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British Liver Trust
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Lactulose help!!

Hiya all you fabulousss people down my phone xx

I know I'm supposed to take lactulose daily but I confess I don't!!

I hate it,not the taste or the bowel probs or even the wind.

It makes me feel like I'm choking because I'm so bloated from it. I look and feel like I'm six months pregnant....NOT a good look 😲

Is there anything else I could take instead of it??

Thanks lovelies xx

Lisa (bloated & desperate) πŸ˜€ Xx

80 Replies
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Hi,

Not sure if there's anything you could take as an alternative.

I try to eat plenty of vegetable fibre.

Also I have dried prunes chopped up and mixed with cereal or porridge every day, which seems to help keep things moving. Just watch out for the very high potassium in prunes though if you're on potassium sparing diuretics for ascites/odema.

Other than that, staying well hydrated helps keep things nice and soft.

Haven't really had bloating on lactose, but the wind and unpredictable bowel movements, oh my...

G

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Just remember that lactulose rids the body of ammonia. Ammonia causes HE. As far as I’m aware, there is no alternative.

Cheers,

Brett

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Aaaaw cheers Brett x I know that's what I'm scared of HE xx im already confused & fuzzy headed with my meds or so I thought.

Thanks honey

Lisa πŸ˜€

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I agree with you

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I 100% agree with Brett - I know it's horrible stuff but you need to get rid of the ammonia. Not aware of any alternatives. When I was in the hospital I went into two unconscious states from the build up. Please continue to take. All the best πŸ¦‹

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Omg hope thank you so much for your post I hope you're feeling better now πŸ™ xx

I guess I was really naive about the dangers of not taking it so I'll defo start from now & sod the side effects πŸ‘Š

Take care lovely xx

Lisa πŸ˜€

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My GP has told me in the past that there is no alternative to Lactolose. Its use is to limit the amount of ammonia reaching the brain and making hepatic encephalopathy worse for cirrhosis patients.

Lactulose works in 2 ways apparently. First it clears out the bowels frequently and second it reduces the bacteria in the gut that generate ammonia.

Hope this helps.

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I'm just going to have to persevere babes because the bloating etc out weighs the HE x

Yes that helped loads

Thank you lovely

Lisa πŸ˜€ xx

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Ok cheers Gary *off to buy prunes* ha ha x

Lisa πŸ˜€

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Hi L

Ummm Lactulose didnt affect me but umm didnt affect me in the way it was supposed to either 😁. You could always do what they (the lovely medical peeps (Im being serious - before pilot jumps down my throat)) gave me to fix problem - loveuly jubbily - self administering liquid enemas. That was fun hahahaha (as long as the grand children didn’t wander in 🀭) - NOT

They (QE Hospital Birmingham) set me a target of 3, you know whats, a day. So if you can achieve that you’re laughing. Bet you can’t stop laughing...........

Miles

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Were they lactulose enemas Miles?

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Hehe Brett! πŸ˜πŸ‘

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No! There are lactulose enemas.

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Rectal: may be given as a retention enema via a rectal balloon catheter. Mix 300mL of lactulose solution with 700mL of water or physologic saline, retain for 30–60 minutes. May repeat every 4–6 hours; if evacuated too promptly, may be repeated immediately. Start oral route before stopping enema entirely.

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Brett I learn something every day. 😁. I think I can safely say, no thry weren’t, they were same sort (as far as I can tell) as you get in hospital....

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They are used when you can’t tolerate lactulose the usual way. It’s very common.

Cheers,

Brett

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Ah OK. I tolerated it well, trouble is my body said it laughs in the face of lactulose πŸ˜‰

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Omg actually they're worth looking into πŸ‘

Thanks guys x

Lisa πŸ˜€ xx

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When in hosp my neighbour had then - not nice at all!

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Hi,

I'm not sure about the safety of this idea.

In liver disease and otherwise, fluid balance is very important and this volume, a total of 1 litre doesn't sound right. Important to remember that fluid is absorbed within the gut. Better to seek medical advice.

Jim

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I was told 3 litres....

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My concern was that the rectal fluid wouldn't be considered as intake and not included in any daily totals. Also, as a saline solution, that would also have a different impact to simple water intake. Then it can get complicated and only something to be done under medical supervision.

Jim

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I’m sorry Jim, I don’t understand! I’m not talking anout 3 litres of enema (the mind boggles!) but water through the mouth 😁😁

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If the total intake was to be restricted to a certain volume, the measurement should include via any route. My concern was that the rectal administration might not be considered by some to be intake causing the total intake to be underestimated.

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Hmm I don’t get that logic - but who knows - I don’t know how an enema would make its way to the liver though!! That is the purpose of the water.

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I am aware of the source of this information and it is definitely not something to be done by anyone who isn't medically trained / qualified.

The regime you describe is for a patient in or approaching the coma stage of a hepatic encephalopathy episode.

Jim

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Brett that sounds like torture πŸ˜–

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Hello,

Just a gentle reminder - enema's should only be given with the approval of the medical team concerned - they could cause dehydration, alterations in body chemistry and also if someone has the misfortune to have varices (swollen veins) in the rectum then pushing a tube up could potentially cause bleeding.

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We’re your parents siblings?

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*Where πŸ™‚

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You’re

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OH god yes ha ha I can't wait 😁

Cheers smiley

Lisa πŸ˜€ xx

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😁

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Hi! Please try sweet tamarin. It high in fiber and will help with the bloating. I chew the pulp of tamarin pods daily for 1 week now and it has made an incredible difference. You can make it as a tea if you prefer. Please try it I guarantee you’ll feel better. ☺️

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Ooooh tamarin πŸ‘ where do I get that from ?? & the kids as tea sound like a good idea x

Thank you lovely x

Lisa πŸ˜€

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Asian (Pakistani/Indian) sell it, as do some supermarkets, look on the world foods section. It's a dried block of pulp that you soak then strain the juices out of.

Very nice for adding tang to a curry too ☺

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Ooooh I never even thought of going there to try and buy it xx

There's a world food supermarket by me πŸ’•

And if all else fails I've got a new flavour to add to my curry ha ha

Cheers lovely xx

Lisa πŸ˜€

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I love in New York therefore i get mine a the local supermarket in the produce section. I might also want to try eating beet and using tumeric spice highly recommend it. I hope it helps you as much as it has helped me. Also drink plenty of water. ☺️

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God I will defo try it babes it sounds amazing x I'll look out for it tomorrow πŸ’•

Thanks honey you take care xx

Lisa πŸ˜€

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It’s actually tamarind. Sorry to be pedantic but where i was brung up 😁 (for pilot another example of my joke speech.....

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Believe me take it I was drinking it by the bottle load but I also suffer with severe ibs and it didn't work on me as well so my husband had to give me daily enemas on top (I couldn't do myself due to the amount of ascites I had as well) ... I was in hospital on a weekly basis because of h.e. I wished lactose had worked on me as well 😁

Have mint tea afterwards may help with the bloated feeling also charcoal biscuits as they disperse of wind without you actually farting

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Omg babes sorry to hear about your hospital admins with HE hope you're not suffering now xx

Oooh that's good advice πŸ‘ I'd forgot all about the mint being good for you, I'll try them x

Thanks lovely x

Lisa πŸ˜€

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No more h.e. I am 2 years post... But it's left it's mark on me I now have memory and concentration problems due to mild brain damage through it but small price to pay x

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OH I'm delighted no more HE but Jesus babes you've been through it haven't you 😒 xx

Hopefully & fingerscrossed this is your new beginning xx

#hellofuture πŸ’•

Take care lovely xx

Lisa πŸ˜€

Ps; thanks again for the advice πŸ’—

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Jojo I didnt know it could damage brain long term πŸ˜£πŸ™ now I see why I have permanent brain gog, can’t read a book anymore, etc OMG and to think I used to laugh in the face of HE 😒

Miles

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I do brain training and I now do enjoy my books again but it's took 18 months or so I did lots of puzzles and it's helped x

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Aha that’s a good idea thx jojo. I’ll start now. Do you mind me asking how much per day and how long did it take to notice an improvement (how long approximately is a piece of string 😁

Miles

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Im sorry jojo, I’ve got to stop speed reading, or is ir the FOG, you already said - 18 months. Quel idiot je suis.

Miles

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Awww jojo πŸ™.

I could only bring myself to do it every other day. Thing I found (too much detail?) is that after the enema’ s devastating effect there wasn’t any more β€œactivity” for rest of day (well that what I found!)

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Lol I didn't have enough activity in hospital they actually gave me 4 litres of the drink they give to people having a colonoscopy and it still didn't work my ibs was definitely a big factor in why I suffered so much with h.e. but the stories I have from my friends and family are bloody hilarious and kept me entertained 🀣🀣

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Jojo

These stories I presume are about you when in HE mode! I have same laughter times, sometimes you can’t believe its true can you!😁😁😁

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Hi,

There can be light at the end of the tunnel.

During 2015 I had a total of 80 days / nights hospitalised, mostly with hepatic encephalopathy (HE). Took a while but with a combination of lactulose and Rifaxamin, the HE subsided and became quite well controlled. I hated lactulose and made it tolerable by immediately following it with strawberry ( prescribed ) dietary supplement. So it really is well worth persevering with the prescribed medication.

As this is a very important part of getting well, speak to your medical / nursing team and discuss your difficulties with your treatment.

Jim

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God I hope there is light at the end of your tunnel honey πŸ’•

Thanks & take care lovely xx

Lisa πŸ˜€

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I'd just like to remind people here that if a consultant has definatly identifed that you have Hepatic Encephalopathy, it is up to you to notify the DVLA and not drive. There are some really nasty horror stories out there of people driving the wrong side of the road, and even driving down the wrong sliproad on a motorway. Some people just assume that a doctor will notiify the DVLA, but it should be remembered that it is up to the driver to notify them of any changes to your medical circumstances. Just a thought.

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And insurance won’t be valid....

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Hi miss Fab,

The point is the lacky ,doesn't affect bloating much even if used with a laxative

And I do believe that there are substitute lacky,s but as good as the classic

Bloating is from excess liver juice aka ascetes and you can have water tablets for that

Al so cut out the 'salt' your Fab'liver will thank you for it

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Hi thanks for the advice honey x

I don't have salt BUT if I do I can feel the difference.

I was on spironactone 90mg & furusimide 30mg (soz about spelling) but they took them off me.

Thanks again.

Take care lovely.

Lisa πŸ˜€ zz

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If you've got encephalopathy then taking iit's a must , the only alternative Is Refaximin. You must be honest with your GP/Consultant, With Encephalopathy it's serious, that's a big serious,

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I had rifaximin and lactulose. Tbh nothing worked for me except enemas....

Miles

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I think I was naive about how bad the HE is until I've read on here so taking it will outweigh the bloating feeling.

I'll bite the bullet & do it x

Cheers honey

Lisa πŸ™‚

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It is the most disgusting thing I have ever taken, even the smallest amount requires me to visit the lavatory countless times and keeps me awake all night. There must be an alternative....

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OH NO I don't mind the taste & it doesn't work like that on me ......it's the bloating I can't stand,it makes me feel like I'm choking 😒

Take care lovely

Lisa πŸ™‚

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try putting it in your morning coffee instead of sugar

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Oooh that's a good idea i'll try that β˜•

Cheers honey

Lisa πŸ™‚

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Hi there, my body suffered severe allergic reactions to Lactulose when I started taking it, so much so that my doctor (liver specialist/gastroenterologist) replaced it with Xifaxan; it does the exact same thing (lactulose's alternative) and I tolerate this medication much better (no bloating or dire pain). My doctor also noted that I am not the only one who does not tolerate lactulose. So, you may want to ask your doctor about Xifaxan. Great luck!

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Oooh ok honey I will ask about that x

Thank you x

Take care lovely πŸ™‚

Lisa πŸ˜€

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I was taking lactulose and xifaxan when my HE was at it's worst. My doctor recently put me on the xifaxan only, and lactulose as needed. I take it whenever I am not having enough bowel movements or feel that fog coming on. I have heard some people use miralax, which is an over the counter laxative, in place of lactulose if they are uninsured or insurance doesn't cover it. Not sure if it is as effective though. Maybe something to discuss with your doctor, as you might be able to tolerate this better. Take care

Jennifer

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Hi Jennifer

What do you mean by uninsured or insurance won’t cover it, please?

Miles

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Some prescription plans in the US exclude certain medications. When I was first diagnosed I did not have any health coverage at all. The monthly charge for lactulose without insurance is approximately $500 a month. Xifaxan is a staggering $2000 monthly.

Jennifer

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Sorry Jennifer didn’t know you were in USA. Wow I love Ameica but glad I’m ill in UK. Those prices are horrendous. Over here it’s basically free (certain condions apply but virtually everyone gets free health care!

MilesπŸ‡§πŸ‡§

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Free healthcare. You're livin the dream Miles. Best wishes.

Jennifer

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Don’t understand this comment at all, explain?

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Think Jenny is saying she could only dream of free healthcare & that us in the UK are lucky in the access to such as system as our wonderful NHS. It is really sad to hear of those in other countries who can't afford access to health care even when so desperately needed. It's why we need to fight to protect our free at the point of need NHS.

Katie

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Aha thanks Katie! I thought she was saying - you may say its free but that’s cloud cuckoo land, because you pay for it by roundabout taxes 😐

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Sorry for the confusion Miles, and late response. And thank you Katie for clarifying. Yes, you are very fortunate.

Jennifer

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That’s fine thanks Jennifer. We are, indeed, exceptionally lucky!

Best of luuck

Miles

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Hi miss_fab,

Just saw this post. My husband takes lactulose, but has not complained of bloating as a symptom. I'm not sure of your dosage or how often you take it, but a few times I've asked our doctor about hubby's dosage and they have said he could lower it and take 3x a day, instead of the 2x he does take it. I do know you can add it to a saline solution and do an enema - has to be "held" for a minimum of 30 minutes and hopefully closer to 60 minutes - but that is an option. Lactulose is primarily for removal of ammonia from the brain through 2 to 3 bowel movements a day.

This seems to be the primary treatment in the U.S. and U.K, although the U.K also sometimes adds an antibiotic [I think] so I'm guessing it is the best treatment for the confusion of HE in liver disease.

Best wishes,

Mary

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British Liver Trust admin (Trust5) in a reply to Brett11, just commented on the use of any enema especially something also involving a saline solution.

" Hello,

Just a gentle reminder - enema's should only be given with the approval of the medical team concerned - they could cause dehydration, alterations in body chemistry and also if someone has the misfortune to have varices (swollen veins) in the rectum then pushing a tube up could potentially cause bleeding"

By the way, lactulose as well as clearing the bowel, alters the acidity of the gut which affects the perfectly normal bacterial production of ammonia. The antibiotic, usually Rifaximin, further lessens the bacterial action within the gut and thus the levels of ammonia entering the circulation. Lactulose and Rifaxamin only work within the gut and don't enter the general circulation. This is why the combination is safe for people with diabetes.

Hope this helps.

Jim

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Interesting Jim

I wonder what Trust 5 would say in my case then? I was given about 20 bottles of prescription enemas by the hospital and told to self administer. Not told when or how often but a little common sense leads the way!

Does that count as β€œapproval of the medical team” because to me that infers prior to each enema the medical team needs to approve. But I could well be reading it incorrectly!

Miles

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Hi Jim,

Yes, I was trying to point out that lactulose could be taken other than by mouth, but you are correct in that I should have added that one should always check with one's own doctor/team before doing any actual changes.

Mary

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