Re: ERCP/MRCP

[Guest guest]

Hi Penny,

When my hep first told me that he wanted to do another ERCP, I

refused, and told him that there was no way I would swallow the tube

again. That was when he sent me for the MRCP, which (from three

different angles and with and without contrast) provided a definitive

diagnosis. When I told him that I didn't want to have the ERCP again

because I am allergic to the dyes, he said it could be done without

dyes. Until someone on this forum shares with me how exactly they

were able to get a GI to perform the procedure without dyes, I just

can't bring myself to go.

I know they want to look for cancer by doing a brush test, but my CA19

was negative, and I am at a loss.

Now I have just read about your experience, and it just re-affirms

that we sometimes know our own bodies and limits better than our

physicians, no matter how talented. I have no problem with having

another biopsy, because my last one was sooooo long ago, that at least

we will learn what stage I am in, but I can't seem to bring myself to

let them put the dye into me again.

Okay, with everyone providing such interesting feedback about their

experiences, I am just going to have to make him tell me that it is

really a life or death kind of thing to do the ERCP, and make sure the

GI can do it without dyes.

Thanks so much for your story and your ear.

[Guest guest]

Thank you for sharing your story - wow, how devastating. And many, many thanks for sharing your hours of research work with all of us.

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998)

ERCP/MRCP

Count me as another person with disastrous ERCP results.

The first one caused pancreatitis and resulted in a 12 day hospital stay -- 8 days NPO.

My doctor 'thought" he saw a dominant stricture and insisted that he do another ERCP several weeks later. With the threat of pancreatitis, he brought in an expert from out of town to work with him. They were giddy with joy over avoiding pancreatitis during the second ERCP. NO dominant stricture was found. Hindsight leads me to believe that poking around for hours during the first ERCP caused enough edema and damage to appear to be a stricture.

What they did not know, was that a nosocomial infection was seeded in my liver during the ERCP. Low grade fevers caused the gastroenterologist to assume that my gallbladder needed to be removed and, two days before the surgery my temperature went from normal to 104.9F in 35 minutes. It was a life-threatening infection that caused abscesses in my liver and on it -- it also eroded my common bile duct. It took 2 transplant surgeons over seven hours to piece me back together and attempt to save my life. That was April 8, 1997 -- but who's counting? It took years of repeat hospitalizations to regain part of my life and I am still handicapped (bilateral vestibular loss) due to the use of gentamicin to save my life. I just got my new handicapped hangtag today.

Since then I have not allowed another ERCP, but have undergone several other procedures including MRCPs. When my gastroenterologist wanted to do another ERCP "to look around," it was the day we parted company. The risk vs. benefit for me dictated my action. Clearly, I am a person who should not and will not have another ERCP. Others of you are blessed with easy recoveries from the procedure. You are lucky!

Penny

P.S. my new GI doctor has chosen not to do ERCPs because she feels she would not do enough to maintain proficiency

[Guest guest]

Hi Penny I had an ercp my first one and got acute pancreatitus because of it. I was in the hospital for almost 2 weeks it was horrible I was in liver faluire at the time but no one talked to me about that. I am now on the waiting list that happened in 2001 and now they put me on the list in 2008 its been a long road but I do not like ercps I had 2 after that then now I demand other ways other then ercps they scare me

psc 2001

Count me as another person with disastrous ERCP results.

The first one caused pancreatitis and resulted in a 12 day hospital stay -- 8 days NPO.

My doctor 'thought " he saw a dominant stricture and insisted that he do another ERCP several weeks later. With the threat of pancreatitis, he brought in an expert from out of town to work with him. They were giddy with joy over avoiding pancreatitis during the second ERCP. NO dominant stricture was found. Hindsight leads me to believe that poking around for hours during the first ERCP caused enough edema and damage to appear to be a stricture.

What they did not know, was that a nosocomial infection was seeded in my liver during the ERCP. Low grade fevers caused the gastroenterologist to assume that my gallbladder needed to be removed and, two days before the surgery my temperature went from normal to 104.9F in 35 minutes. It was a life-threatening infection that caused abscesses in my liver and on it -- it also eroded my common bile duct. It took 2 transplant surgeons over seven hours to piece me back together and attempt to save my life. That was April 8, 1997 -- but who's counting? It took years of repeat hospitalizations to regain part of my life and I am still handicapped (bilateral vestibular loss) due to the use of gentamicin to save my life. I just got my new handicapped hangtag today.

Since then I have not allowed another ERCP, but have undergone several other procedures including MRCPs. When my gastroenterologist wanted to do another ERCP " to look around, " it was the day we parted company. The risk vs. benefit for me dictated my action. Clearly, I am a person who should not and will not have another ERCP. Others of you are blessed with easy recoveries from the procedure. You are lucky!

Penny

P.S. my new GI doctor has chosen not to do ERCPs because she feels she would not do enough to maintain proficiency