ERCP's for me for life is my only fix

[Guest guest]

Hi there,

I got back from MD , Houston a couple of weeks ago, and

after they had to put another stent in my pancreatic duct and

perform another sphincterotomy after I had an attack whilst being

seen about a clinical study for my tumours elsewhere.

When I got back home, I had another attack and when my GI did

another ERCP, found that the stent had gotten blocked. I asked if

someone could just do a Whipple and fix it once and for all because

my duct keeps closing and is causing me all my problems, but he kept

insisting that many people still experience pain after this surgery

and it isn't always the right answer for a person. After a while it

dawned on my tired mind that it wasn't the right thing to do for me.

The surgeon that tried to do it last time (but stopped when he found

multiple tumours in my lower abdomen) had spoken to him and told him

that even if they did do a Whipple on me, I would still experience

the same pain after the surgery. My only option is for me to have

stents put in and out when my duct opens up and closes again, so

basically I will be having an ERCP every 2 weeks to 2 months until

they come up with a magical solution.

I have 3 different medical problems and have seen a few doctors for

second opinions about these individual problems and my GI advised me

that if I keep seeking other opinions, he will fire me as a patient.

I can understand part of what he told me, that I have doctors

telling me different things and don't know who to believe, but he

himself referred me to one of them for a second opinion who in turn

referred me to another about something else that was found, but I

think what did it was when I was down at MD for my tumours

and I had the pancreatitis attack there and asked a GI to fix the

problem so I wouldn't have to be hospitalised for a further week

when I got back home...thought I was just getting myself out of pain

and doing it all while I was already away from home at a medical

facility qualified to do it.

What really upset me was his nurse who, when asked to book an ERCP

for me, said, as if I wasn't there... " and is she going to cancel

this procedure like she did the last one? she does nothing but waste

my time when she cancels what I set up " . This had me in tears...I

only cancelled the ERCP that they had set up before I knew what was

happening down at Texas and I didn't need it anymore. I gave her a

weeks notice and all she did was make a phone call to book it and

another call to unbook it.

I don't know whether to let it ride and just be polite and not so

friendly anymore or say something and probably get myself in more

hot water with her...

[Guest guest]

Becky,

I saw a Dr Lynch. I also have Familial Adenomatous

Polyposis, and a polyp was found in my pancreatic duct. He is very

conversant in this hereditary disease and arranged for a Dr Kow to

perform the ERCP for me. I have a friend who is a nurse on the

Pancreatic surgical floor, P5 and she swears by a Dr , saying

he is one of the best Pancreatic surgeons in the country.