Debbie

[Guest guest]

Debbie,

what a relief to know that your pcp will take care of you when you need it!

When all this began again for me in July 2002, I felt very frustrated with my

pcp after a couple of months. I felt that he was not taking my problems

seriously. He had been my doctor since 1990 but I was going to leave him and go

to another pcp. However, I decided that since I had been with him so long and

for the most part had been very happy with him, I would write him a letter

telling him how I felt. I knew there was no way I could talk to him without

crying so the letter worked better for me. I made an appointment and first had

his nurse read the letter. She teared up and told me that she didn't think the

letter would offend the doc at all and that it was definitely the right thing

for me to do. The doc read the letter and it was obvious from the look on his

face that he had never meant to make me feel that he was not taking my problems

seriously. He apologized and told me that his only defense was that he, too,

felt very frustrated because he really didn't know what was causing my problems

and/or what to do to make it better. It was shortly after that that I asked

him to refer me to a pain mgmt doc. This was November and I'd pretty much

needed narcotic pain med daily since the attacks returned in July. I felt that

being under the care of a pain mgmt doc would be good because when it looks like

daily narcotics would be needed long term, it would be best to be under the care

of a doctor more familar with dealing with chronic pain. My pcp agreed so the

pain doc has taken care of prescribing my pain meds since that time. My pcp has

admitted me to the hospital on several occasions just on my telling him that I

couldn't get the pain, nausea, and vomiting under control at home. He has also

given me a hefty shot of demerol (100 mg) and phenergan (50 mg) on numerous

occasions. Right now I am mostly using my internal med doc as my pcp. My

internal med doc is in Huntsville, which is a much larger town about 25-30 miles

away. My pcp is in Athens, where I live, which is a small town and the local

hospital is also small. They never checked my lipase when I was having an

attack because they couldn't do it in house and it would take 2 days to get it

back. They would insist that my pain couldn't be from my pancreas since my

amylase was normal. At this time, my old GI was insistent that my pancreas was

'perfectly healthy' and that the pain, nausea, and vomitng were being caused by

my liver (I found out in Jan 03 that I have autoimmune liver disease after the

GI FINALLY did a liver biopsy - after months of his insisting that my liver was

'prefectly healthy'). So, at the time I was going to my local ER, the diagnosis

I had was recurrent acute pancreatitis, not chronic pancreatitis. It ends up

that I am one of those people with chronic pancreatitis whose amylase pretty

much stays normal but my lipase often elevates during an attack. Although, I

have also had attacks that were very severe with both a normal amylase and

lipase (a few times when I went to ERs at hospitals other than my local one).

Anyway, it took going to the ER in Huntsville and having my lipase elevated, but

amylase dead center normal to figure this out. I was admitted under the care of

my internal med doc 4 four days the end of May. At this time, the internal med

doc was my only doc in Huntsville. My other docs (besides my pcp) were all in

Birmingham, which is 100 miles south. The internal med doc was very upset to

find out that Athens ER never bothered to check my lipase during attacks. He

said lipase is actually much more specific to indicate something going on with

the pancreas and that with an elevated lipase there was absolutely no doubt that

my pain, nausea, and vomiting were being caused by my pancreas. He discharged

me after 4 days only because I begged him to let me go. My daughter was in town

and we had several appointments with potential wedding vendors. I was home only

36 hours before I ended up back in the hospital with an even higher lipase, but

still dead center normal amylase. My internal med doc told me that I now had to

listen to him and that we were going to move very slowly. He called in a GI in

Huntsville, which ended up being a wonderful blessing. At that point, I was

totally disgusted with my GI in Birmingham and was planning on asking my

internal med doc to refer me to a GI in Huntsville. The second attack just sped

things up. The new GI put me on actigall because he thinks part of my problem

is that my bile was not flowing properly. The actigall thins the bile and helps

it to flow easier. He also put me on pancreas enzymes. He told me that my

liver was absolutely NOT causing the episodes of severe pain, nausea, and

vomiting. The episodes were caused by my pancreas. He discharged me after 7

days with a diagnosis of relapsing idiopathic chronic pancreatitis. I have been

SOOO much better since then. I still have pain, nausea, and vomiting but so far

I have been able to get it under control with my meds at home and have not had

to go to the ER for a panc attack since being discharged on June 10th. This is

the longest I've gone without an ER visit since the attacks returned last July.

The new GI told me that I am dealing with two very serious chronic and

progressive illnesses (autoimmune liver disease and chronic pancreatitis - not

to mention lupus, diabetes, and a clotting disorder) so I cannot expect to never

have pain or problems. he said I will have attacks of acute panc and some will

land me in the hospital. However, the hope is that those will be few and far

between. So far, that seems to be happening!

Boy, I got off on a tangent. Just wanted to say how wonderful it is to have

doctors that actually acknowledge your pain and health issues and are willing to

do what they can to help you.

W