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UCLA

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Joniece
Joniece

I was told I would find out this week what time my appointment is on the 9th with UCLA this is my first or would be my first appointment. Has anyone gone to UCLA's Agi Hirshberg Center for Pancreatic Disease? I was officially diagnosed by my gastro specialist back 4 months ago. I was told that all that can be done is pain management. That chronic pancreatitis is not reversible and again managing the pain is now the goal. according to UCLA they have a whole team of folks dedicated to pancreas tick disease and they have multiple procedures that focus on the disease itself and the recovery of it all the way up to including complete removal of the pancreas with a transplant. why did not any of my doctors or my pain management doctor tell me about this? If it weren't too UCLA I would be very concerned about the legitimacy. if anyone has any information I really appreciate

0 likes, 3 replies

3 Replies

  • John-1
    John-1 Joniece

    Posted

    You said "pancreas tick disease" - do you have some type of Pancreatitis caused by a tick-borne disease? If so, can you explain some more about this?

    • Joniece
      Joniece John-1

      Posted

      oh my goodness that was a typo. I just re-read that. No I simply have chronic pancreatitis. thank you. Do you know anything about the UCLA program?

  • Reefsider
    Reefsider Joniece

    Posted

    I've not been to UCLA however I'm sure they will run their own tests to understand your specific Chronic Pancreatitis given you say they are pancreas specialists.

    Having said that, and so you don't panic, I'll tell you my story. I was diagnosed with Chronic Pancreatitis nearly 4 years ago. I'd not had obvious acute attacks prior to diagnosis however a CT showed calcifications and I had a follow up endoscopy when I was referred to the pancreatitis specialty area at one of our top hospitals which confirmed my status.

    You don't mention whether you were told to modify your diet and stop taking alcohol. We have to adopt a low fat diet, and should never consume alcohol, ever. Smoking is also a no no for us, the pancreas hates it. So they are the first steps and very necessary ones. You may need digestive enzymes like Creon which help with digestion. For me they have been a miracle. Pain is usually either reduced or eliminated when these steps are adopted. If not there are pain management options which I'm sure will be suggested. For the most part we are responsible for our own day to day management so the lifestyle changes are down to you.

    Talking about transplants is pretty extreme at this point, my doc's have never mentioned that option and in fact keep telling me that if I continue the way I'm going I will probably live to an old age. Obviously things can pop up that might require more intrusive treatments down the track but for now my life is as good as it can be.

    I hope someone has more specific info re their experience at UCLA for you but if not don't panic. Good luck

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