Hi everyone, I have not posted for a while (but am a regular reader and lurker) since my first post about my husband's diagnosis and drinking. Since my last post nothing has altered with my OH's drinking, truth be told I was hopeful his diagnosis would give him the wake up call needed but deep down I knew that the mantra of "I will start tomorrow" would continue and, as the saying goes, tomorrow never comes. Alcohol, it seems, is the mistress I simply cannot compete with.
His health has continually deteriorated, and is now decompensated. He had his first ascites drainage last Thursday (4L) and it is gradually starting to come back again. My life now consists of morning weigh ins, washing bloodied bed linen (he scratches his skin in his sleep every night) dishing out medication, monitoring bowel movements (he has started suffering with constipation) and dealing with his terrible mood swings. To make matters even more interesting, we are in the throes of a house move (I can no longer cope with running a larger house and big garden on my own, so downsizing) which I am dealing with on my own. Life is certainly interesting at the moment!
The one thing I have noticed for the past few months is a very strong, almost sweet garlic smell which seems to permeate throughout the house. I can no longer sleep in the same room (I have been sleeping separately for over four months now due to his constant waking through the night), and the smell is overpowering. When I wake him in the morning, I have to literally air the room out as the smell is so strong. It is almost like a sweaty, garlicky smell. I am extremely conscious of this smell now, and oddly he does not notice it. Even after he showers and brushes his teeth, the smell is just as strong. Has anyone else noticed this at all? What I have noticed in the past few days since he has started with lactulose (due to constipation) is the smell seems to be less pungent, but it is still there?
Is this normal or am I starting to go slightly mad (which wouldn't surprise me!)?
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The smell you are probably experiencing is called foetor hepaticus and it's tied up with toxin build up and it leeching through skin, in breath etc. The smell can vary, in some it's musty, in others they label it 'the smell of death', in others like cat pee - in my hubbies case he does get it often but it shows on his breath and stinks like dog poo (yuck).
The fact your hubby is hopefully now moving his bowel he'll be ridding body of some of the toxins. If he's not on it already then Rifaximin might help too and may help prevent Hepatic Encephalopathy too.
Hi Katie, and thank you so much again for your fantastic advice. I thought I was being hyper sensitive and going a bit bonkers. It is a horrid smell, and thankfully I can only smell garlic! Very odd as nobody else seems to notice it (I am super aware of being around people now with him as I never know what he will say or do, and adding a pungent smell into the mix just makes me more nervous). Hubby is still struggling with constipation, but the smell has definitely started to become less noticeable so it is obviously doing its work. Strangely enough, I have an elderly cat on lactulose due to kidney failure, and now hubby is on it too (he is easier to administer, trying to medicate a cat with sticky lactulose is another thing entirely!)
I will speak to the Liver Nurse re: Rifaximin next week as I have noticed he is becoming a bit more muddled with days/places etc. Oddly he seems fine in the mornings, but as the day progresses he becomes more lethargic, moody and gets little details mixed up, he sleeps a lot during the day and when he wakes up in the early evening he thinks it is morning.
My wife had a similar experience to you regarding my smell. I was ill upto my tranplant in 2019 and she said that I had a smell akin to pear drops,my clothing and bed linin also smelt of it. Of course I had no idea. We only found out about it after discussing it with a transplant co-ordinator at Kings.
Hi Max, and thank you for your reply. Your wife is spot on, everything in the house smells of it, it seems to have seeped into everything (I suppose because I am now aware of it I am smelling it everywhere). At least now I know what it is.
hi you poor thing, you are being very brave and heroic. I suspect he needs to increase his lactulose ( the aim is to poo 2-3 times a day) to get rid of the toxins, he might need enemas as well. How much lactulose is he taking? As it’s going to be a BH, you could ring 111 and get a phone call on how much you can give him. ( I had to 60 mls x3 and have daily enema!) if you can’t get hold of a doctor, try increasing the lactulose to 3 x a day and speak to your GP on Tuesday. Good luck
Hi Cat, and thank you so much. Good grief, you are the brave one. I am definitely no braver or heroic than any of you, if anything after joining this site and reading some of the personal stories and responses I feel like such a wimp (there are days when I feel really sorry for myself and then I realise what my hubby and I are going through pales in comparison to many other people's experiences). You are all heroes to me! One thing I will say is, thanks to all the wonderful people on this forum, and my husband's fantastic Liver Nurses (who have the patience of a saint) I feel better prepared for what the future holds. I just wish my husband would read up on all the literature available for his disease, sadly he has zero interest and even though I have shown him this site, he refuses to acknowledge what is going on with his body. Nothing anyone says seems to sink in.
I have him on lactulose three times a day (30ml) and I was also advised to give him Senokot, which strangely has done nothing much. I have rung 111 this morning and am waiting for a doctor to phone me back and will hopefully have an idea as to what to do next.
it sounds like the district nurses need to start coming in to give him a phosphate emema daily, can you speak to his liver nurses over the weekend? There are liver trust nurses available to advise you, I suspect he needs more lactulose and enemas now to get rid of the toxins. I drank myself into decomensated liver failure and (everyone will agree, that only the patient can fight the disease! I decided I never wanted a transplant, so I was able to switch to zero percent wine, gin and beer, but drinking zero % means I can’t ever have a transplant. That’s your husband’s decision ( as is everything else!) You need to concentrate on your own well being and make “me time “ every day! That’s the most important thing you can do to help your husband. Good luck I’m here if you want to talk x
I was diagnosed with liver cirrhosis about 2 years ago . It wasn’t from drinking or drugging . I was adopted at age 2 and it was passed at birth from my biological mother .
Anyway , I’m in the advanced stages of the illness now . And , before my TIPS procedure , I used to get about 20 liters of ascites drained every week . My skin itched so bad I would scratch til I bled . I take linzes 2 times a day for constipation. And I’m told to drink 60ml of that nasty lactulose 4 times a day . And I have to get iron infusions . I’m anemic too . Thank God , no one said I smell like garlic 🧄. I HOPE I DIDNT ( or Don’t )
Hi GoldZenith, I am so sorry to hear about your diagnosis - this is what makes me so angry, that someone could willingly do this to themselves when they have an option to remain healthy and so many others like yourselves have it through no fault of their own. My darling mom died of cancer 2 years ago and she fought so hard to stay alive, she wanted to live more than anything, and yet my husband is literally killing himself with every drink.
You have been through so much, and you are incredibly brave. I have to admit, I did laugh about your comment about the smell of garlic! Mind you, I suppose there are worse things we could smell of (and at least he won't get bitten by any mosquitoes or midges, so he is handy when we sit in the garden!).
I agree with you about the lactulose, it tastes awful😝
I understand what you mean about the smell, do you know i feel such a fool but thought it was my cats. My husband was diagnosed with cirrhosis 12 months ago, he drinks 24/7, lager, wine, then goes to the spirits late at night. He can barely walk without holding onto the walls in the house. He did give up for 3 weeks and started to walk better, but sad to say it was shortlived. I feel so guilty because i have moved into the spare room, I cant stand the horrid smell, the constant waking me up (i have to work i am 65), the awful snoring. He now blames me for the hopeless marriage because i have left the bedroom.
Is any other woman understanding this x
We used to be very very happy, 26 years, he had his own company, we travelled the world, he always liked to drink but was in control but not anymore, he has changed so much, the Pandemic hit us hard, we lost all our savings , and he has i feel given up. We went to the doctors on Tuesday and he said if you cant help yourself no one else can. We have turning point at the hospital but again he will not go. I asked the doctor for a diagnosis, he sternly said Chronic Alcoholism.
What i need to know is how other women deal with this, what is wrong with him, is it HE, is it Werneck E, is the liver dying, he was taken by paramedics to hospital last week as i thought he was having a heart attack. They sent him home "intoxication" feel so ashamed xxx
I understand you completely. I also thought it was the cats (I spent many a morning on all fours sniffing carpets much to the bemusement of my cat, and even went to the vet to get her checked up!) .
As for dealing with it, I think (and I speak for myself here, as loads of other people will have far more experience with this than me) we all have our ways of coping, but one common thing I have found on this site is the importance of "you". This took me a while to understand, and follow. And some days I still struggle with it, but it is important that you stop questioning yourself, or blaming yourself (easy to say when often we bear the brunt of their outbursts). But "you" are important, and never forget that. I have ensured that I have a routine - his needs in the morning, my needs in the afternoon. And now I am getting used to all the issues around both his diseases - namely alcoholism and cirrhosis - I find I no longer panic. There is such a vast amount of reading to do about all the symptoms that present themselves, and sometimes reading on Dr Google can put you in a flat panic (I am oftenguilty of this!) , but at the end of the day the only people who can confirm or deny are the doctors. Building a relationship with his team (Liver Nurses, doctors and consultant) is vital, as this ensures you know what is going on and if you have any questions, they are a brilliant resource. As is this forum. I have had many a time when I have felt unsure of what is happening, or whether it is urgent, and have called on the Liver Nurses and they have been open and honest with me and put my mind at ease.
As for my husband and I, we have only been married for 8 years, together for 10, and we haven't had a marriage in the physical sense for 4 years. I empathise with you completely, and we constantly question ourselves. But our problem is not us, it is the alcohol and the addiction. I absolutely HATE it. The smell, the sound of the cap on the wine bottle opening at 9am every morning makes me so anxious as I don't know what is in store for me that day, and having to walk downstairs every morning having to find half filled wine glasses under the couch, in the study, and in the kitchen. We had a perfect marriage for about 3 years and then the alcohol abuse he had inflicted on himself for years (before I met him) started to take its toll. We too travelled, had an active social life, everything was perfect. He lost his job about four years ago (which I now know was due to him drinking on the job), he had to take early retirement and during lockdown his drinking and health got steadily worse. He was diagnosed two years ago now with ALD, and he now has decompensated cirrhosis. He can barely walk now, he shuffles along, his balance is awful, his memory is getting worse, and he can do nothing to help me around the house at all.
I daren't socialise with anyone for fear of what they would think. Or what would happen (he gets very volatile, and has had a few "incidents" with members of the public due to his aggression). This puts me on edge every time we go out anywhere, so days out having a fun are now a thing of the past. Most of our friends know he is an alcoholic (it is hard to hide, the signs are clear as day) and I have stopped making excuses for him. And all our friends have now gradually disappeared into the ether, so I decided it was either feel sorry for myself, or leave him to it and start making plans for my future. I chose the latter. A hard choice and, yes, I do have days when I am incredibly upset and just feel utter despair. His family (who live quite a distance away) just say how strong I am dealing with it..I am not strong, I am struggling and some days I feel like running away as I cannot cope. And yet he sits there, drinking, completely oblivious to me, my feelings or what I say.
My husband has "promised" so many times that he is going to give up, and in the beginning I believed him, helping him and encouraging him, but he would sneak drinks on the side (going to meetings with fellow alcoholics only to go the pub after for a drink, telling me he is off to play golf and then finding out weeks later he was in the pub). The Liver Nurses and doctors have told him he is critically ill, and unless he stops drinking the end result is him dying. Still he carries on, drink in hand saying he is going to stop. I have given up counting the amount of times we have had the ambulance out for him, due to him falling, collapsing down the stairs(he has had a fractured face, stitches in his head...it goes on) and how many times I have driven him to A&E in a panic thinking he was dying. And every time it has been the same as yours..he is drunk/intoxicated and they discharge him. I used to feel shame, but now I feel complete indifference. And this is what shames me the most.
I am sure loads of other people will have wonderful insights of their own on here to share with you, and trust me they are all brilliant. This forum has really helped me so much over the past two years, it has helped keep me sane!
Thank you so much for your reply, i am sorry for you going through this, it sounds as tho are lives are similar. I believe this forum will be a lifeline for us, as it is hard to talk to people around me who do not understand whats going on behind the scenes, and you have to put on a happy face especially working with the general public.
Watching Her Majestys funeral today shows how much love and respect there is around, i feel we need to surround ourselves with likeminded people and not let this toxic lifestyle thats happening in our home continually drag us down. Tomorrow is another day and I am going to try and be more positive, nothing lasts forever not sorrow or happiness, I pray we will come out of this and find peace of mind. Take Care xx
I found reading your post difficult, I do hope that someone is helping you too and that you have an outlet. It must be incredibly difficult for you. You sound like you’ve got a lot on. Make sure you get some ‘me time’ too and treat yourself to some nice things. A nice spa day or even just a nice long walk in the countryside. I’m afraid I was like your husband and ended up in a terrible state. Alcohol took over and I got seriously unwell. I ended up in hospital with a deep rooted infection and acute on chronic liver failure. I nearly didn’t come out! After that I knocked alcohol on the head and haven’t touched the stuff in nearly 18 months now. My health has dramatically improved. I’m well compensated and take no meds. I run a couple of miles a day and feel very well. I realised when I was in hospital just how much damage I was doing and since that terrible fright have now become very conscious how precious life is. A bottle of wine just isn’t a substitute for being able to breathe in fresh air and feel the sun on my skin. I don’t know whether he will consider getting some help...even entertain a trip to the GP? It sounds like you both need some support, so would you consider a discussion with your GP? I do hope things improve for you.
it saddens me to hear you are suffering due to your husbands state. I too had decompensated liver cirrhosis, went for to the hospital several times with massive bleeds, but what hurt me the most was seeing my husband’s sad and worry face. It aches me to the core. That I made a promise never to have a drop off alcohol. I am now sober since my a diagnosis 6 years a go. I am very great full that it was his support an love what motivated me to look up at life with a more positive prospective, I owe my life to him.
Thank you for your post. I was also decompensated and jaundiced a couple of years ago (no varices) and fortunately the shock made me give up. Now 26 months dry. I went back to compensated in six months and have stayed there since. All bloods in range. I have a cirrhotic ecotexture to my liver. A question of you don't mind. How is it 6 years on? Any longer lasting effects? Thanks
It has been a slow “recovery” I guess I can call it that, now all I have been dealing with is the random fatigue and insomnia, body aches and less frequent nausea. Stuff I can live with and manage.
I would avoid the links best go to NHS or somewhere sensible. It's a sort of reverse flatulence I have read; it comes out of your mouth, at 56 I have had this for 30 years now. 3x bowel movements per day are good for removing toxins like ammonia from the gut.
I should also mention that when the body enters into an REM sleep, the CRTC2 gene (Also known as the switich gene) changes the way our body burns sugar (glucose). During our REM sleep, the body burns off fat through the lungs. This can cause us to have a nasty taste in our mouths in the morning. Just a thought.
Thank you Richard, in your experience with chronic alcoholics who will not/do not want to give up, how are us wives meant to cope, the doctor, understandably was very angry last week with my husband, and said i would become a young widow (65)... do i continue to supply him with alcohol, because if i dont he would get in the car and drive, and that would be disastrous. I am losing all respect for my husband but feel guilty when i buy him alcohol. What a terrible life he is leading, it has made me so down.
Hiya. I know what you mean with the smell! I really do feel for you. I've had a dangerous few years with alcohol & drinking very nearly killed me after a gastric stomach ulcer burst & I was 999'd to Hosp. I live alone & was vomiting & passing black blood for about 3 days, in total body shock but was able to ring & get help..... just. I'd stopped drinking gradually 2wks prior & thought I had food poisoning! I didn't know I was seriously internally bleeding. Your hubby needs help to stop drinking or he could well die & that's the bare, basic truth of it. There's a lot more to my drinking but everyone's back-story boils down to the Chapter where alcohol takes over everything. Your body can only take so much abuse! I haven't touched alcohol since that horrific near-death episode. Today for me is Day 699 alcohol-free 🙏 I've succeeded thus far by being acutely aware of my "triggers". I leave any situation where I feel I could be tempted to "just have 1"...... I have accepted that I can NEVER "just have 1"! I really hope the Lactulose helps as it worked for me & helped clear the confusion, clear out my body & feel physically better. It's a long road but he can do it! I have but I don't sit on my laurels & take anything for granted where temptation is concerned! Good Luck 🍀
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