Pancreatitis that is on going...

[Guest guest]

Hi Group,

August 25, 2004

I have had Chronic Idiopathic Pancreatitis for the last 3

years. The first attack I had was the night before I had to be at a

meeting in Miami for 4 days. I woke with a stomachache in the

morning and went to work and the pain just below my ribs then went to

my back and became worse and worse. I actually thought I was having

a heart attack and drove myself to the ER. I actually cried thinking

I was going to die the pain was so severe. They discovered that my

amylase and lipase levels were way high and I was given Demerol for

pain and an IV for several hours and released me. They concluded

that I had a pancreatic attack and I had never heard of one. They

really did not give me any information and I called my primary doctor

from Miami and told him the pain was getting worse. He prescribed

Vicodin and the bottle said to eat food with this medicine. Of

course I got worse and worse and when I got home I was referred to a

GI doctor in the same office as my primary doctor. They did an ultra

sound and an upper GI test. He said there was nothing wrong with me

and asked if I drank alcohol. I told him I had a glass of wine from

time to time and that was about it. He concluded that I was an

alcoholic and would never get any better unless I gave up alcohol

totally. I did. I was quite upset that he had nothing else to say

but " you must be an alcoholic. " (Sound familiar?)

Less than a month later, I had another attack and the doctor

said I must have had to drink to cause this attack. I was

dumbfounded by his lack of trust of my word and set out to find a GI

specialist. So I never wanted to see him again.

The new doctor did more and more tests (GI, ultra sound, MRI, etc.)

and found nothing. I had probably had 8 more attacks after that and

went to the ER each time and learned the regimen, IV for a few hours

and Demerol for pain until my amylase and lipase dropped and was

always released by morning.

The doctor then wanted to do a test by putting a stint in my bile

duct to see if I had a weak sphincter muscle. He warned me that this

test had risks such as a severe pancreatic attack or even death. I

did the test because the pain was too severe for me to deal with. I

did have a severe attack and was in the hospital for 3 days. He did

find a small stone that was entrapped in my bile duct that was the

most likely cause for all the attacks and ruled out alcohol. All my

levels dropped and all was ok for 7 months. I went for a 6-month

visit and I told him that I have been fine and no further attacks.

He informed me that the stint and the slight enlargement of the bile

duck should last for about ten years or so. I do trust this doctor

with my life and plan to stick with him.

About a month ago, I started having the attacks again. This time

more and more frequent. I would not eat or drink for 4 to 7 days and

lost 30 pounds in the last month. Instead of going to the ER each

time I called the doctor and he prescribed me Vicodin and a clear

liquid diet. I have follow through, but I still keep getting the

attacks as soon as I go back to light fat free foods. I had a MRI

yesterday and I wonder if I have another tiny stone in my duct and if

it will even show up. I am beginning to give up hope.

Some of the questions that I have ask the doctor regarding all this,

he has not given me clear answers to are: Each time I have had an

attack did permanent damage occur to my pancreas to make it weaker?

What is next? What is an Islet Cell Transplant? Has it helped any

of you? Am I going to always have this problem? Is this going to

kill me?

Anyone that has information that has helped you I would appreciate

your input. Email me any time. No one knows the pain we go

through. (A bit of humor) I overused my back recently and went to

physical therapy. The physical therapist asked me what my pain level

was on a range of 1 to 10. As I told him 3, I laughed so hard as I

explained to him that most people that he has worked with probably

would say that it was a 10. As you all know the pain level on a

scale to 10 of back pain is not comparative once you have had a

pancreatic attack, a true 10.

My best regards and empathy to all of you,

L

Merbenz47@...

[Guest guest]

Dear ,

Welcome to the group. Everyone here is very knowledgeable and

can answer most questions. Sorry you are hurting again. You

mentioned that your Md informed you that the stent and the slight

enlargement of the bile duct should last for about ten years or so.

And about a month ago you started having attacks again. Do you

still have a stent in? I know when my stents get blocked up I double

over in pain. Hope you Mds have answers for you soon and you are

feeling pain free soon.

Love,

W