Take care,

Jim

amazon.co.uk/All-New-NKS-Ra...

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Jim and Katie

that's really helpful information , never new about key or app , will certainly make our life a bit easier 😊

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Hi Blue-Bells, I haven't been on this site for a while do the fact I've had some issues with debilitating health regarding not only my liver but my digestive system pancreas and And others. I just wanted to say I'm not from the UK but I was born and raised in the British way as my whole families born in England came to Canada we have nothing like that every Radar key that's a brilliant idea! And one more thing I wanted to talk about if you don't mind lactulose is horrific and in Canada they never told me when my son who is special-needs is taking it what the side effects were he didn't even have a liver disease he had other issues. And when my liver specialist put me on to lactulose it was a long time ago I realize it was the worst thing for you I can go out with it now I understood what my son was going through!! He would cry and say I can't take it mommy I can't go to school and take it I didn't understand that every time you pass gas could actually have loose bowels and severe flatulence. I follow in the same way regarding the side effects. I started on a regimen of pure fibre , eating dark greens all the time including kale, and try not to eat things that would bind you like cheese and starches i.e. rice it took a while but I started to have normal bowel movements even though I was quite ill. If you can afford going and getting a complete organic vegan foods and liquids and drinking lots of water filtered water it does work. That dreaded lactulose I threw the whole thing in the garbage I had like three bottles of it sticky , sickly orange liquid she can even call that liquid and I had to take tablespoons after tablespoons during the day I couldn't go out anywhere! Thanks for listening, hope everybody's doing well

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The app sounds helpful. Does it have a name as would be useful for me as well. .

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I wish I did! I have suffered from constipation since I was a child..so much so it took three liver doctors to finally get it...here & the USA.

I also take lactulose for HE. But there are some days I still can not get to the loo. So I use something with it. Another bowel looseing medicine, and I mean.

have you had HE yet? I'm guessing yes. For me, when the lactulose works it is a blessing! But that's because the hepatic enchalopothy is terrifying and I wake up two days or so later, unaware..and then I STILL have to recover, stop shaking, getting sick, etc. so I may, can and have lost five days in a one week period.

I take the antibiotics strictly for my gut, twice daily, to also fight the toxins.

I'm lucky, even during an episode if I need to go to the restroom, somehow my body knows to do it.

I have heard of people complaining about the issues you have. Sometimes it takes a while for your body to adjust.

Speak to your liver doctor..maybe if your HE is not so bad they might reduce it?

Someone else mentioned the American version of the medicine. Allegedly the side effects are better?

But when I asked my doctor about it, she said the lactulose form was the best and had not heard any different.

Good luck, and sorry things are rough that way.

I'm just so grateful for anything that helps me avaiod any HE episodes at all. To me, they are far worse than anything else I've been through..including getting drained every couple of weeks for up to 21 liters of ascites and my first liver transplant.

Cheering you on!

Kimberly

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i have just luckily had just mild HE. Mainly memory and not being able to comprehend when others are talking to me. Sometimes when driving ill be going somewhere and all of a sudden forget where I am fortunately it only last a minute or so. I dont drive unless i have to. I feel like this not supposed to happen to me at 55.

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Same age as hubby and he too has mild HE symptoms, he takes 20ml morning and night plus Rifaximin for his issues. He stopped driving on diagnosis - too tired, lacks concentration, forgetful. Good that you don't drive much but be careful although not listed as a notifiable condition for driving (it should be) and would invalidate insurance in event of a claim.

One thing we've been told about lactulose is you can play with the dosage - make sure you are 'going' 3 - 4 times a day but if going too often then reduce dose a bit. Also if you are having a day out which you don't want ruined by the effects then leave your dose till later so it doesn't impact on your day (as much). Sometimes hubby feels he needs to add a few more ml if he hasn't 'been enough' - he also finds that coffee, chocolate and fruit cake (get him moving).

Katie

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Totally normal, I've been taking it for the past few weeks and I've been caught short in every situation you can imagine. I get some really bad flatulance (not sure why?) which only settles once released and that sometimes can catch me short. Totally embarrassing-

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My husband was told by the liver nurse that if you get flatulence and bubbling in your stomach you are taking too much lactolose he was taking 30ml twice a day so has reduced it and can cope with it better no bubbling stomach karen

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One other thing to consider - no need to worry about finding change. The disabled toilets at mainline rail stations do not charge for their use.

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Yes this happened to my dad. We would plan to run errands he would NOT take it, or take it later (skip a dose) because it would be that bad. And even at home he had trouble because his bathroom was on his second floor. MANY accidents. Then he would not want to take it. But then he would get HE get confused, irritable, angry. Either way it wasn't pretty. I wish there was a better answer but we talked to several different nurses at different times and that said that's just what happens. So it's like be confused or have accidents. I hope it gets better for you.

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Hi Jeff, I hope they sort you out soon. I have been on 40ml twice a day of Lactulose to for HE and to increase bowel movements from once every couple of days to 2-3 times a day... but nope nothing so I am now on Movical too....apparently my insides are quite stubborn... not that I'd like to too go your way so much...I do hope that things calm down for you soon.

Chelle

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