Does anybody have Pancreas Divisium?

Posted , 3 users are following.

I was just diagnosed today, and I'd like some input from anyone who has been diagnosed with this condition.

0 likes, 14 replies

Report / Delete

14 Replies

  • Posted

    Hi lindy

    i have pancreas divisium, apparently I was born with it,  and I have always had problems with my stomach, I didn't have a operation done I had half of my pancreas removed, and stomach,duedenum and bile duct!  And I still have been right with it for me the operation was a flop! 

    What is it you wanted to know? 

    Pippa

    Report / Delete Reply
  • Posted

    Hi Lindy 

    I too have Pancreas Divisum. I get ERCPs to open/dilate my ducts every other month. My pancreas specialist advised me my pancreas is still in good condition even though I have chronic pancreatitis due from PD. If the pancreas gets bad enough then they can replace it with a synthetic one. Treatment really depends on the condition of your pancreas but you’re going to need an ERCP to see if your ducts are too narrow. 

    Report / Delete Reply
  • Posted

    Thanks for the replies.  I don't have chronic pancreatitis, so I guess my pancreas is in good shape.  That operation sounds pretty radical.  I don't think that's something I would opt to do.  What about a MRCP as the next step before the ERCP, since that can cause a pancreatic attack and other side effects?  I guess this is more serious than I thought.  I'm not sure when I'm supposed to see my doctor.

    Report / Delete Reply
    • Posted

      Hi Lindy 

      I’m not sure what test you had done to diagnose your PD. Usually a MRCP is used to diagnose it. Then an ERCP is used to confirm diagnosis. I had never been diagnosed with “acute” pancreatitis but the PD has caused chronic pancreatitis which I found out through an ERCP (first time they biopsy to confirm CP). They usually do an ERCP for treatment with PD. I went through horrible abdominal pain, bloating, unintentional weight loss for over a year before the doctors could diagnose me. My blood work doesn’t show an attack so after numerous tests it was the MRCP that finally found the problem. I hope that makes sense. You won’t find too much information on Pancreas Divisum without chronic pancreatitis from the research I’ve found. 

      Report / Delete Reply
    • Posted

      The diagnosis was made with an abdominal CT scan with pancreas emphasis.  I know, I haven't been able to find out a lot of info either.  Usually, CP goes along with it from what I have read, and it predisposes you to AP. I really would want to get a MRCP before an ERCP.  The sound of that scares me.

      Report / Delete Reply
    • Posted

      I am in agreement you. The MRCP is the only noninvasive test to confirm diagnosis nowadays. I’ve had four ERCPs and they get easier every time. They don’t perform them until it’s treatment time because of the risks. I’ve been fortunate so far.
      Report / Delete Reply
    • Posted

      If I remember correctly, one of your ERCPs  caused an AP attack.  I don't know if you you remember me or not but several months ago we communicated back and forth quite a bit.  That was during the time that you were having a lot of trouble before you were diagnosed with CP.

      Report / Delete Reply
    • Posted

      Yes I believe we have communicated but I didn’t want to assume it. With my first ERCP I did have a slight pancreatitis attack. I haven’t had another attack with an ERCP since. I guess I say I’m fortunate because I had gone through a year of debilitating pain and after the first ERCP that attack wasn’t anything compared to what I had already been through. Since my blood work doesn’t show attacks, I have had them throughout my life. I’m going for another one in a couple weeks. Eventually the ERCP will only be needed for a tuneup once my ducts are wide enough. 
      Report / Delete Reply
    • Posted

      I'm glad you haven't had any more attacks and that the ERCPs are helping you.  I've had digestion problems all of my life but no pain like I had in July and a few times since.  Wonder what treatment the dr. is going to advise.  I'm waiting for a response from the nurse to see what the next step is.

      I sure wish more people would share their experiences with this condition

      Report / Delete Reply
    • Posted

      Hi Shortie79.  My GI won't see me until April, so I went ahead and made an apt. at Elkins Pancreas Center, as recommended by Dr. Perry, with Dr. Othman. He is a Dr. that someone on one of the pancreas forums referred me to.  That appt is March 14.   Do you have chronic abdominal pain and nausea?

      Report / Delete Reply
    • Posted

      I’m glad you have an appointment. My GI doctor didn’t do much for me after it was discovered what my diagnosis is. I asked to see the pancreas specialist because my GI thought my symptoms were more IBS related. I know my body and knew it wasn’t IBS. The first time I met with the pancreas specialist he told me he wanted an ERCP done to confirm diagnosis. He then explained ERCPS are also treatment methods once they see the pancreas and how it’s working. With our situation they usually put you on enzymes and perform ERCPs to widen the ducts if a stone isn’t the cause for the symptoms. They also biopsy too to confirm chronic pancreatitis. I still have constant abdominal pain and nausea but the pain level has decreased and I’m able to eat through the nausea (something I couldn’t do before). One of the GI doctors at the hospital advised me I was pretty much going to feel this for the rest of my life. They can treat as much as possible to control pain but they can’t get rid of it. I’ve also lost a lot of hair which is normal according to my doctor. The enzymes should help regrowing it. 
      Report / Delete Reply
    • Posted

      The crazy thing is that I haven't been diagnosed with CP, so I don't know if this new Dr. will put me on enzymes or not.  That's not very encouraging to hear that this is how it's going to be for the rest of your life.  Is it common for this to present itself so late in life?  I'm 64. Is it considered a disease, a condition or a condition?  Boy I have lost half the thickness of my hair!  I used to have nice healthy long locks. Another loss, I guess.

      Report / Delete Reply
    • Posted

      My doctor put me on enzymes prior to being officially diagnosed with chronic pancreatitis. It’s usually triggered if you’ve never had symptoms. Abdominal surgery or car accident, etc. will trigger the symptoms. It’s possible you’ve had symptoms all your life but the doctors never knew the cause. Throughout my life (I’m 38) I was having attacks but my blood didn’t show “pancreatitis” only my liver enzymes would rise. Then in 2014 I had an abdominal surgery and I was never the same. I think that’s what really triggered mine, but my intestines were adhered together prior to surgery. PD isn’t a disease, I don’t know what to call it. It’s actually rare, only 5% of the population have it. Since you’re born with it, it’s technical term is congenital abnormality. However, PD can cause chronic pancreatitis and that’s common for your age. It really depends on what the doctors see/biopsy. I honestly wouldn’t worry because PD causes a lot of pain. I’ve gotten used to it for the most part. 
      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up