How was your chronic pancreatitis diagnosed? Did it show up in a CT scan?

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Hello,

I have been having symptoms of pancreatitis - not acute.  But constant pain below my rib cage that radiates to the back - worse after alcohol.  I'm actually afraid to have alcohol now.  I have had a clean CT and ultrasound, and my doctor seems to think that rules out pancreatitis.  But I have read that is sometimes not the case.  So I was wondering how many of you had your chronic pancreatitis show up on a CT scan.  Should I keep bugging my doctor.  She seems to think it's just gastritis, but it really hurts.

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  • Posted

    My Doctors just started saying I had chronic pancreatitis. It did not show up on a ct or ultrasound. I had a bout of pancreatitis. blood work showed high levels of enzymes.  The pain has gone down a little but it is always there. So the doctors started calling it chronic.

    The one thing I have learned is that most doctors do not have a clue about the pancreas. They don't know what causes pancreatitis or how to make it go away. It has gotten to the point that I won't even go to the hospital anymore because they think I just want pain meds.  Most of the time if I have a bad bout of pancreatitis I just lay in bed and don't eat for several days. 

    ?

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    • Posted

      You need a gastroenterologist who specialises in the pancreas.  What you say is true re most doc's not having a clue about pancreatitis. 

      And whilst it's about management rather than cure for chronic, my pancreas specialist tells me that if I rocked up to the ER, even at the hospital he works from, the best I'd get is painkillers and sent home.  Obviously if there was a nasty complication it would show up on the tests performed in emergency but it's concerning how little is understood about this disease.

      It actually sounds like you're doing what works for you JTB, it's not nice feeling so alone with this though I agree.

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  • Posted

    I have pain in my ribs and back that is from the Facet joints in your spine. Hard to diagnose and even harder to get relief. Physical Therapy won’t help. Ice and rest and an anti-inflammatory is all you can do and it doesn’t ever heal. Very painful. You must restrict your movements to get relief. Many doctors aren’t even aware of the condition, just like another pain I have in my leg from the IT band which was diagnosed by my massage therapist, which may also help with the Facet problem (massage) if you get a good massage therapist. Good luck.
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  • Posted

    Mine CP showed up on the first CT, calcifications. 

    My generally vague symptoms were the reason I requested they look at my pancreas however my bowels were ghastly which was my major symptom. 

    My GP wasn't negative but I don't think she'd have ordered the CT at that stage had I not insisted.  I hadn't lost weight in fact I'd put it on, weird.  My diet was always low fat and I didn't drink alcohol so I wasn't waving a red flag for pancreatitis. 

    Stop alcohol completely, stop cigarettes if you smoke and adopt a low fat diet and see if your pain decreases and go from there. You haven't listed any other symptoms except for the pain which is a bit unusual on it's own.

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  • Posted

    Hello CarebearwdMom,

    Let me start by saying im very  sorry you are going through this. 

    I don't want to worry you but I'm going to explain the difficulty of this wicked condition. 

    There is no test for Chronic Pancreatitis (CP). I first experienced insane abdominal pain, but I've heard others can be mild.  By the time I got to the ER I was hysterical like a mad woman. The blood test showed acute pancreatitis. That is easily detected in the blood because of a high lipase and amalyse. These are elevated when your pancreas is inflamed. You can only be treated by IV fluids and medication for pain and nausea. 

    In my case, I was hospitalized for a month. They saw no gallstone so kept thinking it was alcohol related. It took a month of only IV fluids. No food or water through the mouth, as your pancreas will start responding to digestion and the cycle and inflammation doesn't stop. They did scans, MRI, you name it. Nothing. Finally after a month. I begged the GI Doctor to find out what was wrong. I could feel I was dying. Besides the pain I felt sick. Just like my body was diseased or something. He did a test for "function" called a HIDA scan. This may be misspelled but it tests "function"  they put a drop in my IV and watched my digestive system turn up in response on a computer. My gall bladder didn't show up. Meaning it was "sick" as they said. It was present with no stones in an ultrasound sure. But just wasn't working. They rushed me in surgery and took it out. Only then did I get better. But their month long inability caused permanent scarring and I've had acute pancreatitis about 60 times. Each time was a wicked onslaught of excruciating pain that only IV fluids in the ER could fix until the inflammation went away. Nowadays after 8 years. I get this same pain but my levels don't raise anymore. Some ER docs will not understand it is chronic. Because there are zero tests. It's just about documenting your history and it really helps to have one GI follow you so you can be referred or helped with pain management of other things. I've been sick over the years and because the initial gi doc knew my case. He understood I was not an alcoholic and needed help. I've been sent home tons of times from ER's while living elsewhere. They simply think there's nothing wrong and you just want drugs. It's so awful and demoralizing. Thankfully I went back to him after so much of this. He admitted me and sent me to see a pancreas specialist at a top hospital. I had stents placed in my bile and pancreatic ducts. They have cut my sphincter of Oddi muscle. It's been a nightmare that still after all this. Only a few docs understand. 

    My case was bad. Many people can be managed. Please try to see one GI doc that you trust. Stand up for yourself and your pain. It's a long battle if it turns chronic. I'm in pain management and worry about my pancreas constantly. I understand and I'm sorry. Do not drink alcohol, try to eat a low fat diet. 

    Please, if anyone needs anything, just ask me. Good luck. Keep me posted. 

    Sonya 

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    • Posted

      It is unbearable. I almost lost my life to acute necrotizing pancreatitis!!  No one understands until it happens.  

      It is a life altering disease !!!

      Prayers for you. 

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  • Posted

    I had acute necrotizing pancreatitis in Oct.  spent 3.5 weeks in ICU. 3 hospital stays and 6 procedures.  I have pain everyday in my left rib cage and back. 

    WITH ANY PACREATITIS YOU SHOULD NEVER HAVE ALCOHOL!!!

    Some foods are also an issue. 

    If your not happy with the diagnosis go to someone who specializes in the pancreas.  Those symptoms do not always mean pancreatitis.  If you’ve ever had a true attack you would know !!  The pain weather acute or chronic is unbearable !

    Wishing you the best. 

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  • Posted

    Hello, I’m in a very similar position to you. I’m 20 years old and I’ve has symptoms of chronic pancreatitis for two years now. It comes on every 2-3 months and will last for around 7-10 days. It’s horrible. I experience pain just below my rib cage and through to the same area of my back. I also get pain down my right and left hand side on my front and back. I have been to the doctors on many occasions and had blood tests and an ultra sound to detect gallstones (which came back negative) and they are just passing it off as gastroenteritis. The pain I experience flares up after drinking alcohol (which I rarely drink and I am now scared to drink) and eating some acidic food such as apples. 

    Have you had a diagnosis since this post of chronic pancreatitis? If so how was it done? 

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