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.

@NextPhaseOfLife from what I know about us, our long friendship and roughly how regularly we used to see each other, which was once or twice a year because of relocation, I strongly suspect that’s why.

I can believe it, OP. Some people need others to mirror acceptance back at them. Your friend has her own problems if you being a drinker was the only thread that kept her to you.

I've only quit for a month now but already I feel like a stronger person,

. I didn't have any really obvious physical aches or pains from of drinking, other than puffy face. I guess at my typical heaviest drinking, I would have maybe 1 bottle of wine 3 or 4 days a week, two or three weeks in a row, before slacking off for a bit for a little while, then ramping up again,

To me, that's a problem, no one should be in the habit of drinking that much, that regularly, it's too much.

lots of people think that's not even a lot - but it is. I think it's really common (in my circle) but it's not right.

I realised I'm too old for this shit, I didn't want to end up having a stroke or heart attack. I didn't even THINK about liver or pancreas.

You've been AF for a good while now. What options are there for you to develop interesting things outside of booze?

Thank you @NextPhaseOfLife i appreciate everything you have said, and agree with all of it. In terms of hobbies outside of drinking, I have plenty. I’m an artist, have the useless degree and everything 😂, so have taken up that again, also really just doing everything from diy to gardening, all the normal things that the sluggish effects of alcohol stop you doing, alcohol, even in what is considered normal amounts, really takes up so much time, you get that back again when you stop. I hope you have some interesting things to fill your new found energy with.

Oh god, just stumbled across this thread, having had GP recently suggest pancreatitis. Thank you, @cookiebee.

I have drunk too much for years, given up for six months or so and gradually restarted.

Had a pain under my right ribs which goes through to my back. Assumed liver but GP said ?pancreas. Presumably chronic as I'm only in mild/moderate pain. That was two weeks ago and I haven't drunk since. The pain has remained at the same level on and off.

I had blood tests a few days ago. I paid for a private ultrasound which ruled out gall stones, and found a mildly fatty liver. When I asked about my pancreas the doctor doing the scan just said he couldn't see anything and was rather dismissive. So I googled and found ultrasound isn't definitive for diagnosis of pancreatitis and that diagnosing chronic can be tricky and take ages. I can't see me getting far with the NHS as it is at the moment.

I was just about to start Mounjaro (new variation of ozempic) as I am obese. I was really excited as it can reduce cravings for alcohol as well as food. But there is a risk of triggering pancreatitis or gall stones due to the way it works. So that's on hold.

I'm terrified of ending up in hospital with this as I have no one to visit or look out for me, like you needed with your fluids. OP. I remember how my dad (a full on alcoholic) was treated by some staff in hospital, and I had to stick up for him.

I'm sorry you've been through so much, @Amybelle88 and everyone on the thread

That sounds brilliant, @cookiebee

I have an artist in the family and am quite envious of how much time can be spent absorbed in mixing colours!

It sounds like you have a really fulfilling life 🥰

My mum wasn't a drinker or a smoker but she died from pancreatic cancer. It's a vicious, vicious disease and I'm so sorry for you and anyone going through anything at all pancreas related.

You're totally right to be avoid anything that could trigger pancreatis again. Sounds like you're worth more than that. You're a non-drinker now - it's not worth a bit of shit fizzy or booze, it's just not.

When I was younger I had two friends this happened to. One was a colleague. He went for a couple of pints after work every night with the men on our team. Definitely didn't drink more than them. Got so ill he had to leave work and was replaced.

The other was a friend's boyfriend. It happened before I met him, and he always drank soft drinks in the pub.

I sympathise with you. I find it so easy not to drink if I am on my own. But DH drinks every night and I do find it hard to say no when he is pouring a glass of wine.

Hi @TryingAgainAgainAgain I’m very sorry that you are going through that. Obviously I don’t want to dish out medical advice, but one thing to consider is looking up what foods are better to eat during a pancreatic attack or after, generally low or zero fat, it’s not as bad as it sounds, if you like sweets for example, things like haribo are fine, obviously not nutritious, but you know, nice.

the pancreas helps digest fat, so eating as low fat as possible helps it rest, again I’m not definitely saying this is definitely what you should do, but may help. I found a chart online displaying foods to eat and avoid at such times. Hopefully you will be referred by your GP, if not be strong and keep on at them if you’re in pain. It’s so hard for anyone like us who shy away from confrontation, but try and look past their potential judgement of us and how we have got to this point and politely say, this is what I need, like the example with me not getting the fluids I should have. I know honestly how difficult it all is though, I hate speaking up, though some of my treatment by others recently has made me determined to. Be calm, polite and firm.

I've killed after a few children with it. (Not alcohol related) they have all been very sick.

I’m no help on the medical front but if’s so hard having your choices taken away. I know that.

I love your writing and your honesty, and just wanted to wish you well.

Thanks, @cookiebee. I don't particularly avoid confrontation and am able to advocate for myself, but many referrals, even if made, are taking forever now.

I wish I hadn't wasted £200 on an ultrasound when I now know that an MRI-MRCP would be much more useful.

You know what @Lilacdew thats the frustrating part of it with regards to your past colleague, it’s assumed anyone who suffers with pancreatitis is drinking from morning until night, so he was just having a few after work, the same as everyone else, possibly less than some of them, but he unfortunately got ill instead of the next man. Life in all regards to health can be random and unfair.

Its probably a good time to point something out to anyone who reads this thread with regards to pancreatitis. As far as my understanding goes, alcohol doesn’t DIRECTLY cause it, but it sensitises your pancreas to injury. So with your pancreas being sensitive, you could then eat something high in fat for example, the pancreas then overproduces its enzymes and in turn the pancreas starts to digest itself, and as stated earlier, many other things can trigger this response. Once your pancreas is injured, through any cause, and this varies from doing nothing to a long list of odd things that cause pancreatitis, then your pancreas is forever damaged, and alcohol is recommended to be off the table forever.

Now it was pointed out earlier that I obviously have an alcohol problem, but I wondered in return, what does having an alcohol problem actually look like? Well in a sense an alcohol problem is drinking any amount of alcohol, however small, it is a well disguised poison which from even one sip our body is fighting to rid itself of, no judgment, I’d still consume it if I could, I have no plans to though.

So somebody who partakes in maybe two to three glasses of wine a week can get pancreatitis, two pub visits a week also, someone on a ten day holiday or stag and hen party can get it, from steady drinkers to raging alcoholics, you can all get this, if you are unlucky, but in the eyes of everyone, you will be judged as just another piss head! Asked earlier in the thread if I’m ready to admit how much I was drinking, I imagine it was the same as many who are reading this drink themselves, a socially acceptable amount, but as it’s alcohol, is too much. A couple of pub visits a week, some weeks none. Saturday afternoons with my partner while listening to radio two. I’d never drink at the airport for an early flight, but would drink most days on holiday. At home I would always have plenty of days in a row where I didn’t drink, sometimes less. If you and those around you are fond of alcohol you will recognise these apparent binge drinking patterns, some go through life never or barely drinking at all, you may of course not recognise these patterns, family and friendships form on our social similarities.

So behaving how many others do, WHAM! I get pancreatitis, forever I’m an alcoholic who did this to themselves and is judged by others. So what I admit to is being normal, annoyed and confused.

That earlier comment about alcohol was so patronising and ill-judged, @cookiebee. The poster hadn't even understood your current situation correctly before wading in. But I guess it is indicative of how some people think: judge first. It says more about them though.

You say "pancreatitis" people think "alcoholic"; it is nothing of the sort and really, really irritates me.

OP I do still drink alcohol (as I said upthread) but I take my chance... I eat very, very healthily and do not smoke. As you say, it could be a pint after work every day, a one off bender on a stag do or a bottle of wine a night habit with dinner (or absolutely nothing to do with alcohol whatsoever)

Lady in the bed next to me had just had a big birthday lunch (she didnt drink alcohol but ate too much cheese)

There are certain celebrities who have died recently and deliberately insisted their cancer was not revealed as assumptions would be made.

I understand this.

My mum who is in her 90s was diagnosed with idiopathic pancreatic insufficiency in her 60s. She takes Creon with meals but has to be very careful what she eats. She’s not a heavy drinker and she never gets any pain but cannot digest fat without her enzymes so sometimes has diarrhoea if she’s in a flare up. She enjoys a glass of wine with her evening meal and a brandy as a night cap. I don’t blame her or begrudge her any comfort at her age.
I think it’s wrong that people with pancreatic insufficiency/ pancreatitis are automatically labelled alcoholics (mum’s condition has never been linked with alcohol consumption by her Consultant) as, judging by this thread, it seems luck of the drawer
.

Luck of the draw!

OP I had my gallbladder out last January after horrific pain in my pancreas.

I only found I out I had gall stones after a scan on my kidney to confirm cancer.

Anyway, I’m 🤞🏻still NED and life with 1 kidney is fine but I cannot drink alcohol at all without getting pain. I was never a big drinker either (3 or 4 a month) but now can’t even have a small glass of wine without pain so I just don’t have any.

I really miss the odd GnT but I can’t do it.

OP, thanks for starting this thread .

I have “travelled this journey “ with mum for over 30 years so I have a lot of first hand knowledge of pancreatic disease. Please don’t blame yourselves. The condition makes you suffer enough without feeling guilt on top of it. One thing I’d say was important is good nutrition. Mum maintained a good, healthy weight up until the last 5 years which I think stood her in good stead. When she’s having a flare up she has protein shakes which are enriched with vitamins and more or less lives off those (of course with her Creon too)

Yes! I am not surprised your mum was not linked to alcoholism in her 60s.
The lady who ate too much cheese was in her 60s and believed.

Anyone under 50 (basically 40s) are presumed to have a drinking problem IME.

I was so angry about the way I was diagnosed I had a good look at the whole thing. There are definite links to perimenopause and pancreatitis. (All hormones innit?)

I really do agree that nutrition is key.

I cant do all the link things properly (and I definitely drank a fair bit but much less than ever in my life, I had been pregnant, breast fed and at that point was running around after a 6 year old):

In general, menopause occurs in women older than 40 years. The decrease in estradiol and progesterone levels after menopause diminished their protective effects on the pancreas and may have resulted in pancreatic fat infiltration. The findings of the present study support this hypothesis.Feb 15, 2019

Effects of aging and menopause on pancreatic fat fraction in ...National Institutes of Health (NIH) (.gov)
www.ncbi.nlm.nih.gov › articles › PMC6408125

That was just a quick google.

I think we have to be clear that, whatever the cause, the primary medical advice once you have it, is to totally stop alcohol.

Absolutely. Alcohol and smoking.

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