Hi

BP from Sacramento California asks this question in a recent email - something many who have had pancreatitis as long as he has often ask themselves.  If you have any thoughts on this please leave a post. 

In the meantime, thanks to BP for sharing your thoughts and concerns.

Regards and best of health to all

Jenny

FROM BP: 

I have had idiopathic chronic pancreatitis for more than twenty years and for twenty years prior I had occasional attacks of sharp pain that had been variously misdiagnosed, but was likely my pancreas.  Three months ago I had an attack which generated not only pain under the sternum, but also on the back right side of my rib cage which has never resolved.  I was unable to return to eating anything without taking enzymes.  It seems the pain on my rib cage is gradually increasing and often after eating even a nearly fat free meal with small portions I have pain on the front of the chest which will usually resolve by taking another enzyme capsule.

I had an MRI/MRCP dye contrast which shows a badly atrophied body and tail of the pancreas and two pseudo cysts (fluid)approximately 3/4 inch diameter and about 1 and 1/4 inch long.  They both touch the duct which appears totally normal.  I had the gall bladder removed 2 1/2 years ago because I was passing stones.  My pancreas is apparently not producing much of anything to assist in digestion and is only giving me pain.

I am 66 years old, am not diabetic yet, have aggressive coronary artery disease, but at the moment no angina and take no medications for the heart.

I have investigated the possibility of a total pancreatectomy with islet cell transplant in the liver at the University of Cincinnati Pancreas Disease Center.  I am not sure I can get medicare or insurance to approve the procedure, but it looks like a possible way out of my pain without becoming diabetic.

What are the negative consequences of such a surgery?  Is it a possible solution to remedy the pain?  Another pancreas sufferer said that she was told a total pancreatectomy would result in phantom pancreas pain.  Is that true?  Thanks for taking my questions.

As most would know we strongly advocate asking questions of medical professionals if you are ever in doubt or unsure about the diagnosis process, what treatments are being considered for pancreatitis, etc.  We’ve had some recent feedback from LM who writes about recent experiences with her 13 year old daughter who has just had a first attack.  We’ll let LM tell the story:  

Hi i am so sorry your dad wasnt diagnosed properly you must be devastated and let down by the health profession.

My daughter who is only 13 had her first pancreatitis attack in September followed by being diagnosed with ulcerative colitis and is now on drugs to control colitis which can bring back pancreatitis! She has now had a second pancreatitis attack and the hospital she is under thought it was her just not “managing the pain” but we stuck together as a family and said it wasnt acceptable her pain and after 10 days they are now listening to us and her after implying “difficult family circumstances” is the problem! She had an ultrasound yesterday and is having an MRCP scan next week now and may go on pancreatic enzymes like you mentioned. Fingers crossed the health care havent messed up and let her pancreas get too bad as she is on tramadol for pain as i insisted and anti sickness drugs. Its been a trying time for the last 6 months in and out of hospitals with 2 recurring diseases running alongise so i know how you must of felt.

Reading your article has armed me with fresh ammunition to ask more questions for a meeting in 1 hours time with the consultant so thank you for that.

Take care

LM