My son was diagnosed last year with UC and six months later, PSC. His UC is being treated with Azathioprine, so far with good results, and the PSC seems problem free at the moment, although he has no appetite at all. We're seeing his gastro team soon so will discuss that with them. As a family, we're over the initial shock (I, for one, was so devastated and cried for what seemed like an age!). We all seem to be living a fairly 'normal' life, although I'm always 'aware' and worried for him. Especially lately. You see, he's at the age where he wants to go out with friends and I know that he's been at friends houses and drinking beer. Not vast amounts but enough for me to worry. We're very open and honest with each other. I'm not silly, I know this is what teenagers of this age seem to want to do (I was one once, many moons ago). I know if he had nothing wrong I would still worry (it's not legal for starters) but now, I'm just a bag of angst. He says he doesn't drink that much and recently told me that I worry too much. Maybe I do.....we have a great relationship, talk about most things, but he really doesn't seem to be taking this illness seriously. He just laughs and says 'oh mum, you do worry', then he pinches my face cheekily and gets about his daily life.
I would really appreciate any thoughts from other parents/carers/friends/sufferers on what you do about alcohol. I posted on the PSC.org website and was basically told by other sufferers to leave him to it as alcohol doesn't affect PSC. I'm so confused.
Thank you one and all for taking the time to read....xxx
The one food restriction my internist told me at the beginning was "no ETOH," meaning no ethyl alcohol, no drinking alcoholic beverages. Period. Even for a healthy liver, it's extra work to process alcohol. So, a liver with PSC, meaning depressed ability to process toxins, has an even greater burden. I can see an adult having a small glass of wine per week -- maybe -- but a teenager still has a developing body. And your son already has an impaired liver and digestive system. In fact, it's the liver that is king of the digestive domain. I suggest gathering as much knowledge about normal liver function and digest that yourself. The liver is a pretty amazing organ - it performs more than 500 functions. The heart may keep our bodies ticking along, but the liver is massively more intricate and detail-oriented and complex than the heart. And fewer people know how it does operate. I'm not suggesting you scare your son, but certainly an increased knowledge and awareness of how his liver works will help him appreciate and participate in its health.
Chaim, I appreciate that you gave the address to the group for parents with kids with PSC. But it sounds like the son in this case is nearly old enough to be a member of this group and of the psc-support/yahoo group. He's certainly old enough to go out and drink with his friends! But maybe some other parents could give this mother some sage advice.
Thanks Dana, your reply was very comprehensive and what I’d already concluded (although not in quite such educated detail so I thank you for that). My son’s gastro consultant has told my son to go away and live a normal life in every sense (a comment I wasn’t very happy with). I understand that sentiment of course but now, when I tell my son to be sensible, think of his liver etc etc he says ‘the doctor said I’m ok and to live my life’. He’s a good lad, a really good lad but he’s also a typical teen and lives life in the moment. Oh to have the wisdom that comes with age. I don’t want to frighten him and make him depressed…I just don’t know what is the best way to approach it without alienating him.
i think if you let your kid go out and try it out, he will soon come to the commonsense conclusion about how shit he feels for maybe a week later, im 24, have had psc couple years and still find myself in sociable drinking situations and unless im feeling healthy i wont touch it. im sure peer pressure will play a big part, but if hes open about it to his friends and chooses to only drink occasionally then id say you raised a good kid.
Thanks for that Todd…our son is a really good egg and to be honest, I completely admire his attitide to life and having two chronic illnesses. Life is for living but from a parent’s point of view, the teen years are a worry because at that age you just can’t begin to think about the future. Why would you? It’s so far away…being old! I know he will find his balance…and actually he is a sensible lad in a lot of ways so I’m hoping he’s sensible when out and about with friends. I can’t be there all the time…
Thank you for sharing this. It only makes sense that anyone with liver disease should not drink any alcohol. I hope everyone is listening and taking note. There is no treatment for PSC except liver transplant. And that may not come for years. In the meantime we can do what we can to make things better for ourselves - and that includes not drinking alcohol. Period.
Dana
maynard77 said:
Hi...This is my first post to anyone on the site, so please forgive me if I overstep my boundaries.
My son is now 23 and has PSC. His liver specialist told him that he should absolutely NOT drink. He was very emphatic about it. He says it every time my son visits him. The doctor did say that if my son gets married and would like one glass of champagne at the reception, that would be allowed, but only ONE glass and that is all.
My son has had his bile duct opened, and the doctor did say that my son's liver function numbers were the highest he has ever seen, but I would think that anyone with a liver disease should stay away from alcohol.
It has to be extremely difficult for your son to watch his friends have fun and not be able to partake in the fun, but the fun has such a big consequence. My son slowly had friends drop off or fade away but the ones who truly care and love him are still around for him.
We are mothers and it is hard to watch our children struggle. I wish I could take this away from my son, but it is what it is. My hope is that he will deal with this and grow with the experience life has offered him....alcohol not included.
best thing about forums is you can say whatever you want and every one is entitled to their opinion, and its a Support group after all, so please speak your mind without faring being offensive, some of us have more to worry about :). I personally don't see the harm in having 1 (although im from new zealand where the whole population drinks lol) if I'm feeling healthy and its called for, i certainly don't go out and binge. i would be lucky to have 1-2 a month, I enjoy my 1-2 a month and feeling normal and enjoy the mental well being that brings. my friends all respect me not drinking the other 99% of the time, I guess I had a good bunch of people as no one has left me, I still go out and play golf,surf and other non alcohol activities when I'm up to it. I can see the parental side of wanting to protect your kid, and i respect that. but when I'm at the end of my road, I think i"ll be glad I enjoyed the journey, they might to? I dont have the worse psc, but it certainly isnt great, im in and out of hospitals to, today i just got out of a hospital in managua in nicaragua cause im traveling the world, but mindset has so much to do with what you can and cant achieve. liver transplant is the only cure, but what has that got to do with alcohol? obviously after yourve had one yourd take great care of it by not drinking. but until then if your feeling great, enjoy it
Thanks all for your lovely replies. We are emigrating to Canada soon, hence my lack of response sooner.
It's been the most trying time lately......now that we're a few weeks from emigrating my son is going out more with friends who want to see him before he goes.......I'm guessing they'll be drinking the dreaded alcohol but so far he's not come home in a mess. I'm torn between letting him have fun before he leaves them and worrying about how this could all affect him. This has been the most stressful thing I've ever dealt with. We all want the best for our beautiful children and now, when I look at him, I just feel so sad that this has happened to him. I can only pray that he's one of the lucky ones and it doesn't affect him too much or too soon.
Todd, I just wanted to say you sound like a wonderful young man (I'm assuming you're young as you're still surfing etc). I think my son has your mindset and to be honest, I can't blame him. Shame you're in NZ, you sound like a great guy.
Maynard77.....no, you certainly didn't say too much....you care enough to share your experiences and thoughts and for that, I'm very grateful. I just know that the mindset of a 17 yr old (my son) is not like that of a 47 yr old (me).......I just have to hope he stays sensible (he generally does).
Thanks all for helping us get through this time....I think I will introduce my son to this site when I feel he's ready (not sure now is the right time). He will meet some lovely people here (you!) and that's a great thing.
Oh my dear Dana. Imagine my surprise when I type "wine" into the search bar and you grace me with your wisdom. ;)
Anyway, why did I type in "wine", you ask?
Earlier, the question was raised about if the benefits of a glass of wine outweighed the PSC damage. You know that I'm not a drinker to begin with, especially wine, but I said I'd look into it and you happened to be my first stop. :D
So, any thoughts on the matter?
danabee said:
The one food restriction my internist told me at the beginning was "no ETOH," meaning no ethyl alcohol, no drinking alcoholic beverages. Period. Even for a healthy liver, it's extra work to process alcohol. So, a liver with PSC, meaning depressed ability to process toxins, has an even greater burden. I can see an adult having a small glass of wine per week -- maybe -- but a teenager still has a developing body. And your son already has an impaired liver and digestive system. In fact, it's the liver that is king of the digestive domain. I suggest gathering as much knowledge about normal liver function and digest that yourself. The liver is a pretty amazing organ - it performs more than 500 functions. The heart may keep our bodies ticking along, but the liver is massively more intricate and detail-oriented and complex than the heart. And fewer people know how it does operate. I'm not suggesting you scare your son, but certainly an increased knowledge and awareness of how his liver works will help him appreciate and participate in its health.
Chaim, I appreciate that you gave the address to the group for parents with kids with PSC. But it sounds like the son in this case is nearly old enough to be a member of this group and of the psc-support/yahoo group. He's certainly old enough to go out and drink with his friends! But maybe some other parents could give this mother some sage advice.
Dear Shay (asizCreatives), thank you for writing to me. I read what you sent that I wrote awhile back. Right now I am changing my diet to eat only organic foods - yes, I eat chicken (but no other meat), too, and it's organic, too. You know, occasionally I will take a sip from a friend's beer or wine glass. But that's all. Frankly I'm at my wit's end to try to do ANYTHING to make my situation better. So I can't even imagine taking a whole glass of wine, however small the portion, and drinking what is basically poison to my fragile liver. I'm trying to reverse some cirrhosis with the diet and exercise. And all I feel right now is tired, tired, tired. I'm so sick and tired of the fatigue I could scream. And maybe right now my body is beginning to detox. I have no idea. I'm sorry I sound so wound down. I guess the harder I try, the more frustrated I feel. For you, Ms. Shay, I'd say you have many reasons not to drink alcoholic beverages. Smoke marijuana. Or get some medical marijuana that you can eat and save your lungs. I'm going to ask my hep the next time I see her if she'll prescribe it. I'm not even sure the transplant center allows it. I just need a happy break now and then, you know?
asizCreatives said:
Oh my dear Dana. Imagine my surprise when I type "wine" into the search bar and you grace me with your wisdom. ;)
Anyway, why did I type in "wine", you ask?
Earlier, the question was raised about if the benefits of a glass of wine outweighed the PSC damage. You know that I'm not a drinker to begin with, especially wine, but I said I'd look into it and you happened to be my first stop. :D
So, any thoughts on the matter?
danabee said:
The one food restriction my internist told me at the beginning was "no ETOH," meaning no ethyl alcohol, no drinking alcoholic beverages. Period. Even for a healthy liver, it's extra work to process alcohol. So, a liver with PSC, meaning depressed ability to process toxins, has an even greater burden. I can see an adult having a small glass of wine per week -- maybe -- but a teenager still has a developing body. And your son already has an impaired liver and digestive system. In fact, it's the liver that is king of the digestive domain. I suggest gathering as much knowledge about normal liver function and digest that yourself. The liver is a pretty amazing organ - it performs more than 500 functions. The heart may keep our bodies ticking along, but the liver is massively more intricate and detail-oriented and complex than the heart. And fewer people know how it does operate. I'm not suggesting you scare your son, but certainly an increased knowledge and awareness of how his liver works will help him appreciate and participate in its health.
Chaim, I appreciate that you gave the address to the group for parents with kids with PSC. But it sounds like the son in this case is nearly old enough to be a member of this group and of the psc-support/yahoo group. He's certainly old enough to go out and drink with his friends! But maybe some other parents could give this mother some sage advice.
I'm so sorry to hear all that, Dana. I was wondering and worrying about how things were going with you. I have been hoping/wishing/praying that things had improved for you. As much as it sucks, there's got to be a reason behind all your strife. I firmly believe that you have a purpose in life and it WILL be done. Please stay strong and keep fighting. You know that if you ever need a friend I'm here. Email me sometime ;)
Anyway, thanks for the input. Unfortunately, silly NC people still think the green stuff is bad so unless I go the not so legal route, it's not an option. :( Or, to be honest, I would have tried it by now. Because from the little research I've done, that great little plant helps with ALL of my tummy troubles. C'est la vie....for now anyway.
Like I said I'm not a big drinker to begin with. MAYBE twice a year I'll have a mixed drink of some kind. I guess the drinking/partying bug left me when Cancer showed up. Oh well.
I completely understand you wanting a happy break. I really feel for you, more than you know. I hope that you get that chance sooner rather than later. I'll keep you in my thoughts.
You're too sweet, Shay. I will email you...tomorrow. Off to bed for now. You are a good friend to have. :)
Love,
Dana
asizCreatives said:
I'm so sorry to hear all that, Dana. I was wondering and worrying about how things were going with you. I have been hoping/wishing/praying that things had improved for you. As much as it sucks, there's got to be a reason behind all your strife. I firmly believe that you have a purpose in life and it WILL be done. Please stay strong and keep fighting. You know that if you ever need a friend I'm here. Email me sometime ;)
Anyway, thanks for the input. Unfortunately, silly NC people still think the green stuff is bad so unless I go the not so legal route, it's not an option. :( Or, to be honest, I would have tried it by now. Because from the little research I've done, that great little plant helps with ALL of my tummy troubles. C'est la vie....for now anyway.
Like I said I'm not a big drinker to begin with. MAYBE twice a year I'll have a mixed drink of some kind. I guess the drinking/partying bug left me when Cancer showed up. Oh well.
I completely understand you wanting a happy break. I really feel for you, more than you know. I hope that you get that chance sooner rather than later. I'll keep you in my thoughts.
I have PSC for a few years. I have UC and PSC and i'm 21.
For you to worry is perfectly normal. My parents are very worried about me now and worried even more when I was at the 18 year old stage.
My Doc told me that thank god i'm at the beginning stages of the disease and should try to live normally. Which I most definitely try to do.
At first my young silly mind said whats so bad about having a beer on a friday night. Or getting a little high once in a while. Until I did my research myself and saw how the disease generally progresses and how I would like to feel as great as I do now as long as possible. After learning allot about the liver I saw how alcohol really puts a strain on the liver. But once or twice a month I will have a beer or a glass of wine. But thats all.
I would recommend getting your son involved in seeing how the liver works and how PSC progresses. Don't get him too scared though!
Hi Bernie and thanks so much for taking the time to reply to my post!! It seems like ages ago that I put that message out there but I do check in a lot. It's good to have the thoughts of a young man because I know you want to live your lives as normally as possible and why wouldn't you!! I have talked about how the liver works with my son but to be honest, he's definitely at denial stages and I don't like to keep reminding him. He too is at very early stages and his blood tests have been very good for a time, so that's hopeful.
I think you sound like a great guy and very mature; your parents must be proud of you and your attitude. I wish you all the very best and if you need to talk, please feel free !! My son could probably use with a fellow youngster to talk to when he's ready!!
Thanks again and take best care of yourself, Keep well....