Need feedback on ERCP (Endoscopic Retrograde Cholangio-Pancreatography)

Pancreatitis
#1

I need some feedback from y’all.

I returned to UCSF again after 2 years. When I informed Dr. Ostroff that nothing had changed and I was having just the same problems, he said it was time to start acting. He ordered labs (including the CA 19 test which no one had ordered before) and I have a CT scheduled for next week. He wants to do an ERCP and perform a sphincterectomy. Then maybe a gallbladder removal. Then I don’t even know what.

It seems we have reached that point of just sort of cutting and slicing, hoping to find the right thing. I have mixed feelings. This hide and watch is not working for me. I am having flare ups all the time. I can see I am worse than I was a year ago. I also know how very sick I get after an ERCP. For over a month I am in horrible pain, I can’t eat, it just feels like razor blades tore up my throat and stomach. I don’t look forward to it at all.

I especially don’t like the timing of this. It could all go down over the holidays. That is just not ok for me.

I welcome any feedback from those of you who have had any of these procedures that I am facing. Or any feedback in general.

Thanks and I send good thoughts to everyone for a peaceful night.

#2

Karas,

Hey, I am sorry you are feeling badly. Trying to stay under the radar is not easy with this disease. I know what it is like in this “process of elimination” at finding a cause. So far I have had CT scans, nuclear tests on my gallbladder, ultrasounds, MRCP’s, EGD’s, EUS’s, bloodwork to check for autoimmune CP and celiac disease and just 2 weeks ago my gall bladder removed. These tests prove NO reason why I have had pancreatitis. I have not been diagonsed with cp (yet) They call it Acute Recurrent Pancreatitis. I have pain often though and my labs stay normal. They have no explanation for this.

As far as your procedures- I have never had an ERCP, they seem so resistant to do this to me. It is actually my next “step”- ERCP with manometry to check the pressures. I am sure you have had a ct scan so that is simple. The gall bladder surgery was not so bad. I struggled with waking up but my biggest problem was getting constipated from taking more pain meds than usual. It took me about 4 days to be up and moving around. I am 2 weeks post op and I can do most things normally except for lift (like a heavy laundry basket). I guess the ERCP could be your biggest hurdle if you get a bad flare. Maybe you could start with other things and hold off on the ERCP until after the holidays.

I guess I didn’t help much lol. I hope all gets better soon for you. (((HUGS)))
Keri

#3

Karas,

There is a percentage rate of acute panceratitis occuring during an ERCP. I have had two different doctors do them and their percentage rates are different. Your doctor needs to tell you what his percentage rate is. And it is really a crap shoot. A lot depends on the severity of the stricture, where it is located and the skill level of your physician.

I have had 11 ERCP’s in the last 8 years. (most of them were done in the year 2007). I have had only one acute attack after a procedure. That one happened because the stricture was so bad.

The longer you wait to have these tests done the more severe your condition can get. The more severe your condition gets the higher your chances of having a bad procedure.

I would encourage you to not wait. Waiting until after the holidays is not going to make you feel better. If you have this procedure before the holidays, you may just feel well enough to actually participate and have some fun.

Don’t shoot yourself in the foot. I did that with my first ERCP. Kept putting it off for several months. The results were that I ended up in the hospital for 3 weeks. The sooner you get this taken care of the less likely that will happen.

I’m rooting and praying for you.

Keep the Faith and God Bless,

Vonnie