Sphincter of Oddi Dysfunction

[shanlyn]

I started having "attacks" (high centerline, not right quadrant) Jan. 99 and eventually had my gall bladder removed Feb. 2000. The attacks continued after the cholecystectomy and I had an MRI, CT Scan, Hida Scan, and finally an ERCP in Mar. 2001. My pressure was extremely high and my sphincter was cut. Unfortunately, the attacks came back mid-October and I have as many as 5 a day. I have an appointment to see my Gastroenterologist, I'm just looking for ANY additional information; I am trying to do as much research as I can before my visit. I'm still unclear as to what the "attacks" are. I fear they are pancreatitis and I don't even know what more can be done for me. I want to make an informed decision as to the next step in the process. Any help would be greatly appreciated!

[Baseball_Mom]

Have they ever said anything about maybe your bile is too grainy?  The reason why I ask you might get some relief from a prescription called Actigall.  This is very effective in liquifying the bile.  They try to use this on patients who cannot have the surgery done.  It might be something to ask your doctor about.  I'm having the ERCP with Sphincterotomy done on the 14th because I continue to have pains 6 months after surgery.  They tried the Actigall and it appeared to be working. It is slow acting.  Afte 4 weeks I was starting to feel some relief.  Unfortunately, in week 5 I broke out in hives and had to stop taking it.  But this is not a typical reaction to this drug.  Most people tolerate it well.  I wish you the best of luck.  If you have any information about the ERCP or Sphincterotomy that you can give me, I'd really appreciate it.  Have a GREAT day!  Take Care!

[TazLady]

Hi,
I had an ERCP with Oddi Sphincter procedure.  That went just fine, except that I had a BAD pancreatic attack and ended up in the hospital for 10 days.  I had this done in July and since then am still having pains and problems but not like before the surgery.  I was told that this is not a permanent fix and there will be more surgery for me in the future because of the pancreatitus (pancreatitis).  But I was an exception to this procedure and I'm sure most of them turn out just fine.  I would definatly ask your Doctor about whether you might have pancreatitis and to perform the tests nec. to find this out.  You owe it to yourself.
Take care,
Sandy

[shanlyn]

The worst part of the ERCP was the stuff that they put down your throat to numb it, it tastes awful! You will be awake for most of the setup so that they can watch your insides work "real time," without having been slowed down too much by the sedative. What this means is that you'll be awake when they put on your oxygen and prep the machinery. Oh, you'll be laying on an ever-so-comfortable X-ray table! After that, you're under (I don't remember anything and the doctor said that I talked the entire time)  :) Recouperating, I had a bout of mild pancreatitis for a week or so, but the doctor let me rest at home after the second day. Looking back I would not have worried so much (my doctor has a lot of experience and has performed the ERCP over 7000 times). I will tell you that I don't want to do it again, but if I needed to, I would. Let me know if you have more specific questions, I'll be glad to tell you whatever you'd like to know.

[Baseball_Mom]

Thanks for your response.  I've had several Endoscopy's done.  Is that basically what I'm in for except I'll be on an xray table instead of a cushioned bed????  The last Endoscopy I remembered that I gagged alot.  But the ones before it never bothered me.  I guess they can just give me a little more versid (spelling???) What part of the country do you live in?  That's great your doctor has done over 7,000.  Makes me worry a little more about mine only having done 1,000.  At this point, if having this done will make the pain go away, I'm all for it.  I'll keep you posted on how things go on the 14th.  Thanks again for your input.  Have a GREAT day!

[shanlyn]

Yes, you'll be on an X-ray table!!! They take X-rays throughout to watch the movement and such (aren't I so technical?). You won't mind that you're on the X-ray table though, I promise. My doctor is in Jacksonville, FL. He is quite experienced and made me feel as "at-ease" as possible. I am going to be asking my doctor about the possibility of grainy bile- how would he know though? The one who did my ERCP is NOT the one I'll be seeing in 2 weeks. Please keep me updated as to your progression- I'd give you my personal e-mail, but I'm a little leery to over the internet.

[Baseball_Mom]

Here's mine:  ***@****.  Email me and we'll keep in touch.  Thanks!

[bjasch]

I had them go in 3 times to cut my duct open only to go back within 6 months for them to do it again. My doc finally put in a stent to help stretch my duct. I am 28 & he said that when you are young you tend to heal & so the cuts they made healed over with scar tissue. The stent worked good. I occassionally get pain but not like I used to. If you believe it may be your pancreas it is a simple blood test. Talk to your doc I also thought it was my pancreas (did get pancreatitis after 1st proc)but it never was. Hope this helps.