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Chronic Calcified Pancreatitis Life Expectancy

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jamesh78
jamesh78

I was diagnosed with a calcified pancreas in 2007, this year (2014) I have had two MRI scans, 2nd for a probable cyst but thankfully nothing showed "significant" - I have dilated vessels, speckled calcification mostly around the head of my pancreas. I have had this chronic calcified pancreatitis for 7yrs now. I've read a few depressing official website ref life expectancy, "5-10 years left", cancer...like it's what docs want us to believe but I'm not sure it's true?!? I wondered if anyone is in a similar situation? I'm 36 now so lived almost 6 years with not so much pain or problems that I'm aware of but this year (2014) I've had a lot! Docs say they can't doing anything except control the pain which isn't controlled despite that I'm on oxy's, a lot and have been for over a year, now they want to try a cealiac plexus block around my spine. I've scared, it's a 100/1 safety risk with a 50/50 chance of any relief at all and I'd still be on my meds! I'm so worried about it, heard many bad story's and the 50/50 chance it'll work seems a needless risk - Or am I wrong? The whole CP is scary, I am kept in the dark, docs won't reassure me and talk over me when I try to express my concerns. Any experience or advice would be appreciated. I'm 36, feel like I'm 76 with constant negative views about my future from numerous doctor's and so called specialist. I don't believe the 5-10 years prognosis, (I've lived almost 8 years since they first did my MRI scan 2007) it can be life threatening but only if you're unfortunately unlucky I think? Everyone is at risk of developing some sort of cancer or life changing illness everyday. I could be wrong, I'm an expert at living with CP but I obviously don't know it all and would like to hear from people in a similar situation for advise, more experienced knowledge. Thanks

0 likes, 3 replies

3 Replies

  • robin0
    robin0 jamesh78

    Posted

    From what I have learnt no one has any straight answers.  As Pancreatitis either chronic or acute is under researched. 

    There is a floor In the hole process. 

    1: they admit you to hospital and tell you have Pancreatitis. 

    That it.

    2: discharge you and have you under there care for 3 weeks.

    3: say at week four you are back under your g.p.

    who hates sending you to hospital or referrals Because they have to pay for it. Fact I learnt from my gp.

    4: the hospital consultants dont talk or follow up with gps. And think your cured after 3 weeks even though you are still In pain etc.

    basically you have to kick off and threaten with the GMC and care quality commission.  To get some answers.  I have juat discovered that the enzymes have damaged my lungs and god knows what else.  

    But dont think about time scale think what can I do for answers and just enjoy life. After all you could get hit by a bus

     

    • jamesh78
      jamesh78 robin0

      Posted

      Thanks for your reply. I have been given 9 creon to take a day, oxynorm and oxy MR which do help the pain but already being threatened they will/are being reduced until I'm forced into having the 50/50 spinal injection which I have expressed I am concerned about. They think I'm putting it on then in the same breath say my pancreas is decaying, eating itself away. I'll research the meds, enzymes I'm on could be what's eating me alive! Doc's don't seem to understand although all the evidence is there they do talk as if I've got the flew, "it'll pass in time". I'm trying to live the best I can but genuinely the pain, sickness, basically tired of struggling each day is making life hard. Again thanks for your reply, fingers crossed an understanding more informed doc will arrive from somewhere soon! More research should be done, wish all CP patients had "The Answer".
    • Tolle4444
      Tolle4444 robin0

      Posted

       Hello Robin,

      Please explain what you mean by the enzymes damaging your lungs.  How? What were your symptoms, and what tests were done? What exactly is wrong with your lungs?

      thanks!

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