Cirrhosis and Swinging Appetite

[WildHorses101]

Morning all,

Anyone on here supporting loved ones with Cirrhosis, Type 2 Diabetes, Hepatopulmonary Syndrome, Muscle loss and, trying to build their weight and muscle bulk back up with their loved one having such a swinging appetite?

I am exhausted, feel so alone, worried sick and feel like im in a constant battle with foods and meals to rebuild my husbands weight loss and muscle bulk. I am on the go from the moment I open my eyes early in a morning, to the time I eventually close my eyes very late at night supporting him in every way possible (I managed to get help from community physios & Occupational therapists to assist hubby with exercises and equipment, hes managing to sit out of bed and walk across lounge with walking frame now while on oxygen, not every day but its work in progress thats a massive change from 4 months ago, he was so weak back then and was just stuck in bed in lounge) yet I still feel like im failing him, I dont recognise myself as a wife anymore 😢 im a carer and nurse rolled into one who is desperate to get her husband back…...

I reached out to dietitian last week who's prescribed 2 Renopro shots per day (20g protein/60ml bottle) and he has been having 2 fortisip compact protein (18g protein/125ml bottle) for a while, he recently began taking Rifaximin (today is day 8) and now im wondering if its having a decreased effect on his appetite?

Have you guys any tips/tricks ways round things etc as we start to build up and move forward then seem to go backwards again, like being on a rollercoaster ride, its one hell of a stressful journey 😳

Many thanks in advance!

[Mango5cm]

hi - my son was like your husband nearly two year ago . He was diagnosed with decompensated cirrhosis and he had type 2 diabetes. He lost about 6 stone as he couldn’t eat and this reversed his diabetes. His wife was in your position caring for him and she was exhausted and suffered with anxiety. We were advised to let him eat anything - small and often - lots of protein and carbs . He would managed a little tub of rice pudding or half a scone or a cup a soup along with Fortisip drinks . Coffee with full fat milk as well . I don’t know if it’ll help but my daughter in law would leave him little bits of what he used to like by his bed with a drink and he began to eat them . She didn’t ask him what he wanted because he was too ill to be bothered . He gradually started to put muscle mass back on and has put two stone on and can get out of bed and walk to the bathroom and kitchen . It’s been very slow progress but we found not fussing him to eat has helped . I really feel for you as often the ones caring for loved ones are left to get on with it - please try and look after yourself even though it’s so difficult . Think of you and sending a virtual hug Carol xx

[WildHorses101 in reply to Mango5cm]

Thank you for taking time to reply Carol, it is greatly appreciated 🙂

It is such a rollercoaster, some days feel like hell on earth and I question if I’ll ever get my husband back and cry with sheer frustration and other days are great.

Sometimes it look likes hubby is starting yo gain weight and muscle and other times looks like hes losing it again, its so cruel.

Thank you again Carol, its reassuring to know things can improve

Take care

K xx

[RodeoJoe]

I've been there with a failed liver and no appetite. Protein is really important, forget vegetables etc. I used to force feed myself chicken, pork, beef etc. Nothing processed as thats salt. The fortisip was the easiest thing to face. And make sure he has one just before bed.

If you have weight on you you won't starve except for protein.

[WildHorses101 in reply to RodeoJoe]

Hi Rodeojoe

Firstly, thank you for taking the time to reply, its most appreciated 🙂

Secondly, Have you managed to turn it around and rebuild muscle? How long did it take?

It seems such a slow process. Ive watched my hubby disappearing in front of my eyes and trying to rebuild him is such a struggle, some days it looks like hes putting on weight then few days later looks like lost some of it again.

I give him an ovaltine drink made with organic whole milk & a fortisip compact protein around 11-11.30pm each night and leave a protein bar next to his bed in case he gets peckish to try and stop the liver attacking and breaking down his muscles, his appetite is so up and down, sometimes I lose hope and wonder if i can ever truly get him built up and his calorie intake high enough & on his feet properly again, his stubbornness drives me insane some days!

I do home made trifles & rice puddings, use whole organic milk & cheese, egg custards (without the pastry some times), chicken casseroles, beef stews with added lentils, roast dinners, salmon rolls etc to name but a few…..

Beginning part of this year he was on an awful downhill journey, contracted pneumonia, diabetes went out of control, & as he has hepatopulmonary syndrome (complication of liver disease which causes drop in his blood oxygen level on sitting, standing & movement) hes on high flow oxygen and I keep fighting to build him up, sometimes the task seems so huge!

I try to get hubby to eat every couple of hours including the fortisip and renopro shots. I was told he needs to hit 2,700kcals per day, how on earth are you supposed to try and hit that amount daily with an appetite so unpredictable!

Best wishes

K

[RodeoJoe]

You're doing the right thing. I had a liver transplant so yes I turned it around.

Not a medic in any sense I just know I struggled to keep sustained when I was very ill, All the best