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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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  • greg22471
    greg22471 Gem1384

    Posted

    Gem,

     I would like to add that if any doctor simply states that your symptoms sound like Chronic Pancreatitis, I would find a new gastroenterologist (only one that specializes in the pancreatic disease as most are generalist) and that it's professionally reckless and irresponsbile for the physician to make such as comment.

  • nataliefranc
    nataliefranc Gem1384

    Posted

    I have had upper left side pain for 6 years now all my tests clear too and told it's ibs. So frustrating. I'm starting to think maybe I should believe doc now and try not to stress about it so much! But it's hard when you google it and cp comes straight up!! I'm 33 female with 3 children. I'm in Worcester uk and seen 2 specialists in last 6 years, both said ibs and discharged me! I'm hoping that as I've had pain 6 years something would of shown on my detailed MRI of pancreas I had just before Xmas last year, I've continued to drink alcohol occasionally too so some scarring would be present surely?
    • ML83
      ML83 nataliefranc

      Posted

      Hi Natalie,

      did you also lost some weight and suffer with diarrhea?

    • nataliefranc
      nataliefranc ML83

      Posted

      Hi no that's the only thing I don't have! I lost about half a stone but that could of been stress from the worry of it! I also very constipated most of the time and stools never pale or oily. But I get pain upper left, and left side and back, rapid heart beat, pain the day after alcohol, hot flushes.
    • ML83
      ML83 nataliefranc

      Posted

      Thats the point... symptoms like pain and other could have more reasons, but unexpected weight loss is the most serious symptom.
    • nataliefranc
      nataliefranc ML83

      Posted

      Thank you for reply. That does reasure me a bit!
    • Gem1384
      Gem1384 nataliefranc

      Posted

      Hi Natalie, you would hope after that long then something would have shown on an MRI.

      I saw my consultant yesterday they have agreed to let me have more tests. So I'm having an EUS and HIDA scan. So hopefully I will know more about what is going on. I started my amtriptiline last night so I will see how that goes.

      My weight after pregnancy was nearly 13stone. I lost weight rapidly through what ever is wrong with me. At one point I lost 12lbs in 2 weeks. My liver consultant told me to stop weight and I asked him how? Lol! I'm holding steady at 9st 3lbs at the moment. No major fluctuations.

      I have joined pancreatitis pals. The people on there are great and very helpful smile I will look at the other groups you mentioned.

      Sorry you are having similar pains! It's horrible sad I hope you start to feel better soon.

      Gem x

    • nataliefranc
      nataliefranc Gem1384

      Posted

      Thank you I hope you find out what's causing yours too, please keep us informed on results x
  • nataliefranc
    nataliefranc Gem1384

    Posted

    Couple of great groups if your on face book pancreas pals and chronic pancreatitis support group. It's of people on them with their experiences I find them more helpful than my GP!!
  • Gem1384
    Gem1384

    Posted

    So I've had my first of many scans this afternoon. I had an ultrasound. The sonographer said everything looked ok but would elaborate. When I asked if my liver was fatty again she said she couldn't say. So now I'm worrying about that. But MRI on feb showed everything as normal?

    So I guess I'm just waiting for the Dr to let me know in 7-10 days.

    Gem

    • ML83
      ML83 Gem1384

      Posted

      Hi Gem,

      how are you doing?

      I go in 10 days for my EUS. Is there anything what should I prepare for? I mean procedure itself? Thanks.Have a good day!

       

    • Gem1384
      Gem1384 ML83

      Posted

      Hi ML,

      the only I had to do medically to prepare for the EUS was to not eat anything from midnight and I wasn't allowed anything to drink from 6am.

      The procedure itself was fine, no problems. I remembered going in, having the throat spray, lying down, having the mouth guard put in and then they put the sedation in and from then on I only remember bits. I remember being awake in recovery and that was it. It was no way near as bad as I thought it was gonna be. Especially after I did my endoscopy with just the throat spray. They gave me my results when I left. I felt dizzy and off balance for the rest of day and had a bit of discomfort in my stomach and throat but i was fine.

      I hope it goes ok for you! Let me know how you get on and what your results are.

      Gem

    • ML83
      ML83 Gem1384

      Posted

      Ok thanks ... i will reply after that....
  • bertha14306
    bertha14306 Gem1384

    Posted

    I take Creon 36,000 units and it has really helped me.

    I suffer from chronic pancreatitis... my tests also come out negative.

    I call it my miracle pill cuz I don't get my acid indigestion and bloatiness.  I also take Bentyl which helped me with the bloatiness.

    • Gem1384
      Gem1384 bertha14306

      Posted

      Hi Bertha,

      I did ask my consultant for a trial of creon but he refused as I haven't been diagnosed with CP.

      Can I ask you, if all your were negative, how did you manage to get a diagnosis?

      I've had my ultrasound results. Everything was normal appart from my gallbladder which showed "debris".

      Gem

    • nataliefranc
      nataliefranc Gem1384

      Posted

      Yes I agree no way would my GP prescribe cp medication as all my scans clear.
    • ML83
      ML83 bertha14306

      Posted

      Hi ,

      in my country its not a problem.My gastro doc says its just functional disorder plus IBS but pancreas is fine... anyway I have asked her for enzymes and i feel better with them as without them.I used to take creon and pangrol but last few weeks i am on superenzymes from now food which you can buy online. For me worked better as creon as i dont eat fatty food which creon is for.... anyway whats your thought... I have symptoms as CP and enzymes helps me to process the food and keep the weight....anyway my doc still says your tests are all clear/ok you dont suffer with CP... could be my case very early stage which is not showed on scans?

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