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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

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  • Dreamy82
    Dreamy82 Gem1384

    Posted

    Hello everyone, I just got out of the EUS. My pancreas and other organs look perfect :-) so mystery disease it is!

    The doctor told me that in 70% of patients he sees with these symptoms, they find nothing in results and do not know how to explain this. He said it's a functional disorder. In some cases though of early stages of chronic pancreatitis, he says the results show nothing. But this is not the diagnose I got.

    • Gem1384
      Gem1384 Dreamy82

      Posted

      That's great news!!

      It's the part where early stages of chronic pancreatitis don't show that scares me!!

      Good luck in trying to minimise your pain etc.

      I'm in terrible pain today and as I'm in the middle of a gallbladder attack I'm 100% sure it's all related sad

    • nataliefranc
      nataliefranc Dreamy82

      Posted

      What worries me is how long can 'early stages' last? I'm 6 years into this pain much worse last 2 years would something show by now? As I continued to drink quite heavily for the first 4 years as i didn't notice a connection with alcohol and the pain until 2 years ago when I cut down lots. Surely some scarring would show on my MRI by now?!
    • Gem1384
      Gem1384 nataliefranc

      Posted

      Hi Natalie, I would guess that if it was CP then it would be showing by now. You would hope! How's your faecal elastase?

      Can I ask you a question? Do you get aching in your back just under the left ribs age but just in the back/side. And do you ever get epigastric pain?

      Some of my old symptoms have come back again today sad one of the nobbles in my spine hurts, yes just one. And my bone pain in my shoulders and collar bone is back sad got the Drs tomorrow!

      Hope ur ok?

      Gem

    • nataliefranc
      nataliefranc Gem1384

      Posted

      Yes I get pain in that exact place on my back! Every blood test Is normal even when in a flare!

    • nataliefranc
      nataliefranc

      Posted

      I also get ache in my left shoulder blade sometimes. I'm back off to doc tomorrow too 😔 sick of it! Good luck with your appoint xx
    • Gem1384
      Gem1384 nataliefranc

      Posted

      Good luck with your appointment too!

      I'm getting sick of the pain too 😔

    • Gem1384
      Gem1384 nataliefranc

      Posted

      Hi Natalie,

      How did it go at the Drs?

      I've got more Calcium and VitD tablets. A hearing test (lol) and he blames all my bone pains on my calcium defiencey or fibromilga flare. So I'm willing to continue with the pills. He also said things could be aggravated by my gallbladder (which is still playing up since last Monday). So still gotta wait until 6th October to see my gastro consultant sad

      Hope ur ok!

      Gem

    • nataliefranc
      nataliefranc Gem1384

      Posted

      Oh it's so frustrating isn't it!! I couldn't get an appointment only with the nurse and that's a waste of time! Going to try again in the morning! I'm on my last amitryptiline tonight so I have to go tomorrow as really notice a difference if I don't take one! I'm wondering if I have fibro but I don't really get pain anywhere other than my left side of torso! I used to get right leg pains but they are better lately! Such a mystery!

      Natalie

    • Gem1384
      Gem1384 nataliefranc

      Posted

      Have you had your vitamin d levels checked? And it's probably worth you getting a referral to pain management? That's how I was diagnosed with fibromilga. I went coz of my bone pain (shoulders and clavicle) wasn't until he started pushing all the fibro pressure points that I realised my pain was more widespread then I thought. I reacted to all the pressure points! Google them and have a look, get someone else to push them and see if they hurt. Amitripiline is supposed to help fibro aswell so god knows why I'm in agony again with my bones sad

      I hope you get an appointment tomorrow!

      Gem

    • nataliefranc
      nataliefranc Gem1384

      Posted

      I'm presuming I would of had my vit levels checked. I do take multi vits every day have done for 3 years. I will google those points thanks

      Natalie

  • kapil53458
    kapil53458 Gem1384

    Posted

    hi Gem,, First of all i would say you are truly a Gem.. you are doing great job in diagnosing your disease and coming with very good questions to know how to get rid of it.. i would suggest you following things:

    1. Dont much think about future with this disease as it will subside with the time only and only your 100% efforts

    2. First of all you have to change your many habits eg. eating habits(Fat free diets, sweetlime juice, citric fruits, more and more gooseberry), sleeping habits(on time and if possible more and more rest) walking habits(u have to walk after every meal, this will subside all your worries, and stop any kind of exercises) and most importantly the thinking habits(take the responsibility of your mind, think that you will do cure this for sure, the sustainable efforts and 100% towards this will ensure your disease to get cure)

    4. dont go to too many doctors, they may start their own experiments.. i would suggest better you consult a very very good gold medalist homeopath.. it will surely help.. intially u may be asked for continue homeopathy along with allopathy but with the time your medicine would collapse

    5. i believe that the life of people with cp is affected but if you work hard to subside its effects then things will surely get back to normal

    6. also read my " i have chronic pancreatitis..." which might help you in your daily routine

    7. i am very sorry for your situation and i would pray that you get back to normal soon

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