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Dr finally agreed that my symptoms sound like chronic pancreatitis!

Posted , 18 users are following.

Gem1384
Gem1384

So after over a year of suffering in pain, going back and forwards to my GP every week, scans, blood test after blood test, my Dr agrees that my symptoms sound like chronic pancreatitis. She said she doesn't know what to do as my scans are clear.

I've phoned my consultant and I'm in next week to see her again!

To say I'm scared is an understatement! To be repeatedly told it's not your pancreas and it's just IBS! I'm angry!

Recent changes include persistant intigestion (omperazole not working), rapid heart rate 110+ most days, dizziness, shaking, blurry vision, calcium deficiency and very low magnesium levels.

I had always thought it was CP but with no one else agreeing with me i had kind of just thought it was in my head etc. Now I'm a bit shocked!

I have read that small duct problems are more common in females and seem more difficult to diagnose? Does anyone know anymore about this?

And the dreaded question, what is life expectancy like with CP? I've obviously read everything but it differs so much!

Can someone also tell me why they don't just take out your pancreas to stop the suffering? And transplant the islet cells to the liver? Surely this is the way forward?

Thanks for reading and sorry for the rant! Just very down and scared!

Gem sad

3 likes, 120 replies

120 Replies

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  • Kernel__49695
    Kernel__49695 Gem1384

    Posted

    Hi Gem

    I was really interested to hear your story as I am under the same hospital as you and I too have been dismissed as having IBS despite having the following pancreatic symotoms:

    Upper abdominal pain

    Left upper back and shoulder pain

    Constant burping

    Feeling full after eating small amounts

    Slightly raised CA19 pancreatic marker test

    CT scan and ultrasound scan showing "bulky pancreas"

    With all of the above I am still being told it's not my pancreas and all in my head or that I have IBS. It is so frustrating and I am at my wits end as to where to go from here!

    Just thought I would post as seems like we are having similar frustrations and at the same hospital

    • Gem1384
      Gem1384 Kernel__49695

      Posted

      Hi Kernel,

      Can I ask who you are under? Consultant wise? I'm under Dr Eden, I have also been seen by Dr Wong for my liver but was discharged from his clinic.

      I am having an EUS and HIDA scan over the next 3 weeks.

      I have started the amtriptiline albeit a very small dose.

      How long have you been suffering? Can I ask your age? male/female (sorry) what are your stools like?

      I have had to really fight over the past 14 months to get where I am now. All of it has been lead by me and the research I have done.

      The only way to really diagnose early CP is an EUS or an ERCP which (I think it's in one of the earlier comments above) they rarely do anymore due to the complications.

      My faecal elastase is 470 - which is normal. Have you had this test done? Is your pain just left sided? Aggravated by eating? Long lasting? Pain killer don't work?

      I am taking turmeric and grapes seed extract and I have noticed a reduction in my pain. Coincidence or not I don't know. My amylase and lipase are always normal as are my liver function test and FBC.

      Gem

  • lucy91054
    lucy91054 Gem1384

    Posted

    Hi Gem, I am also two years into tests, right upper abdomen pain. Can I just ask how you discovered Tumeric and Grape extract seed, where these recommeded or just based on your own research and do you think they have made any difference thank you
    • Gem1384
      Gem1384 lucy91054

      Posted

      Hi Lucy,

      Sorry ive only just seen your message. I had read about turmeric and grapeseed extract and then I saw that a lot of people were mentioning it on forums etc so I decided to try it. For me, it seems to have reduced the intensity and frequency of the pains. I had read that they are natural anti inflammatory for the body.

      Hope that helps!

      Gem

    • lucy91054
      lucy91054 Gem1384

      Posted

      Thanks Gem can i ask what doseage and how ofter you take it....might take a trip to Holland & Barrett tomrrow and try it thanks again
  • Dreamy82
    Dreamy82 Gem1384

    Posted

    OMG, I am so glad I found this discussion because I was starymting to mose my mind with those unexplained symptoms.

    I have intermittent upper right and left abdominal pain, that gets stronger after eating or laying down, as well as a feeling of undigested food long after I eat. I have lost around 12lbs (5kg) in the last 3 months. Researching, I concluded that all my symptoms point toward pancreas, however ALL my results are normal:

    -Blood tests all normal, except lower ferritin at some point. I did have a lower lipase level 2 years ago, but doctors say it doesn't mean anything

    -Abd. US normal

    -MRI and MRCP normal

    -CT with contrast normal

    Doctors are just saying I have a functional problem, since they cannot explain my symptoms. They did give me digestive enzymes which help a little.

    I am trying to schedule a EUS for next week, to be completely sure about what this is. It's hard because people around me alao think that it is all in my head. It's so frustrating!

    • nataliefranc
      nataliefranc Dreamy82

      Posted

      So frustrating isn't it. Mine been going on 6 years now all tests clear. Please let me know EUS results that's only test I haven't had.
    • ML83
      ML83 Dreamy82

      Posted

      I am in a very simmilar situation, the same symptoms....go for EUS in 10 days...
    • Gem1384
      Gem1384 Dreamy82

      Posted

      Hi Dreamy82,

      There are a lot of us in the same situation. All symptoms that match yours, all normal tests. My EUS was normal but my HIDA scan showed dysfunctional gallbladder.

      Just wait to see what your EUS results are.

      I know it's frustrating not to have an answer sad we all seem to be trying everything the Drs say or suggest with no let down of our symptoms.

      Good luck for your EUS and let us know what results you get!

      Gem

  • Dreamy82
    Dreamy82 Gem1384

    Posted

    Does anyone also have increased thirst? I do. And it's an indication of diabetes, which also points to the pancreas, but again results prove wrong: my blood sugar is normal!!!

    Doctors refuse to diagnose CP for two reasons:

    - all results are normal

    - never had an accute attack

    For a period I was dead scared I had pancreatic cancer, because of dr. Google, but I guess that would appear on some imaging test.

    Really scary and frustrating.

    • Gem1384
      Gem1384 Dreamy82

      Posted

      Yes I have increased thirst, lightheaded, dizziness, blurred vision, floaters, hunger that doesn't stop. But as you say all tests are normal and my blood glucose is normal. And diabetes doesn't usual show until 10-20 years of pancreas damage (so I've read).

      I paid to have private MRCP and MRI as I was convinced I had pancreatic cancer.

      I've now started to realise there's nothing I can do if all my tests are normal other than put up with it until anything else develops sad

  • jon54193
    jon54193 Gem1384

    Posted

    I'm in exactly the same situation as you Gem! So frustrating!
  • jon54193
    jon54193 Gem1384

    Posted

    So if all results are ok I'm planning to drink some beers, am I stupid?
    • Gem1384
      Gem1384 jon54193

      Posted

      I keep thinking the same thing, if all tests are normal then why am I not drinking alcohol? I'm scared too if I'm honest in case I trigger an acute attack or I start damage. I know I'm silly! Lol!
  • Dreamy82
    Dreamy82 Gem1384

    Posted

    When I'm having thos optimist vs pessimist debates with myself (I'm going coo-coo :-)), I'm telling myself that Pan Can symptoms usually appear (from what I've read out of the blue) and at that point the tumor is usually quite large.

    My symptoms have appeared gradually for 3 years. I had first classical IBS with diarrhea and lower left abdomen pain. Then 2 years ago I had an episode with similar rib pain, but it all dissapeared since I went gluten and lactose free...up until not.

    So no, I'm trying to convince myself it's not PC! But of course, I'm terrified :-(

    • Gem1384
      Gem1384 Dreamy82

      Posted

      Yeah I know. I was so scared that even after I got the all clear from my MRI/MRCP I still looked at the Internet to see how accurate an MRI scan was for picking up pancreatic cancer to make sure it was the best test etc.
    • Dreamy82
      Dreamy82 Gem1384

      Posted

      Me too..lol! I was even sceptical after the CT with contrast, which is after EUS the most precise test :-) but, if everything is normal, then why we keep having all of these symptoms. Something is happening down there, and it's just so frustrating not knowing what. That's why we are going crazy and paranoiac, researching our symptoms on the net (which is the worst thing you can do).

      A question though, does anyone know how to get enough vitamin D on a low fat diet. I live in scandinavia, and that's a big concern for me.

      My name is Sanja btw, and I'm really glad I found this thread :-)

    • Gem1384
      Gem1384 Dreamy82

      Posted

      Hi sanja, I take a vitamin spray made by Dlux. They enter your blood stream as you spray it under your tounge. So it avoids your digestive system. You can get a multi vitamin, vitamin d and a vitamin B12. Not sure if you will be able to get them in Scandinavia.
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