Sphinter issues/any experience to share?

[Guest guest]

Hi there. I'm writting on behalf of my husband, D. He is 26, and

has had acute pancreatitis 4 times in the past year and 3 months.

Although gallbladder issues run in his family, they have turned up

nothing on the ultrasound.

The GI doc at the hospital says that it must be the sphincter. He

is refering him to University of Louisville hospital for an ERCP to

cut and/or stent the ducts.

This is upsetting because, from what I have read, the complication

rate is high, and sucess rate is not as high as one would hope. I

also have read that scarring can completely block the duct later

on...needing more surgery, and possibly causing major illness.

His attacks usually follow a large or fatty meal...particularly if

he has not eaten in a while. We have been getting the run-around

for a year, and feel that the docs suck!

Has anyone had a similar experience? Any info/advise on the SOM-

sphinter or oddi manometry? His attacks resolve themselves

quickly, but indigestion follows for weeks/months.

Does anyone know of any other procedures that may be able to be

performed first....or anything??

Help. We are so upset, confused, and disappointed in our GI docs

here.

Thanks, we appreciate all answers and advice!

dk_40207 @ yahoo.com

[Guest guest]

Hi ,

I will try to answer some of your questions based on my

experience with SOD, pancreatitis and stents (as well as

gallbladder surgery) and my research into literature relating to

these issues.

First off....from what I understand, someone in your husband's

situation usually is advised to have the gall bladder removed as

a first step. Alot of times, recurrent acute pancreatitis attacks,

such as what you described can be caused by gallstones that

migrate into the common bile duct or even into the main

pancraetic duct. The bigger stones should be seen on ERCP,

MRCP, ultrasound or CT. The smaller stones (microlithiasis), or

sludge may not be seen on any of these imaging studies but can

be implicated in causing acute pancreatitis. The significance of

this knowledge is that even though no stones can be seen by the

conventional imaging studies, cutting the sphincter to the

common bile duct like you described, oftentimes " cures " the

acute pancreatitis attacks - that is, stops them. If after recovery

from this surgery (the gallbladder removal) a patient isn't

improved, then more studies will ensue...like the whole ERCP

and maybe an EUS, etc.

Usually this is the recommended procedure for a patient that

has recurrent acute attacks: The first attack is usually not

investigated too intensly unless it is very severe or has abnormal

LFTs to suggest that there is gallbladder problems. After the

second one, the cause is usually more aggressively looked at

and if the gall bladder is still present and there is no particular

reason to NOT do gall bladder surgery...then that is the next step

(along with an interoperative cholangiography to make sure

there are no stones in the common bile duct - if stones are

found, then a sphincterotomy may be done at time of surgery or

usually aftewards via ERCP depending on the surgeon, patient,

etc). If attacks still recur, then ERCP with or without manometry is

done. This will look at the bile ducts, the pancreas ducts and

then take a reading of the pressures within the sphincter of Oddi

(if manometry is indicated). If the pressures are abnormal or if

there are stones found in the ducts, then a sphincterotomy is

done. Sometimes when a sphincterotomy is done, a

endoscopist will insert a stent in order to keep the sphincter and

duct open while it is healing. Usually this type of stent is a self

migrating kind and will only stay in about 7 to 14 days or so and

then expell on its own. Other times, depending on the

endoscopist, etc a different type of stent is placed which will

need another endoscopic procedure to retrieve it. At this time

too, another cause for the pancreatitis may be found - for

example pancreas divisum or annular pancreas or some other

anatomical reason for a duct to be blocked. The docs may also

start looking at his family history too to determine if there is a

liklihood of having hereditary pancreaitis, or test for auto-immune

pancreatitis.....there are all sorts of things to look at...to figure out

a cause. And sometimes no cause will be found and then it is

true " idiopathic " pancreatitis.

As far as the risk...yes it is risky (but in the scheme of medical

procedures, it is a relatively low risk) to have an ERCP, but it is

also very risky for your husband to have recurrent acute attacks.

The longer these attacks go on, the bigger risk he has of his

pancreas becoming permanently damaged. And once this

happens, there is no turning back....you can slow down its

inevitable destruction but you cannot reverse it completely. And if

his attacks are occuring because of some obstruction, like a

stone or sphincter problem, if this is fixed soon, he has a good

chance of never having a problem again. Yes, fibrosis / scarring

from the cut itself can occur....but if it does, it can be dealt with

and in the meantime, his pancreas has had a chance to heal

and has not had more attacks, hopefully. The big issue at this

time for you two is to identify the cause and treat it as soon as

you can so you can prevent the acute attacks from causing

chronic changes in the pancreas. Most of the people on this

board are here because of chronic pancreatitis and all can testify

that this is something to avoid at all costs; including the risk of a

diagnostic ERCP.

There is a lot of good literature on-line and if you search google

using " sphincter of Oddi dysfunction " or pancreatitis or even Dr

Glen Lehman (he is a GI at Indiana university that has written

extensively on pancreas disorders and is highly, highly

recommended by many people) you will find some helpful

information. There is also the journal of the pancreas that is a

public access medical journal that is open to all

(www.joplink.net).

But basically it all comes down to this: The sooner you find the

cause the better chance he has of stopping this completely. The

most statistically significant cause for acute recurrent

pancreatitis is gall stones (as well as alcohol but this is an

obvious factor which I will not address to any extent). Because of

this, most GIs recommend that the gallbladder be removed as a

" let's see " . If the patient gets better, then that is that. If not, then

they go on to look even more closely to see if there are other

reasons that they can identify and fix.

I have had four ERCPs with sphincterotomies twice and stents

twice. Two of these 4 were rough - as far as recovery...and two

were relatively easy. But I can say without them, I would not be

able to live as I am today. Sometimes the risk of the procedure

is so much less than the risk of not having the procedure and if

your husband is having attacks that often and if they are severe

enough to affect his life then it is time to assume the risk for the

sake of a cure.

Laurie

[Guest guest]

wrote:

> His attacks usually follow a large or fatty meal...particularly if he has not

eaten in a while. We have been getting the run-around for a year, and feel

that the docs suck!

Help. We are so upset, confused, and disappointed in our GI docs here.

,

Not having any personal experience in sphincter problems, I really can't

advise you, but I'm sure there will be several others who will gladly contribute

their comments on their own experiences with SOD.

One thing I did want to mention was in reaction to your statement that your

husband's attacks usually follow a large or fatty meal. This would be most

probable. Was given adequate instructions about the medical

necessity of needing to adapt his eating habits to accommodate the

restrictions of pancreatitis? Low fat diets of less than 30 grams of fat daily,

and less than 6-8 grams per meal are recommended to avoid acute attacks

and complications, as is the need to completely abstain from all alcohol. It's

suggested that a patient eat 4-6 mini meals per day, rather than three larger

ones. If can remember to do this, his chances of seeing a reduction in

the amount of attacks he has will improve greatly.

Learning to cope with pancreatitis requires us to make some rather difficult

lifestyle adjustments, yet our diet changes are necessary and can make this

condition much easier to live with.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep., PAI

Note: All comments or advice are based on personal experience or opinion

only, and should not be substituted for consultation with a medical

professional.