Guest guest Posted July 27, 2003 Report Share Posted July 27, 2003 Hello Keri, I have had similar advice to yours re total pancreatectomy. My mother had pancreatitis but, for complicated reasons, my diagnosis did not come until recently. I have had attacks all my life of one kind or another. I am now awaiting the results of the genetic test but my specialist obviously believes I have HP. I am 57. I am about to go to France for three weeks. At first I felt so panicky that I wanted to have the op at once but I realise I need a little time to acclimatise to the idea of surgery. I also need to sort out my diet because in 1988 I was told I had coeliac disease and it seems that this might well have been incorrect as it is ulikely I have that as well as pancreatitis and the latter would explain all my symptoms. I'm now reintroducing gluten (which you can't have if you are coeliac) into my diet. My pancreatic specialist has not mentioned islet cell transplant but I have had only one consultation with him (having been referred to him by my gastro after CT scan chowed calcifications) and he has left me time to think things over. He probably did not think it appropriate for the reasons you give (possibility of abnormal cells) or because he thinks I am getting close to diabetes anyway. When I get home to Liverpool I am going to arrange another visit to the specialist as soon as poss to discuss all the options. I do wish you every success with your medical and surgical options. By the way, I have never once been hospitalised for CP apart from one ERCP in 1988 which, as now seems clear, was misinterpreted anyway! I have had no procedures carried out at all but, then, I didn't ever call a doctor out. I think that, because I had had attacks since childhood, which always went away of their own accord, I just thought it was " me " , some strange quirk of my body which I had to live through as well as I could. I had my ERCP after being referred by my GP to a gastro as an outpatient. My parents did call the doctor when I was a child but the GP always said it was " gastritis " . I don't think they knew much about hereditary pancreatitis in those days. Good luck and best wishes Keri. I know you're getting superb advice and I'm sure you will overcome this disease. Felicity Quote Link to comment Share on other sites More sharing options...
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