U of M update

[Guest guest]

Hi all,

Just thought I would update you on my long-awaited consultation at

the University of Michigan. I am so frustrated right now I could

just scream.....

Does it state somewhere in the doctor's code that they are not to

give out any more information that specifically asked for? :-) I

like her a lot, but I didn't get a lot of info from her. And I

forgot my list of questions, so of course I forgot half of them while

I was in there. Here goes:

1. No cancer-that of course is the best news.

2. Bile looks good, so that is not the cause of the backup.

3. I had pancreatitis in August when I was first there because my

enzymes were up, as were my liver enzymes.

4. They want to do another ercp with possible longer-term stent to

see if the duct scarred back down.

5. They " think " that cutting the sphincter helps the pancreatic duct

pressure but the studies haven't been done to bear this out.

6. My pancreatic duct pressure was " way high " -her quote.

7. She changed my pancreatic enzymes to viokase-6 with each meal or

snack. Ha! I don't have meals or snacks. I have bites and sips!

So, I guess my questions now are-will they use the same size stent or

go bigger? What is the prognosis of having this done twice in such a

short period of time (one and a half months from the time of the

first to the second)? Where do we go from here? And if I had

pancreatitis in August-although my enzymes were not nearly as high as

the 9000 that they were in March- and it is the same pain as ever

before, why don't they assume that I just have pancreatitis? Help me

you guys. I am flipping out-I am a very adaptable person-I grew up

military and learned that to survive-but I don't do real well when

the rules change in the middle of the game. I won't lose hope, and

next week I will be fine with all of this-as soon as I have time to

process it all-but right now I am really struggling. I know I don't

have it nearly as bad as many of you do and for that I am grateful.

I need to know a little bit more however. I am still mourning the

fact that I haven't been able to ride my bike or rollerblade since

this started. And I guess I just want to know if I have some hope of

having my life back or if I need to change my thinking. Like I said,

I can adapt, but I just need to KNOW. Do any of you take viokase?

What is your experience with it? Why, if the pancreatic enzymes are

high, do they give you MORE enzymes? That makes no sense to me. I

will quit rambling now. Thanks for listening and if you have any

info, I am all ears. Thanks!

Be well,