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Acute Pancreatitis ... Help!

(26 Posts)
somersethouse Thu 20-Mar-14 19:36:29

Has anyone experience of this? I have just been diagnosed with this and spent a few days in hospital. Liver, heart, kidneys etc all fine. I had about 1,000 tests!

I have been advised not to drink alcohol and that is about it. I am eating super healthily, drinking gallons of wáter, early nights etc. I feel fine now, absolutely fine. I also have been diagnosed with Acid Reflux Disease so avoiding fizzy drinks, meat etc. I think it is all connected, I had been unable to eat properly for ages and had been putting off going to the doctor as I am abroad and it made me doubly nervous.

Has anyone any advice or personal stories they are willing to share about AP? I look on the internet and it is mighty depressing reading and often lumps Acute with Chronic which is much worse. I did a search on MN but most posts are really old.

Desperate for any happy stories really. I have another CAT scan in 2 months to check all is well... is it possible, if all is well, that I can just go back to normality and not worry? I have a DD who is only 4.

Thank you so much to anyone who replies! I can't tell anyone in real life as I don't want to worry people back home as I am am abroad and I have a very small amount of friends here, none of whom I know well enough to tell.

Lonely and panicking a bit.

PowerPantsRule Fri 21-Mar-14 01:03:19

I had this! I am a happy story!

Woke up in excruciating pain three years ago and like you, spent a week in hospital with some excellent drugs. My amylase levels were sky high. No real reason could be found - I haven't drunk for eight years, have a very healthy diet, etc etc.

Here's the happy bit - it has never happened again. I read all the horror stories too, and I have a young family and was terribly worried. But it seems I had 'idiopathic' pancreatitis and hopefully it won't come back.

somersethouse Fri 21-Mar-14 09:00:11

Oh thanks so much for your reply PowerPants.
I feel so much better having told someone! I ummed and ahhed about posting.

I am hoping it won't come back and won't develop into something worse. The internet makes it sound like a life sentence so thank you so much for your happy story!

They seem to think it could be from alcohol, although I don't drink that much... certainly less then ever since DD was born, I hardly ever go out, but had had half a bottle of wine the night before as my brother had been staying and was going home the next day. There were no gall stones etc, so they are not sure. Very strange.

Thanks again and glad you are healthy and all is well.

southwest1 Fri 21-Mar-14 10:59:27

I had it once, but was thought to be caused by the steroids I was on. Despite working in A&E at the time I waited about four days before I asked anyone to check me over, couldn't eat or drink without extreme pain. Spent a week in hospital and was fine after.

somersethouse Fri 21-Mar-14 17:19:51

Thanks so much southwest another good outcome!
Really appreciate your reply.
Seems that all the stories on google are the scary ones.
Do you eat and drink normally now or do you watch your diet carefully still, if you don't mind me asking?

So glad you are well and it didn't come back!

redspottydress Fri 21-Mar-14 20:16:43

I had it! I'm fine! Mine caused by gall stones x

somersethouse Fri 21-Mar-14 23:13:05

Thanks redspotty so glad you are fine!

PowerPantsRule Sat 22-Mar-14 00:50:22

I didn't change my diet at all to be honest. And I eat lots of butter. I have had one 'twinge' since but really that's all. I think lots of cases can just be random one offs. I was told 80% cases are caused by alcohol and I am not sure they believed me at first when i said I didn't drink grin.

The doctor told me to continue to avoid alcohol but just carry on as normal. I really don't think about it at all nowadays and I was just as worried as you - hope this helps!

somersethouse Sat 22-Mar-14 08:41:01

Thanks again powerpants, yes, a big help!

I think it is just looking at the internet it makes it sound like something that is with you for life. I have another CAT scan in a month to see if all is ok, if it is I was hoping, like you and I think others who have kindly replied, to carry on as normal. Avoiding alcohol though! (Although I wouldn't mind being allowed the odd glass of wine or a beer now and again) although I think I am going to be too anxious, it's not worth it.

They definitely do seem to default to 'it's alcohol that has caused this' and I felt really ashamed as well as ill... as if I had done it to myself when I really hadn't drank much, my liver was absolutely fine.

Well, thank you again and I feel so much better and reassured. I am mid 40's and guess I am just going to have to really look after myself and hope I have seen the back of it!

Have a great weekend!

AgentProvocateur Sat 22-Mar-14 09:28:35

I had it, too, caused by gallstones. I was very ill in hospital for 10 days, as I was misdiagnosed by my GP. Got my gallbladder out a few months later, and I've been a picture oh health for the last 16 years.

The pain of pancreatitis is excruciating.

somersethouse Sat 22-Mar-14 10:34:21

Brilliant AgentP more good outcomes! Feeling so much more optomistic now and really grateful and glad I posted, thank you!

Can I ask, did you permanently alter your diet and give up alcohol and coffee/fatty foods etc or did you also just carry on as normal once you felt better? I have read you need to be very careful for 6 months which is absolutely fine with me, but I am wondering about after that...

Thanks again!

southwest1 Sat 22-Mar-14 11:09:08

I ate and drank normally once I was out of hospital, don't drink that often but have got very drunk on more than one occasion and no adverse effects.

somersethouse Sat 22-Mar-14 11:36:10

Brilliant, thanks southwest.

Not at all the doom and gloom I had got into my head it seems.

Thank you all so much.

trainersandaches Sat 22-Mar-14 11:45:47

My Dad had it (caused by gallstones) and was in a terrible way, on a morphine drip in hospital for about a fortnight. He barely drank and was healthy, v slim etc so it was a bit of a mystery. He just collapsed one night while on holiday - only aged about 53.

He is now absolutely fine, fighting fit and has never had a reoccurrence. If anything he is far healthier as it scared him enough to have a super-healthy diet, be more active and take time to relax. Good luck OP.

somersethouse Sat 22-Mar-14 12:45:30

Thanks trainers, your poor Dad. It is strange, I also considered myself to be healthy, slim and eat well. This is why they focused on the only thing they could which was alcohol! It is just so scary when you collapse and end up in hospital... I had only been in hospital once, and that was to give birth!

So glad your Dad is better now, I agree, I think I will also be far healthier now as I will be mindful of everything and have everything in moderation. I am so pleased he is well and thank you for replying and your kind words.

I'd never even heard of Pancreatitis before!

AgentProvocateur Sat 22-Mar-14 13:57:35

I have a normal diet now, and drink plenty of wine. wink

somersethouse Sat 22-Mar-14 14:55:53

Oh Hurrah AgentP!

TapirsCaperWithReindeers Sat 22-Mar-14 19:56:54

I've had this a few times, it was initially caused by an op to remove my gallbladder which went wrong, but the later bouts were caused by scarring in the common bile duct, and spasming of the Sphincter of Oddi.

I've found that by keeping the amount of fat that I eat daily to below 30gms really helps to stop any further attacks, and also the dreaded diarrhoea which is a sign that an attack is on the way!

I also avoid eating lamb, pork, onions, pears, cheese, bacon, crisps, biscuits, or anything deep fried as they're all guaranteed to set things off, along with alcohol. I think though, that the triggers are different for everyone.

Your docs may well default to alcohol being the cause, but most of them do that because they don't have a clue. Make sure you get regular blood tests to check your enzyme levels, as it gives valuable information as to possible actual causes (rather than them just guessing at alcohol).

I will say - I had several attacks between 2007 and 2010, then nowt til June 2013, but am perfectly fine and in good health - I have a stent in the duct which stops the spasming, and I've not had a problem since!

somersethouse Sat 22-Mar-14 20:06:47

Taipirs thank you very much for taking the time to reply and share your experience. Sounds like you did not have a good time of it at all.

I am really glad you are in good health now though. Can't have been great having more than one attack, but it sounds like they have found a permanent solution and that it is working.

I don't really eat meat and I definitely plan to be very mindful of what I eat and drink, as some posters have said, they, or their relatives are healthier than ever now, which is so reassuring.

Thanks for the tip on the regular blood tests, they are really good at that here in Spain and no nonsense, people are constantly going for an 'analysis de sangre' even if they have just had the flu or feel under the weather! so I will request with my doctor, I think that is a great idea.

Thank you again.

MamaLazarou Sat 22-Mar-14 21:27:49

Hi somersethouse, just wanted to share my experience. I'm sorry you've been so poorly but unable to share the burden with anyone. Must be tough.

I had been suffering from undiagnosed gallstone pain for several years on and off (the various GPs I saw said it was reflux and gave me Omeprazole to reduce my stomach acid). I ended up in A+E with pancreatitis caused by the stones. There, they diagnosed the gallstones, hooked me up with some morphine and kept me in for a week.

I will have to have my gallbladder out (am waiting for date of op) as there are more stones so a danger of it happening again. I am on a very low fat diet until then.

Funny you should all mention alcohol - nearly every medical professional I saw at the hospital asked me how much alcohol I drink (none). The A+E doctor and triage nurse thought I was in labour, though! [Grin]

TapirsCaperWithReindeers Sat 22-Mar-14 21:46:58

You are very welcome - it's an horrific thing to go through, and sharing our experiences and tips are a surefire way to help others to not suffer the way we have.

Most sincerely hope that it's a one off for you! flowers

somersethouse Sun 23-Mar-14 08:59:15

Morning MamaL and thank you so much for your kind message!

Weird, I am omeprazole as they diagnosed acid reflux disease and a hiatus hernia at the same time. I can't help thinking it was all connected. Maybe that's why I have another scan next month, to check again for gallstones.

Poor, poor you having to wait for the date of the op. I hope it is soon, then you can get it all out the way and relax. It seems from all these helpful posts that as long as you are mindful, you can lead a normal life food and drink wise, within reason once it has been diagnosed and treated correctly.

Funny you mention labour, it has reminded me, that through the morphine fug, I thought to myself that the pain was worse than when I had DD!

I do hope you feel tippty top soon and thank you again.
Thanks again Tapirs too! I hope this thread and all the advice and experiences does help anyone else going through this.

MamaLazarou Sun 23-Mar-14 09:58:27

Oh, the pain was definitely worse than labour! I told that to the A+E nurse in my morphine haze and moaned, 'at least at the end of labour, you get a lovely baby!'.

caz2go Fri 08-Aug-14 21:50:07

Hi , just found this thread , how I wish I had found it 13mnths ago when I had an attack of acute pancreatitis !.I came out of hospital after 8 nights and went straight on the internet to find out what the heck pancreatitis was ,all the info and forums out there are sooo scary .
Anyway I have been fine since and completely recovered in fact due to eating (slightly ) healthier and not drinking alcohol actually healthier than before .
Nice to see some reassuring stories out there that we have had acute pancreatitis and beat it.
Keep healthy Caz x

PinkSparklyElephant Sat 09-Aug-14 15:45:36

I had it earlier this year. In my case it was caused by gallstones, although I'm sure the doctors didn't believe me when I said I don't drink! Mine started on the Saturday, I went to A & E on Sunday and was allowed home the same night as the pain had almost gone.

I've had my gallbladder again but I still worry I might end up with pancreatitis again.

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