I’ve had about 5 ERCPs over the past 15 months or so and had very, very exacerbated symptoms/flares with all but one (the only one without many problems was just to inject Botox, rather than put in a stent/remove one that occluded/do sphicterotomies, etc.). In all the others my Amylase/Lipase creeped as high as the 3000’s and I spent weeks (an average of 2-3 weeks) in the hospital very sick and back on TPN. It’s also now being suggested by several doctors reviewing the ERCP notes, etc. that I didn’t even have chronic pancreatitis until they did the last one-- then they observed the inflammation in the tail, etc. So now they’re saying to stay away from ERCPs at nearly all costs, do EUS’s instead where it’s an option,and basically, that the doctors who did all the ERCPs caused this disease to become a chronic one in me. I’ve also never had any lasting benefit even from sphincterotomies.
While all this has been very angering and frustrating, I know it’s not the case for everyone, and that there are times when ERCPs are the needed procedure, despite the risks. I can’t see having another one myself (even though my SOD pressures were up and I had symptoms of acute pancreatitis after a cholescystectomy (gallbladder removal). I hope you get good medical advice and wish you and everyone having ERCPs all the best in avoiding problems.
I’m sorry to cause you any alarm, but I needed to report honestly what my experience has been, and this was at Johns Hopkins, supposedly one of the best. To answer a few of your other questions, I think it’s always a good idea to have a plan in place for the “what if,” because nothing under anesthesia is without risk. Having fought medical stuff through my degrees, I found if I addressed stuff with the University or Prof. ahead of time, I could work out an alternative testing situation, etc. Don’t be afraid to ask for what you need-- or even to consult a “disability” counselor at your school. They might have some suggestions for you, too.
I’m still struggling with daily pain-- some days it’s “better” compared to the past few years and then there are days when I really think I need to be headed to a hospital because the pain/not being able to eat gets pretty bad. (At least I’ve made it to a record “out of the hospital” number of months for the first time in years! That’s been so great, despite all the pain and stuff-- it used to be that I wasn’t home days to weeks without being readmitted.)
One other note: I’ve had many docs now say NOT to do the celiac block via ERCP or aortic, but through and EUS. It has a much lower risk level of upsetting anything pancreatic, they can see clearly what they’re doing, etc. Tertiary hospitals/clinics are the best place to have it done from what I’ve been told-- and to do it with GI folks, not pain management docs-- they mainly do the celiac and other blocks (alcohol, etc.) in cases of pancreatic cancer. Either way, the relief may be short lived, but at least there seems to be far less risk involved in the EUS celiac block.
Hugs and hope,