Out of Hospital

[Guest guest]

Hi Robin

I am sorry that you have been going through so much! I too have the

same problem as you. I got an attack of acute pancreatitis after an

ERCP to remove a gallstone, and for the last nearly 3 years I have had

" attacks " They are getting worse and more frequent. My blood levels

always come back normal. I swear it is pancreatitis, but my Doctor

has been cautious to agree. I have had a couple of CAT scans that

show chronic inflammation of the pancreas, but with the Lipase and

amylase levels still within the normal range (high normal)they won't

call it CP. They hesitate to call it AP also. My Gastro Doctor has

also said " abdominal Migraines " as a possibility. I just know that the

pain is getting worse, that I hurt all the time, but the acute attacks

are going to take me to an early grave! I am on Lexapro for the

serotonin levels. I take Viokase and Protonix before every meal. I

take Vioxx everyday also. I can't handle pain killers. I usually

break out in hives, my heart races and I am horribly sick on them, I

don't function at all, I find I am better off living with the pain.

Believe me, we (my family Doctor who has been a God send and my

advocate through all of this) tried every kind of pain killer that

there is. My body reacts badly to pain medication. I can't even do

Morphine IV, as I get hives and they are afraid of a really bad

reaction. I have been told I have a high pain tolerance, but after

living every day in pain, I don't feel like I do.

I know it is so frustrating to not have answers. Keep looking, keep

trying. I pray that you will find some answers soon. I do have

migraines once in a great while, I am not sure what to think about

abdominal migraine theory. I just wish for answers for you, and for

all the wonderful people on this board. Take care!

Suzi

[Guest guest]

Hi Robyn,

I recently got my cp dx in October of 2002. I had been having abdominal pain

for about 3 years. I had a cyst on my pancreas removed in 2000. All the

CT's prior to the surgery should a " healthy " pancreas with the exception of

the cyst. Never had any a & l elevation. While in surgery the surgeon not

only took the cyst he also took the tail of my panc. due to inflammation. I

was only expecting him to remove the cyst, so after the surgery he informed

me that I had a " touch " of pancreatitis so he removed the tail and said I

should not have any more troubles. Ya right! The abdominal pain continued.

for the next 2.5 years. Off and on, not always horrible pain. Finally my

2nd GI agreed that it had to be cp, and he does understand that a & l

elevation isn't always present. It still took him almost 6 months to come to

that dx. So in my opinion your " normal " test does not mean that it is not

cp. My GI also put me on Elavil about 4 months ago. I believe it has helped

me. Prior to being on it I was having a really bad run with pain. For about

3 months. Since I have been on it things have been somewhat better. What

dosage are you on? I take 30 mg/day. I have been told that is a pretty low

dosage. Anyway, I just wanted to let you know that you aren't alone. And if

you ERCP said cp, then it is. That is the best test there is. Once in a

while a PCP will try and say that it can't be cp. It gets me down and

sometimes I start to doubt it too. I think...maybe it is just IBS. But then

all it takes is one good attack. You know that pain that just comes from no

where and feels like it comes from deep inside your body. That's all it

takes to snap me back into reality. Don't let these docs tell you

differently from what the ERCP had proved. Can you get a copy of the doctors

notes from the ERCP and keep it with you? Just a thought. Sorry for my

rambling. I hope you are feeling well.

Sending lots of happy thoughts your way...

Marisa~San Diego, CA

[Guest guest]

Robin,

Unfortunately you are going through what a number of others including my self

have

gone through on the road of pancreatits.

The one thing I did have was a Interal Med. Physician that did not get hung up

on

numbers and normal test reading. He would say to me " Yes, your numbers are

normal

and the xray of CT results say normal, but I am not treating the test results I

am

treating you . Your symptoms tell me you have something going on. No, I am not

sure what is is, but I am treating you and your symptoms and that is what is

important. " This Physician always told me to let him know what is going on and

to

call him if I need anything. It is because of his approach and comfort level

with

treating my symptoms without that diagnoses, that I could be proactive in my

care

them and now.

He would let me know that if I felt I needed something or if I couldn't handle

that pain, I could get help. I did not have to suffer and feel that can be

treated if I have symptoms and not a diagnosis.

I feel for you. I know what it is like to have the pain and not have the

Numbers

to go along with it . Then the Doctor starts to question and look for other

things and the change his /her mind.

Try and remember you would not be asking for the Doctors help if you where not

having symptoms. They need to treat you and the symptoms. Things are not alway

Text Book or by the book. You are a person in pain first and they need to

address

the pain item. The rest will fall in place.

Take care.

gail

[Guest guest]

Hey Y'all,

I was in the hospital Friday, Saturday, and today. Thank heaven, now I'm

home. If you need to reach me, please let me know.

THanks,

Jerry/NC