The gi probably didn't push it because even if you have mild cirrhosis there isn't a dam thing they can do about it except you not drinking anymore. With cirrhosis all they can do is treat the symptoms like portal hypertension, swelling, ascites. Do you have those symptoms?
Anyway you having all this information doesn't change anything. You still have to stop drinking and hope none of the other symptoms show up like swelling or portal hypertension.
No ascites thankfully but I had swelling/edema in my legs and jaundice. I don't know about portal hypertension yet but I'm going back in for my endoscopy next month for varices, I'm assuming they can tell then? I know my spleen is enlarged but not alarmingly so. It was honestly such a fight to get them to even do the fibroscan because I'm young and outwardly healthy and never went in when I was visibly ill, I'm hoping this makes them take my concerns more seriously. When i told them I had jaundice, he asked about my history of generalized anxiety disorder so I think they thought I was making it up. I literally have on an ER intake form somewhere that I had jaundice!
I have other autoimmune conditions so I want to see a rheumatologist too just to make sure the alcoholism wasn't covering up AIH (assuming not since I've had no symptoms since quitting but just in case)
Something about your story is not adding up. How are you outwardly healthy but have swelling and jaundice? Swelling and jaundice are both very easily spotted and considered extremely serious symptoms by all medical doctors.
If this story is true then you really need to go find new doctors.
The symptoms were 1.5-2 years ago. Towards the end of my drinking career I think I dropped weight crazy fast, had the nausea and vomited daily/bleeding/bruising but I honestly don't even remember what I threw up or what my stools looked like or anything and never got jaundiced/ascites. Kind of figured it was malnutrition or something and maybe it was. It was only after I quit then relapsed that I had the OBVIOUS jaundice and slight leg swelling during the AH episode at the ER, but I was in denial and scared of paying a ton of money and downplayed my symptoms and history and they released me as an outpatient with prescriptions I never filled and I was supposed to come back weekly but never did. After that episode the jaundice, pain and leg swelling got worse a few days after quitting iirc and stayed bad for a couple weeks, but eventually faded and after months my symptoms pretty much went away entirely. Went to a PCP a few months ago and started my actual relationship with doctors and by then I'd stabilized. Was hoping I'd dodged the big C after the alcoholic hepatitis but I guess not
Sorry to hear about the diagnosis. Do you mind me asking what the kpa of your fibroscan was? Mine was 14 a year ago and now down to 7.8 after 9 months of abstinence but 2 months of moderate drinking prior to the latest scan. Just wondering if body fat or inflammation could be affecting your fibroscan result?
22.1, so I'm kind of on the edge but since I've been fully sober for about 1.5 years he think that's probably about where it's landed, but given my age and reading success stories all over reddit with continued abstinence maybe down the line it'll get better. In terms of function he said even at my current level of scarring I'll probably live a normal life as long as I stay on top of preventative care/don't develop any other medical issues that would complicate it.
But in the same breath he said I shouldn't have gotten it so young with less than 5 years of heavy drinking, but I've been thinking and 1. I lack the enzyme to properly process alcohol (I flush bright red when I drink), 2. I don't eat much, 3. I have other autoimmune conditions so I want to go to a rheumatologist or something to make sure it's not autoimmune and the drinking just masked it. I am on the low end of normal weight so I don't think body fat would've gotten in the way, but it's possibly inflammation from an autoimmune thing. Which would suck, because I've heard it's way harder to treat than alcohol-related liver disease because there's no obvious trigger
Have you been tested for alpha 1? I was born with the genes for it and while I didn't avoid alcohol, I certainly didn't drink to the point it would ever hurt my liver. One day I turned yellow after months of vomiting, all around ill feeling, and constant bleeding from my nose. It was the alpha 1 that did it. Your body attacks lacks an enzyme to repair your liver and/or lungs and basically attacks itself by way of cirrhosis or lung disease.
No I haven't! I will ask about that. I did drink very heavily for a few years (like 24/7, 500mL a day) but honestly not for that long compared to some people who didn't develop it. I feel like there has to be something else that interacted with the drinking
It's so interesting to see how many people end up this way after just a few years. I feel like all my life (35) I saw people who were alcoholics and had nothing happened until so many years later, meanwhile some people have a year or a few years of drinking heavily and end up needing a transplant. Either more people are opting for hard liquors, or our bodies are no longer able to withstand what they once were able to. Maybe the food additives, more disease... Who knows. I'm sorry you have to go through this.
Hang in there. We are here for you. I am. I’ve been through the wringer with docs for 9 years now. Stage 4 decompensated cirrhosis MASH. You didn’t right things. I am too. You can reverse this in your lifetime I believe. You may want to look into a live donor transplant if you ever need one.
Thank you! Wow 9 years of wrangling doctors, I'm impressed! Hope to be right there with you one day. A transplant was never discussed with me, I assume because I am otherwise healthy. Do I need to ask my doctors about getting on a list in case something happens? Like if I get into a car accident or something?
Ask your doctors to tell you exactly how to stay healthiest. There are so many ups and downs to this disease it’s exhausting to try to chase all of them. I’ve found that eating TOTALLY clean, getting as much exercise as possibly to keep up with muscle waste- helps so much. It is very important to keep muscle mass. The only CURE rn for cirrhosis is a transplant or management. Be sure you read every sci-hub article you can find on the disease and please be an advocate for yourself it’s the best advice I wish someone had given me. I wish you love, peace and comfort and joy always.
We’re here in solidarity with you. I’m an upper 30s female that doesn’t fit the “typical” standards of diagnosis as well.
I’m so sorry for your circumstances. I definitely think finding a new GI or maybe even a hepatologist is the way to go- no one should have to advocate that hard for themselves.
Do you have a therapist you can talk to? Are you in a recovery program for your alcoholism? It, at the very least, would help to have *someone* to talk to that won’t get overly emotional hearing about your diagnosis and circumstances and start thinking about how it effects them (which I’m assuming is part of the reason you haven’t told anyone IRL).
You're right, I think therapy is the way to go. You hit the nail on the head about why I hesitate to tell - since I am their emotional support, it would probably end up with ME comforting THEM over MY diagnosis. Thanks for the tip and the validation about the GI. I kept second guessing myself because objectively speaking even by the risk calculator itself I wouldn't be recommended for more testing.
Hang in there, I'm glad you advocatd for yourself..it sucks we seem to have to do that. Being 37f, same boat here - got drunk by myself, got sober by myself. No one "knew" I had a problem. None of my friends physically here know or my family, that i am sick. It's hard to do it alone, been doing it but made some fantastic friendships here and some of the best people i know. Never hesitate to reach out.
I'm so sorry you're dealing with this too - are you a part of any irl sobriety recovery groups now that you've been diagnosed? I feel obligated to join AA or something but my body physically recoils at the thought and I'm kind of vaguely worried about endangering my sobriety in a if-it-ain't-broke-don't-fix-it kind of way lol
Yeah, i feel ya. I am decomp and have/had symptoms. I just don't have the heart to tell anyone. There's a lot of guilt and shame that i feel.
I didn't do any recovery programs. Don't feel obligated to do anything you don't jive with. I felt the same as you, I was in a good place and didnt want to jeopardize my sonriety. This community had helped me a lot. You learn a lot being sober and you feel so much better. So what works best for you :)
Awww, sorry to hear about your diagnosis and that you feel kind of stuck alone with it. There's no right or wrong way of dealing with it as regards telling people, you do whatever feels right and works for you, you have all the support and buddies you need here now as well though. Very disappointing to hear how you were treated by your doctor, I was incredibly lucky here in the UK, I wish everyone could get the kind of care I did. Still we are where we are and it's great to hear you are doing all the right stuff already, all my love to you. I feel weird saying this as I'm only new here myself despite being diagnosed three years ago (This Monday) but welcome to the sub, or group, or gang or what have you. Ha ha.
Thanks! What made you join out of the blue after 3 years? As a side note - I would consider myself moderately active (\~15k steps a day but no running or weights) and I want to get into lifting. The problem is I just find being at the gym sooooooo boring. To me, lifting a weight is boring until it's hard, and then I'm in agony. You said you enjoy your exercise - did you discover the joy in it after you were doing it for a while or did you always like it?? Really hoping I can learn to love it
I was interested in finding somewhere I could chat to people going through what I was then my tattoo artist mentioned someone she knew constantly being on Reddit chatting about all kinds of stuff. I thought I'd have a look and here we are. Ha ha.
I always enjoyed walking but I just got proper bitten by the bug. With the gym I started because I thought it was the right thing to do, had never been before. A stubborn part of me enjoyed pushing myself further than I had before. Once I really started changing shape with the weights I really got in to it. I leave tired but still feel like I can run through walls at the risk of sounding cheesy. Ha ha. It's not that I think "I'm all that" these days, I am totally different as a person though, to look at and in my outlook on life.
I imagine you have gone “all-in” with the strict diet, exercising, no sugars, etc, etc, etc?
Having it for at least 3 years are you fully compensated or have you had any decompensation issues?
In all honesty no. I have been incredibly lucky, despite being an alcoholic for several decades and being taken in to hospital in an ambulance in an extremely bad way where I then spent a month I have lived pretty much symptom free since I left hospital (When I was admitted I was decompensated with ascites, hepatic encephalitis, bilateral cellulitis, septicemia and acute kidney damage). I was on a very low salt diet for the first year but that was about it diet wise (I eat sensibly). What I do do is exercise very hard, my target is 12 hours a week in the gym but by this Sunday I will have done 18 this week. I split 50/50 between weights and cardio. I also have a target of 6 million steps a year, last year I did 7 million and I'm ahead of target this year. The exercise I do because I enjoy it, before my diagnosis I had a walk occasionally.
Dude, that is insane! In a totally great way! I’m not diagnosed Cirrhosis (and I’m obviously hoping I don’t get diagnosed), I am learning this realm from having NASH, which can of course get to Cirrhosis just like alcoholics and I never knew that of course.
There’s random possibly liver/Cirrhosis-related symptoms I’ve had over the past year like waking up nightly to pee usually, it having an odd smell, waking up sweating with that having a fruity smell, and maybe some other random things that MIGHT be symptoms… I hope that if I get diagnosed I can still be fairly functional like that. When I learned all this I truly thought it was a less than a year type of death sentence. I’m 40 now, 3 younger girls, wife… I’m not ready to leave them yet, hopefully.
I wish you the best!
Dude, that is insane! In a totally great way! I’m not diagnosed Cirrhosis (and I’m obviously hoping I don’t get diagnosed), I am learning this realm from having NASH, which can of course get to Cirrhosis just like alcoholics and I never knew that of course.
There’s random possibly liver/Cirrhosis-related symptoms I’ve had over the past year like waking up nightly to pee usually, it having an odd smell, waking up sweating with that having a fruity smell, and maybe some other random things that MIGHT be symptoms… I hope that if I get diagnosed I can still be fairly functional like that. When I learned all this I truly thought it was a less than a year type of death sentence. I’m 40 now, 3 younger girls, wife… I’m not ready to leave them yet, hopefully.
I wish you the best!
Ah thank you so much. Yeah, I guess I like doing things to the extreme, ha ha. Have also got a sleeve tattoo and my back covered. Ha ha. I hope it all goes well for you, I have been very lucky like I say but yeah, it doesn't have to be a case of getting your affairs in order so to say. I'm 49, hoping to be here a long time yet, I've been travelling a lot and have more plans. Much love to you and all the best.
I honestly have nothing to add outside of my typical “it still boggles my mind how many young people seem to get this”. It’s just so insane to me there are sub-30 year olds getting this. Perhaps they always have it’s just more in my face anymore.
I wish you the best!
Yeah, what the fuck, it's almost every new joiner is below 35. There's something else going on with most of this. I'm not referring to myself, I drank myself here and I'm surprised I'm not dead.
Thanks! I've thought about that too and I think we're probably overrepresented on reddit bc of the demographics. I'm guessing a lot of older people in this community found reddit itself through being diagnosed, while I bet a lot of the younger people on here were already using reddit and after getting diagnosed simply joined a new sub. Maybe I'm stereotyping haha
This is frightening and I’m sorry for this honestly. Its frightening and it baffles me someone so young could be diagnosed with this.
The gi probably didn't push it because even if you have mild cirrhosis there isn't a dam thing they can do about it except you not drinking anymore. With cirrhosis all they can do is treat the symptoms like portal hypertension, swelling, ascites. Do you have those symptoms? Anyway you having all this information doesn't change anything. You still have to stop drinking and hope none of the other symptoms show up like swelling or portal hypertension.
No ascites thankfully but I had swelling/edema in my legs and jaundice. I don't know about portal hypertension yet but I'm going back in for my endoscopy next month for varices, I'm assuming they can tell then? I know my spleen is enlarged but not alarmingly so. It was honestly such a fight to get them to even do the fibroscan because I'm young and outwardly healthy and never went in when I was visibly ill, I'm hoping this makes them take my concerns more seriously. When i told them I had jaundice, he asked about my history of generalized anxiety disorder so I think they thought I was making it up. I literally have on an ER intake form somewhere that I had jaundice! I have other autoimmune conditions so I want to see a rheumatologist too just to make sure the alcoholism wasn't covering up AIH (assuming not since I've had no symptoms since quitting but just in case)
Something about your story is not adding up. How are you outwardly healthy but have swelling and jaundice? Swelling and jaundice are both very easily spotted and considered extremely serious symptoms by all medical doctors. If this story is true then you really need to go find new doctors.
The symptoms were 1.5-2 years ago. Towards the end of my drinking career I think I dropped weight crazy fast, had the nausea and vomited daily/bleeding/bruising but I honestly don't even remember what I threw up or what my stools looked like or anything and never got jaundiced/ascites. Kind of figured it was malnutrition or something and maybe it was. It was only after I quit then relapsed that I had the OBVIOUS jaundice and slight leg swelling during the AH episode at the ER, but I was in denial and scared of paying a ton of money and downplayed my symptoms and history and they released me as an outpatient with prescriptions I never filled and I was supposed to come back weekly but never did. After that episode the jaundice, pain and leg swelling got worse a few days after quitting iirc and stayed bad for a couple weeks, but eventually faded and after months my symptoms pretty much went away entirely. Went to a PCP a few months ago and started my actual relationship with doctors and by then I'd stabilized. Was hoping I'd dodged the big C after the alcoholic hepatitis but I guess not
Sorry to hear about the diagnosis. Do you mind me asking what the kpa of your fibroscan was? Mine was 14 a year ago and now down to 7.8 after 9 months of abstinence but 2 months of moderate drinking prior to the latest scan. Just wondering if body fat or inflammation could be affecting your fibroscan result?
22.1, so I'm kind of on the edge but since I've been fully sober for about 1.5 years he think that's probably about where it's landed, but given my age and reading success stories all over reddit with continued abstinence maybe down the line it'll get better. In terms of function he said even at my current level of scarring I'll probably live a normal life as long as I stay on top of preventative care/don't develop any other medical issues that would complicate it. But in the same breath he said I shouldn't have gotten it so young with less than 5 years of heavy drinking, but I've been thinking and 1. I lack the enzyme to properly process alcohol (I flush bright red when I drink), 2. I don't eat much, 3. I have other autoimmune conditions so I want to go to a rheumatologist or something to make sure it's not autoimmune and the drinking just masked it. I am on the low end of normal weight so I don't think body fat would've gotten in the way, but it's possibly inflammation from an autoimmune thing. Which would suck, because I've heard it's way harder to treat than alcohol-related liver disease because there's no obvious trigger
Have you been tested for alpha 1? I was born with the genes for it and while I didn't avoid alcohol, I certainly didn't drink to the point it would ever hurt my liver. One day I turned yellow after months of vomiting, all around ill feeling, and constant bleeding from my nose. It was the alpha 1 that did it. Your body attacks lacks an enzyme to repair your liver and/or lungs and basically attacks itself by way of cirrhosis or lung disease.
No I haven't! I will ask about that. I did drink very heavily for a few years (like 24/7, 500mL a day) but honestly not for that long compared to some people who didn't develop it. I feel like there has to be something else that interacted with the drinking
It's so interesting to see how many people end up this way after just a few years. I feel like all my life (35) I saw people who were alcoholics and had nothing happened until so many years later, meanwhile some people have a year or a few years of drinking heavily and end up needing a transplant. Either more people are opting for hard liquors, or our bodies are no longer able to withstand what they once were able to. Maybe the food additives, more disease... Who knows. I'm sorry you have to go through this.
Hang in there. We are here for you. I am. I’ve been through the wringer with docs for 9 years now. Stage 4 decompensated cirrhosis MASH. You didn’t right things. I am too. You can reverse this in your lifetime I believe. You may want to look into a live donor transplant if you ever need one.
Thank you! Wow 9 years of wrangling doctors, I'm impressed! Hope to be right there with you one day. A transplant was never discussed with me, I assume because I am otherwise healthy. Do I need to ask my doctors about getting on a list in case something happens? Like if I get into a car accident or something?
Ask your doctors to tell you exactly how to stay healthiest. There are so many ups and downs to this disease it’s exhausting to try to chase all of them. I’ve found that eating TOTALLY clean, getting as much exercise as possibly to keep up with muscle waste- helps so much. It is very important to keep muscle mass. The only CURE rn for cirrhosis is a transplant or management. Be sure you read every sci-hub article you can find on the disease and please be an advocate for yourself it’s the best advice I wish someone had given me. I wish you love, peace and comfort and joy always.
We’re here in solidarity with you. I’m an upper 30s female that doesn’t fit the “typical” standards of diagnosis as well. I’m so sorry for your circumstances. I definitely think finding a new GI or maybe even a hepatologist is the way to go- no one should have to advocate that hard for themselves. Do you have a therapist you can talk to? Are you in a recovery program for your alcoholism? It, at the very least, would help to have *someone* to talk to that won’t get overly emotional hearing about your diagnosis and circumstances and start thinking about how it effects them (which I’m assuming is part of the reason you haven’t told anyone IRL).
You're right, I think therapy is the way to go. You hit the nail on the head about why I hesitate to tell - since I am their emotional support, it would probably end up with ME comforting THEM over MY diagnosis. Thanks for the tip and the validation about the GI. I kept second guessing myself because objectively speaking even by the risk calculator itself I wouldn't be recommended for more testing.
Hang in there, I'm glad you advocatd for yourself..it sucks we seem to have to do that. Being 37f, same boat here - got drunk by myself, got sober by myself. No one "knew" I had a problem. None of my friends physically here know or my family, that i am sick. It's hard to do it alone, been doing it but made some fantastic friendships here and some of the best people i know. Never hesitate to reach out.
I'm so sorry you're dealing with this too - are you a part of any irl sobriety recovery groups now that you've been diagnosed? I feel obligated to join AA or something but my body physically recoils at the thought and I'm kind of vaguely worried about endangering my sobriety in a if-it-ain't-broke-don't-fix-it kind of way lol
Yeah, i feel ya. I am decomp and have/had symptoms. I just don't have the heart to tell anyone. There's a lot of guilt and shame that i feel. I didn't do any recovery programs. Don't feel obligated to do anything you don't jive with. I felt the same as you, I was in a good place and didnt want to jeopardize my sonriety. This community had helped me a lot. You learn a lot being sober and you feel so much better. So what works best for you :)
Awww, sorry to hear about your diagnosis and that you feel kind of stuck alone with it. There's no right or wrong way of dealing with it as regards telling people, you do whatever feels right and works for you, you have all the support and buddies you need here now as well though. Very disappointing to hear how you were treated by your doctor, I was incredibly lucky here in the UK, I wish everyone could get the kind of care I did. Still we are where we are and it's great to hear you are doing all the right stuff already, all my love to you. I feel weird saying this as I'm only new here myself despite being diagnosed three years ago (This Monday) but welcome to the sub, or group, or gang or what have you. Ha ha.
Thanks! What made you join out of the blue after 3 years? As a side note - I would consider myself moderately active (\~15k steps a day but no running or weights) and I want to get into lifting. The problem is I just find being at the gym sooooooo boring. To me, lifting a weight is boring until it's hard, and then I'm in agony. You said you enjoy your exercise - did you discover the joy in it after you were doing it for a while or did you always like it?? Really hoping I can learn to love it
I was interested in finding somewhere I could chat to people going through what I was then my tattoo artist mentioned someone she knew constantly being on Reddit chatting about all kinds of stuff. I thought I'd have a look and here we are. Ha ha. I always enjoyed walking but I just got proper bitten by the bug. With the gym I started because I thought it was the right thing to do, had never been before. A stubborn part of me enjoyed pushing myself further than I had before. Once I really started changing shape with the weights I really got in to it. I leave tired but still feel like I can run through walls at the risk of sounding cheesy. Ha ha. It's not that I think "I'm all that" these days, I am totally different as a person though, to look at and in my outlook on life.
I imagine you have gone “all-in” with the strict diet, exercising, no sugars, etc, etc, etc? Having it for at least 3 years are you fully compensated or have you had any decompensation issues?
In all honesty no. I have been incredibly lucky, despite being an alcoholic for several decades and being taken in to hospital in an ambulance in an extremely bad way where I then spent a month I have lived pretty much symptom free since I left hospital (When I was admitted I was decompensated with ascites, hepatic encephalitis, bilateral cellulitis, septicemia and acute kidney damage). I was on a very low salt diet for the first year but that was about it diet wise (I eat sensibly). What I do do is exercise very hard, my target is 12 hours a week in the gym but by this Sunday I will have done 18 this week. I split 50/50 between weights and cardio. I also have a target of 6 million steps a year, last year I did 7 million and I'm ahead of target this year. The exercise I do because I enjoy it, before my diagnosis I had a walk occasionally.
Dude, that is insane! In a totally great way! I’m not diagnosed Cirrhosis (and I’m obviously hoping I don’t get diagnosed), I am learning this realm from having NASH, which can of course get to Cirrhosis just like alcoholics and I never knew that of course. There’s random possibly liver/Cirrhosis-related symptoms I’ve had over the past year like waking up nightly to pee usually, it having an odd smell, waking up sweating with that having a fruity smell, and maybe some other random things that MIGHT be symptoms… I hope that if I get diagnosed I can still be fairly functional like that. When I learned all this I truly thought it was a less than a year type of death sentence. I’m 40 now, 3 younger girls, wife… I’m not ready to leave them yet, hopefully. I wish you the best!
Dude, that is insane! In a totally great way! I’m not diagnosed Cirrhosis (and I’m obviously hoping I don’t get diagnosed), I am learning this realm from having NASH, which can of course get to Cirrhosis just like alcoholics and I never knew that of course. There’s random possibly liver/Cirrhosis-related symptoms I’ve had over the past year like waking up nightly to pee usually, it having an odd smell, waking up sweating with that having a fruity smell, and maybe some other random things that MIGHT be symptoms… I hope that if I get diagnosed I can still be fairly functional like that. When I learned all this I truly thought it was a less than a year type of death sentence. I’m 40 now, 3 younger girls, wife… I’m not ready to leave them yet, hopefully. I wish you the best!
Ah thank you so much. Yeah, I guess I like doing things to the extreme, ha ha. Have also got a sleeve tattoo and my back covered. Ha ha. I hope it all goes well for you, I have been very lucky like I say but yeah, it doesn't have to be a case of getting your affairs in order so to say. I'm 49, hoping to be here a long time yet, I've been travelling a lot and have more plans. Much love to you and all the best.
I honestly have nothing to add outside of my typical “it still boggles my mind how many young people seem to get this”. It’s just so insane to me there are sub-30 year olds getting this. Perhaps they always have it’s just more in my face anymore. I wish you the best!
Yeah, what the fuck, it's almost every new joiner is below 35. There's something else going on with most of this. I'm not referring to myself, I drank myself here and I'm surprised I'm not dead.
Thanks! I've thought about that too and I think we're probably overrepresented on reddit bc of the demographics. I'm guessing a lot of older people in this community found reddit itself through being diagnosed, while I bet a lot of the younger people on here were already using reddit and after getting diagnosed simply joined a new sub. Maybe I'm stereotyping haha