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How were you diagnosed?

Posted , 5 users are following.

jonmg87
jonmg87

I've  had almost every test possible (blood tests, urine tests, stool test, abominal ultrasound, CT scan, MRI (with and without contrast), upper endoscopy, and chest xray), none of which has shown what might be wrong with me, while all of my symptoms (constant upper adominal pain, yellow and sometimes loose stools) seem to point to pancreatitis. The only thing seen so far was a cyst on the tail of my pancreas on an earlier ultrasound in August. In my more recent ultrasound and MRI, it was no longer there.

So I'm wondering what test led to your diagnosis of pancreatitis, and how long did it take?

0 likes, 20 replies

20 Replies

  • Reefsider
    Reefsider jonmg87

    Posted

    I was admitted to hospital with abdo pain which doc's thought was associated with another disease I have.  When that proved incorrect the renal team came in for some reason and I was discharged 3 days later with no conclusion but still in pain.

    I'd been complaining of ghastly loose, yellow or pale stools for over a year.  I was having to rush to the loo roughly 8-12 minutes after eating to the point I stopped going out because it not only occurred after eating a lot of the time.  No warning at all, a dreadful state of affairs. 

    I requested an abdo CT with contrast and it showed pancreatic calcification.  I then had an endoscopy and I was told I had chronic pancreatitis.

    In a sense, after reading a lot of posts, I feel lucky that a diagnosis came about quickly once they started looking in the right place.  Obviously I'd have preferred an earlier intervention as maybe I'd not have progressed to chronic but who knows.

    I don't pretend to know what's going on with you however if you had a cyst at one point you could be having symptoms because it takes a long time for the pancreas to heal.  I wish you luck, keep pushing for answers.

     

    • jonmg87
      jonmg87 Reefsider

      Posted

      Thanks for the reply Reefsider. I had about 6-7 incidents of extreme abdominal pain, and in the last one I had to go to the hospital. My concern is that these incidents of acute pancreatitis have led to a chronic condiiton that hasn't been diagnosed. I'm hoping that my current constant pain is just my pancreas trying to recover, and that it will eventually do so.

  • project2heal
    project2heal jonmg87

    Posted

    IT wasnt a test it was the fact that I had the symptoms all asociated with acute pancreatitis vomiting, sweating, rapid hear tbeat but most importantly amylase and lipase levels 10x the normal level and very high white cell count. My attack was acute and sever ewith lipase and amylase that high. They didnt even need to do tests to really confim . 
    • jonmg87
      jonmg87 project2heal

      Posted

      Hi project2heal, thanks for the reply. All of my blood tests thus far have been normal, although I've read that in cases on chronic pancreatitis they wouldn't show an elevated amylase or lipase level.

  • Petri
    Petri jonmg87

    Posted

    Are you in the UK? If so I would ask your GP to refer you to a Pancreas specialist. I just think that the fact their was a cyst on your Pancreas initially when all your symptoms started means something was happening which involved your Pancreas? I have had a very similar experience to you and it started Aug 15. Woke from sleep in pain as you described but nothing apart from elevated CRP and chest x-ray clear. No further tests until six weeks later abdominal ultrasound, endoscopy and colonoscopy all clear then a CT scan with contrast all clear and I am monitored regularly with monthly bloods for another condition and I have suffered daily ever since. It's driving me mad. I have asked numerous times is this my Pancreas to which the Dr usually says 'what makes you think that?' And then flatly 'no' but all other potential causes for my pain and symptoms have one by one been ruled out. I have now been referred back to the Gastroenterologist to try and deal with the symptoms I have. Good luck with it all as there is nothing worse than the not knowing!

    • jonmg87
      jonmg87 Petri

      Posted

      I'm in Canada, but I've been having the same experience as you so far. My doctors have told me that there is nothing physically wrong, but I have yet to have the test done that I want to rule it out, an endoscopic ultrasound.

    • Petri
      Petri jonmg87

      Posted

      Yes an EUS is a very good test for early chronic pancreatitis. I will never get an EUS in the UK with no firm indication that this is my Pancreas.......i.e.; raised Amylase or Lipase. I really don't think the Dr's realise how much this affects your quality of life. I know people can have issues and have every test under the sun and they all come back normal only to continue having problems and are eventually diagnosed 2,4 even 10 years down the line! I guess it will show it's ugly head eventually if there is something going on. It's just the waiting! I feel as if I have put my life on hold..............and I don't want it on hold. I want to be enjoying it every second of it! Some days I can push it to the back of my mind and think no it's not that but other days are harder, and I know worrying is such a waste of time and emotion but it's incredibly hard to keep that mindset when you feel so rubbish! The best of luck to you Jon and I really hope they find a reason for your issues that are nothing to do with the dreaded Pancreas!!

    • jonmg87
      jonmg87 Petri

      Posted

      Thanks, I feel exactly the same way where life seems to be on hold. Good  luck to you as well, and I hope neither of us have a pancreas problem!
    • Reefsider
      Reefsider Petri

      Posted

      I don't know how your system works in the UK Petri but my doc is a specialist in the pancreas.  I'm in Australia btw.  I had to wait until my specialist came back from the UK where he'd been working at Cambridge for 8 years totally focused on the pancreas.  I had been diagnosed a few weeks before his return and was advised to wait until he arrived and I'm so glad I did it makes all the difference.

      I'm wondering if it's possible for you to be referred to the Cambridge pancreas clinic?  My doc tells me about all the patients he saw and the studies etc which gives me the idea that it's open to the public. Maybe you just need a referral from a receptive GP who's open to the possibility at least.  It's common knowledge that tests don't necessarily show if chronic but it's also common for many gastroenterologists not to have much specific knowledge about the pancreas which is frustrating.

    • Petri
      Petri Reefsider

      Posted

      Hi Reefsider, thank you for that info. I believe I need like you said a referral from a receptive GP but because I was referred to a Gastroenterologist last year who also specialised in the Heptobillary system and I asked him if he thought it may be the Pancreas he said no. Although he did then do a Pancreatic cancer blood test amongst other things and the CT with contrast but that was only done to make sure he had not missed anything during my scopes as I had lost a stone in weight and had fevers. I must admit I have put the weight back on and more and my issues don't seem to be related to what/when I eat...........they are just there in the background all the time! Just not as bad as when I was admitted to hospital last year........they said Gastritis sent me home then went back and admitted me as all my vital SATS were off but they did more bloods then and put me on a respiratory ward so it must have been my oxygen levels they were worried about then. Discharged after a week with them saying unknown virus and been suffering daily since........all very odd. I will ask the new Gastroenterologist when I see him in Jan what he thinks and just try and get by until then. Many thanks and hope you are keeping well yourself!

  • elizabeth_76861
    elizabeth_76861 jonmg87

    Posted

    I would start with an Endoscopic ultrasound (EUS).

    Hope this helps good luck!

    • jonmg87
      jonmg87 elizabeth_76861

      Posted

      Thanks, thats the exact test I want to get done, but have been unable to receive so far.
  • ellen61407
    ellen61407 jonmg87

    Posted

    ERCP - can rule out other serious problems. It's as same as endoscope but tests duct pressure. It's a pain but those are next steps. Be aware of food and drink intake. Don't over do it and rest . It took 10 doctors 4 years to figure out what I had. If you are close to teaching hospital - best place. Or always Mayo, Cleveland Clinic and search web for pancreatic specialists! Hope this helps

    • jonmg87
      jonmg87 ellen61407

      Posted

      Hi Ellen, thanks for the reply. I'm still trying to get referred to another specialist to look at my case. My one concern though with an ERCP is that it can cause acute pancreatitis, how did you find yours?

    • ellen61407
      ellen61407 jonmg87

      Posted

      Hi - I have had at least 30 so far, actually I'm in hospital as we text. Once you find a great doc - they will hell you. One of the worst battles I've had, is actually trying to find someone who can pin point it. Most ER docs and general doctors just treat the symptoms- not the disease. ERCP is just like endoscopy- they just go abilities father to take pressure of duct system. It sucks when docs take so long to refer sad

    • jonmg87
      jonmg87 ellen61407

      Posted

      Wow, 30? That's crazy. Sorry to hear that you're back in the hospital.

      Was it an ERCP that gave you your diagnosis?

    • ellen61407
      ellen61407 jonmg87

      Posted

      Yes / the ERCP showed the docs I have pancreatic Divisum- it's rare but a birth defect - my 22 year old daughter has it too. Your pain could've come from anywhere / you need that to rule out some things or maybe they will find it smile are you in us?

    • jonmg87
      jonmg87 ellen61407

      Posted

      I'm in Canada. I've had three abdominal ultrasounds, a ct scan, and MRI, would they have shown a pancreatic divisum?

    • ellen61407
      ellen61407 jonmg87

      Posted

      No - they have to do the ERCP which is totally like the endoscope bug they go in a little deeper and look at ducts and see the pressure in ducts. This is what I know - you could have something totally different but this is just what I went through you need to find a doctor that can do an ERCP and who is a little bit higher than just a regular gastroenterologist
    • jonmg87
      jonmg87 ellen61407

      Posted

      K thanks. Out of curiosity what were your symptoms prior to diagnosis, and what are they like now?
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