Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Alcohol support

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Alcohol induced pancreatitis and never being able to drink again

63 replies

cookiebee · 19/05/2024 18:07

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.

OP posts:
Blackbirdmagpie · 27/05/2024 00:26

Amybelle88 · 20/05/2024 08:57

@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! ❤️

Hi @Amybelle88 would you mind sharing the name of the consultant you see in the Liverpool Royal please?

I have a very similar story to yours (albeit my pseudocyst didn't turn cancerous, for which I am very lucky), and would be interested in hearing the opinions of a doctor who seems to recognise the link between the menstrual cycle and pancreatitis episodes. I'm struggling to receive anything other than a simple, "we know it happens" from the doctors I have seen.

I'm sorry for what you, the OP and other commenters have been through, no matter the cause it's such an unbelievably tough, painful and often very misunderstood disease. I can only hope more research is on the horizon in the not so distant near future.

shggg245 · 04/06/2024 13:51

This thread could not have come at a better time!

I've been ill for 6 months with 2 admissions. They did a CT with contrast scan which showed renal calculi in both kidneys.

I have had 4 flare up episodes, these episodes involve throwing up continuously and severe back pain. Plus drenched in sweat but cold? The symptoms last a week snd I usually need a drip as I keep getting dehydrated.

I saw a private urologist on Saturday and he thinks it may be pancreas related and wants me to have tests. He kept asking about drinking....I drink normally (for my peer group) but do occasionally binge / party, especially during lock down. Not excessive but then most if my friends / family drink alot socially. I guess it's all relative?

I think the surgeon may have spotted something on previously signed off CT as he said he wants a second opinion. And an amylase test.

Does this sound familiar to any of you? I'm trying to keep calm, but I have these moments of absolute terror. Please help. 🙏

TryingAgainAgainAgain · 04/06/2024 22:29

Sorry you're having such a hard time, @shggg245. It's horrible when there are no clear answers yet.

Im not sure I can help much as I'm also a newbie to this. I had pain under my right ribs, going through to my back. GP, having seen how much I was drinking, suggested pancreatitis. My lipase and LFTs came back normal. I got an ultrasound privately which was clear. So my GP now says it's not pancreatitis. I'm not convinced however, as an US is not definitive for ruling it out. Sorry that was a bit rambling but that's where I am. I haven't had any severe symptoms, but definitely want to know what's going on. Four weeks alcohol free now, which tbh has been a bit of a relief.

So important that you have a medic who sounds like they're looking at your case with an open mind. Hope you get some answers very soon.

shggg245 · 04/06/2024 22:32

Thank you so much 💓

Louise303 · 05/06/2024 01:55

Iamnotavicar · 26/05/2024 20:57

I have pancreatic insufficiency (part of the Creon gang) but mine is related to coeliac disease - this seems to be quite unusual. I've never drunk much (apart from some stupid teenage stuff) and 20 years ago when I stopped drinking I would struggle to finish a bottle of wine over a weekend.
I do get treated by medics as if I was an alcoholic but most don't know enough about the pancreas, as has been said up thread. I've never drunk much. I could do with losing a couple of stone. I get chronic diarrhoea if I eat too much fat, to the point of being housebound, but some fats are worse than others, especially cream. I take higher than usual doses of Creon, but I do have to watch what I eat.

I think my pancreas went into meltdown when I had a teenager with severe MH issues, I was so stressed. My digestion has never really fully recovered but I am told I manage it really well, given what I've got. But I wouldn't wish it on anyone

It's a horrible feeling when you get treated like this the doctors are there to help not pass judgement whether it be alcohol related or not. I have much the same symptoms as you but have primary biliary cholengitis. The amount of doctors that always had to remind me it was previously called primary billiary cirrhosis. I always get annoyed and tell them it's an autoimmune disorder. I pity anyone that goes through this sort of pain its terrible.

Louise303 · 05/06/2024 02:08

cookiebee · 19/05/2024 18:07

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.

It is hard op I hope you start to feel better soon thank you for the info on that charity I will check it out. There is a great facebook page with other people that have pbc and pancreatic conditions. It has been helpful lots of good advice and tips especially with foods and vitamins.

MrsYawn · 05/06/2024 06:16

My horrific acute pancreatitis was caused by weight, and previously having a low-carb/high fat diet for too long for my body. I had already chosen to be alcohol free for a couple of years when it happened, and continue as I’ll do anything not to experience that pain again!
The pancreatitis was also the start of me realising I had to end relationship with ex (father to children, so not done lightly) as he was incredibly unsupportive and actually went back to bed when my son woke him to say I was bad…my teen son then chose himself to ring the ambulance as by then it had been hours where I could only just breathe through the pain and sickness, and he knew this was serious as I usually deal with pain okay (only had gas and air each time I gave birth). I was in hospital for a week.
Re alcohol - my father was a secret alcoholic, and I was always very afraid of addiction. I would say my children saved me from that as I chose to not drink throughout every pregnancy and that showed me how much better in myself I felt completely sober. Nowadays I rarely even think seriously about fancying a drink - even when my adult children sometimes have nice ones in the house! I do miss the mellow feeling though, and I think always will.
I find my food addiction much harder to cope with - you have to eat, and whilst I’ve lost four stone I still know I’m an overeater that has to choose constantly to control it.

It’s all wearying and at times very lonely. ..but we aren’t alone. Always here for support if you need it @cookiebee and others.

MrsYawn · 05/06/2024 06:32

I forgot to say - I really do prefer my life now it’s alcohol free. I love taking a thermos of tea and going for walks, just sitting and enjoying the world. I learnt to sail in my forties! I like the role model I am for my family. I love my garden, my books, the fact I can always, without doubt, drive if an emergency happens to a loved one. I look back to the drinking me decades ago and am so proud she stopped and let this me live.

Iamnotavicar · 05/06/2024 08:54

shggg245 · 04/06/2024 13:51

This thread could not have come at a better time!

I've been ill for 6 months with 2 admissions. They did a CT with contrast scan which showed renal calculi in both kidneys.

I have had 4 flare up episodes, these episodes involve throwing up continuously and severe back pain. Plus drenched in sweat but cold? The symptoms last a week snd I usually need a drip as I keep getting dehydrated.

I saw a private urologist on Saturday and he thinks it may be pancreas related and wants me to have tests. He kept asking about drinking....I drink normally (for my peer group) but do occasionally binge / party, especially during lock down. Not excessive but then most if my friends / family drink alot socially. I guess it's all relative?

I think the surgeon may have spotted something on previously signed off CT as he said he wants a second opinion. And an amylase test.

Does this sound familiar to any of you? I'm trying to keep calm, but I have these moments of absolute terror. Please help. 🙏

The amylase test might be to see if you are producing enough enzymes, and how you are processing carbohydrates.
It does sound as if you are approaching a diagnosis, which in my view is always a good thing, because at least then you know what you are dealing with. My GP held my hand when she gave me some test results (for colitis), but I was actually relieved because I'd been told I'd got health anxiety, whereas really I was unwell but undiagnosed.

Knowledge is power! Or at least the start of knowing what you are dealing with. Good luck!

Iamnotavicar · 05/06/2024 08:57

Louise303 · 05/06/2024 01:55

It's a horrible feeling when you get treated like this the doctors are there to help not pass judgement whether it be alcohol related or not. I have much the same symptoms as you but have primary biliary cholengitis. The amount of doctors that always had to remind me it was previously called primary billiary cirrhosis. I always get annoyed and tell them it's an autoimmune disorder. I pity anyone that goes through this sort of pain its terrible.

I've never thought of referencing auto-immune in those discussions but I will from now on! Thank you

cookiebee · 05/06/2024 12:17

@shggg245 one quote I apply to anything challenging in my life is ‘when your going through hell, keep going’, I love the imagery that brings to mind, that stopping right now would be of no benefit and you would see the awful situation your in, keep moving. If you need support from any of us then please come back, even if it’s to have a good old rant.

thank you to all of you for the recent posts, I’m happy that this thread is being used, and you’ve all been wonderful, with me and each other. I know it’s a slow burning thread, but it’s fulfilling it’s point if it’s used now and again by anyone needing it.

Im doing fine, I had a moment yesterday when I really wanted a drink, just to have a drink and watch some comedy programs or a film and just have that wonderful mellow feeling that alcohol gives you. I smelled a bottle of open wine that a visitor had been drinking from, then put it back. I bought it for them in case your wondering why I have it, I’m happy for people to drink around me. The other day me and my partner opened and threw out some out of date ale that’s been sitting in the garage since god knows when, we both laughed as it smelled beautiful, like pubs used to smell.

But anyway I’m not going to drink, it’s possible one or two here and there would be fine, but i always drank amounts that in all honesty were considered normal in drinking circles, amounts which on here, if you have more than one sherry cause women to faint and men to be so shocked their monocle falls out! So I’ve just tended to my garden and am prepping my living room for decorating, just keep on going.

OP posts:
BlackStrayCat · 05/06/2024 12:35

Yes, thank you for this thread.

shggg245 · 07/06/2024 08:34

Thank you all for your kind words....I've been reflecting and totting up my alcohol intake over the past few years, since lock down anyway.

I measured it all out and it looks like I average out at 30 units a week , which is double the recommended allowance!!...I also binge drink once a month with friends.

I'm now thinking that's quite a lot actually and feel I should mention it to the doctor.

Funny how one is in denial, as I'd say I hardly drink at all. Maybe all my friends are in denial too as my intake is not unusual.

Anyway thanks for the thread. I'll keep reading X

New posts on this thread. Refresh page