So I'm at that point again, where I've begun to vomit through stomach acid and heartburn - and I know that the varisces I have are now active again because I'm regularly seeing blood. Just spots, rather than vomiting pure sheets of blood as I was two years ago, but still scary.
I'm seriously trying to stop drinking again (I only started again through stress) but I keep getting told that I can't just stop cold turkey (which I REALLY want to do) because of my epilepsy. Apparently my meds will temporarily stop working and/or overdose me if I just stop, so I don't know what to do. Is it worth asking to go in for rehab? My consultant knows I want to quit again, but all he knows about my epilepsy is that stopping cold could potentially cause a fatal seizure.
I really don't want to have to go back to hospital, and I certainly don't want to be playing the liver failure/potential cirrhosis game again (I still don't know if it was really cirrhosis because my liver allegedly recovered, but varisces is kind of a good indication that it probably was).
Any advice please? Cutting down has failed and I just want to stop without potentially risking my life.
What eaxtly makes you believe not drinking will cause an episode of epilepsy? It sounds like you could bleed out if you do not quit drinking. I almost bled to death from my varacies. My hemocrit then dropped drastically and everything was compounded. A good doctor should be able to help you. If you have anxiety and drink from that, you could be put on meds for that. Have you told your doc you are seeing blood? I know first hand the nightmare of staying away from booze. The one thing I hear you have worked out for yourself is the fact that cutting back does not work for you but it really never works for anyone with alcohol addiction. For me its simple and has been for years, I drink, I die. I love life so I quit but not until I had totally created a mess of cirrhosis from it combined with hep c. Whatever is in those cans and bottles you are not able to resist will be your death. Its just a fact not a judgment. Life is like that, its full of truth we wish to avoid complying to. Best wishes
I've sought advice from my GP, my liver consultant and my neurologist, and they all say the same thing: drink messes with my meds, and stopping will cause imbalances in the absorption of my meds which could prove fatal. I've suffered Status Epilepticus in the past and they're all incredibly concerned that it might happen again if I stop cold.
Seeing blood again is only a recent thing in the last week or so (as is the vomiting), so I've not been able to talk to my GP yet (the one I had for years just retired, so I can see that I won't get immediate help from a new GP who isn't familiar with my case). I've been trying to stop again since things settled down in my life but - as you know yourself - it's a hard path to travel. I really do want to stop again though, and am seriously considering a spell in hospital getting pumped full of whatever it is that saved my life before and detoxed me in a safe way, because I know that I'll die if I don't quit, and I'm not in any hurry to do that.
If you are seeing blood, most likely there is old blood backed up and that can create the ugliest infection, it happened to me then the fresh blood suddenly became a projectile vomiting off and on for 45 minutes. I was alone in the middle of the night. Yes it could happen again to me. I live with that. You are in a hard place but there seems something not right about these doctors not helping you get off booze. No I am not a doctor but I do not believe this advice. There should be a way to get you free of booze while monitoring the alcohol withdrawal. I wish you luck finding a way. Its almost as if they have frightened you into continued drinking. That makes no sense. How progressed is your cirrhosis and is drinking the cause of it. Again, I am not a doctor. Anyway not all doctors are good ones, I had to run from some, the things they wanted me to believe made no sense. Now I belong to the doctors at the transplant center in Hawaii but I have refused transplant.
I was pretty much end stage cirrhosis when I was taken in to ICU two years ago, but my liver, to date, has tested normal, so I honestly don't know if it was full-on cirhosis or not (a nurse told me that the consultant who diagnosed me is known for scaremongering, but since I had to have ascites drained and lost six litres of fluid, I tend to think he was right). I also suffer from CFS and did a little too much today, which can make me vomit even on an empty stomach, and that can make the lining of my throat irritated to the point of bleeding. So I'm monitoring the situation as closely as I can. I'm assuming varisces because, frankly, it's safer if I don't dismiss that possibility.
I could have spoken to the GP who just retired because he's the one who saved my life and knew me really well. I'm hoping that I can develop a similar relationship with his successor.
My cirrhosis was a combination of alcohol and prescribed medication for my epilepsy and chronic pain. Naproxen wrecked my kidneys but - ironically - if it hadn't done that I'd not have ended up in hospital and my liver problems would not have been discovered. Unless it was th Naproxen that contributed: I will never really know.
I wish you luck. I am not a doctor and I do not want to give you any feedback other than to say, I find your doctors to be giving you information that just does not add up. I would be very concerned about that. I have not heard of bouncing back to any normal state after being told that there is end stage cirrhosis. Is your disease decompensated? If not, maybe that explains the healing, really don't know.
Varices are separate to stomach acid get to docs they can oose or burst so you need to get them treated
Cazer
Your Liver numbers becoming stable after some sobriety does NOT mean you have recovered from Cirrhosis. It sounds more like you went from de-compensated Cirrhosis to compensated when your Liver had a break from the damage and some time to recover what it could. Maximum recovery of the Liver takes years after removing the cause (alcohol).
By starting to drink again you have thrown a spanner in the works and you will be back to the point of Liver failure again sooner than you think. The drink is killing you, sorry to be blunt, but its the truth. The best chance for Liver recovery is no more alcohol ever and as little pills as possible, exercise and healthy eating.
Medications can be hard on the Liver anyway, although it sees you may not a choice with your other conditions. I think you need to have a meeting with your doctors to try and come up with a plan here, but you must stop drinking. Your Varices need to be monitored too.
in reply to
You're right, I don't have a choice with the meds. Stopping the meds would kill me as surely as stopping drinking too fast. I shouldn't have let stress and anxiety drive me back to it, but what's done is done and now I have to start over, and find the safest way possible to do it.
I do not know about the alcohol withdrawal, but before I was diagnosed with my liver condition, I spent almost a year unable to eat or drink anything other than dairy products. Once the varices were discovered it turned out that any acidity would irritate them causing me to vomit. So dairy may help relieve that aspect currently.
I would certainly get a second and third opinion about the cirrhosis. It is not something that goes away after you reach end stage. There are other liver conditions that can mimic cirrhosis, even on ultrasounds and CT scans. Even now when I have a diagnosis of Nodular Regenerative Hyperplasia from the liver specialist at the Mayo Clinic, my local GI doc lists the diagnosis as cirrhosis.
Best of luck in finding a doctor who will work with you to address the multiple issues.
Hi, I'm epileptic and although I don't drink I do understand.
Your body is used to your epilepsy medication at a certain level. Drinking will have altered that - say for example the drink is making the effect of the Meds 20% stronger. Stopping cold turkey would wipe that 20% off your medication levels.
You will probably remember when starting on the medicine that you have to build up very slowly and you have to do the same when you come off it.
Don't look at this as a lose lose situation. Your doctors do want you to stop drinking it's just that you need to do it gradually. Ask them at what rate they suggest.
Unfortunately it's true that you could have a fatal seizure if you don't listen to them, or a stroke or bleed in the brain.
If you want to rant now and then you know where we all are
Thanks. I was too tired and sick to really express what you've said here when I typed this up last night. I was dry for well over a year, and then a lot of stress hit me all at once and that was my downfall. At one point I was suicidal. I'm seriously considering rehab; I can't think of any other safe way to go about this
Did you try a 12 step program? The reason I ask is that most people who quit without support usually drink again. They do not have the tools in their toolbox to work out stress, anxiety, rage and loss. In AA you learn all that. Plus you make friends, and there is a plan in place, the steps, which help you get better and acquire all those tools.
I've been sober for over 8 years. I was sober over three before I got sick. I did not quit in time. I got a transplant last year. Life can be really good if you just surrender..as sick as you are, I'm wondering why your not at the hospital now?
Some great information and advice. I think it's clear that you need some help giving up the booze so perhaps rehab, or some kind of monitoring to safely get you dry and alter the meds appropriately.
There's been a few people recently on this site who are unsure if they still have cirrhosis even after asites, varicose veins, poor bloods etc.
I may well be wrong but I didn't think recovery from these symptoms could ever mean the cirrhosis has gone. Like someone else said perhaps your liver has gone from de compensated to compensated. This is very different as it means the liver though functioning normally still has the damage done.
I understand that you don't want to go to hospital, but you must get help. The varaces must be treated (banded) and you must quit drink safely. The previous posts are all true and I know it is easier said than done but not everyone has these choices, you must do this while you have a chance to turn things around. Please take the steps needed to get support and you can do it. X
ok..let me say this, with the epilepsy, as I'm sure you know your at risk for a Grand Maul. So you need to be detoxed by medical professionals.
But, that's up to you. Either your at rock bottom and you want to quit, or you don't. When people hit rock bottom they are so desperate they will do anything to get and stay sober. I know it's scary. Giving up control IS scary..but the truth is, your not in control. If your an alcoholic, that bottle is.
I'm so sorry to sound harsh..but that is the bottom line.
Your life could be amazing. And of you get sober and stay that way, you could possibly get a liver transplant.
It's really your choice at this point. It sounds like you already KNOW what to do.
Thanks Kimberly. After six months sober my consultant decided that I don't need a transplant (which is why I question the diagnosis of cirrhosis - wouldn't that mean a transplant was essential?) and I managed to keep it down to just a few glasses last night. I'm certainly not at rock bottom (being able to come off disability because my husband was offered a fantastic job did a lot to lift my depression and anxiety) but I think I probably was when I was admitted to hospital two years ago.
I'm trying to get around more and even got out of the house for the entire day yesterday. I find that, if I'm out of the house and distracted, having a drink doesn't even occur to me unless it's in a restaurant with a meal.
I believe its not just that the transplant team look at the patient being clear of alcohol for 6 months prior but they also have to be convinced the patient will NEVER drink again after the transplant. So i would guess that someone who is struggling with the ability to NEVER drink again, (managing to reduce to a few glasses is not NEVER drinking again), will not be considered for assessment, let alone transplanted, however much their liver might be struggling.
I was assessed actually, after I'd been off the sauce for six months. An ultrasound satisfied my team that a transplant is not required. The varisces had closed, I had no ascites (I still don't) and my liver was "mending" (his words) by itself. I hate that I'm having to start over thanks to acute stress driving me back to the only crutch I've ever known, but what's done is done and now the pressure's off I can look at cutting back down to nothing again. I enjoyed my 12+ months sober!
You,re whats know in the hepatologist specialist circles as a "floater". It means you,ll potentially float from grade A to C depending on how well you look after yourself. Probably easier to explain than the "Childs Pugh scale" or the MELD scale i guess
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What are your symptoms of regenerative nodular hyperplasia and is it worth doing a CT scan?
Worried about my mum!
Looking for advice, sharing my story. 
I’m Stopping my Meds. 
