To Adam , From Laurie

[Guest guest]

Hi Adam,

Just now was able to get onto the computer to respond to your

post. I am happy that things went relatively well with your hospital

stay but I understand your frustration with not getting a definite

answer. But I think that you are getting closer. From what you

wrote, it seems that an ERCP is the logical next step. You started

off with the least invasive, least risky procedures hoping to find

the problem...you eliminated a lot of things by doing this but now

it does seem as if the SOD question has to be addressed.

And this is can only be addressed through ERCP with

manometry. I think that this may be your next logical step. As far

as the percocet phenomenom....it is my thinking only, and I have

just a little published research data to support me in this....but I

think your reaction to the meds may have been from the tylenol

component of the percs. I cannot take tylenol much as I think it

makes my pancreas pain worse. It definitely makes the liver

unhappy, that is very much supported by research. Because I

have a history of elevated LFTs I have been given just oxycodone

- which is percocet without the tylenol. So, while your description

can support the hypothesis of SOD based on the narcotic

component of percocet, your reaction to it may instead be due to

your sensitivity to tylenol. Especially if your LFTs were high, you

should be a little careful of it. If you continue to need narcotic

pain meds, maybe you should ask about getting just oxycodone

(you can get it as capsules or tablets in various strengths).

As far as me...I had an ERC with manometry (the ERCP without

the P part) to diagnose my SOD. When the results came back

abnormal, I did have a sphincterotomy of the sphincter of Oddi -

but my understanding was that it was the biliary portion only...not

the pancreas part. For various reasons I ended up having

another ERCP (this time the full workup) three weeks later, at

which time the endoscopist confirmed my pancreas divisum,

diagnosed me with a completely closed minor papilla which was

obstructing my dorsal pancreatic duct. So he did another

sphincterotomy, but this time of the minor papilla, stretched the

dorsal duct with a dilator then inserted a stent. At that time, he

also evaluated my pancreas with endoscopic ultrasound, which

is considered to be the state of the art way to evaluate the tissue

portion of the organ (as opposed to the ERCP which looks at the

ducts and infers the condition of the tissue). I had two more

ERCPs to but in more stents.

I am thinking that this may be your next step....and as

mentioned, you need to go to the best endoscopist that you can

find and afford. If you are lucky to be covered by insurance to see

Dr Lehman in Indiana, I would think that this is your best choice. I

haven't had personal experience with him, but from all that I have

heard about him, he seems to be the best person to diagnose

and treat things related to the pancreas. I plan on seeing him

when things get tough again.

I read your response to and I want to address the

question you had about how opening the duct helps your food

move through your tummy. Basically it is because the enzymes

needed to digest your food gets access to your digestive system

through your sphincter of Oddi. If you have a normal anatomical

pancreas (no pancreas divisum, etc) then that sphincter is the

only way that your pancreatic enzymes and biliary enzymes can

get to your food. So, if these enzymes are not available, your food

is not being digested in your duodenum and small intestine so it

is not able to move through it. The intestines then slow down,

which causes a " back-up " all the way to your tummy. So much

so that food stays there and if things get bad enough, you will

vomit the food out of there as a kinda self defense action. In

addition, there is some research that suggests that whatever is

responsible for SOD (and maybe some forms of pancreatitis) is

also responsible for gastroparesis...that is, if it is a nerve or

other functional problem with SOD, then it may be related to the

whole signalling system of the tummy too. This is a very

simplistic explanation as I am not too up on the specifics so I

may be mis-representing the details but I hope it describes the

jist of the idea.

Hope this helps a little, feel free to email me if you have more

questions or if I need to better explain what I am trying to say. I

hope that you get a handle on this soon...the longer you wait, the

more frustrated you will become and the worse - off your

condition may get. The only caution I urge when evaluating docs

for diagnosing and treating SOD is that there are many GIs out

there who do no believe in that condition so there is a chance

that you may run into doctors that will not even entertain the idea

that you are experiencing SOD. That is one reason why going

straight to the indiana group may be the best course for you. You

will get the straight answer, one way or the other, at that time.

Laurie

goutbuster@...