I'm really scared! Pancreatitis fear!

[allyp82]

Help - i am really scared that I have chronic pancreatitis. I am just so afraid. I have all the symptoms and used to drink far too much for about 4 years (about a bottle of wine a day). I don;t drink like that any more. I just know that I have it, and that it will take years to diagnose.

I have had bloods and ultrasound - both clear. But they only show up acute pancreatitis, and not chronic. There are so many people on the internet that have it, but it took ages to diagnose, with loads of negative tests first!

I am referred to a gastro consultant, but i have not had an appointment through yet and it has been 3 weeks. I feel like I am going insane with worry, and I feel like no one is taking me seriously.

But the worst thing is that I will have my life ruined and it will all be my own fault.

I'm sorry i'm in mid panic

does anyone have this condition or has worried about this condition?

My symptoms have been changing and are all gastric related, but really fit in with pancreatitis. If it wasn;t for the previous alcohol, i wouldn;t be so worried, but i hate the fact that it is all my fault. i am so stupid.

[kazzie]

Hi Ally

You HAVE NOT GOT PANCRETITIS

I have had it 3 times and the pain is agonising......I used to drink lots more than you!!!

If you had it you would be in agony, throwing up.....not even water staying down and no appetite whatsoever so although Im not a doctor I really dont think you have any worries at all

Pm me if you wanna chat

Kaz x x x

[allyp82]

Hi Kaz,

Thank you so so much for your reply. Its nice to talk to someone who used to drink a lot of alcohol. Sometimes it makes me feel so ashamed that I used to drink every day, my family and friends don;t understand because they are all 'sensible drinkers!'

I know that acute pancreatitis is agony, and I am not thinking that I have that, as I am not in that much pain, and I have had the amylase blood test and an abdominal ultrasound. It sounds like it was really awful for you when you had it.

But i am more concerned about chronic pancreatitis - i know that the symptoms are a lot milder and seem to fit in with what I am experiencing (pain after eating in abdo going through to my back, pain behind my rib cage, pain by my shoulder blades etc - is the pain in my back after eating that is worrying me most)

I have read on the internet that chonic usually happens after several (or one really bad bout) of acute, but i have also read about people that have developed chronic without ever having an acute attack - that is what panics me. Also i have read that people can be tested and tested and everything is negative, only to be diagnosed with it a few years later.

I now do not drink nearly as much as i used to, but i still enjoy a glass of wine (or two!) at the weekends. But the pain feels worse after i drink, and then that panics me more. Then I feel really weak for wanting a glass of wine when I am so worried about the health effects of drinking!!! Viscious circle.

Out of interest, after having attacks of acute pancreatitis were you advised to cut out alcohol for good? If so, have you managed to do it? (hope you don't mind me asking)

Thanks again, I was so please to get your message

Best wishes x

[allyp82]

Hi Kaz,

Just another quick question - how long to drink excessively for? and was it everyday? I kind of worry that although i wasn;t drinking mega mega amounts, it was the 'everyday' factor that is more likely to mean that I have chronic pancreatitis! (don;t answer if you'd rather not)

Also i was on escitalopram - which i don;t think you're meant to drink on, and that also worries me - although my liver is fine which is good

Thanks again x

[LisaLisa]

Hi just a random suggestion

My friend had gall bladder stones that eventually ended up causing her to have acute pancreatitis...she was unable to walk and no denying she knew there was a problem...passed out in kingscross station.

Anyway, the symtpoms of the gall stones before the panreatitis kicked off were also very similar and she had been having pancreas irritation for a while beucase of the stones.

She has them removed by keyhole surgery and is fine now and has not had any other probs with her pancreas or gall baldder.

Just an idea that you would not benefit from jumping to scarey conclusions about what is causing your symtpoms. And anyway arent a lot of chronic pancreatitis symptoms like IBS as well? Thats really common with anxiety as you know and doesnt effect blood tests or ultrasound as well.

Anyway hope your okay

Lisa
xxxxxx

[kazzie]

Ally Ive sent you a PM

Kaz x

[ScaredGuy]

Ally,

Can you tell us what ended up being the cause of your problems?

I'm having the same issues you are having and can't find a reason for my pain.


Thank you,

[Greenman50]

Heavy drinker on a bottle of wine a day for 4 years , wish that was all i drank over the years .

I,m not saying its right the guide lines say its not but i,ve been drinking for 30 years way way more than that every night , i know its not good for me and its being addressed and i,m doing good (for me) .

If you no longer drink its something else for sure ...pm me if you want .

[ScaredGuy]

Greenman,

I have never drunk in my life. I don't know what alcohol tastes like, but I'm concerned I have chronic pancreatitis because the pains Ally mentioned are very similar to the ones I have been having for more than a year without finding the cause. I'm really interested to see what the final diagnosis with Ally was. I hope he/she answers back.

Thanks,

[C.P.]

Hi ScaredGuy,

Don't know whether you still check this forum, but chronic pancreatitis is generally preceded by attacks of acute pancreatitis. I've only recently been diagnosed with the calcific kind, though I've had multiple acute pancreatitis attacks .

I have no history of alcohol consumption, am (mostly) vegetarian and do not smoke, so I must correct Greenman -- it is not really necessary for pancreatitis to be caused by alcohol, though it is one of the most common causes. Others include gall stones, genetic anomalies, gluten allergies etc. Mine is idiopathic -- cause unknown, and there are plenty of us around.

An acute pancreatitis attack would generally be characterised by:
1. Elevated serum amylase and lipase
2. Abdominal pain radiating to the back
3. Visible inflammation of the pancreas in the ultrasound/MRCP. The latter is a better imaging system.

Eating worsens the pain, and my mild attacks were treated at home by consuming only liquids till the inflammation subsided -- something that was determined by whether I could tolerate eating or not. I don't even want to recall the agony of the severe attacks. Hospitalisation, IV and opioids were involved.

My chronicity came to light after a mild discomfort which was reminiscent of an acute attack. I was happy as the serum lipase and amylase were, for once, normal. However, the doctor felt that with my history it made sense to have an ultrasound to make sure, and voila! A pancreatic duct dilation -- it had become chronic and enzyme tests no longer could be trusted. An MRCP confirmed this and the results were spiced up further with a sort of blockage caused due to calcification being found. This cannot be removed except with ERCP, which could cause another attack of acute pancreatitis. Happily this isn't required yet.

Anyway, I digress. Blood work along with imaging should let you know if you have pancreatitis or not. If you did have it, you have most likely been treated or diagnosed by now, perhaps for acute rather than chronic pancreatitis. If you are unlucky enough to have had this, do take care of your diet. Most of my recurrent attacks came after an increased sense of confidence which made me indulge in all sorts of food. Keep off fried things.

Feel free to PM me if you need any additional info. I have been scouring the web since yesterday (the results came out then and I think I am still in a sort of denial. At the very least I seem to have an adrenaline rush of the unpleasant kind which refuses to allow me to think of anything else or do anything else). I do hope that 3D printed whole pancreas derived from adult cells made into stem cells can be manufactured safely before something much nastier happens.

A side note: would appreciate any experiences of chronic pancreatitis of others. I wish to hear personal stories of this rather than medical info that I am inundated with...I need to know what to expect and what lifestyle changes I need to make.