Risks with ERCP?

Pancreatitis
#1

Hey to everyone,
First off i just want to appologise for not keeping in touch with anyone lately, my excuse is that i am in university and have been very sick so it has been a real struggle the past few weeks.

I am writing to everyone who has had an ercp to check out what is going on in their pancreas, possibly had stents put in and possibly had obstructions removed. I am a little concerned about having this procedure done. I had one 3 years ago and did not have a problem, but my pancreatitis was not as bad then. This time i have the appointment booked for monday oct 15th, and i have a major exam worth 50% of my final grade on wednesday oct 17th… I am just writing to see if ANYONE has any advice. Should I put a plan in place so that my family can contact my professor should something happen to me? Or is it very rare that a pancreatic attack is induced from ERCP.

ANY Advice would be really really really appreciated right now.

Thanks sooo much
Stephi

PS- if anyone replies, I would like to hear how you are doing in the reply-- hope people are not in too much pain these days!

#2

Hi, Stephi:

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,

Lisa

#3

I’m doing ok, I havn’t been in the hospital since Aug, other than that though I’ve just been kinda down because of it being 1 year since my mom passed and alot of stuff reminds me about it.
Well I never had a flare up after an ERCP though I did wake up during the middle of it, but I’ve had lots of them and it only happened the 1 time because the local hospital did a lousy job with my I.V. before they sent me to the hospital that did the ERCP. You may want to see if they will let you have a few more days just in case but I don’t really think you will have a problem. Hope everything goes ok.

#4

I have not had an ERCP for pancreas, only for CBD stones and sphincterotomy. I, unfortunately, had my bowel perforated as a result and when my GI mentioned another ERCP, I cringed. He DID reassure me that he did not feel that I was at any greater risk for perf with the ERCP he plans on doing (possible stent placement and celiac plexus block) but he was fairly certain that I would have an exacerbation of the pancreatitis. That having been said, I would encourage you to seek any treatment that will help with longterm goals. Does having an attack post ERCP suck? Yeah, you bet. But what is the long term benefit? I, like you, need to weigh the benefits and risks. At 40, I want a quality of life. Pain is not part of that quality in my opinion.

I hope others have some insight for you and wish you the best of luck! Keep studying hard and I will say a prayer for you for next week.

Teresa

#5

I am posting this message in regard to ERCP. My advice is DO NOT have ERCP procedure! I advise this based upon my experience, as well as many others who have posted their experience on Careplace. Go to my profile / story and you will see why I do not recommend ERCP and please pay very close attention to the following statistics: Just the differences in the risk % being so far apart (1% - 20% risk in ERCP- induced pancreatitis) should raise a gigantic red flag AND then factor in the damage being done to your pancreas during this acute and very dangerous phase of pancreatitis.

The deal is they really don’t know what else to do because there are no other tests out there that can see the pancreas as well as the ERCP (other than major abdominal surgery). MRCP, however is a more recent procedure that my previous GI dr. actually admitted to me that will probably replace the ERCP because it is not as invasive. Another less invasive procedure rather than the ERCP is the EUS. One very important question to ask is “What can be gained with ERCP”? as in, “Can this CURE or even HELP” your pancreas"? I know that there are instances in which one or all of the ducts (pancreatic, common bile duct) can become obstructed by stones or sludge but stents, sphincterotomies, etc. seem only to be a temporary fix. I also have not seen one single posting on Careplace that pancreatitis was CURED or HELPED with ERCP. I’ve even compared myself to a guinea pig in regard to these procedures because these guys really just don’t know what else to do for us and it would be a rare dr to admit that they are doing this because there is nothing else they know to do. The bottom line here is that far too little money, time, etc. has been given for research of pancreatitis.

In closing, let me say that I do not feel as bleak as my message may appear above and that I really do think that we are on the very cusp of something big, as in finding a cure and at the very least, alleviating some of the horrible pain we have all experienced and unfortunately continue to experience. This is why I will be travelling to Minneapolis next week to meet Dr. Sutherland to discuss total pancreatectomy w/islet cell transplantation.

Best wishes & Peace to You,

Sincerely,

Grace

#6

Hi Steph,
Sorry to hear you are still hurting. Regarding the ERCP-my daughter had a flare up after every one. She was able to leave the hospital after a couple days but it still affected her. I would recommend you put off the test till the following week if you can, so at least your mind will be clear. You may still feel some effects from the anesthesia and you don’t want to take such an important test so soon.
I know you have gone through alot and I hope this test helps-my daughter had the MRCP’s done prior to ERCP each time-that test is just a long cat scan with dye injected to show any blockage. Each time she had it done it did show blockage so we moved forward with ERCP. You may want to try that first-that never bothered her.
Each time they go into or around the pancreas they do have to go through scar tissue and that also causes pain. It can be such a horrendous circle of trial and error, Steph. I only wish you pain free and please let someone come up with a cure or magic pill for this horrible disease. Good luck.
Terri

#7

Thank you to all of you who replied so soon, i just got back from being in the hospital overnight, had a pretty bad (yet short) attack, they gave me morphine under my skin rather than thru an iv and it took the pain away, i cant even believe it. i am sitting here in such minimal pain right now.

About the ercp, i have been waiting for it for a long time and it is to see if i am going to need surgery. my surgeon said that he thinks i may need a whipple but he might try to put stents in during the ercp- he says that the stents have come a long way in the last couple years so they are not causing people as many problems. I also talked to my prof and he said that the only thing he can do for me is let me write a 100% final exam. I really need to have this ercp done to see exactly what is going on inside, i appreciate all the advice but i guess i will have to take a gamble on monday and know that at the very least i wont fail the course because of missing an exam b/c i can write a 100% final if i have to miss it and just hope that i dont have to miss it.

Such a shitty situation, my parents really didnt want me to study this semester because of how sick i am, they wouldnt even come to the hospital last night to see me because they didnt want me living away at school and wouldnt drive to the hospital near campus… i am not impressed… but part of me understands that i am the one who said i could undertake all this pressure.

Rescheduling the ercp is not an option… i wont be able to be booked for another one for a few months, but i do appreciate the advice and i am now aware that especially now i am at risk of a flare up b/c i am practically in one right now.

Take care and talk soon
Steph

#8

Hi,

I have had 5 ERCPs this year with multiple stents. In all honesty and ERCP can cause a flare up. My doctor said 1 in 1000 will end up in the hospital. Fortunately I have a doctor that does a lot of these and knows what he is doing. I did not have any of that happen. The worst part for me was the difficulty eating. And being very tired all the time. After the stent was removed I started feeling better almost immediately.

Do you have a doctor that specializes in the pnacreas? I think that would be your best bet.

I’ll be thinking and praying for you.

God Bless and Keep the Faith,
Vonnie

#9

I have had 3 ERCPs. With each one I had massive, huge, long lasting flare ups. It takes a good month until I can stop screaming from pain. The docs don’t seem to believe that it could flare me up that bad.

I have read somewhere there are alternative ways to get the same info. I’m sure someone here probably knows what I mean or you could google it.
I guess it depends on what potential good could come from the procedure. I already knew I had no structural abnormalities so it was of little use vs the possibility of a huge flare up.

My recommendation would be to make sure you hash out the details about your aftercare. I felt “dumped” afterward and no one seemed to want to step up to the plate to help me.

#10

The risk with an ERCP is that you can get an accute attack of pancratitis again. I would suggest that you either back it up, if you possibly can, or discuss with your professor to get an incomplete theis semester, they can do this, and should if you are sick, and you can make up the work within the next year. If you approach the disabled resource center at your college, any college has one, theyt will go to extra bat for you. Anyone that has a chronic il;lness still has the right to an education, and the school will work with you, and the prorfessors have to. If you don’t want to do that, hopefully your professor will be understanding. If you breath on the pancreas it could set you up for an attack. My daughter has gotten accute with each ERCP she has gotten, but she is younng, 16, so that may be a contributing factor. Sorry if this scares you, but I want you to be realistic. Good luck.
Jill

#11

Pippy:

I just want to thank you for your response to the post who is questioning ERCP. I have tried to warn others of ERCP on Careplace and I’ve only had one person agree that ERCP is dangerous. I have said over and over and over again that these doc’s do not know what else to do so they just keep repeating ERCP again & again, worsening the damage to the pancreas. I saw Dr. David Sutherland in Minneapolis last week in regard to his tp w/ict (which I am contemplating) and I told him that a doc here (where I live) wants to do another ERCP to assess the damage to my pancreas and Dr. Sutherland told me to run the other way from that doc just as fast as I can because the ERCP would only contribute to the damage I’ve already sustained and possibly even kill me in the process (see below). I also questioned the statistic that only 1% get acute pancreatitis following ERCP and he stated the % is a heck of a lot higher than that.

So, I just wanted to thank you very much for your ERCP knowledge. I wish I had known the dangers before I had my ERCP. (It really did come very, very close to killing me).

Thanks again,
Grace

#12

I was probably the one who agreed that ercps are dangerous because I got my original pancreatitis from an ercp. In the last four years I have had two more at IU Med Center, but only the first on did any good. I won’t have another one unless someone can convince me that it will help. I’ve not been doing well this week. Had to go to the ER for pain on Thursday.

This was the first time that I ever had to do this. The only other time that I had to go to the er was for vomiting that would not stop. It was scary when the er doctor came back with my blood test results and acted surprised that my amylase and lipase were normal. I had told him that I had chronic pancreatitis, but he didn’t know that when you are chronic your amylase and lipase counts can be normal when you are having an attack.

I’d read about other people running into this kind of ignorance at the hospital, but I thought it was weird to be the one to be telling the nurse and doctor about my illness. How do I get some kind of protocol to take with me to the er if and when I have to go again? I know I’ve read about some people having to do this, but I’m not sure what to tell my gi to write in it. Thanks for your help and I hope that Lisa is out of the hospital and is doing better. Thanks everyone for being there to talk to when we feel bad.

Take care everyone!
EllenC

#13

Yeah, join my world. I also had an ERCP almost 6 years ago now which caused my pancreatitis. It amazes me how many have had ERCP, numerous stents, etc. over and over again and over and over it causes pancreatitis. I know that to have chronic pancreatitis does not mean we are all the same and we need to be treated on a patient-to-patient basis, i.e. common bile duct & pancreatic ductal obstructions, pseudocysts, dilated common bile ducts, etc. I think the biggest problem of all, though, is our horrible treatment from doctors, other health personnel and hospitals and none of them are willing to do anything about it. This is exactly why my last post was in regard to our health care system. I have had to go to the E.R. X 3 over the last year and I now have my family doctor’s card attached to the back of my drivers license and just as soon as they start asking all of their questions, I hand it to them and tell them to call her. Most try to ignore me but since I won’t answer any questions, they call and she INSTRUCTS them to start hydration NOW, start the pain meds and get me into a room. Guess what, it works! DO NOT BOTHER WITH A WRITTEN NOTE, THEY WILL IGNORE IT.

Anyway, just thought I would run this by you. There is an awful lot of idiocy in the health care world and apparently it’s up to us to educate ourselves, as well as THEM. It also would be nice to get a little help from the National Pancreas Foundation, don’t you think?

I hope for a pain free evening for all of you. Take care & God’s Peace,

Grace