Does anybody have Pancreas Divisium?

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. 

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.

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.

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.

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. 

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

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?

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. 

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.

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.