I’ve been told that I need an ERCP soon. Don’t know quite what to expect except a generic few pages given to me by my Gastro. She’s good, I guess but would rather rely on people that have been through it for answers. What should I ask before this procedure? How complicated is this? Anyone have a bad experience? Fairly new to all the info I’ve researched but am wanting to know as much as possible before the procedure. Thanks and I hope everyone has a happy, pain free day or 2, or 3…
I have had one ERCP. Don’t remember anything about the procedure, I was knocked OUT! BUT, I did have a acute attack from the procedure and was hospitalized for 2 days. I have had worse attacks and not admitted, I think this time they just wanted to cover the Drs. butt…LOL.Seriously, it wasn’t so bad, it was worth it to me to get a definite diagnosis.
Cindy in KY
Hi there. I’m 43 and got sick about 20 months ago but wasn’t easily diagnosed and don’t drink, worked out, competed athletically, ate right… None of that stopped the chronic pancreatitis that started after my gallbladder failed and was removed.
Over the past 14 months I’ve had 6 ERCPs at Johns Hopkins. After each one, some were for stents, balloons, Botox, or sphincterotomies-- I got REALLY sick. I went in sick w/pancreatitis and all that comes with it, but got bad enough after the worst one that my amylase and lipase were both in the 3000 range. I can’t even find words to describe it. I had to have a family member fly and sleep in my room to help me out more than the nursing could-- and had pain so bad that I lost consciousness. Each procedure led to a 2-3 week hospital stay (in one, the interns also punctured me lung putting in a line-- so now I’m really hesitant around teaching hospitals-- but some have been great, too). It’s a common treatment-- both diagnostically and to try to keep ducts–like biliary and pancreatic ducts open-- but in the long run, none of them have proven too successful. If I’m really lucky, things are still open from the most recent one-- about 1-1/2 months ago. This time I ended up on long-term TPN (total nutrition through a central line, so it goes in your veins, not your GI tract), which rests the pancreas, but now I might have gotten septic (and I’ve heard from a bunch of people on this great site that they’ve gotten infections from longer TPN use).
I absolutely wouldn’t have another ERCP unless it was truly life-threatening-- and while there’s always a risk of increased pancreatitis with the procedure, I know people have also wrote that they didn’t get worse from it. Overall, I’m note hearing of too much success in treatment this way, although they do get a good look-- they use an endoscope-type device that let’s them get in deeper. The problem comes that they have to go to the pancreas, and it’s a sensitive organ that gets reactive easily. If you have it, make sure it’s with a really good specialist.
Hope all this helps without scaring you off. I think this is the most awesome group for people sharing and helping each other. I hope you feel better soon!!! Good luck with whatever you try!!
ERCP is pretty standard procedure for pancreatitis. It really is the best way to see what is going on in the pancreas. In my case, they spray the throat with a numbing spray, they put you out, then they slide a tube down your throat. They can put a scope down the tube and look to see what is going on. They can take pictures and they can even do an ultrasound through this tube, they also use this tube to put in a stent. They won’t know until they get down there whether of not you will need a stent. You’ll find out when you wake up. Also, don’t expect to remember anything of that day. So be sure to have the doctor write down everything. I have started taking a list of questions with me for the doc to answer (write down or tell my husband).
You may have a sore throat for a few days (Halls throat lozenges work well for the throat). I usually have a backache for a couple of days (a heating pad is the best thing for the backache). Backache due in part to the position they put you in during the procedure. In part just because they’ve been in your pancreas.
The first time I had this done I ended up in the hospital for a few days. It caused an attack of acute pancreatitis. I have had several more since then and have been able to come home. One doctor told me that there was a 50% chance of getting acute pancreatitis, another doctor told me 1 in 1000.
I wonder if those are personal statics to the doctor?
Don’t be afraid to ask questions even if you think they are dumb. There is no such thing as a dumb question if you don’t know the answer!!
I hope this helps you.
Hi Cindy Lou,
My name is Karen, and I too live in Ky. I am in Louisville. Are you close to there? I have been suffering with pancreatitis for about 20 years now. Mine is due to a rare gene mutation, which is part of the Cystic Fibrosis I have. I am one of the oldest CF patients in Ky. The life expectancy is around 31 now, so the odds aren’t too good for a 45 year old woman. But, I am still going, not strong, but going!!
I am new to this list, although I do belong to an online support group for CF. I have been reading some of the posts, and there seems to be a nice group of people on here.
I have been through it all with my pancreas, including enzyme levels over 17,000 one night. That was a rough bout of pancreatitis!! If you ever want to discuss pancreas issues, feel free to email me anytime.
ERCP’s & stints have worked very well for me. I think I have had a least 6.
For anyone who has never had an ERCP.
- They put in an IV so that they can inject you with a medication called “Ver-sed.” This medication is not really an anti pain med, it is more of a “forgetting” drug and an “I don’t care drug.” The spray that they put in your throat tastes sort of like a banana and it is a novacain-type drug–this is your pain relief for your throat and also kills your gag reflex as well. When they stick the ERCP tube down your throat, they get it into your stomach and then pump some air into your stomach so that they can get around better. You will burb a bit after the procedure. While most actually sleep through the procedure, I never have! So, I get to watch the screen and see what they are seeing and it is quite a trip.
Now, I no longer will get an ERCP because I am on 200 mcg/hr of Fentanyl via two 100 mcg patches on my abdomen. I change them every 3 days. This medication is used on cancer patients on their last legs… They do not want to change any interaction between the Fentanly and the versed.
I never got an inflammation of my panc after an ERCP but know that it seems more do than don’t from my reading. Part of this, I believe, is that by going into the duct with the air i your stomach there is a blowback of whatever is in your tubes or ducts back into the pancreas. Having pancreatitis means that what yoou put out is not usually the best quality stuff and has a tendency to have some infective or rancid quality to it–thereby causing an attack.
I hope that this helps some of you.
To Cindy Lou, Cager21, Volup, Anyse, and chawk -
Thank you so much for all your info. I will definately talk to my Gastro about all this before I make an appointment. The next available date isn’t till May 30th but I’m on a waiting list. I’ll stay in touch. I keep all of us in my prayers. Hope everyone had a pain free Mother’s Day. Life goes on… one day at a time.
I may sound odd but I actually had a pleasant experience during my ERCP! The worst bit was the yukky taste of the “banana” flavoured spray dripping down the back of my throat, yuck!! I also stayed awake throughout, it was a VERY bizarre experience but was very relaxed and at ease because of the medication. It was very odd being able to watch my internal goings-on on a tv screen though! They even took a picture and printed it out as a souvenir for me LOL! I remember trying to talk and getting very frustrated that they didn’t understand a single word I was saying!! I was trying to ask “what is that?!” but not even a murmour was coming out LOL! I did actually amuse them to a great degree and I was VERY giggly! I was told that it was as enjoyable for them as it was me!! But once the sedatives wore off I was shiverring beyond belief, this is common though…Good luck!!
I too take Fentanyl patches and believe they are the greatest things since enzyme invention lol!! I would highly recommmend them to anyone. Oh, and a nifty TENS machine too!
My ERCP was just a month ago and my personal feelings that the results of
finally knowing exactly what is going on was well worth the risk.
I do not remember anything about the actual procedure and only had to stay
in the hospital one night afterwards. I left with a slight case of
pancreatitus but again - feel it was worth it. My duct was completely
blocked so a spincterotomy was performed and an stent placed in the duct.
The hardest part for me through all of this is that I think I had
unreasonable expectations. I thought once the duct was unblocked that my
life was going to return to some part of normal that I used to know.
Unfortunately, that has not happened and I am just now starting to accept
that chronic pancreatitus is just that - chronic. It will be with me for
the rest of my life.
MY BEST ADVICE FOR YOUR ERCP is to make sure you have a gastro who has done
hundreds or thousands - make sure he/she has a huge amount of experience
with the procedure. I did lots of research before mine and all the
statistics I read directly relate the experience of the doctor with the
amount of complications / outcome - i.e. the more experience your doctor or
team or doctors has the less likely you are to have complications.
Anyway - just my 3cents of advice. Sorry for the typos - still don’t have
spell or grammer check on my e-mail.
Thank You to everyone here at Careplace for helping me feel “normal”. Just
hearing your stories, fears, accomplishments - every detail no matter how
small or big - has made me feel like a person who is not completely alone.
It’s great to find others going through the same things. Thanks to each of
you - Sincerely.
Hello everyone, my daughter -age 11 just went through her 6th ERCP. They can really tell alot when they run this test. Her amylase and Lypase were normal and nothing else was wrong with her. She has had Chronic Familial Pancreatitis since she was 5 W/ problems since 3. This last ERCP was last week. She ended up in the hospital for 4 days after. Her duct was enlarged to 6.6 which is larger than ever before. They decided to put a double stent in her. They will take them out in 3 months for risk of infection then put in another double stent for another 3 months. This is to assist with opening the head of the pancreas up again. The last time she had a double stent, she did very well fo r a little over a year…God Bless …Champ
I have had over 25 ERCP’s I only ended up in the hospital 3 times because of this procedure.
Good Luck and wish you well.
Dear Pancreatitis Group: I have been reading all of the postings. It helps
to know that others are dealing with this debilitating problem, but it hurts
to know that others are in the same pain. I got pancreatitis from an ercp
that they were doing to find out if there were gallstones in my common bile
duct. That was almost four years ago. Since then the acute attacks have
progressed to chronic. I have been having constant pain that has been
treated with morphine. I’ve had two more ercps at IU Med Center in
Indianapolis. The first one was with a stent and that did help for about
nine months. Then the attacks came back very regularly. I had another
ercp, but the duct was not blocked so they did not put in a stent. They
don’t know why my pancreas continues to be inflamed. I am now on daily
shots of Sandostatin and today I went in for a celiac plexus nerve block.
As of tonight I am not in pain, so I am keeping my fingers crossed that this
will work for a while. I am on another web forum on yahoo. It is for
people with chronic pancreatitis and mostly for people who have had their
pancreas removed and islet cells transplanted. I have gone so far as to
contact Dr. Sutherland at the Univerisity in MN. He seems to be the expert
on the removal of the pancreas. I just don’t know if I am ready to make
such a drastic step, but I don’t want to live like this for the rest of my
life. I would really welcome any other people’s thoughts on the removal of
Best wishes to everyone. You are all very brave.