Sick of worrying

His all I'm new on here so bare with me please.i was diagnosed with cirrhosis November last year from drink,I was 16 stone and I was put on a diet and I lost 3 and half stone in 3 and a half months,I didn't touch any alcohol at all then I relapsed a month ago because I wasn't coping with my diet,I stopped drinking 2 weeks ago because my belly inflamed,I went to a and e and they said they think my liver has inflamed again,they said I have to have an ultrasound but can take up to 6 weeks,I've stuck to my diet and I've still got a blotted belly,I'm hardly eating and now I'm 12 stone,I'm 6 feet tall and I look really skinny I'm sick of it now,I walk everywhere as well so I get plenty of exercise but it's still inflamed,all I seem to be doing is worriying, has anyone been through this experience if so please help.thanks you

16 Replies

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  • Hello Puresilver, welcome to our merry band.

    Did the medics at A&E examine your tummy? Did they palpate it to check it wasn't fluid build up? If it is fluid build up you can't be waiting 6 weeks for ultrasound scans as this may be ascites which requires draining a.s.a.p. The ascites can make you look pregnant on a skinny frame, it can interfere with breathing and appetite and the fluid can become infected leading to further more serious health issues.

    Your liver will sadly have become re-inflamed after your relapse in drinking. Cirrhosis is scarring of the liver which happens as a result of normally a lengthy period of inflammation. As the liver tries to fight the inflammation it throws out fibrous tissue to protect the liver cells and as more and more of these fibres squish and squash the liver cells it leads to permanent scarring. If the cause of the inflammation is removed then the liver can sometimes recover and even reverse some of the scarring. Sadly by recommencing your drinking you have reignited the 'fire/inflammation' hence the reason it is grumbling once again.

    Keeping a healthy weight and doing some exercise will help you long term but you also need to eat properly to fuel your body during exercise, you should get some dietary guidance as you don't want to become too skinny. A cirrhotic liver needs regular feeding with protein and carbohydrates as it will no longer be able to metabolise foods properly to provide energy and will instead start to burn your muscles. I shall ping you a PM with a leaflet attached which explains this more clearly & in more detail.

    I am sure you realise you do need to tackle your problematic drinking, if you continue to give your liver a battering you will sadly become very, very poorly and if you can't prove a lengthy period of abstinence and continued dedication to life long abstinence then transplant would not be considered as a treatment option.

    Hopefully you are seeing a liver doctor and you can get things under better control. If you've not seen it already the British Liver Trust has a page on cirrhosis and one on Alcohol Related Liver Disease and these are at:- britishlivertrust.org.uk/li...

    britishlivertrust.org.uk/li...

    Wishing you the very best of luck, will ping you that PM just now.

    Katie

  • Thanks Katie much appreciated for taking time out to reply it's priceless thanks again.

    The thing is I had a flat stumoch when I reaped for 10 days or so and a week after I stopped,then it inflamed and I had abdominal pain,the a and even just gave me codeine,and I had to contact my gp to get an oppointment for an ultra sound,my doctor was fuming they didn't a scan.when I was in hospital for 2 weeks with jaundice they did an ultrascan and I had camera down my throat that's when I was diagnosed,I went to my doctor because I didn't understand what cirrhosis was so he explained it to me and drew a diagram for me,I asked him how bad it was he looked at me and said it's nackerd and it won't repair,that was his true words,I asked to see a dietitian and I went to see one,I was put on a stick diet and I kept to it,no red meat no fried food fatty food hardly any salt,sugar,I love healthy food and I exercise loads,then I had to see the dietitian again but this was a different dietitian and because I'd hit my bmi she said I can eat normal but if I go over 13 stone I have to diet again,so I thought to myself I might as well eat healthy food all the time than on and off on a diet which I don't mind,I'm on vitamin b and b and omeprazole,some days I'm freezing cold my hands are the worst I always itching all the time and feel shattered,the drink doesn't bother me I'll be honest,I'm peed off because I've done everything by the book apart from the relapse and I'm getting no answers why this is happening,I think your right I need to see a liver specialist I don't care what I costs I'll go private,thanks again Katie.

    Lee

  • Lee a lot of the symptoms you are describing - the feeling cold all the time, the fatigue, the itching are all symptoms of your cirrhosis. Sadly as your doctor says your liver is very seriously damaged, however, a cirrhotic liver can vary between two states (Compensated & Decompensated) and it is possible to look after yourself and keep the liver in the lesser poorly state of compensated.

    Compensated cirrhosis means that although your liver is very damaged it can still carry out some of it's functions. Your liver does 500 jobs so when it's damaged some of these like temperature control, hormone synthesis etc. go by the by as the body concentrates on doing the major more important jobs.

    Decompensated cirrhosis is when the liver is really struggling and you get the more serious and obvious and even life threatening symptoms because the liver is just not coping and is no longer doing even the most important of its jobs.

    My hubby was decompensated in April 2012, was massively jaundiced, was bleeding from varices and was very poorly indeed. He's been under a local gastroenterolist since then and also attends Edinburgh for the liver specialists and his liver is currently classed as stable and compensated. He's still exhausted all the time, has severe sleep disruption and also has confusion, concentration and memory difficulties, cold a lot of the time too.

    Due to his cirrhosis he has suffered varices in his oesophagus, portal hypertensive gastritis in his stomach, aneurysms in his splenic artery and minor symptoms of hepatic encephalopathy.

    It is an awful illness but you need to battle on - seek help for the drinking and don't resume as your health will inevitably get worse if you do and very sadly there will be no way back.

    Do ask your GP for referral to a liver specialist - your GP seems much more sympathetic to your situation to what you met at A&E. Sadly some in the medical field are too dismissive when the issue is the liver, some automatically assume drink and some are very, very negative towards drinkers (my hubby is life long t-total and his condition came about due to an auto-immune illness but in the HDU a doctor still came along and said "Let this be a lesson to you, you need to modify your behaviour!").

    No matter the cause of your liver ill health you deserve the treatment you need - particularly when you have followed instructions to the letter as regards the diet and exercise. If you can tackle the drinking and stay committed to sobriety you could come out of this - ask for that referral to liver specialists so they can monitor you appropriately going forward (you will need regular blood tests, 6 monthly ultrasound scans to check for any nasties appearing in the cirrhotic tissue, a regular endoscopy to check for signs of portal hypertension and varices) & if you can return your liver to a compensated state you can be healthy enough and prove your abstinence in order to perhaps qualify for transplant further down the line.

    We have numerous posters on the forum who have turned their lives around following alcohol related cirrhosis and have gone on to have successful transplants and are now living life to the full again.

    Rooting for you, Katie

  • Thanks Katie and thank you for taking time out to reply, it's awesome feed back and I'll take it board for deffo,you have calmed me down a lot and I'm not panicking as much,I'm off to doctors on Tuesday morning first thing to sort out a liver specialist,I will get my head round this haha,thank you soo much

  • Ello Kate

    Would you be so kind and message me Liver cirrhosis diet/ nutrition information, you have mentioned in your postatnie.

    I've got constant problem with digestive system becouse Liver cirrhosis and Chronic Pancreatits.

    I appreciate your help

    Thank you

    Ania x

  • Hi Ania, will send you a PM.

    Katie

  • Hi puresilver,

    Please stop drinking. My husband is a recovering alcoholic and if he'd have stopped drinking, he wouldn't be as poorly as he is today. He had ultra sound on his liver and that showed the beginning of liver disease. He carried on drinking to excess and now he has end of liver stage cirrhosis. If he doesn't have a liver transplant he will slowly die. It's a long drawn out disease and we're in and out of hospital continuously with a blown stomach (fluid around his abdomen called ascites), encephalopathy (ammonia in the blood, which can cause comas, if not treated quickly enough), and he's constantly having blood and iron infusions because his stomach, oesophagus are that badly damaged, they are permanently weeping blood.

    You really do not want to get to this stage of liver disease, it is exhausting, worrying and depressing. You can't plan anything because you never know when he's going to be admitted to hospital again. We have visits to A&E in the early hours of the morning and wait, sometimes for 6 hours or more before he is given a bed. The hospital stays are becoming more regular, at the moment he is only at home a week at the most before he needs more treatment/blood transfusions.

    My husband is now on the liver transplant waiting list, but its like Russian roulette and he may not survive long enough to receive a liver.

    The liver is the only organ which regenerates itself, but if you keep drinking, you will damage it beyond repair, as my husband has discovered. For your health and happiness, please don't ever drink again, no matter how tempting.

  • Thanks bonaire for sharing you and your husbands story it must be hard for you both,I really hope your husband gets a liver transplant asap so you can enjoy life again,I'm actually gonna print your story off and tape it on my wall to remind me because I don't want to be like that...

    I wish you and your hubby all the luck in the world.

    Thank you soo much lee

  • Hi pure silver , i know it hard but try and stay as calm as you can ,you are doing everything right , i know it worrying but it does change anything. Just talking from my own experience, when nobody could give me the answer i wanted ,but im 5 year post decompensated liver , and ive found the answers in my self . Looking after my self,mind body and soul and making myself a priority and upto now it working. I hope you get the medical answers you need to give you peace of mind. Hope you have a lovely easter.

  • Awwww thanks catrina for that,I'm gonna be selfish and look after myself from now on,just sick of itching I'm like a cat with flees haha,got to laugh or I'll only get mad,I hope your doing well Catrine keep smiling x

  • Hi pure silver . Hope you had a peaceful bankholiday and hows the itching,have you ask your gp for advice . I feel that i want to skip classes this week, to pusuade myself to go i bought new gym gear for my class (and I now, soo like wearing new clothes) its a treat now there is only one income coming in ,but if I dont feel it, I will now style it out and look the part. Go and treat yourself to some new ,keep reminding yourself of your worth go and buy a new pair of sunnies its a start. .

  • His catrina,nice to hear from you,I went to doctors and they said It might not be to do with cirrhosis,and been cold all the time as well,I said what is it then she said I don't know it could be many things,I said look love get me in touch with a liver specialist because I feel more stressed walking out of here then I do walking in,then I walked out hahaha

    I'm just taking hayfever tablets at min,shopping doesn't make me feel better I have a 1 hours massage once a week that's sorts me out

  • Is doctor referring you to liver specialist then Lee? Cold all the time and itching (pruritis) are certainly both symptoms which could be to do with your cirrhosis. You definitely need to see a liver specialist to get appropriate treatment & proper monitoring.

    Katie

  • His Katie, the gp said she was,I'm still waiting for a letter to have another ultra sound it's been nearly 3 weeks,some times I think to myself is it me thinking the worst,but it's not I'm always an outdoor person I hate been indoors does my head in,I'll end up in a padded room soon hahahaha

  • You must insist you see a specialist. Your gp is a gateway to other services , you have a right a patient to aske to be referred on. In the meantime you need to try and get your stress levals down. Its great that you have the massage. Have you tried a yoga class I didnt like it at first , but you are so concentrating on the moves and breathing , it releases any other thoughts. It is horrible being cold all the time I sometimes look on our summer with distaste, as i look stupid with layers of clothes on in july. It did take a long time before my appointment came from the referal and I am well looked after now. Hope you gain some success with it.

  • Hi cateina,not tried yoga can't see me doing it really,I'll keep in mind though,I loves massages they chill me right out,only thing stressing me out is I'm out of work at min,and I've never been out of work,it's depressing me,going for ultrascan on Monday so I'll know if it's hot any worse,fingers crossed,the gp is definitely getting me in touch with a liver specialist so I can't wait to see him,I'll have a list a mile long of questions hahaha,roll on summer.thanks for your help cateina I hope your well and keep smiling

    Lee

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