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Diagnosis times.....

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nataliefranc
nataliefranc

Hello everyone hope your all having a relatively pain free day! Just wanted to ask how long people's diagnosis times were for chronic pancreatitis? I've had 7 years of upper left abdo problems now, seen at least 20 different GP's 4 gastro specialists, had endoscopy, tons and tons of bloods, colonoscopy, ct with contrast, ultra sounds, detaild MRI of pancreas with contrast, stool samples....not one thing has shown anything at all, not even slightly raised blood levels. I would love to put it all to the background of my mind and believe it is just ibs (I get no vomiting or runny, oily stools, mainly constipated) but in back of my mind the worry is always there as I have read it can take 10 years plus for it to show on any scans sometimes. I used to drink heavily in 20's I'm now 33 and have cut down lots over last couple of years when I noticed the pain is sometimes worse the day after alcohol. As I've continued to drink for the majority of having these pains surely something would show up? Just wondered if anyone else had completely clear tests for this long and it did turn out to be the dreaded chronic pancreatitis?

Thanks all X

0 likes, 3 replies

3 Replies

  • NatieK21
    NatieK21 nataliefranc

    Posted

    Great question. I had a terrible flare up along wi my liver three years ago and I was in the hospital for over a week. Miserable. I have my levels checked every 6 months. (Liver enzymes mainly. If those are up, that usually means my pamcreas is also in trouble) Strange that your GASTRO cannot help further. In fact, I've had upper left quadrant pain again lately so I started drinking water like crazy. I get paranoid now so I'm constantly checking my skin/eye colors to make sure I'm not jaundiced and have to check my stools. (When I was at my sickest, my bowel movements were either very dark or clay colored. My urine was so dark brown that it looked like mud, (sorry to be so graphic, but it's just the unfortunate truth) I hope you get things worked out. A flare up can get pretty scary!
    • nataliefranc
      nataliefranc NatieK21

      Posted

      So sorry to hear you have had these troubles. Luckily my stools always dark-walnut brown and urine normal colour. Just so worrying that people go so long without diagnosis! I also check my eyes for yellow!! Maybe I need to trust my gastro they have done every test they can really. It's just my worry and Google that makes me paranoid! X
  • Poptop
    Poptop nataliefranc

    Posted

    I was only diagnosed with chronic pancreatitis 2 1/2 months ago after an acute attack.  Diagnosis was verified with blood work and an MRCP showing a small area of scarring and a few small calcifications.  I was warned about "coke" color urine but have not had that.  I am also "fortunate" enough to have been diagnosed with IBS 30 years ago.  That was a long time being diagnosed because there is no test for it;  diagnosis is made by symptoms.  The only time I have vomiting is if the abdominal pain is acute, severe cramping, an explosion (sorry but only way to describe it) of stool and then relief.  Unfortunately, then follows the rollercoater of constipation then an attack, repeat, repeat.  Drinking a lot of water is important as well as a bland diet for a couple of weeks following.  Also, a product like Metamucil or Benefiber helps.  I was prescribed Levsin when the pain/cramps start.  It does not stop the attack but makes it much quicker and repeat events much less.  Alcohol does dehydrate you and could be the kick off point for you. 

    Pancreatitis, for me, was acute pain under the left ribs radiating to the back.  IBS is more generalized lower abdominal pain. 

    Hope this helps.  Sending you good thoughts.

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