Need advice for Chronic pancreatitis diagnosis

Posted , 4 users are following.

I have not been diagnosed with CP my MRCP and CT were fine in March.  However I have fatty stool which my dr says is EPI.  I am freaked out because the google told me EPI is usually caused by CP yet the see no abnormalities and all my blood and stool was fine except excess fat in stool.   Now my lift shoulder blade hurts on the outside by my spine.  Help! I am so worried I have CP and they could miss it.  I am told an MRCP is the gold standard.  I am reassured to see how long y’all have lived with it.  Dr google made it sound like a death sentence.  I am a 46 year old female and don’t drink and no weight loss 

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15 Replies

  • Posted

    I am in the same boat. Fatty floating stools, pain under left rib and side all the time with low amylase. Yet MRCP and CT clear, along with endoscopy. I am at my wits end, and this has been going on since January! 
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    • Posted

      Feel like I'm encroaching on a conversation between all of you. I'm older than you all and haven't had the test you've had. But still very worried. I , like many , have been all over Google and it has convinced me that I will die shortly. I had H-Pylori last year. Got rid of it with treatment. But the upper middle pain never left. Had three endoscopies , a heart cath , colonoscopy , upper GI , numerous CT scans of the whole body , tons of blood work . Everything turns out fine. However the upper ab pain never leaves. Have not had a EUS endoscopy or ECRP though. Have an appointment with the gastroenterologist next Thursday and will ask for the EUS. I don't seem to be deficient in anything as I have always taken vitamins and minerals for 15 years. They all say get checked early to find problems early. I did but I have to ask for everything. Docs don't suggest what to do. That's why I'm on Google a lot. Trying to find what's next. I would love to get one good night rest and not be woken by pain. Best of luck and maybe a miracle for each of you.

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    • Posted

      Sounds like you don’t have a pancreas problem.  If you have real concerns to y need to go to a Pancreatic Institure or teaching hospital. 

      I became ill on vacation and sownt 3.5 weeks in ICU in NY.  My husband hired a plane to get me to MUSC in SC.  They were amazed I was alive.  Lost 50% if my pancreas.  Spent weeks in the hospital off and in for months.  With 6 procedures to remove the dead pancreas.  Malnutrition, lost 45 lbs in 2 mos.  

      Had I not made it out of that hospital I will ups not be here today. 

      My point here is if your Dr does not specialize in the pancreas your behind the eight ball.  So many GI Drs have very little knowledge of the pancreas.  I can say the internet is your enemy!!!

      Wishing you the best of luck.  

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    • Posted

      You might be right. The pain just getting worse and worse. Have pancreatic specialist close by. So I'll keep my appointment with the GI doc. And ask him to recommend one. Hope you're right though about me not having a pancreas problem. Just scary because if I eat a regular meal , I double oven in pain for 2 or three days. Good luck to you and thank for your input.

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  • Posted

    I’m sorry but get off the internet. Your tests say your fine.  Do you think your Dr which just ignore something if he thought it was serious.  

    Your symptoms do not sound like CP. 

    If your that worried I’d see another Dr. but searching the internet is no way to look for a diagnoses. 

    Wishing you luck. 

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  • Posted

    I'm also in that boat with you. Upper abdominal pain day and night and floating stool. Had three endoscopies in 12 months , blood work , hida scan , all clear. Never had a EUS ultrasound though. Have appointment wit gastroenterologist doc Thursday though. Tired of being sick 24/7 and I want an answer. Doc never even suggested a problem with the pancreas over the past 18 months.

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  • Posted

    Have you been tested for malabsorption,due to pancreatic disease I have e.p.i I quite often get fatty floating stools due to this,I am unable to digest most foods especially fatty foods and have to take creon with all foods,creon digests the food for me as my pancreas doesn’t produce the enzyme that helps with digestion I often get stomach pain even though i take creon with all my food,this is a lifelong thing as my pancreas is beyond repair,I suffered significant weight loss and until diagnosed hadn’t got a clue what the problem was,I also have b12 deficiency and pernicious anaemia which I’m told is all connected to one and other,I’ve also just been told I must now take fortisips for the rest of my life,even though I take what I consider to be the right amount of creon with all of my food,I still get days where I have very noticeable stomach discomfort i.e floating fatty stools,pain and bloating in my lower abdomen,flatulence even though I drink regular amounts of water,it’s not very nice and is very worrying and have ended up at my local a and e on several occasions being hospitalised for days at a time,this illness is irreversible so I’ve got live with it and try and manage it the best I can but it’s not pleasant at all,I don’t drink alcohol at all,I don’t smoke and have never overly Eaten spicy fatty foods but still somehow was unlucky to have been diagnosed with pancreatic disease and e.p.i from the things I’ve read and been told b12 deficiency and pernicious anaemia can wreak havoc with the digestive system among other things,have you not been seen by a gastro or endocrinologist as these are the specialists who test and diagnose pancreatic disease,e.p.i etc if not you should speak to your g.p and raise your concerns with them,hopefully get the tests done to see what could be the cause of your fatty stools,I get a lot of lower back pain and shoulder and middle back pain ,I’m pretty sure it’s all connected as I never had this until I started having all these health problems,b12 deficiency and pernicious anaemia has a lot of knock on effects leading to other problems as lots of people suffering with this will attest to,I think your first steps should be to see your g.p get them to at least refer you to see a digestive consultant to get all the relevant test done,it does take a while to get these tests done and get the diagnoses but it’s the only way to find out just what’s going on,I lost loads of weight and even now 7 years later still struggle with weight gain and can’t as much as I’ve tried get back even half of the weight back on that I’ve lost,I’ve had to buy new different size clothes,it can be a long hard road full of trial and error regarding how much creon to take with meals,it’s the regular stomach and other pain and other issues you get with this dreadful illness that is the most trying,I’m pretty certain other people suffering with this will all tell you the same thing,have a word with your g.p get the ball rolling and get to the bottom of why things don’t seem as they should be,fingers crossed it’s nothing serious and you’ll soon be feeling as you should,best wishes to you and if possible let me know how things hopefully progress for you.regards..fenty.
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    • Posted

      I have been to a GI and Endocrinologist.  

      I have a CT, Hida scan, MRCP, octreotide scan.  All imagining came back normal.   I have 4 stool test done and only excessive fat cams up increased.  I had tons of blood work and I am D and B12 deficient which with supplements went to normal.  They tried me on Creon but it gave me awful diarrhea.  I haven’t lost any weight.   

      Did your imaging show damage to your pancreas? What lead to your EPI diagnosis? 

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    • Posted

      Oh the GI and Endocrinologist said take the b12 and D stop creon come back in a year.  Your pancreas looks completely normal on scans.  I am just worried they are missing CP and I will die in 7 years.  How long have you had EPI 
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    • Posted

      What is your doctor saying about your fatty stools on test? Surely they have to acknowledge that excess fat doesn’t show up on your stool for no reason? 
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