Cirrhosis Diet???

[bpskowski]

I need the hives advice.

 

My SIL was recently diagnosed with cirrhosis stage IV.  She doesn't want to research anything dealing with it, she'd rather let the doctors tell her what's what. (She's in pretty bad shape.  She has lost a ton of weight and she's looks liked she's aged 10 yrs in the last 2 months.)  My brother is trying to deal with everything medical, financial, household, and work.  So, my sister and I are trying to help with the food/diet and meal planning.  I know from a little browsing (I'm usually on education board) that a few of you have direct experience with liver diseases and I know a lot of others just have good advice about diet and nutrition.

 

I have done a lot of researching on the internet but there is definitely conflicting information.  But from what I am sifting through it seems:

     plant protein and lean animal protein from eggs, dairy and fish

     raw vegetables (artichoke is suppose to be excellent)

     turmeric and milk thistle 

     limit fats but include fats from plants, avocados and nuts

 

Any advice is appreciated.

 

Thanks,

Beth

[Joanne]

(((Beth)))

 

If the etiology is substance abuse and you need info, please let me know.

 

I was never able to decide, based I research, the right diet. The professionals we dealt with personally gave out conflicting with each other info.

 

Adrian did not have any co-morbid issues such as cancer or diabetes but we ultimately decided on a low too sweats carb diet with lots of non starch veggies. He, too, aged quickly and lost weight.

[scootiepie]

This is difficult.   I used to work with these patients when I worked at a large hospital.  (I am a Registered Dietitian/Nutritionist).  Whether or not this is alcohol related, and if it is, if she is still drinking is obviously the biggest challenge.   But there are certainly other ways to get cirrhosis so I won't make any assumptions there.

 

Problems they can have:   ascites (swollen belly full of fluid).    Management:  restricted sodium content (2gm per day).   The ascites can also make them feel full quickly.  Small frequent nutrient dense meals help.

 

Hepatic Encephalopathy: build up of ammonia so that it affects your mental status.   Management:  medical (such as lactulose); in rare cases a temporary protein restriction.   This is controversial in that some docs will recommend a chronic low protein diet; however, in the long run this just results in overall poor nutritional status.   The GI docs I worked with would not advise protein restriction unless the patient was encephalopathic in spite of medical therapy, and even then, it was short term and not very often.    Current thinking is that protein restrictions do more harm than good and in general are not recommended except under medical supervision. 

 

Overall poor nutrition:  These patients tend to be catabolic (lose muscle quickly) and can have pitiful food intake.   If her intake is poor, I would not restrict anything.  In fact, you may have to use supplements if it's hard to get any nutrition into her (yes I am talking about the Ensure/Boost type supplement).   If she happens to be eating fairly well, then I would go with several small meals/snacks a day, nutrient dense foods, low sodium if there is any ascites, moderate to high protein content.

 

I could say so much more, but I would add that I wouldn't push too many raw vegs if she is not eating well.   Calorically they are not dense and if she has ascites it could quickly contribute to satiety.

I would also ask for a consultation with a dietitian/nutritionist affiliated with the GI practice if you or other family members need specific guidance.    There could be other things going on; and as cirrhosis progresses, you have blood sugar issues (related to inability to synthesize glycogen) and renal issues.     I've seen cirrhotics from the walkie-talkie-I-feel-great stage; to the ICU bed waiting for a liver.   Their diets are not the same.   You probably do need a individual assessment and recommendation with a professional.

 

Good luck.   It's not easy.

 

[bpskowski]

 

Hepatic Encephalopathy: build up of ammonia so that it affects your mental status.   

 

I would also ask for a consultation with a dietitian/nutritionist affiliated with the GI practice if you or other family members need specific guidance.    

 

 

 

Thanks, seems obvious now, but my brother is going to try an make an appointment for us to see dietitian/nutritionist through the hospital.  

 

She does have fluid build up and has been drained 4X already.  And, I think perhaps hepatic encephalopathy is happening.  When I speak to her she seems "off" somehow.  She seems to slur her words and she can't stay on topic.  She's not an alcoholic and they both immediately stopped any drinking when they found out.  

 

Thanks,

Beth

[mom31257]

My mother was diagnosed with stage 4 of it as well just this past fall. She is on a very restricted diet in terms of sodium intake and fluid intake, too. I don't know those current amounts. She is not eligible for a transplant because she has diabetes and her kidney function is reduced. She never drank a day in her life and Hepatitis C is not the cause. 

 

My mom did have the disorientation from high ammonia levels, but she is taking the lactulose 2 or 3 times a day and it's helping. They want her to have 2-3 bowel movements a day. That is how you keep the ammonia levels down. She is in a rehab facility getting physical therapy because she has felt bad for so long and lost a lot of muscle strength. She is having to walk with a walker.

 

My mom is 72, and I'm just not ready to lose her yet. We know this is terminal, but the doctor hasn't given us a time frame. He said she is in stage 4, and if that stage was divided into 4 stages, she'd be in stage 2 of it. 

 

Will your SIL be eligible for a transplant? 

 

 

[Tiffnkids]

So sorry your family is going through this. I lost my little sister to liver disease almost 4 years ago.

 

I am no expert, but . . .

 

Definitely restrict/eliminate sodium. Red meat should probably be eliminated. Given that she has ascites that has been drained multiple times, fluid restriction might be needed. She should be on lactulose to help clear the ammonia from her system.

 

Get her in to see a hepatologist ASAP . . . There are so so many hoops to jump through before someone can even be eligible to be listed for transplant.

 

((Hugs))

[bpskowski]

Thanks everyone.  She is seeing a specialist, the best in her area, but that's not much.  I wish she'd come out here to the tristate area and see someone better.  I just feel useless and want to help as best I can.  

[scootiepie]

Best wishes to you.   Don't feel helpless.   The fact that you are engaged and willing to help is huge.    If you are going to research on your own, I would suggest sticking with websites that are affiliated with teaching hospitals or GI/hepatology centers (as opposed to a more generic web.md type site).

 

You should be able to find a fairly good meal plan online searching for a 2gm sodium diet (+/- cirrhosis).  Fluid restrictions are necessary sometimes as other have mentioned, but ask MD about that,

since she is probably on diuretics and the fluid issue can be a very delicate balancing act.    Even when someone has edema or ascites, sometimes they can be very intravascularly dry and balancing intake vs output vs diuretic use (and compliance) can get very tricky.     That said, I would ask about it specifically, to see if it is indicated.   (Usually it will be in the amount of 1L - 1.5L day to give you an idea.)

 

Things you could start right away - small frequent nutrient dense low sodium meals/snacks.   Believe me, it would be a huge help to the family if you could formulate a meal plan.   Please do not underestimate that !!!     There are many "backbones" available online as I mentioned; you could just tailor to her likes and dislikes.

 

 

[bpskowski]

 

Things you could start right away - small frequent nutrient dense low sodium meals/snacks.   Believe me, it would be a huge help to the family if you could formulate a meal plan.   Please do not underestimate that !!!     There are many "backbones" available online as I mentioned; you could just tailor to her likes and dislikes.

 

This is exactly what I want to do. Even without disease, I a big believer in diet and nutrition. My mother lives close by them and is making dinners for their family, so I want to give her ideas and my brother snack and small meal ideas.  

 

Thank you.

[Joanne]

Fwiw, xh was super sensitive to any reduction on lactulose. When he was able to also take xifaxin he does the best. But xifaxin is very spendy.

[Catwoman]

Thanks everyone. She is seeing a specialist, the best in her area, but that's not much. I wish she'd come out here to the tristate area and see someone better. I just feel useless and want to help as best I can.

She needs to be seen at a liver transplant center. That is truly non-negotiable. If your SIL wants to stay alive, she is going to need a transplant at some point, and the time to go through the listing process is NOW.

 

What is her MELD score? That number is crucial. MELD scores range from a low of 6 to a high of 40, and the higher the score, the worse the liver is functioning. If her MELD score is low, she could wait years for a transplant, but if it's high, she may need it quite soon. Whatever the case, she needs to know exactly where she stands right now so she can make educated decisions.

 

"Stage 4" liver disease only means that she has cirrhosis, not that she is in the final stages of cirrhosis, so her prognosis may not be as dire as it sounds. People with low MELD scores can have some pretty horrible symptoms, but the symptoms on their own don't necessarily relate to mortality.

 

One symptom that can be very serious and even fatal is something called varices, which are hard to explain but are pretty much like varicose veins that are internal. Has your SIL had a colonoscopy and an endoscopy to check for varices? If not, she should schedule those tests immediately. Varices can be monitored if they're minor, and treated if they are large, but she absolutely needs to know if she has them, because they can burst if they get too large.

 

Cirrhosis is complex and the only real treatment for it is a transplant. Be extremely careful about recommending that your SIL take any kinds of herbal supplements, and definitely have her avoid any kind of "liver cleanses." She should also never take Aleve or anything with Ibuprofen in it. There are also certain antibiotics that are dangerous for her, but I hesitate to discuss this stuff because I'm not a doctor (just the wife of a patient!) and I don't want to give medical advice that may not be accurate for her particular case.

 

My very strongest recommendation is for her to make an appointment at a liver transplant center and plan to spend about a week there for a full evaluation. Not only will she find out exactly what's going on with her liver, she will learn all about transplants and see if she is a good candidate, and she will get the answers to all of her questions about things like diet and medications. There may be a good liver transplant center in her area that would be excellent for her, but if not, I highly recommend the Mayo Clinic.