The doctors can’t figure out what’s causing my pancreatitis episodes

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I’ve had about 7 pancreatitis episodes since I was 13. I am now 17 and the doctors still have no ide what is causing it. I am not an alcoholic and my gallbladder is normal. What am I supposed to do, just live with it?

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  • Posted

    I was diagnosed with idiopathic chronic pancreatitus in 2016. I am many years your senior and went to the ER thinking I was having a heart attack. The doctor in the hospital decided to do some extra blood work and then I was diagnosed. Tomorrow I am going to a rheumatologist as my regular doctor had me tested for Sjorgren disease and my levels were high. It is an autoimmune disease that can be treated I think. Nobody else thought to test for that except my regular doctor. There is a connection with the pancreas, but rare. Good luck and I hope you get some answers.
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    • Posted

      Wow Judith, for past month or so I've had symptoms that hint at Sjorgren's.  I was going to mention it at my last Dr appointment and forgot.  I have Chronic Autoimmune Pancreatitis so it fits I guess.  If it's a rare complication it will be me haha.  Thanks for reminding me.

      I seem to be getting all sorts of medical issues since my pancreatitis diagnosis.  Actually I'm not saying pancreatitis is the reason, it might just be something that's showed up amongst my laundry list of ills.  Perhaps it's my age, my body finally getting the better of me.  I've beaten off most things with my stubbornness until lately.

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  • Posted

    You mention doctors, plural, so I'm wondering if you attended your local children's hospital where specialists from all disciplines investigated your case before they concluded you have pancreatitis?  

    If so you'll have a senior medico who is charge of your health with a team.  Make an appointment with the head person to discuss your situation.  Once you're an adult you'll probably not have an opportunity to go back and discuss your history with your paediatrician.  That's how it generally works in the public system, if private that shouldn't occur.

    You don't say if you have Acute or Chronic.  You don't say if you're on a low fat diet or taking digestive enzymes.

    I hope your doctor is a gastroenterologist who specialises in the pancreas, that's very important.   At your age you should be fully versed in your particular situation.  You may still have to get parental permission to have meetings with your specialist as you're still a child legally so hopefully you have parental support.

    Pancreatitis is not black and white with recent studies finding pancreatitis in children can have a diverse range of reasons for presenting.  If your disease is Acute yes you will have to remain very conscious of the possibility of future attacks and adopt lifestyle choices to reduce possible attacks which means a low fat diet.  Don't eat fast foods, never drink alcohol or smoke.  If Chronic yes you will have to ''just live with it" as you said.  However management is key, and can make a huge difference regarding quality of life.

    ?

    I'm not a doctor so am only going on what I've read.  Your doctor is the person to ask about your particular situation.  I do advise you learn as much as you can as you have a long life ahead of you and it will be your responsibility to manage your disease from now on.  It's very doable.

    These are the main causes of childhood onset Acute Pancreatitis according to one study I read that was done in 2013.  Alcohol doesn't even get a mention, it amazes me how many supposedly educated people including doctors still think alcohol is always the cause.

     'Examination of available data suggests that the top 5 etiologies of acute pancreatitis in children are biliary, medications, idiopathic, systemic disease, and trauma, followed by infectious, metabolic, and hereditary'  

    You said your gall bladder is fine so biliary is out.  Perhaps you had an infection or virus that triggered it, and sometimes it just happens (idiopathic).  Bottom line is if your have Acute Pancreatitis it's extremely important you manage it with lifestyle choices, diet, never drink alcohol or smoke.  

    Chronic Pancreatitis means you have no choice except to adopt that lifestyle.  The reasons why you have Pancreatitis fade away after awhile, it becomes all about ongoing management.

    You're making a very mature decision to find out how your particular Pancreatitis may impact your future and how to manage it.  Good luck.

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  • Posted

    Yes my attacks started at age 15! I’m 44 now but they never knew what was wrong til maybe 15 years ago after I was in nursing school. The first thing you need to find is a doctor that specializes in pancreas! I found out I had pancreas divisum! I also had a closed sphincter of oddi. After I had went to the ER for the 20th time i demanded labs drawn such as amylase and lipase that if elevated show pancreatitis! Mine were highly elevated and they admitted me! This was the same attacks I had been having since age 15. You need to see a specialist that understands the pancreas because many family doctors and ER doctors don’t know what they are looking for. You need an ERCP which is a test they go down and look to see pancreas and measure pancreatic pressure in the duct or ducts if you have pancreas divisum like me! You need to have gallbladder stones ruled out that could me blocking the pancreatic duct and any possible cysts around the sphincter of Oddi which is at the end of the common bile duct that leads to gallbladder and pancreas! So first get a specialist ! Good luck!
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  • Posted

    I missed that they think your gallbladder is normal! The ERCP test will give a specialist an idea what’s going on. I had a closed common bile duct which was called the sphincter of oddi! They had to do a sphicterotomy and open it up cause they think it may have been causing my repeated attacks! I also found out the pancreas divisum I have can give people chronic pancreatitis attacks! My pancreas is divided in half and instead of one large duct I have 2 smaller narrow ducts that may need to have stents put in. So 2 things to look at - if you have pancreas divisum or a blocked common bile duct called sphincter of oddi! 
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