Coping: My story starting in 2020,light... - British Liver Trust

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Coping

Rawai profile image
14 Replies

My story starting in 2020,light headed,weight loss,in and out if the toilet.When i eventually went to the hospital was tokd Cirrhosis,been in and out since,they never explained diet so i have had a couple of burst blood vessels not nice.

Now i am aware this us my 1st week of rabbit food!!

No booze for over a year,hoping the diet will stop me being rushed in with half my blood not in my body.

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Rawai profile image
Rawai
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AyrshireK profile image
AyrshireK

Were your bleeds down to burst varices in your oesophagus? Varices arn't diet related but down to portal hypertension which is a side effect of your cirrhosis.

Whilst it's good to eat healthily (balanced diet) there is absolutely no need to live on 'rabbit food' in fact with cirrhosis you probably need more carbs and protein rather than too many veggies.

I'll ping you a PM with what I mean.

Katie

Rawai profile image
Rawai in reply toAyrshireK

Thanks, im all confused,i am under a liver specialist in Thailand, 2021 2022 had issues with a massive infection which whilst sorting found the Cirrhosis,since then all last tear no problem normal food then 10 days ago felt indigestion and some blood,in the ambulance i threw up a lot of blood,5 days in the hospital,8 packs of blood and two endoscopy ( 3 elastic bands) im home,he only tells me no booze,eat broccoli,lean red meat,nothing about a diet.I take daily medicines,im scared to eat!! Tomorrow i see him again,and questions i should ask?

Struggling to put on weight,bit tired in the afternoon but im 69.

Always been fit.

AyrshireK profile image
AyrshireK in reply toRawai

The private message I sent you might help a bit with nutrition advice and gaining weight.

My husband has cirrhosis and it was only a massive varices bleed which brought it to light. Your indigestion in days leading up to you throwing up blood was probably your stomach's way of telling you there was something going on internally which it wasn't enjoying. My husband was the same - portal hypertension also often causes damage to the stomach lining which can lead to indigestion/heart burn symptoms.

My hubby ended up having to have 42 varices banded over the first two years of his illness, he was also put on Omeprazole to protect his stomach and protect his stomach - he found that avoiding trigger foods for pain was key - in his case this meant not having citrus food or drinks, avoiding anything too acidic.

He can eat normally but did suffer quite a bit of pain requiring soft diet in the days immediately after banding as it was agony for him even to have water.

Are you on a proton pump inhibitor such as Omeprazole, Lansoprazole, Pantoprazole, Esomeprazole or such like? These will protect your stomach and perhaps make eating more comfortable going forward. MAYBE ONE QUESTION TO ASK YOUR DOCTOR.

You absolutely MUST eat and eat properly because your cirrhotic liver will end up stripping your body of muscle if you don't fuel - again the information I sent via the Chat function will help you here.

In the UK if someone has cirrhosis they have minimum standards of monitoring going forward - 6 monthly ultrasound scans to check the liver for any unusual lumps or bumps showing up plus to check other organs and for signs of portal hypertension, fluid build up etc. 6 monthly blood tests to monitor how the liver is doing.

The British Liver Trust has an excellent page about cirrhosis which I found a great help when my husband was first diagnosed in 2012 and it certainly helps to know about the condition so you can look out for signs and symptoms and be able to ask pertinent questions when you see your doctor. britishlivertrust.org.uk/in...

They also have pages of information on questions to ask your doctor though some of the care terminology and methods may differ from here in the UK to your situation in Thailand though still may help. britishlivertrust.org.uk/in...

No question is a silly one and we were all new to this at some point so if you feel you need to ask anything then ask away and we'll do our best to offer you some guidance.

Best wishes,

Katie

Rawai profile image
Rawai in reply toAyrshireK

Thanks Katie,Havent seen your pm where do i look.

Im at the hospital now,having untra sound.

Im feeling ok,no pain just worried losing weight.

Dave

AyrshireK profile image
AyrshireK in reply toRawai

Private message is in CHAT - icon looks like a paper aeroplane.

Give-hope profile image
Give-hope in reply toAyrshireK

Hi Katie, you seem quite knowledgeable on this and wondered if I could reach out to you and on a couple of questions or anyone else that may be able to assist. My husband was diagnosed with cirrhosis in jul23 with portal hypertension. He suffers from fatigue a lot and spends a lot of his time resting and not very active. He developed an infection immediately after he had some polyps removed. He’s been on antibiotics for that. But even though the infection has gone, he gets regular fevers. He too has been experiencing a lot of pain in his lower left back, traveling into his stomach and into the front side of his thigh. Hospital were unable to find anything- but pain is severe and sent him home with a dose of morphine.

Another question - has anyone with portal hypertension been advised they are unable to travel abroad due to the cabin pressure? He is on medication for this. My husband wishes to travel and visit some pilgrimages and this news has mentally impacted him. If they have, were there any side effects and how long were the flights for?

Much appreciated. X

Rawai profile image
Rawai in reply toGive-hope

Early days,took me a while to settle down,yes you do get tired but i make the effort to exercise,if i need a afternoon snooze take it.Re flying,not been aware thats a problem.

Katie im sure can advice.

Dave

AyrshireK profile image
AyrshireK in reply toGive-hope

Fatigue has always been (by far) my husbands major symptom since the start of our liver journey in 2012. In the first couple of years he was almost only getting up for meals then falling asleep again. It seems somewhat contradictory but doing some exercise does help even if that's a short walk round the block, park or whatever and maybe building up. From hubbies early diagnosis days/years he went on to do lots of walking and cycling - writing off the bad days and concentrating on making the most of better days.

Unfortunately with hubby now struggling and in need of a transplant he's sleeping much of the time once again. We don't get any good days.

I would say it's dreadful that they have discharged your husband with morphine yet not got an answer for his pain. Is he moving his bowels frequently? Opioid's notoriously cause constipation which isn't going to help his cirrhosis symptoms and may cause more problems in his bowel.

I would hope that he's had MRI, ultrasound, colonoscopy etc.

As regards flying with portal hypertension the danger is if there are varices present in the oesophagus because these can rupture in flight. Normally you'd need to get an endoscopy and be declared fit to fly by doctor AND have adequate travel insurance in place.

There was an episode recently where a passenger died after suffering an horrific mid-flight bleed and we had a chap in here some years ago who flew back from Africa and he had a bleed resulting in an emergency landing and hodpitalization in France - with no insurance in place he was held liable for the emergency landing costs snd delays incurred by fellow passengers.

Katie

Give-hope profile image
Give-hope in reply toAyrshireK

So after another painful attack in the abdominal area and 12hrs in A&E, my hubby was diagnosed with Mesenteric Panniculitis- which is a lower bowel disease. He was discharged with antibiotics and painkillers and advice that Kings hospital will reach out to us on next steps as my local hospital don’t hold the knowledge in this field and unsure if it is linked with hubbys cirrhosis and sarcoidosis autoimmune condition. I hope now with the 2nd round of antibiotics, the pain and swelling reduces and his panniculitis doesn’t return. Does this mean his cirrhosis condition is worsening? Is this ( and other new conditions) develop as part of this journey?

AyrshireK profile image
AyrshireK in reply toGive-hope

I've never heard of it but lo and behold it seems to be another auto immune condition so it could be another AI condition to add to his list and totally separate to his liver issue. Having had a very quick online read it can occur when triggered by other infections, can be linked with liver issues or can be a standalone problem. Your poor man and yourself are going through the wringer with it all.

Thoughts with you, I am wakened just now at silly o'clock having just given hubby his mid-feed insulin jab and made sure he's laid properly to prevent him aspirating his n/g feed. Going to get snuggled back down again now.

Katie

Rawai profile image
Rawai in reply toAyrshireK

Hypertention

Roy1955 profile image
Roy1955

Your varicies should be dealt with BEFORE they bleed.Have you been referred to a liver specialist and had a full liver investigation and advice with at least 6 monthly check ups?

Switching to a "rabbit food" diet will cause more harm than good.

Even if your severely obese you still need a balanced diet.

Give-hope profile image
Give-hope in reply toRoy1955

Hi, hubby had a procedure last year where they investigated the status of his variances and said there wasn’t any concern and as a precaution added some banding in place. His check in are every 6 months at Kings hospital- we are waiting on a date. The local hospital check up is every 6 months.

Rawai profile image
Rawai

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