Hi and thanks for even reading this. My husband was diagnosed beginning of Sept with alcoholic liver disease and had ascites, oedema, some jaundice, tiredness etc. Our GP has been amazing and he has had the ascites drained ( 8.75L) and condition is we think stable. I'm just finding it hard and ended up taking 6 weeks off work and I'm due back next week (I'm a teacher). He has real sleep issues, sore hands, muscle wastage, still big tummy, bloods holding, on low sodium and restricted fluids. Also has bursitis in elbow whish is a major issue. I'm just after any advice help support as we see the consultant tomorrow and I worry about if this is just the new normal or will it improve?? I have a great son who is 21 but has Crohns disease (diagosed at 12) so could do without this! Anyone in Manchester UK? Thanks for listening.
First post and I am a wife of a sufferer - British Liver Trust
First post and I am a wife of a sufferer
Hi
I really feel for you. There will be someone who will be able to give you better advice than me as I have Nash caused by meds given to me from my drs over the years.
My son, who
Is 24 was also diagnosed with Crohn's when he was 12!! It's a horrendous disease, he had to have a colostomy bag on when he was 19 for 6 months. He can't absorb bike now and was on meds that were doing their job but the chemist can't get them in!! He sees his consultant this month to see what they plan to do next. I live in castleton Rochdale. Love and hugs Lynne xxxx
Thank you for replying it is so helpful at a time like this. I can only sympathise with what you son has gone through as we are lucky enough not to get to that stage even though we were close. Mine is living pretty well on infliximab and long may it continue. I hope your own health is manageable and thanks again x
Karen
You are very welcome. My son takes azathioprine, another med they've finally got hold of for bikes absorbtion and infliximab infusions. I'm keeping my fingers crossed everything carries on going well for him. Love and hugs Lynne xxxx
Hi Positive
Welcome to this wonderful forum..... but very sad to hear the reason why you have had to join us 😕
I regrettably have been through everything your husband is going through. It is truly a bummer isn’t it 👎.
The thing is that we are all different so what happened to me may not apply to your husband. The main thing is to keep supporting him as much as you can (my wife was also a teacher) as I’m sure you will within the bounds of having to do your job. To be honest I didn’t mind being home alone once I was settled in my chair and all the requisite things reasonably to hand - ahem - like the telly buttons!
When you go to the Consultants tomorrow make sure, as has been said many times on this forum, to make a list beforehand of questions you want to ask and write down the answers when you’re there! Don’t be intimidated (easier said than done because it is unnerving isn’t it) and keep asking till you have all the answers and you have understood the answers too!
I’m afraid it will - be as the song goes - a long and winding road ahead.
Hope it hoes well tomorrow. Good luck!
Miles
Hi
Thaks so much for your reply. It helped and made me smile. We have had a lot of info to assimilate since end of Oct and as uch as Xmas etc was a welcome distraction it was also a stark reminder of our new 'normal' - he is managing it well, I am totally managing with emotionsl melt downs! We were finally told his CT scan shows varices at the end of oesophagus and stomach and no fibroscan needed as CT has shown it would be level 4. THis was, despite expected, a shock and has set me back a bit! Things are under control and docs delighted with his progress but we realise how long and winding this particualr road will be and its impact on our lives. He is on spiro, thaimine, lactulose, magnesium and zinc and betablockers just added.
Thanks again for your reply and help
Karen
I am glad you smiled - you just have to try to whenever you can, don’t you.....
Also so glad things are under control for you both - well apart from the emotional melt downs! - hopefully they will fade with time 🤞🤞. It is life changing obviously but with luck you will be able to work around the new limitations and get back to some sort of “normality” - whatever that means! I hope so.
Good luck to you both.
Miles
Hi Positive
Firstly another welcome from me and to confirm that you've definately joined the best forum which is full of very caring and loving people who will be at your side to help and advise you based on there own experiences.
I see Miles has already given you some great advice and the list of questions is a must!
Unfortunately I cannot answer any of your questions as I'm under investigation for non alcoholic liver issue's, however I can honestly say you will be receiving more advice later in the day from others who are in/ or have been in a similar situation to your husband and son so please try and hang on in there!
You may already be aware the the British Liver Trust also have a great website and you being a teacher should find easy to navigate around! They also have a help line which I think is open from around 10am until 3 or 4 pm Mon-Fridays!
Finally, everyone of this forum has good and bad days and you will find there's always someone online from the either the UK, Canada or Amercia or from somewhere else who will be by your side when you feel like screaming , crying or just want someone to chat too! Lots of partners, spouses, carers and family members and patients write on here so you'll get lots of great advice from all directions.
All the best Positive and good luck for today!,
Loads of love
Shropshire Lass/Trish x
Thanks you so much for your reply and taking the time to do so x
Hello
I am so glad that you posted, I think daily of the challenges we alcoholics bring as gifts to those who love and support us. Unfortunately, however tempted you may be, you can’t easily exchange these gifts for store credit or full refund.
There is no one in my family who suffers from Crohns but my mum has a friend whose daughter was diagnosed at about 12/13 and although she is now in her early 40’s, I recall the grief, confusion, total despair at being unable to help that my mums friend went through and still does.
And then your husband got diagnosed with alcoholic liver disease and if it’s anything like the road I followed to diagnosis, it will have been one full of pot holes, skid pans and blind corners with mirrors that we chose not to look in. I had ascites, looked like I was 9 mths pregnant with quads, legs I couldn’t fit into trousers and feet that were so swollen I had to cut my socks and wear Crocs. Likewise my GP, (who I’d never met before as I hid from doctors, fully aware that to consult with them would result in a stranger stating the blatantly obvious), has been just awesome. Pulls no punches but was so on the ball that when I had my first visit to the liver specialist, I had mercifully had a 3 mth start on the correct medication with the exception of one drug to slow my heart (to alleviate pressure on my knackered veins).
I will not bore you with my details suffice to say it’s been 12 mths and 6 days since I stopped drinking alcohol. And in that time I’ve been scanned, prodded above and below, had so many needles inserted that I am sure if I go in the bath i’ll fill up with water, stapled, had jaundice, lost close on 6 stone in weight (I wasn’t circus fat to begin with, no offence intended to weight challenged individuals or circus employees) and am so desperate for a rich bechemel/Parmesan laden lasagne that I would mug Garfield.
So I suppose by writing the above by way of a welcome, what I really want to say is this path that your husband and I and many others are following presently, is not a straightforward one. There is no right or quick way to get from A to B, each of us will get there a different way having shared handy tips for sure but the scrapes and bumps along the way will be different. That’s why you need to arm yourself with all the information you possibly can. Ask lots of questions of specialists, regularly fill up at the GP in between hospital stops. And visit the oracle of life (this forum) as often as you can for non judgemental support, friendship and reassurance.
There might be bleeding, bruising, constipation, confusion, clumsiness, coldness, red spider marks, forgetfulness, insomnia that feels like torture, high BP/low BP, hair thinning, repeated swelling, exhaustion like nothing encountered previously, pain, sickness, more bruising.......the list is endless as the liver is such an intricately multifunctional organ for total body and brain metabolism (I’m a biochemist and love being a drunk).
I also wanted to say to you please for your own sanity, think about you in all of this. We alcoholics are being looked after, we hope, by well capable medical professionals, in a system which by and large spits out appointments and hospital treatments. But you will very quickly become rundown, frustrated, possibly exhausted coping with both your husband and worrying about your son. Stay as well, fit and healthy as you can.
I haven’t even touched upon your profession as a teacher but I take my hat off to you. Total respect for all that you do. By your one post alone, it’s obvious you are a compassionate capable individual, your students are lucky.
If you manage to read to the end of this pontification, well done! But I write in all sincerity. I hope to see you on the forum when you need to and even when you don’t. Take care,
Alicia
That is a fabulous and very accurate and detailed explanation of what the journey is or can be.
I agree totally
Hi
Your post was a welcome relief and also made me laugh! You write so well! Thank you for taking the time to even relpy never mind with that detail. Our visit to the consultant was good but mixed. They are delighted with his progress but we had it confirmed that the CT scan shows varices at the end of oesophagus and into stomach so betablockers added. Also CT scan means no fibrocan needed as it would show he is a level 4. This, even though expected, was a bit of a shock. ZInc also added to help skin on hands which is painful itchy and thin.
He is pretty positive which is good and into 5th month no alcohol which I am impressed with.
Adapting to our ne 'normal' is tough though and my job needs me to be 100% 'uo' to perform teaching to kids all day so we are in discussion as to whether now is a good time to return however I don't feel emotionally stable enough yet but then of course gulit creeps in etc etc
The ramifications of this disease are so far reaching it's actually quite incredible.
Anyway, thank you again for taking time to help us!
Karen
Hi Positive, and welcome to our wonderful forum.
I was diagnosed with F4 cirrhosis about 31/2 years ago, and had most of the symptoms your Hubby has. You ask if this is the new norm, and I'm afraid to say, for most of the symptoms he has.....yes it is. With good management, and absolutely no alcohol.....EVER, the ascites, jaundice, bloods & tummy etc should stabilise. Strangely, I had bursitis on my left elbow (left handed), and bought a gel pad on Ebay to support my lower arm when using the computer etc.
The sleep problems are typical of cirrhosis, and very difficult to rectify. I take amitriptyline which helps somewhat. I also have quite bad pain constantly from the Glissons capsule that surrounds my enlarged liver and spleen, and that is also difficult to control. I also have oedema in my feet and ankles, and peripheral neuropathy ( numbness) which makes my walking a bit unsteady.
As others have said, write a list of questions to ask the hepatologist, and also, ask about a fibroscan, if Hubby has not yet had one, and the stage of his cirrhosis.
I have a Granddaughter with Crohn's disease, and a son and daughter with ulcerative colitis, and know how difficult it is to control.
I hope we can give you and your Hubby support, and some knowledge and insight to the road ahead.
David
Thank you so much for taking the time to reply - we both really appreciate it. His appointment went okay - mixed- as they are delighte with progress but again like a brick in your face how long this journey will be. Also told CT scan done 4 weeks ago showed varices in bottom of oesophagus and stomach and no fribroscan needed as CT covered it and would be a 4 so quite stark news. Added in beta blockers and zinc,
He's doing okay but quite an emotional rollercoaster for me and not sure emotionally stable enough to retuen to work yet to perform in front of 33 little people in my teaching job. A dilemma.
Anyway thanks again for replying
Karen
Hi Karen,
I'm sorry to hear Hubby has F4 cirrhosis, I know it's like a kick in the teeth when you first hear it, but it's not the end of the world. As I said before, with total abstinence, a healthy diet , and reasonable exercise he should be able to manage it. I found,after I gave up drinking, the change in my general health, was quite marked. The bloods and other symptoms did subside a bit, but not go completely. After about 6 months, my bloods were nearly normal, except for very low platelets, which persist, which results in bleeding easily, and very slow to clot. I have nosebleeds which are another possible symptom.
Be prepared for other symptoms to surface though, like my capsule pain, caused by my spleen which is twice the normal size, as it tries to help the liver process all the toxins, especially salt, which is everywhere in bought products.
I have also developed mild HE which causes problems with lack of concentration.
I am having a CT scan on Monday, to see if there is any other reason for my capsule pain. To be honest, if I could get rid of that, it would improve my wellbeing no end, not to mention my sleep.
Has your Hubby had a gastroscopy yet? I had to cancel mine before Xmas due to a bad cold (cirrhosis also affects your immune system, so watch out for that one) He should get one to check on his varices, and if necessary, have them banded. My varices aren't big enough yet to need banding, so are just being monitored.
As you have probably deduced, cirrhosis affects so many things in your body, as it has to perform about 500 functions, and when it's not working properly,
the symptoms are many and varied. I am 72 years old, and so a transplant is unlikely for me, I've been told, so I just manage it as best I can.
Many people here have had the gift of a new liver, and their lives have been turned around with the new chance they have been given.
You and your Hubby will get used to the situation, and start to think more positively, and that, in my opinion, is the key to coping with cirrhosis.
Take Care,
David
Hello
He had an endoscopy which showed minor varices in throat and not to be concerned about but the CT scan showed varices at the end of oesophagus and intot the stomach and he has been given betablockers for this and will strat them Monday along with zinc to hopefully help his hands. His hands are sore and the skin thin and can be itchy. I think his hands and the bursitis in his elbow are causing the biggest issue at the moment as they affect his sleep which already affected!
I really appreciate the advice and information you can give. He is only 50 so a long road to go I hope
Karen
That's strange Karen. My gastroscopy is always the length of the oesophagus , and down into the stomach, that's where they found a small ulcer, and a few small varices in my oesophagus 2 near the top, and 2 near the bottom. They also took a few biopsies.
I have tissue skin on my hands, and get under skin bleeds with the slightest of knocks. Itching on arms and legs in my case, are common with cirrhosis.
Have you tried either an ice pack or heat pad for his bursitis. Pain relief when you have cirrhosis is very difficult, as many painkillers are bad for an already struggling liver.....any anti-inflammatory, such as Ibuprofen is a definite no no. Paracetamol in reduced max daily doses are OK though, I am told. I take 2 x 500 mg caplets twice a day to help with my capsule pain, along with amitriptyline, which aids sleep and is also helps with pain.
You should see your GP about pain relief. I know it can bring you right down mentally, and then it you snooze during the day, it makes matters much worse for the night sleep.
I hope this helps a bit,
David
Hi,
There's a few of us here around Manchester I think. I myself am in Salford.
No experience of alcoholic hepatitis I'm afraid. My liver issues were caused by something else. However, the resultant symptoms and some of the issues will be similar.
The good think seems to be that your husband's bloods seem to be stable. He is though at a pretty advanced stage by the sounds of things but there are many stories and posts on here from people who have recovered to a large extent from that stage. The cirrhosis wont go away. But, things can improve if he keeps off the alcohol.
There are plenty of people on here that can lay testament to that and I'm sure many will post their story for you over the next few days.
If recovery does happen, then it's likely to be quite a slow process.
Good luck and hope things work out well.
Thanks so much for replying and hope you are as well as can be x
Welcome to the forum. You will get wonderful support from your fellow forum users. You are going through an extremely difficult and stressful time with all your energiy going into caring for others. Do not forget to care for yourself too.....
Thank you so much. I am due to see a counsellor next week
THank you so much everyone you r replies have really helped us
Hi
How are you feeling tonight?
Everyone on here knows about my sleep issues, one hour or less due to pain. You are in my thoughts and prayers as you cope with 2 very different situations. I have Nash with fibrosis caused by meds from my drs over the years!! If you need to pm me feel free to do so. If you want advice re Crohn's, I will try to help , if I don't know the answer I will ask my son. He is 24 and was diagnosed at the age of 12. It was like banging our heads against a brick wall until my hubby came with us and then they listened, this also infuriated us as not everyone has a partner to go with them. I did put in a complaint in partly cos of how we'd been treated but also to hopefully stop others feeling the same way. Sorry for rabbiting on, you will get used to me!!! Lots and lots of love and hugs Lynne xxxx
Hi Lynne
Thanks for the reply. I like to chat away too so don't worry!
My son's Crohns is well managed (thanks goodness) but stress causes him an issue which has obviously been an issue with his dad getting sick. This time last year my son was hospitalised for tonsillitis - a reminder that Crohns makes nothing straightforward! Thankfully we're not dealing with that this year.
We saw the consultant on the 2nd and gained more insight into what is going on which was mixed. Pleased with his progress but def F4 cirrohsis and varices at end of oesophagus and stomach so on betablockers starting Monday.
His elbow bursitis and sore hands are his biggest issues at the moment which affect his sleep which is already affected! We're only 50 so a long road ahead. I have major decision to make about work but as soon as I think about it I go into emotional melt down. I teach but two days a week however I changed school hours year group on Sept and then end of Oct we started this nightmare so it's all a bit overwhelming hence the dilemma I am in. I think deep down I know what I should do but feel I'll be letting everyone down. Tough call.
Sorry to whinge on about my work situation as it's irrelevant to everyone's health situation.
Thanks again for replying
Karen
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