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23 Rare case

Posted , 6 users are following.

ImBroken
ImBroken

Hi I'm a 23 year old female I've had chronic pancreatitis fot three years I've had my gallbladder out and have been tested genetically and doctors can still not find a cause I don't drink alcohol or smoke, I have a strict diet which limits oils but I'm still in and out of hospital on a monthly basis I'm finding it difficult to keep a job as I never know when I'm going to get a flare up. there is no particular cause for my flare up it just happens randomly I have spoken to lots of doctors and they still can't find what's wrong does anybody have any ideas or is in a similar boat I'd love to hear from you thank you.

0 likes, 6 replies

6 Replies

  • pam64432
    pam64432 ImBroken

    Posted

    I'm so sorry to hear you are so young and have this horrible disease. Have you been tested for autoimmune pancreatitis or have very high triglycerides? There are many cases called ideopathic where there just don't know. I have been tested for it all as well and they don't know in my case either. It's crazy and frustrating because, like you said, you just never know when an attack is going to take you out for a week. It stinks, but I just say lots of prayers 🙏

    • ImBroken
      ImBroken pam64432

      Posted

      Thank you. Yeah they have tested for auto and triglycerides are okay, my blood tests always come back very abnormal some times it liver function cells other times my lipase or white cells are up its different each time, which is why they are so confused. So to hear they can't find out with you too. How do you manage to work? I feel like I let people down and mess the business around because I'm off so much? And my finance has to pay for every thing it's so stressful.

  • candice124
    candice124 ImBroken

    Posted

    Im so sorry, have they confirmed chronic on scans? I mean can they see the calcifcation? They dont have reasons for most of us. Im so sorry. My mom is in hospital with it too.
    • ImBroken
      ImBroken candice124

      Posted

      Yeah they have unfortunately, sorry to hear that I hope she feels better and gets out soon, do you find that being in hospital dosent help to much because they have no idea what food or drinks help and hurt? Good luck
  • NixKiwiWolf
    NixKiwiWolf ImBroken

    Posted

    I'm a 52 year old female and this sounds like me too. I don't have calcification (yet) but I do have random flare-ups which is difficult but I just push through. My work is pretty good but I can work at home if I have to. My doctors have no idea what caused my pancreatitis and can't decide if it's an acute episode that won't resolve or the beginning of chronic. It seems to affect people differently as well so what upsets one person is fine for another. It's really tough to deal with and you have my sympathy, especially as you're young. Try and live as normally as you can within your restrictions - I found yoga and acupuncture really helpful.

    • ImBroken
      ImBroken NixKiwiWolf

      Posted

      Thank you very much, I hope they do find out if yours is acute or not, at least you'll be able to plan ahead and bit and let your work know if you could just work from Home. Feel better xxx

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