Pancreatitis - ERCP?

Nesbru, Norway

#1 Dec 26, 2006
I had a quite bad bout of (acute, idiopathic) pancreatitis 2 months ago, still recovering. They now want to do further examination, by scope, to check the ducts (pancreatic and bile ducts are wide on MRCP/CT). I was told that it is just an "extended gastroscopy", but it sure sounds like an ERCP to me. Is there any differences which I should be aware of? How much sedation should I ask for? Do any of you have experiences to share with such a procedure (or were you so out you don't remember?)? I have only done an ordinary gastroscopy before, then without any sedation, which is how they normally do it (but not for an ERCP, I think, not 100% sure). I'd like to know what I'm in for and to plan ahead. Would be nice to know if I should ask for "a lot of sedation" or not, if the latter could end out being horrible in the middle of it all - or? Could the procedure e.g. be painful/very uncomfortable when they examine the ducts?
Thanks a lot!
S Mullick

United States

#2 Dec 27, 2006
ERCP is a very risky but essential procedure in some cases.If ERCP is needed,then look for Someone who has done One year Supervised Certified Fellowship after three years of GI and three years of Internal medicine residency.Many who are doing ERCP have not done this EXTRA YEAR Fellowship under TIGHT STANDARDS for QUALITY assured RESULTS.ASGE has issued Guidelines,but DUKE UNIV. Hospital doctors have written on ERCP--WHY IT NEEDS to be done by ONLY A FEW?
They take about the risks.There are perhaps 15 in Chicago who passed this QUALITY TEST under the supervision of ASGE guidelines criteria.Many have not done it.
To get into this program--200 apply for one Slot at the prestigious hospitals.There were 20 such programs in 2002.This gives you an idea of how difficult it is to get into such a program.
Now,I know that Dr.Tarun Mullick completed this ERCP program under a well known Therapeutic Endoscopy Director.He did MD from JOHNS HOPKINS University Medical School--Rated #1,residency from JHU rated#1.Then he was selected In Mayo Clinic,Cleveland Clinic,Harvard,Johns Hopkins for 3 years Fellowship in Gastroenterology--He chose to do it at Cleveland Clinic--rated#2 in US by US News& World report.
He is listed on Delnor Hospital under Find Doctor--Gastroenterology.He is the series editor of GASTROENDO and writes about latest treatments/surgeries/diagnosis .This magazine is read all over the world by Gastroenterologists.He has received Governor's award for breakthrough research on CANCER and new Clinical procedures.
Dr.Mullick introduced the use of Propofol Sedative at Delnor Hospital that he was trained at top Hospitals.ACG/AGA/ASGE has approved its usage by a trained GI and GI nurse.If you read the articles by Dr.Douglas Rex,Chairman of Indiana Univ.Hospital and former President of ACG(Amer.College of ),he found it safe and better.
I AM NOT SAYING THAT YOU MUST GO TO HIM--but if you go to some one similar in Chicago--then you are in Best Hands.Ask for Propofol Sedation by a trained doctor--Anesthetic Doctor will charge extra but your mind will be at peace if your GI is not trained in Propofol use.Please tell all your other health issues like Heart risks and medication that you are using.
S Mullick

United States

#3 Dec 27, 2006
I noted that you are in Norway.I had a classmate Commander Arne Mjosund from Norway-he lives in Naples,Florida and goes to Norway--he is 85 years old now.
If you are having ERCP done in Norway--GO TO A WELL KNOWN UNIVERSITY HOSPITAL in NORWAY.Some of the EUROPEAN UNIV.Hospitals have well trained ERCP specialists.There is a doctor from UK at Duke univ. who wrote the article I mentioned.He is trying to set TOUGH STANDARDS FOR ERCP in UK.
You can do Google Search on ERCP.

Nesbru, Norway

#4 Dec 28, 2006
Hi again,

Thanks a lot for your input. My hospital, where they asked to do this procedure, is locally here. I still can't stop wondering why he said that it is not an ERCP, but an "extended gastroscopy", when that really does not seem to be the case when I read articles online. It seems to me that when they go past the duodenum to inspect the ducts, pancreas etc., it is an ERCP. Am I right? If not, could you please explain? I did ask what they would do if he e.g. found a narrowing, if they would do anything about it then and there, which he answered no to. Could it be that he calls it a "gastroscopy" because it is investigational only? I just get so curious, and really wonder why he would say this if it is incorrect...

It is not a University hospital (since there is no uni here locally), but a large county hospital covering a quite large area. I feel that they have done a very good job on my follow-up so far, and also they have been very good at listening to what I have had to say. This is the same hospital where I was admitted when I got this acute pancreatitis attack (possibly caused by Neoral for psoriasis/arthritis, but maybe something else too). Anyway, planning ahead is very important to me, as I have Ehlers-Danlos syndrome. Even with the hypermobile type, I would think that I do have an increased risk of having complications (I do e.g. have slower wound healing, get injuries much easier than others etc.). I really hope that doesn't make me more susceptible to getting a new attack of AP after the procedure! Because of the EDS, I can't lay down on a bed or table without dislocating/subluxating, which causes severe pain from pinched nerves and muscle spasms. Quite natural, I guess. That is actually my main reason for asking for sedation, so it does not end out as an awfully painful and exhausting experience where I can't even communicate what is going on, and where I maybe won't be able to lay still because of the pain, thus disturbing the doctor doing the procedure (and increasing chances of problems?). So it is important for me to plan ahead, to be sure. I will have to check if they use the medication you mention, if it is available here etc. He talked about using Ketobemidon. hydrochlorid (Norwegian spelling, brand name Ketorax here) which I tolerate well, in combination with Valium. He also mentioned that he could use IV Pethidine (Demerol) instead of Ketorax, but since I know Ketorax, I'm thinking that would be better. I expect to be awake, only with pain levels I can tolerate. I will ask to get more pain meds than during my MRCP, because that was really, really hard. Ended out having to have a break in a bed about half way through, and a nurse had to administer more pain meds. But, it was my own fault, I should have seen that I would need more...
Do you know if the ERCP itself can cause any pain or be "very uncomfortable"? An ordinary gastroscopy went fine for me (years ago).

I will contact them again, I think. I have a very good GP, and I can discuss it with him too.

BTW, do you know if you can continue having pressure feeling (upper left, just under the ribs) and also some pain, for quite a while after an AP attack? Or does that indicate that there may be some "activity" there still, just "tiny flare-ups" which calm down again (blood work is OK again now)? It is now 2 months since I was admitted with AP (had been feeling bad for months prior though).

Thanks a lot for your input! I will see if I can check your references, and the meds you are mentioning.
S Mullick

United States

#5 Dec 29, 2006
Please ask your Gastroenterologist about the procedure differences and the RISK/benefits.Your GI doctor's Bio should tell you whether he/she is qualified to do ERCP.Only 10% of GI's are qualified to do ERCP.
Good health in New Year.

Nesbru, Norway

#6 Jan 24, 2007
Hi again,

Things changed a bit for me... Didn't even get to check more about the doc, since I again got acute abdominal pain, had to go to the ER and was admitted with acute pancreatitis...

After three days (weekend) of IV fluids/pain management, they decided that they needed to get an ERCP done. They also did an ultrasound, and the one doing it this time, was the head of the dept, and he told me that he would also be doing my ERCP. I felt very confident after talking to him. It was rough though, had excruciating pain during. He preferred not giving me a general due to my Ehlers-Danlos syndrome and spine/SI-joint problems. They ended out doing a Papillotomy (not because the duct was so narrow, but to be sure, I think). After being in the hospital a total of 11 days, 6 days post-ERCP, I was discharged yesterday, because my lab work is good.

But I am still in so much pain, and really feeling quite bad in general. I left hospital after lunch yesterday, had a bit of food for lunch and couldn't leave until the nurse gave me an OxyCodone so I could sit somewhat straight in my wheelchair to move. I simply haven't eaten properly since, just to help control the pain somewhat. I can't handle more bad abd. pain. It makes me bend forward, and my upper/lower back is killing me, with arm/leg nerve pain. Had an awful pain attack tonight. I'm on my "ordinary" EDS pain regimen, and was told that I can take up to 6 10 mg OxyCodone for breakthrough pain daily, but it is not providing sufficient relief at this point. Maybe it is partly since they had me on a lot of IV meds on top of OxyContin for 10 days (stopped those Monday after the morning dosage), that the pain feels more strong than it would have done otherwise, that I am more sensitive to it because of that - but it is very much there. As they obviously meant, I shouldn't be having this pain anymore since the bloodwork has gone back to normal again. The last time it calmed down as the lipase got lower too. The difference now is the ERCP/papillotomy that has been done.

Do any of you know of possible reasons for me having this pain at this point? My GP did new tests today to be sure that I am not having a bit of a pancreatitis flare-up. My CRP was OK though and I'm not having a temperature. Do any of you know if e.g. slow wound healing with EDS could be the answer to such pain problems? That it just takes a lot longer to heal? Any ideas would be highly appreciated, at this point my GP didn't know, but wanted to rule out a flare-up first. And I really would like to find an explanation, I feel real bad experiencing this pain when being told that I shouldn't have it!

Any ideas or advice would be highly appreciated! Thanks!

Nesbru, Norway

#7 Jan 26, 2007
I really hope that there are somebody here who can offer me a bit of input on this question. I have barely been able to eat since Monday and I'm still in quite a lot of pain, and in general feel lousy.

The only theory at this moment, is that it is some kind of post-ERCP/pancreatitis pain, maybe caused by slow wound healing connected to Ehlers-Danlos syndrome (always had slow wound healing, so it does make some sense, I think - using longer to recover from procedures, is common amongst EDS'ers also). Enzyme levels are OK, liver tests somewhat elevated, something my doc attributes to the ERCP.

We'll do new blood work Tuesday, and if things get too rough during the weekend, my doc told me to go to the ER. He told me to focus on really drinking lots of fluids, that is very important at this point. And to try to eat really small meals of light and easily digested things - better than nothing, I guess. I'll also buy a full nutrition powder at the pharmacy tomorrow, I think. Worth a try. I have lost so much weight tomorrow.

BTW, I saw in the paper that this year's flu is exptected here within 2 weeks. Forgot to ask my doc about the vaccine. I never wanted to do it before, for several reasons, but maybe I should ask to get it Tuesday, since getting the flu might be real rough for me now, since I guess that I'm quite weak in general now after having acute pancreatitis twice in about 2 months. They say this year's virus is an especially nasty one too, with an increased chance of complications... Any thoughts on that? Since it is still not too late to get the vaccine... Should I also ask for a pneumonia shot, or?

Thanks a lot!

Hoppers Crossing, Australia

#8 Oct 13, 2011
Hi Pippi,
I have EDS type III (hypermobility type) had fall and got terrible abdo pain, have been told I have an annular pancreas... never been told that before & had plenty of scans/u/s before.
Any chance you can shed light on this?? Very painful indeed. Into week 2 now.

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