SOD and pancreatitis

[Guest guest]

Hi all, I hope everyone had a fairly pain free week. I myself did not. I had

an acute attack Tuesday, which is still present.

I would like to know from all you who have what I have, SOD and pancreatitis, as

to the damage to the pancreas from SOD. I have had 6 ERCP's with stent

placements for the SOD. Each time I get acute pancreatitis and have to be

hospitalized. I feel as though I am in a catch 22. In August of last year, I

had a ductoplasty, etc. to permanently open my pancreatic duct to " cure " the

SOD. No such luck. At three weeks postop I had the same pain again. Now, my

surgeon was a pancreatic specialist who used to work with Dr. Sutherland in

Minnesota. When I first went to see her she spent 1 1/2 hours with my husband

and me as to what procedure she should do. I have a loop in my pancreatic duct.

She went back and forth between the ductoplasty and a Whipple. Finally, she

said she talked to many other physicians and they suggested the ductoplasty. It

was a 5 hours surgery with a week stay in the hospital. When I went back to see

her I told her I had the same pain back again. She blew it off saying that it

was " stress and anxiety " and there was nothing else she could do for me. Now,

being a pancreatic specialist she should have known that my pressures would

continue to " build up " in my pancreatic loop. I asked her if the pain I was

experiencing was pancreatitis and she said " No. " (At an ERCP in May, three

months prior to the surgery, my specialist at IUPUI diagnosed chronic

pancreatitis. I said how can you say that and she said because your amylase and

lipase aren't elevated!!!!!!!! A pancreatic specialist???? I had another ERCP

in November and my GI doc here (Ohio) told me that he knew my pressures were up

again in the loop. (I had my previous ERCP's with stenting at IUPUI in

Indianapolis (the world renowned specialists on SOD).

I guess what I am trying to say (I just wanted to give some background) is that

SOD and pancreatitis are two separate diseases and I know that SOD can cause

more damage to the pancreas. Therefore, if my pressures keep going up what is

that doing to my pancreas? I went back to IUPUI and had a consult with Dr.

Fogel and he said that I have the loop, chronic pancreatitis, scarring of my

whole pancreas, and tortuous branches throughout my pancreas. He didn't want to

do anymore ERCP's because of the damage to the pancreas!!! What does one do???

I am sorry I went on and on, but I would like advice, suggests, etc. from anyone

who knows about SOD and pancreatitis. I know that there are a lot of us out

there. Any and all information would be greatly appreciated. If you want

anymore information from me just e-mail me directly at nancy@....

Thank you all. Blessings to everyone. Hope we all have a pain free week!!

Sincerely,

Templin (Ohio).