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Worried it's becoming chronic

Posted , 6 users are following.

chelsey72022
chelsey72022

My first acute attack was in 2016 my lipase level was almost 17000. By the time I got to the er I was in shock.

I spent several days in the hospital and followed up with gi who ruled it as idiopathic. Us and ct were normal.

I started having pain in my sides anytime I'd touch alcohol however, because I'm a 28 year old female doctors were quick to dismiss this. The alcohol use was on very rare occasions.

Flash forward to June 4th of this year I had gone out with my soon to be sis in law for her bachelorette party and had a few drinks. Early the next morning I was being admitted again for acute pancreatitis. This time my lipase was at 600. They did a repeat ct which again was normal and kept me 2 days and then let me go.

I'm still having pain on my sides that sometimes almost feels like something is squeezing out through my ribs. I'm terrified this has become chronic and of course dr. Google always reports back to things like cancer and that's terrifying.

My only other symptom is stools that float but dont look pale, grey, or greasy.

I guess I'm just looking for other peoples experiences. At what point did you know your seemingly acute pancreatitis was now chronic?

1 like, 8 replies

8 Replies

  • kay82451
    kay82451 chelsey72022

    Posted

    If your Dr is not doing ERCP the be sure I’d see a Dr who specializes in the pancreas.  I had acute last year.  Spent 3.5 weeks in ICU where I almost lost my life due to lack of knowledge on the Drs part.  I was flown to MUSC in SC, they are a pancreatic institute.  6 procedures and they saved my life.  Malnutrition. I still have pain but they said it will remain.  I lost  50% of my pancreas. 

    Keep us posted. 

    • chelsey72022
      chelsey72022 kay82451

      Posted

      Oh my goodness I'm happy to hear you're somewhat ok. How have you been doing since then? I didnt realize they would take part of your pancreas due to acute. Are you now chronic?

    • kay82451
      kay82451 chelsey72022

      Posted

      I’m very lucky to be alive.  I had acute necrotizing pancreatitis which isnt very common.  I am not chronic and pray to never be.  Another attack could take my life.  I am living a very clean life. As my Dr said anything could happen at any time acute or chronic but he said I could also never have another attack.  

      It took 6 very long procedures over 3 months to get all the dead pancreas out.  I was so very sick.  Had a temp of over 101 everyday until it all got removed.  My Drs were amazing. They said they really had not seen anything like it in there 30+ yrs.  it was a learning curve for them.  But they saved my life. 

      Thank you and I so hope you get the answers you need.  

      Do not drink!!!  At all !!!!

      Keep me posted.  

  • Psychdoc
    Psychdoc chelsey72022

    Posted

    I hope that you are feeling better. I suggest no alcohol use as you seem to have a flare up w by en you drink- even with a teeny tiny bit of alcohol. Find a good gastroenterologist who specializes in the pancreas. Also, find a pain doctor who understands the pain associated with pancreatitis. I would also avoud oily and spicy foods. If you have a flare, be aware of what you ate, drank or did prior to your attack. Maybe see a therapist for support. God bless you and hang in there! 😏

    • chelsey72022
      chelsey72022 Psychdoc

      Posted

      Hi psychdoc

      Thank you for your kind words and oh yes I have completely given up alcohol and have been doing a very low fat diet with absolutely no red meat or oily, greasy foods. I plan on finding a good gi ahen I get back home as I'm currently in another state from my brothers wedding.

      I am just so over the pain that is still there and how any time I read anything besides these forums it talks about PC which of course gives me a mini heart attack.

      I just feel like looking back it's always been there and am wondering how others chronic cases presented?

  • Reefsider
    Reefsider chelsey72022

    Posted

    Chelsey it's not just a matter of finding a good gi when you get back home it's MOST important that you find a gi who specialises in the pancreas.  GP's and even most gastroenterologists do not focus on the pancreas during their training.  They know very little about it.  It takes years more study once they become gastroenterologists to learn about the pancreas.  You need to find a gastroenterologist who specialises in the pancreas.

    Don't make do with comments from your GP like " oh i know a really good gi I can connect you with"  it's not enough, insist on a referral to a pancreas specialist or contact your local teaching hospital and ask there yourself.  Pancreas specialists are a pretty rare breed you may have to search for one.  Good luck.

    • chelsey72022
      chelsey72022 Reefsider

      Posted

      Thank you, I'm sure I'll he using military doctors but the hospital is a teaching hospital so hopefully they can offer something

  • cynthia29421
    cynthia29421 chelsey72022

    Posted

    Chelsey, please, do not touch any alcohol. Each time you drink it will cause a flair. I have had pancreatitis for 10 years. No alcohol, low fat. Fruits, veggies, fish, grains. Tumeric curcumin capsules, carrot juice, lemon water, light diet. You will feel pain in chest, right shoulder, between shoulder blades, abdomen, right back ribs into chest. Youwill also have pressure to go, but cant and urine will get dark. Lipase does not always show elevated with chronic pancreatitis. Hard todiagnose unless itgets accute and then you feel like you are dying. Thats when you have togo to emergency room. I take advil for inflammation as opiates make itworse!  Liquid diet for 2 days then low fat soft foods with advil. You need to heal and alcohol will kill the pancreas.
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