Re: I am so confused, someone please help

[Guest guest]

Hi Jen

I'm so glad you found this group. Is the doctor you see a Gastroenterologist?

Maybe you should get a second opinion. I had my gallbladder removed 2 months

before I was diagnosed with CP. I believe the surgery is what caused the CP but

the doctors say it was from all the heavy drinking I did. I am 36 and was a

very active person. Yes I did do some heavy drinking in the past but that was 3

years before my first panc attack. What ever caused it doesn't matter now I do

have it and have learned to take it day by day.

Is your Lipase the only thing that is high? What about your triglycerides? The

only way I was diagnosed was with the lab tests. I continued to have problems

and had my first ERCP and that doc said that I had " ADVANCING PANCREATIC

CIRROSIS " I have heard of cirrosis of the liver but of the pancreas?????? I

decided to get a second opinion and the new GI doctor had never heard of it

either. I have since been going to a GI doctor who specilizes in ERCP's. He

said that I had minimal scar tissue but I definitely had CP.

Whatever you do do not drink alcohol!!! It will send you into an attack quickly.

I didn't believe the doc and went out with friends and 1 drink turned into 5. I

got sooooo sick. When I told the doctor about what I did he told me the next

time I drink could be my last. He said it could kill me. Why do we always have

the learn things the hard way???

How long have you been having pain? Have you noticed your symptoms are worse

after eating? What meds did the doctor put you on?

I'm so glad you found this group.

Hopeing you will feel better soon

Patty Duley

Corydon, In

[Guest guest]

Basically it is not all that confusing. You know you have divisum,

you know that you have a stenotic minor papilla (from the failed

attempts to cannulate the dorsal ducts) so therefore that is the

answer to your pain questions. No doubt.....the stenotic papilla is

causing the relative obstruction and it is objectively evidenced by

the raised pancreas / lipase levels. The MRCP would not show

the stenosis other than the dilated duct downstream of the

papilla but if you were not challenged with secretin during the

MRCP (or the MRCP - CCK ) then the dilation probably would not

be seen. As far as the sludge and stones in the gallbladder....t

hey can be a normal finding - because many people at autopsy

have this and had no symptoms. So it is only when classic

symptoms occur along with the sludge and stones is it

considered a disease. However, because there really are no

" classic symptoms " accordiing to my surgeon (he says that for

every 100 patients he sees with gallbladder disease, he can see

100 different presentations of symptoms), it is reasonable to

consider a cholecystectomy as a way to diagnose a problem. If

you take it out and you feel better, then it obviously was the

problem. But that has its risks too, as you are aware of. But it

may be that in order to get your life back that it is a risk worth

taking.

Now what is confusing about your pain, is what to do about it.

You attempted to stent and have the sphincterotomy with no

success and the consensus seems to be that the doctors will

never be successful in stenting. If that is indeed true, you really

may need to get a surgical opinion and consider having the duct

surgically connected to your duodenum. However, you did point

out because the dorsal duct is too small to be imaged on

radiology that the chance for surgery to be performed

successfully is small. You may be looking at a more radical type

of surgery where they actually cut out part of your pancreas (look

up procedures entitled " small duct disease " ).

So in my opinion, from following your journey through this h*ll of

yours is that: it is obvious that you have symptomatic pancreas

divisum. Objective signs of this is the elevated lipase / amylase

and the inability to image your dorsal duct and the failure to

cannulize the papilla due to stenosis. Basically this means that

you have no way to drain your pancreas of the juices that it is

producing. In fact, you may have no drainage at all! You cannot

eliminate this possibility because no one has been able to

determine what your dorsal duct looks like because no one has

been able to inject the dye. Subjective signs of symptomatic PD

is your vomiting, your pain and other things that you have related

that your experience. There should be absolutely no confusion

about your diagnosis. However, understandably, there is

confusion about what to do to treat or manage it. I guess if I

were you, that is how I would go on from here. Find someone

who is willing to treat symptomatic PD and forget about

establishing the diagnosis of CP. Unfortunately, that will come

later....as the disease progresses your will undoubtedly start to

show those signs of CPthat they are looking for (dilatation,

calicfications, atrophy, etc) but that could take up to a decade.

But what is essential now, is to start being treated for the

symptomatic pancreas divisum because there is little doubt that

that is what you have.

Just my thoughts, but I am almost exactly in your boat. I have

symptomatic PD, no overt signs or CP but, I and my PCP know

that down the road, I will, so our challenge is to manage the

symptomatic pancreas divisum so that we delay the

developement of CP for as long as possible. It is inconceivable

for your doctors to dismiss symptomatic PD as not being

treatable until it morphs into overt CP. When that happens, that

means that your organ has been damaged to such a degree that

even a first year med student will be able to diagnose CP. And

that is not what you want to have happen.

Laurie

[Guest guest]

Hi Jen, I'm waaay behind on the posts but I just had to respond to

this one. It sounds very much to me (but I'm not a doctor) like you

DO in fact have pancreatitis. Can someone please help me out here

but doesn't the pancreas divism inherently bring along with it a

positive dx of pancreatitis? Particularly with the seemingly tell-

tale symptoms? I just don't get how the doc could say anything

otherwise. Even his perception of the way the pain is with respect

to gall bladder pain confuses me....I've had gall bladder pain and

it wasn't at all what he described below (intermittent in nature.)

In fact, it wasn't any different from the pain I get with cp except

I found in my case the nausea and vomiting was worse(keep in mind

tho Jen, that I haven't been definitively dx'd with cp yet but they

are treating me as though it is.) Jen, your pancreatic enzymes are

elevated and that still isn't enough to convince the doc? I would

run (not walk)from this doc. Boy, we sure have alot of docs out

there that don't seem to understand this disease but if that's the

case, I would sure respect them more (as my PCP did) if they would

just admit it's over their head and recommend/send you to someone

else. I know I'm not being much help here....but wanted you to know

that though I'm new to this as well (past 6 months) the pain and

symptoms sound very much like what I and plenty of others here get

in chronic pancreatitis. I'm now on my 3rd gastroenterologist but

he has been recommended to me by this group and I have an

appointment w/him on the 23rd of August and then an ERCP w/manometry

scheduled for the 24th. It's Dr. Lehman at Indianapolis University

Medical Center/Hospital. If I hadn't found this group I would never

have known about him and in my case the only test that exists to

positively dx me (with I suspect and one other GI suspected) is the

ERCP with manometry which measures pressure at the Sphincter of Oddi

for Sphincter of Oddi (SOD) Dysfunction. I have NEVER yet shown

anything wrong with the pancreas when they use visual tests, MRCP,

CT and EUS. Anyway, Jen, what I'm trying to say here is that please

don't be discouraged because one doc doesn't think you have

pancreatitis....they just aren't aware of the intricacies of this

disease and all of it's manifestations. Where do you live? Could

you make the trip to see Dr. Lehman in Indianapolis? If not, there

are other good docs that alot of people here use...maybe someone

here could point you in the right direction. Well, in closing let

me just say that you're definitely in the right direction in this

group. You'll learn more here than you'll learn from any

doctor...these people here are a wonderful, friendly group of people

for support. And you'll always find support here Jen. Please feel

free write anytime!!

love and best wishes to you