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Pancreatitus

Posted , 6 users are following.

leigh77544
leigh77544

I had acute pancreatitus a couple of years ago spending 8 weeks in hospital, 3 of these in ICU. 12 days of which i was on life support due to everything starting to shut down. My question is will i have pancreatitus for the rest of my life as the pain is starting all over again.

1 like, 9 replies

9 Replies

  • Reefsider
    Reefsider leigh77544

    Posted

    Sorry you had to go through all that.  Are you being monitored?  Are you eating a low-fat diet and not consuming alcohol or smoking?  These are the steps one usually takes to manage pancreatitits. Eating smaller meals 4-6 times a day is easier on the pancreas rather than 3 larger meals and digestive enzymes also help.

    If you're following attack protocol you should try cutting out food altogether for a couple of days, sip broth and keep your fluids up.  Resting the pancreas can help prevent an attack, however that's not always possible unfortunately. 

    Report in to your doctor asap you want to prevent a repeat of your previous experience.  Good luck.

  • Shortie79
    Shortie79 leigh77544

    Posted

    One attack can lead to chronic pancreatitis however the only way to know if you actually have chronic is to see your doctor. You need specific tests for the diagnosis and only a GI who specializes in the pancreas or a pancreas specialist should be ordering the tests. As stated in the other comment by Reefsider there’s ways to manage chronic if you have it. 
  • Iamhungry
    Iamhungry leigh77544

    Posted

    I have acute pancreatitis, hit me Jan 2018, in the ICU for a week, hospitalized for 2 months due to electrolytes crashing as a result of the pancreatitis.  Fluid built up around my pancreas, I am a male and it looked like I was pregnant with twins, that is how much fluid built up.The doctors sent me home on an NJ tube which goes through my nose to my small intestine to bypass the pancreas and let it rest. It is June and I am still not allowed to eat or drink anything by mouth, it all has to go through this tube.  I am on antibiotics that go through an IV in my arm, due to the necrosis of the pancreas, the dead tissue was infected. I no longer have pain in my pancreas but the doctors still won't let me eat or drink anything by mouth and that is the hardest part of all of this.

    The doctors want to drain the fluid that is left but it is hardened so i have to wait until it becomes a liquid fluid substance and the doctor is on vacation so they can't see me until July...then they said maybe in August I could start to eat food and drink water through my mouth again.  This is the worst sickness ever and the doctors know very little about it. Someone needs to start researching pancreatitis and develop cures, because this course of treatment (not eating for 8 months) is ridiculous.

    • kay82451
      kay82451 Iamhungry

      Posted

      Wow.  I had acute necrotizing pancreatitis as well. 3.5 weeks in ICU. 3 weeks off and on until all the necrosis was removed.  I had 3 different sets of stents.  

      I don’t understand why they are not removing the dead pancreas.  I was deathly ill until the 6th procedure when the last of the necrosis was removed. 

      I only have 50% if my pancreas left but feel like a new person. 

      Still have to be very careful about what I eat and staying hydrated.  

      I’m very perplexed why they are letting you suffer. I too looked pregnant and had sugar issues. 

      I sure hope you will get relief soon.  Are you going to a pancreatic institute??  It is imperative that you have a pancreatic Dr.  Not a GI Dr.  Most have no clue how to deal with the pancreas.  

      Keep me posted. 

    • Iamhungry
      Iamhungry kay82451

      Posted

      I am seeing a doctor in San Fran that specializes in kidney and pancreas transplants. The doc wants to put a stent into my stomach to drain the fluid from the cyst around my pancreas, but I have to wait until July since the doctor is on vacation. The docs aren't saying too much, it just seems like a waiting game for them. They said they won't be able to see the damage to the pancreas until the fluid is drained.

    • Shortie79
      Shortie79 Iamhungry

      Posted

      I go to a pancreas specialist at UCSF. I have to travel to see him because there’s no doctors in my area that specialize in the pancreas. I was born with two pancreatic ducts that never fused together which caused chronic pancreatitis. I have very narrow ducts and have to have ERCPs every other month. I have had a temporary stent placed as well. I asked why they’re temporary and was advised because they can cause infection and scaring. My stent has been removed and I have yet to need another one. I don’t know what doctor you’re seeing but if they’re at UCSF you will be in good hands. It took my other doctors over a year to diagnose me until I got to my pancreas specialist. He not only confirmed the Pancreas Divisum diagnosis but also diagnosed me with chronic pancreatitis after my first ERCP. Apparently I had been suffering attacks throughout my life but my blood work didn’t show anything. Good luck and I hope you feel better soon. 
    • kay82451
      kay82451 Iamhungry

      Posted

      They put stents in immediately to drain my cysts.  Your situation sounds a lot like mine. I don’t understand wth they are waiting for.  They could have had those cysts drained and had that dead pancreas removed by now.  They started removing dead pancreas within a month after I got out of ICU and the hospital.  Like I said it took 6 procedures to get it all out.  Once it was removed I started to feel better !!!
  • Reefsider
    Reefsider leigh77544

    Posted

    Years ago my doctor told me there's a reason why medicine is called a practice.  Our GP's and even specialists only practice what they've learnt, they improve on procedures perhaps but don't do the research.

    There are researchers out there now focused on the pancreas.  All over the world there are specialist pancreas centres in teaching hospitals, but you're right, not many doctors, relatively, choose to specialise.  It's rare to find a gastroenterologist who has dedicated him/herself to the extra years required to be proficient in the treatment of diseases of the pancreas on top of the years required to become a gastroenterologist. Most want a life and family and want to get on with their profession without the extra study I suppose, and we shouldn't blame them.

    Someone here posted recently questioning how we might make the pancreas sexier, so more want to study it.  I think he's right.  Given the number of pancreas centres that do research that I've found just by googling, what is needed is a superior marketing plan, perhaps an internationally united one, to encourage young graduates to realise the pancreas is worth studying.  

    In the meantime Leigh I hope you'll be taking nourishment by mouth soon, yours is a horrible situation.  Good luck.

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