Alcohol induced pancreatitis and never being able to drink again

[cookiebee]

I wanted to start a thread for people like me who are no longer allowed to drink alcohol or want to talk about the very misunderstood illness that is pancreatitis. I’ve been reading mumsnet threads since about 2013, I came online looking for advice about shared access driveways and stayed for the mother in law threads. I have joined now to start this thread specially, as I would like to talk to anyone who may be experiencing similar to myself.

I’ve been alcohol free since January 2023, I have read many great posts on the alcohol support threads, however many on those are still able to drink, although I completely recognise what everyone is going through, many on those threads still have the safety net of being able to consume alcohol if they crack, which is so easy to do when you are trying to cut down consumption for either health, or because you have an unhealthy relationship with alcohol, believe me I’ve been there in the past, I get it. But when you are forbidden from something, forever, it shines a very different light on the matter and offers a whole new set of challenges.

My alcohol consumption has always been what is referred to as binge drinking, I smoked in the same sort of patterns as well. I would drink two or three times a week roughly, but if I was on holiday, or it was Christmas etc, I would drink daily, would have days off drinking, didn’t need it to cope with anything, never started pouring it on my cornflakes, but weekly units would have been very high, this was in line with the drinking of everyone around me, and for those who regularly drink. Although lots don’t like to admit it, or are in denial that they are not as bad as the next person (we all have that to an extent I believe).

So I was staying with a relative for two weeks, they drink everyday, so I drank everyday with them, at the end of the two weeks I returned home, stopped drinking, a day later I experienced the onset of pain in my right side, my symptoms escalated into the most indescribable pain in my abdomen and back, I was rushed to hospital and diagnosed with acute pancreatitis, caused by alcohol. I was given several doses of morphine, which did nothing at all for the pain, I was, I’m embarrassed to say, pretty vocal, I won’t talk too much about it now, but will later in the thread, I’m hoping that others will discuss with me there own experiences of it, as I will myself, it’s just horrendous.

At some point on this first day, after a scan with a very unsympathetic doctor, who just stood there with his team and watched on as I moved myself from my trolley to the scanner in agony, I was greeted by the alcohol councillor, they were very nice and asked me questions about my alcohol consumption. I said I probably did drink way too much and definitely had drank a lot in the last two weeks, I imagine I’ve probably got whatever the official term for ‘piss-head’ is on my medical record!

After a week in hospital, I was discharged with pain medication, I had a long and painful recovery, my stomach was distended and I had internal bruising. Later in the year I was admitted to hospital again with a pseudocyst on my pancreas which I didn’t realise had been growing all year, it had gotten very big and had become infected, I was in for three weeks and had to have a procedure to deal with it. I haven’t gone into much detail, as I’m trying to just outline the basics of my thread (probably not very well). I of course will discuss any aspect of pancreatitis and hopefully so will others, later in the thread.

So what’s the point of this thread, well as I’ve witnessed on mumsnet, threads do not always go as intended, they change or get derailed or completely stall if they are not interesting enough, or don’t have a parking diagram, but I’m hoping to find others to discuss a few things that I just can’t seem to find anywhere, or if I do, I just need or want more stories and information to help me feel less alone. Illness can be very lonely, and coupled with no longer being a drinker, it can be lonelier still, I haven’t, for example, seen my best friend this whole time, and one big aspect of that I’m pretty sure is because I no longer can drink.

So anyone is welcome, but especially if you have suffered or lost a loved one to any form of pancreatitis, if you have had to completely abstain from alcohol (and indeed smoking) because of pancreatitis or infact any other medical reason, or if your staring down the barrel being told you are not allowed to do anything you loved or did before any incident in your life, those of us who cannot return to life before, and don’t have the luxury of, if you slip up, it will be fine. For example, if I drink alcohol, it will more than likely set off more pancreatitis attacks, would lead to chronic pancreatitis, where you live with pain everyday, or would lead to organ failure and death, no cheeky little glass of anything for me!! So let’s see where this goes. Incidentally, anyone suffering from pancreatitis or other bowel issues, there is an excellent charity called Guts UK, it had personal stories and help for those who might need it.So come chat if you need it.

Lots of sympathy here- I've had acute pancreatitis (triggered by a medical test, but I'm overweight and drink too much which didn't help). I came quite close to dying and it was pain like I've never experienced, and the recovery took a long time. I was lucky in that it didn't become chronic - but I'm also trying to cut down drinking and can relate to the loneliness of that as well. I'm sorry for what you went through and am happy to offer solidarity in the life changes!

Welcome to the thread @toomanydiets , it’s nice to actually hear from another who understands the pain of it, many of course don’t, well lucky them I guess. I actually lost three stone afterwards because of having to eat very low fat foods. I found there wasn’t much dietary information given so had to do what I thought was best, which made eating around others different, especially in restaurants, I had to find the lowest fat item on the menu and even then leave half of it. It was only after talking to a consultant at a follow up after my cyst that i found out I could eat normaly again, and since not drinking alcohol, I’ve really gone for the chocolate big time, already put a stone back on!

obviously you don’t have to answer this, but were you told drinking in moderation was ok? I was advised never to again, and it has been incredibly challenging, it’s like a mourning process, a very long one at that.

I was wrongly diagnosed with CHRONIC pancreatitis. Put on permanent medication (which I did not take, thankfully) and told I could get pancreatic cancer. Most definitely to never drink again.

It turned out it had just been mild acute and I needed and need no medication. (This is after a very stressful time where I probably had had too much wine and too little food. But was a totally responsible, functional human being!)

I gave up smoking after (which I was planning anyway) but still drink (after 6 months off JIC) this was 10 years ago.

I started a thread at the time and many joined. Even teetotallers were told it was due to alcohol, which it most certainly can be. But; it can be other things. Similar very unsympathetic doctors. I also have alcoholic all over my medical records.

How old are you and do you eat healthily?

Hey there @BlackStrayCat ,thanks for posting.

I’m 42 and my diet is pretty balanced on the whole, I was very strict at the beginning during my initial recovery, but received no information about diet until my second run of illness, when they told me I can eat normally, but I should never drink alcohol.

It’s shocking that your diagnosis was so wrong and that you were due to start medication, I presume it was the digestive enzymes, they mentioned those to me if I ever progress.

When I was admitted, I wasn’t being given enough fluids, one very unsympathetic nurse didn’t bother because she had not been on the course for administering them, it was my partner and a nurse on the night shift that sorted that for me, I’m pretty shy and didn’t want to make a fuss, and felt totally ashamed for the reason I was there, I felt judged by some and at a later date saw how they viewed other patients who were in to dry out, which wasn’t very nicely.

A nurse on the night shift flagged my lack of fluids and pain management, then some doctors and nurses visited in the night and were going to take me to ICU if my pain wasn’t managed and I wasn’t given enough fluid.

I’m sorry that you went through similar with unsympathetic staff, there were also of course lovely ones. It sounds from those who joined your original thread, that even 10 years later, pancreatitis is still not really understood, as I’ve since found out all the ways it can start, some completely unexplained.

I too was hospitalised with acute pancreatitis - mine was due to gallstones but I have chosen to be teetotal since it happened. I also had a pseudocyst so know the misery well! I lost 7 stone and have kept it off. I can and do eat more fat now, but I was never the sort of person just to have one drink, so I find it easier to stick to alcohol-free beer.

A drink here and there PROBABLY wouldn't hurt, but for me, it's not worth the risk (I nearly died). I've lost the desire to drink but take comfort in the fact that I definitely experienced a lot of drinking for a solid 30 years before I became ill! 😆

As I'm late 40s now, more of my friends are teetotal due to perimenopause so I don't feel so different. I'm very happy, but it took a couple of years to reconcile myself to not drinking ever again.

Good luck with whatever you decide!

Hey @msnotmissm

It’s interesting with the pseudocyst, it was 7 months after my acute pancreatitis when it became infected and I was hospitalised, but in the run up to that, I just didn’t feel right for months, but just assumed that was because I’d been ill and had a bereavement.

My weight has gone up steadily since my 20s, so when I lost 3 stone because of the pancreatitis, I became aware of this lump, but assumed it was part of my sternum after googling it. Then I started to think, well maybe I was always this odd shape, as I couldn’t really remember being this thin, it was just a distant memory lol.

I agree with the fitting in of a lifetime of drinking, 20 years of it for me, and I’ve never been just a sherry at Christmas sort of person, or some mythical (in my circle anyway) person who enjoys one glass of wine with a meal. No I will admit something a lot of drinkers don’t, I liked feeling tipsy or drunk, and don’t mind admitting to myself that the taste of drink on first trying was foul, and I had to persevere to find one that I could tolerate and eventually enjoy the taste of, though of course it’s not the taste but the effect we enjoy, I drink alcohol free beer, but really as a soft drink it a bit weird in a way.

I was incredibly ill as well, and not sure if drinking is worth the risk, the weight loss from no alcohol calories is great though, well done for keeping 7 stone at bay, and thanks for posting, I really appreciate it.

I'm 30 and had my gallbladder removed when I was 24, can this contribute to pancreas function? I smoke about 30 rollies a day and definitely go over the recommended units per week. The gall stones were worse than giving birth, but that was emergency surgery because they got stuck somewhere down a pipe 🙈 I can't imagine living with pain like it everyday. You started a really good post and may save some Ives by being so candid ❤

I had post partum pancreatitis when my baby was 3 months old - yes, it's a thing! The pancreas is estrogen respondent and I still get it to this day - when my hormones fluctuate throughout my cycle. I don't have chronic pancreatitis, but I have acute pancreatitis chronically if that makes sense!

I am on and off morphine and codeine to manage this.

However, after my first necrotic bout, I also had a very large pseudocyst.

I found out I had pancreatic cancer 3 months post initial episode. It is believed that the pseudocyst potentially turned cancerous fast, for a variety of different reasons. I was stage 3 and had a whipples procedure as well as 22 chemotherapy cycles.

I can drink if I want to, but I remember a time when it was uncertain and just the fact that it had been taken away seemed to make it harder to digest. I felt like I was losing a social life - which looking back at now, makes me cringe. However, I think I was grieving for my life pre cancer, too.

I am 7 years post pancreatic cancer now and sober by choice - I hate the hangover, I hate that it damages our bodies and I hate the shit that gets talked whilst pissed. I will have a drink on very special occasions, maybe a couple of times a year although I haven't had a drink since last August - even typing this makes me wonder why I bother on special occasions, though.

You are going through a whole range of emotions and illness knocks your confidence, makes you miss the person you were before you were ill and makes you question who you will become. It will fall into place.

Nothing is worth that indescribable pain - I can't control my bouts and it will likely happen until menopause - I'm only 35. If the doctor told me it won't happen again if I did x,y and z then I'd be delighted. Just never forget the pain.

Just as a side note - you may get the odd flare up here and there - it's relatively common, so don't panic; I remember how much my world would crumble when that amylase would come back at 5,000 but now I'm much more adjusted and understand the organ more. I am under the care of a highly specialised unit and there's not much I don't know about the pancreas - not something I ever thought would be a 'thing' for me 😂😂😂

Keep on keeping on xx

@Amybelle88 thats so interesting.
I’ve had recurrent acute pancreatitis for years and what you say about flares with your cycle really resonates.
ive never had a cause either.
can I ask who you see?

’knocking of your confidence’ and ‘crumble at an amylase result’ you’re the first person who’s hit that straight on for me.
the sudden tearfulness with the high amylase even though you know it’s the your pancreas and that’s why your in hospital to start with.

@cookiebee I was told to stay off alcohol completely in the recovery phase, and that it isn't good. I had some flare ups for a year or two after and didn't drink much then. Also list several stone. But I recovered fully so now I drink.

I'm sorry you all had such a bad time in hospital. I think because my attack happened in the hospital and was so sudden and overwhelming they were all over it. I was in for 3 weeks and a lot of it is like a dream - combination of morphine and pain I suspect. I didn't really understand how ill I was

@AlwaysTheRenegade @Amybelle88 @toomanydiets @Answersunknown , thanks so much for your messages, there’s many things there that resonate with me. I’d like to answer you all properly, but I’m just away with family for two days from this morning, actually it’s a trip the drinking me wouldn’t have done, or at least would have preferred if it just involved the pub. So I will come back on when I’m back if that’s ok.

@Answersunknown I'm so sorry you go through this - I'm convinced that a lot of women who suffer with idiopathic pancreatitis actually have it because of their cycle.

The sole reason I had my first bout was because I'd had a baby - I never had pancreatitis before this. As my hormones changed post children, so did my physical body.

I started noticing when my flares would occur and it was around my period. They would also sometimes happen when I'd just hit ovulation and my estrogen dropped. I kept a diary for a long time and brought it in to my surgeon who performed my whipples procedure. He wasn't sure - but consulted with a colleague in Germany who he had trained (I think!) - the colleague had written a paper or carried out some form of study regarding the pancreas and female hormones - it is indeed a 'thing', but not something that is widely known whatsoever. On my hospital letters it says 'recurrent pancreatitis, menstrual related'.

My oncologist told me that post partum pancreatitis is also a weird little phenomenon so it just makes sense that if it can respond to hormones post pregnancy, it can do the same throughout our cycle.

I had doctors shouting at me when I had my first couple of flare ups - telling me it's nothing to do with my hormones or pregnancy; it's just idiopathic and that's how it is. I don't know about you, but I've found that so many doctors don't fully understand the pancreas - when I was under the specialists I was told "yes, it's a thing", just like that.

The wrong doctors also told me that if my pancreas had necrotised, about 30% they thought, then it could possibly kill me as it's not possible to live with so much pancreas missing.

After my surgery - I have just under half left and you can actually have it fully removed. It would make you diabetic, but it's doable. See what I mean about having the wrong doctors?

I am under the Royal Liverpool Hospital - they are a specialist unit and widely acknowledged as the best in the country - if not Europe. I was very unlucky getting cancer and but very lucky being in Liverpool to be treated by them. They are a highly skilled team who roll approaches and treatment paths that everyone else is catching up with - particularly in chemotherapy post pancreatic surgery for people like me.

I treat my pancreatitis at home with morphine and codeine - this is how the hospital treat it as well as the use of fluids in an iv drip. However, because I have a lot of my pancreas removed, I am safe to do this as the ramifications of pancreatitis in the traditional sense don't apply to me as much - the pain is the same but it can't do things such as shut organs down as I don't have the head.

Start to track occurrences - track your cycle first and see if any flare ups coincide with ovulation or the onset of your period. I'd literally get a flare up and go to the toilet the next day and I'd come on, but also post ovulation, too - as women, we have two estrogen drops throughout the month, not just one before our cycle.

You have my complete empathy - acute pancreatitis is hands down the most painful thing I've ever endured - and that's what it is - sheer endurance. Once that 'active' gnawing pain has hit its peak and started to settle, we are then left with a soreness that feels like we have weights hanging off our organs. I am completely and utterly incapacitated - and I'm sure you're the same.

I hope your bout frequency reduces! ❤️

I have pancreatic insufficiency, which is not in my case related to pancreatitis. I have never, as far as I know (my gastro consultant said I would definitely know!), had pancreatitis. My pancreas looks normal on scans, but it just doesn't work. My pancreatic insufficiency is officially classed as 'idiopathic' meaning there is no obvious cause, but I do think it is related in part to alcohol.

I did have symptoms of issues with my pancreas probably 10 years before the real issues flared up, so I think the cause is probably complex. I think a lot of these issues do have their root in trauma of some sort, but trauma can also be the catalyst for behaviour that then exacerbates the problem. I think my body had simply been really impacted over a long time by chronic stress, and then when my drinking did become heavy, it accelerated the process.

The body is a funny thing though as it can tolerate huge amounts of damage for a long time, but then even a minor thing can flip the switch at other times. I drank a lot like way more than binge drinking. I was a daily drinker for the last few years, and for the last year or so before I stopped, I was drinking 3 bottle of wine a day, every day just about.

Funny enough, when the consultant was running through things they wanted to test me for (as I was having bowel issues for a couple years), I was praying for Crohn's or something else that would allow me to keep drinking. He said, it could also be pancreatic insufficiency, which is really no big deal, you just take the tablets and you're fine. I went and googled it and saw that you shouldn't drink and I felt utterly panicked. At the time, I would have taken cancer. Or Crohn's. Or anything else. Because I knew you could still drink with those.

I actually continued to drink for about 2 years after my diagnosis. Pretty much daily. I took the tablets and I just tolerated the bowel issues. I just wasn't ready back then. When I was finally ready, which was more to do with how much drinking was impacting my mental health and my life, rather than my health, I was really ready, ready. And I stopped and never looked back.

I am over a year sober now. My digestive issues are much better now. My sobriety is a big part of who I am and my identity. And I look back now and think how funny that the one thing I was so terrified of is now so important to me.

I think this is a really important thread though. We often hear people talk about their worries about the impact of their drinking on the liver. But actually the liver is quite resilient. It's the rest of the digestive system that goes first. The stomach, the bowels, the pancreas and gallbladder, particularly related to inflammation caused by alcohol. We don't ever talk about that. The mind-gut connection is also really important. When your gut is all messed up because of what you are putting in your body, it affects so much else about your wellbeing and mental health.

This thread is a frightening read. Thank you for posting it, OP.

I have chronic pancreatitis, I’m one of the lucky ones who’ve never had a severe acute episode. I drank fairly heavily for 20 odd years (peaking at a bottle of wine a night) and I always worried that I was damaging my liver.

I often think when I see people asking about liver test results that they should be more concerned about what they are doing to their digestive tract as a whole. The liver is often the last thing to go.

Anyways, I was diagnosed with CP in 2017 and told not to drink ever again. I didn’t drink for over two years and got myself really healthy. I didn’t need creon/painkillers so my consultant discharged me.

With no one actually watching me I started to think about drinking again, I told myself it would be ok if I just had one.

I think I wanted to see what would happen, to test the water a little bit, but most of all I think I had a feeling alcohol had been taken away from me by the doctor and it all felt terribly unfair.

I drank and it was ok. So I drank again and within two years I was drinking at least four days a week. I told myself alcohol was my release valve, my off switch, my sure thing. I told myself all manner of bullshit and carried on drinking.

Alcohol is being awake at 3am sweaty and anxious, wondering why the hell I did it again. It’s the grinding pain under my ribs and the burning sensation in my back. It’s the voice in my head that kicks in at 3pm and says let’s just get something tonight, you can always stop tomorrow.

I was thoroughly miserable and knew I had to make a choice. It wasn’t about the CP, or some doctor telling me to stop, it was my own decision this time. That has made all the difference - I’m doing this on my own terms and I’m much stronger for it.

I don’t have any answers on how to handle not drinking after a diagnosis because I royally screwed it up. I do know that I like being sober and no longer view it as a cross I have to bear. I have made peace with myself at last.

Well I just think you're incredible and very brave for sharing a story that so many would hide.

I'm in the creon gang, too - I think the tablets fill me up more than my meals sometimes 😂

My husband is also sober - we were never big drinkers anyway but it was our main source of socialising. We both now get a buzz from still going out but knowing we are getting up hangover free - our kids have never seen us drunk and whilst I don't necessarily think it's wrong for kids to see people drunk, it's a part of life, I am actually weirdly proud of that.

I hope you're so proud of yourself cos I think you're just brilliant ❤️

Thank you so much for your post, @mindutopia

Reading the real life effects of alcohol on health really hammer home to me how much I want to stay AF.

Thank you for sharing. You sound like a very strong person.

I’ve found it amazing that you have all been so honest and open sharing your stories of how this bloody organ that no one even knows exists has affected your lives, thank you all for posting. I also agree that the royal Liverpool hospital is excellent, I was transferred there for the treatment of my pseudocyst, they are definitely experts and everyone was wonderful. The only issue I had whilst there was one which wasn’t there fault, I have incredibly deep and difficult to find veins, it always causes issues for the nurses, and on admission it resulted in multiple attempts at inserting a cannula, blood on the floor and me fanning myself with an empty sick tray, trying not to pass out 😂.

One reason that I also wanted to start this thread, is that when I read through all the alcohol free threads, there is barely a mention of what alcohol can do beyond people worrying about their livers. I was at a christening quite a few years back, drinking of course, and a woman there stopped me as I was on my way outside to smoke, and said how could I put that poison in my body (meaning the cigarettes) all whilst she was swigging Prosecco. I do miss smoking, il admit, though it has killed many family members, and it is quite rightly being demonised now, but alcohol has not been demonised in the same way, and I’m uncomfortable with that sort of hypocrisy. Alcohol causes many of the same internal illnesses, but of course it doesn’t smell and is acceptable in middle class circles, so shhhhhh let’s not mention all the evils it can cause, and of course we can drink to forget those thoughts. I presume you might think there is a bit of jealousy on my part, that I can no longer do these things, you’d be right, I think it’s only natural, I admit it.

I read Alcohol Explained as so many on here recommended, it really helped me understand why I want to still drink alcohol. I bought myself a CBD vape and AF beer, so for a time could do these things that felt so normal to me, after a while I’ve not used these as much, my general mood is better, more stable. I actually want to drink sometimes still, but then remember the incredible pain I was in, the shame I felt that this was my fault, having to go through that again, I’m just not sure I could.

I sometimes think ‘why me’, when all these people around me seem to make it through unscathed, my friends keep drinking heavily, why do they get to and not me. Well the answer to ‘why me?’ Is of course, why not me, I’m not the central character on earth, these things have to happen to someone, and many worse things are going on.

But also I’ve realised that the people in my life are not coming through unscathed. A very close family member recently dropped dead because of a blocked artery from smoking, also I can now see had huge alcohol related memory issues and alcohol dependency, another nearly died for the same reasons and lived, but their life has been shortened. My friends who drink as I did all have those puffy faces, can’t sleep well, have huge weight battles and are relying more and more on alcohol, there are no winners, it’s a gradual decline every time, but alcohol tricks you into a slow and awful death. Given all that, I still would love to drink, and can’t completely promise myself I won’t.

My partner stopped drinking as well, they are hugely supportive and I’m incredibly lucky, I think I only stay away from alcohol because of them. If you made it to the bottom of this, very well done, you could probably do with a drink 😂.

A friend of a friend was hospitalised with acute pancreatitis last year related to alcohol consumption. After swearing off the drink they only managed a few weeks before going into complete denial and drinking heavily again, resulting in being hospitalised a further 2 times with it. Its not looking good, and my friend has had to resign herself to the fact that they are most likely going to die from this. So, well done for stopping, that's the most important thing you can do

OP I don't have experience with pancreatitis but please read Jason Vale's Kick the Drink Easily. You need to help break the psychological addiction to alcohol to help you enjoy your life without it.

@BurbageBrook thank you I will check that out, there are still things I need to break the association with, stupid things like drinking whilst watching certain programs or films, they are now linked and I feel like I can’t enjoy them without alcohol. There are particular vintage comedy programs I haven’t watched in over a year because I now believe I can’t enjoy them without drinking.

@Blahdeblah12345 thanks for sharing that, I sometimes forget, or convince myself that it will be fine to drink, so hearing any experience with alcohol induced pancreatitis shows me that it will end badly if I do.

Hello, OP. I've just read all the thread and I was wondering how much you were drinking. Can you be honest about that now?

I wondered whether you were seeking help from alcoholics anonymous or anything like that because it seems pretty obvious to me, reading your post, that you have a real problem with alcohol and that you are suffering as a result.

I'm sorry you've been through so much, OP.

Did I infer correctly about your best friend, that you haven't see her because you can no longer drink with her?

That says an awful lot about her and character, OP.

There is incredible ignorance and misunderstanding about pancreatitis and its causes, they range from literally doing nothing and getting it, to it being triggered by surgery, gallstones or of course alcohol, and alcohol in any amount. What you have said is exactly how doctors and nurses look at you and don’t believe that you actually don’t drink anymore than the next person who just coasts on by, probably including them. Too much alcohol is of course any amount.

Im just trying to get a conversation going about not only pancreatitis, but also having a bit of a rant. I’ve not drank any alcohol for 17 months, I feel more hard done by than anything, but to you, what does someone with an alcohol problem look like? Just interested, I’m not having a go at you.

He talks a lot about that sort of thing, basically you need to break the association. And ironically the more you do these things without alcohol the weaker the old association will get. I haven't got problems with alcohol but supported a family member through stopping drinking and stopped myself for a while in solidarity. Honestly I can't recommend the book enough. I think it saved my family member's life. Sorry you're going through so much.