HE CLD help

[Needmoreinfo]

My dad has been working on getting on the transplant list for about a half a year. Has to take lactolose/rifaxin in order to keep the HE at bay but recently hes having a terrible time with it. Stomach pain, nausea and diarrhea. Lives in the bathroom has no life anymore very depressing. I feel if I could get him to take these meds and him not feel so sick and nauseous all the time the bathroom trips may not take a toll on him as much. He is sick of being sick but this is the way it has to be till he gets a transplant. Any suggestions on how to get these meds in and to stay down I think he vomits alot of it back out so doesnt get what he needs so there for no bowel movements. Anything that works to make his stomach feel better to keep them down. Thank you

[AyrshireK]

When you say 'working on getting on the transplant list' what do you mean? Is your Dad under a transplant centre at present?

Not quite sure what you mean about working on getting on the list - in our case my hubby was already seeing liver doctors, they said at one clinic I think it's time to assess your for transplant as there is nothing further we can do to treat your liver condition, in a couple of weeks hubby was in the transplant unit having his assessment and at the end of the week listed.

You really need to raise the issue of your Dad's current ill health with his medical team - it might be that they need to look again at his meds (my hubby has nothing like the issues your Dad is having and he has been on Rifaximin together with lactulose since 2014 - he has the urgent toilet need but eating and drinking and no vomitting).

The really need to know about how he is as he won't be getting in enough calories, protein and carbohydrates so his body will become weaker and more malnourished and sadly that could stop him being actually well enough for transplant.

Raise these issues with Dad's doctors a.s.a.p.

All the best, Katie

[Needmoreinfo in reply to AyrshireK]

Sorry yes he is under treatment with a transplant team but his health goes back n forth and apparently not sick enough to require transplant at this time. They see him every month do testing and have discussions but not on transplant list yet. So the day to day for him is horrible being sick and the treatment of lactolose/rifaxim is all they can do right now. So wanted help treating the day to day nausea and diarrhea vomiting just to make his days more pleasant. No other option at the moment for him.

[AyrshireK in reply to Needmoreinfo]

That makes sense. Good that he is under the careful eye of the transplant team and he will get assessed as soon as they feel he is poorly enough. Maybe need to see if there is an anti-emetic drug to try and stop the vomitting. His weight and muscle mass will suffer if he isn't getting the calories in.

[Hidden]

Sadly this is just one of those conditions associated with HE that we've all had to suffer with. Just to explain a little what's happening here. When we eat food it travels down into the stomach were it is broken down and sorted out. It then travels down to the gut were it is broken down still further by friendly bacteria. One of the byproducts of this action is the production of ammonia. Ordinarily, this would be processed by the liver, made harmless, and then passed on yo the kidneys to be flushed out the body.

Because the liver has become scarred due to cirrhosis, some of the 500 different functions that the liver carrie's out becomes harder to process as usual. Here the build up of ammonia can build up and leak out into the blood system. Here is travels up to the brain and damage occurs.

The taking of lactose, flushes the food stuffs in the gut out before the bacteria have a chance to work and therefore cut down the amount of ammonia that is produced. Unfortunately, this the causes diarrhoea. This sadly does have a great impact on a person's quality of life. When l suffered this condition l brought a few of those Radar keys, l also a "just can't wait" card: bladderandbowel.org

This helped, as people, shops and companys should allow you to use their facilities at short notice.

One of the conditions of having a liver transplant is to improve a person quality of life. So maybe this could be argued stronger the next time you go for assessment.

I hope some of this information is of use to you.

Good luck to you all.

[jojokarak]

He still going to feel sick even with the tablets and it's awful but good he has diarrhoea as the toxins won't build up as much it will be the lactose doing that I was like that for about 3 years... They will put him on the list when he really needs it it's usually when you're bloods are completely off or symptoms wise when you have an awful lot of ascites and you're getting drained regularly as that's when it's effecting your other organs

[jazzjam]

I realise he is very ill and all things maybe making him sick but just wondered if it was the lactulose. I was really nauseous when I drunk the lactulose morning and night. I had been having it 6 months before without any issue. I was then put on rifamaxin also. The consultant asked me to persevere with the lactulose. He said that you can water it down a bit or put some other flavour with it. I personally like the flavour lemon and lime. When I was back in the UK I found these mini squirt bottles of fruit flavour, I think Tesco they might have been Robinson’s ones) and also Aldi or Lidl. You only need a tiny tiny squirt for full flavour. Honestly it took away the disgusting sugar taste. Just maybe worth a try. I’m not sure how to post a picture but I’ll have a go and try.

Go squeezy 50ml little white bottle and Robinson’s orange Squash’d’ 66ml, little black bottle. Sorry couldn’t see how to post a piccie.

[carllovatt]

is he on PPI' s for acid reflux . and is his meals easily digested