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I have pancreas divisum, but doctors say they just don't want to perform the ercp?

I have seen many doctors in the past year. fI have pancreas divisum. I have had my gall bladder taken out because it was not emptying properly. That did not help. I am now seeing a GI doc in Atlanta, GA who has sent me to a doc who specializes in the pancreas/endoscopic ultrasound/ ERCP in Birmingham, AL and also for another opinion in Charleston, SC. Both doctors say there is not enough evidence of pancreastitis in my lab work and neither do I have an inflamed pancreas, so therefore they will not perform the ERCP to correct my pancreas divisum. I have had this debilitating pain for 16 months now. It was coming on (attack) and staying for a few days once a month. Now the attacks have become longer and I have to go to the ER for fluids and pain management. Sometimes an ER visit twice during one attack and sometimes they admit me due to being dehydrated from trying to fight it off on my own and that causes your kidneys to not work at there best which can be life threatening. This is getting expensive. I have doc bills after doc bills . I have had every test done known to doctors in the abdominal area. My attacks feel like someone is punching me in the stomach in waves to the left of my belly button and sometimes above the belly buton. I have severe vomiting, cold sweats. occasionally a headache. An almost scalding shower alleviates the pain slightly for about 10 minutes then it comes back on strong. I feel that the shower is just a distraction. My poor wife massages my back over and over trying to alleviate the pain. I would say that two weeks out of the month I feel good. There is a preliminary to the attacks. Right before they come on I wake up for a few days with pain and the pain goes away at about noon and then when the attack truly hits lasting 2-5 days and then the recovery is about 5 days of uncomfortable hurting with loose bowel movements and cramping. During the 2-5 days of hurting I can not work, sleep, get comfortable at all. It is debilitating. My vomit is yellow. After the episodes I have loose bowel movements in yellow color with fat in them. I own a business and have four children. What do I do? I have an appojntment with a pain mangement clinic on March 25th, but who wants to be on pain medicine forever. HELP!


This discussion is related to Help with Pancreas Divisum?.
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Avatar universal
I know this is a very old response, but it has came down to my husband making a trip to the Mayo clinic in Jacksonville. His GI doctor in Atlanta is sending him down there with a diagnosis of pancreas divisum with chronic abdominal pain with no pancreatitus. My husband has already been to UAB and Charleston. There was no report of spincter oddi. His GI doctor is hoping that someone will be sure enough to so in and insert a stent so that digestive juices will flow more easily. There is such a high risk of causing true pancreatitus that its kinda scary. I think he is willing to take the chance at this point. He has had a monthly attack for nineteen months now. He might as well have true pancreatitus.  Has anyone had to make this choice? Please help if you can.
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Avatar universal
I know this may sound like a frustrating question, but how can you be sure that it's divisum? Have they considered SOD (sphincter of Oddi dysfunction), and have you tried using some fairly heavy doses of antispasm meds, or calcium channel blockers? Docs will often not consider an ERCP (with manometry, hopefully) until all the 'drug routes' and other tests have been exhausted. Have they run you through an MRCP yet?

And although I know it may be of little help, are you following a low fat diet?
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