Re: Karolina - what to do about the pain(karen &anyone else)

[Guest guest]

Weston,

Thank you so much. OMG its a big help just knowing that im not

alone. I had to laugh when you mentioned about some of the ER docs

sleeping through some classes in medical school. Honestly, thats

how it seems. And your correct about the gallbladder. Thats why

you can live without your gallbladder. It simply is a storing unit

that holds bile when its needed, sort of like a pocket. The liver

produces bile and the pancreas (as we ALL know) produces the

digestive enzymes to breakdown foods and help with absorption.

Thus, making the bile work better in a round about way. I remember

when i first moved to Florida. This was in January of this year

(2005) and i had fallen backwards in my computer chair and the fall

really aggreviated the CP. My mom took me to the ER and they ran

some blood work and the ER doc says that i dont have pancreatitis.

He said my pancreatic enzymes are completely normal so theres no way

i could have pancreatitis. I told him that with Chronic

Pancreatitis your pancreatic enzymes simply dont raise as often

anymore because your body becomes accustomed to the high enzymes so

it compensates. So even during a pancreatic attack your enzymes can

be completely normal.... yet your body is working " over time " to

keep them at that level....in a sense. Like they say..... with CP

the pancreas simply becomes burnt-out and the enzymes dont rise

anymore. If you were to squeeze a balloon in the middle and swist

it, the air wouldnt escape because of the scar tissue that has been

created. The only difference is that with CP you cant " cure " the

scar tissue. So with CP, the scar tissue simply makes your pancreas

no longer function..... thus keeping enzymes at a normal level. I

know when the ER doc in January of this year said that its not

possible to have CP and your enzymes be normal. And i explained to

him in great detail of what CP is and he was a little dumbfounded

and embarrassed lol. He then added..... well whatever you think

doesnt matter. And i said to him..... i dont think, i know i have

CP and i showed him my EUS results (i carry them when i go to the

ER) and boy he felt like a @$$ and kept his mouth shut lol.

There simply are stupid doctors, ignorant doctors, theres even

doctors that wear horse blinders near their eyes..... if your lucky

you do get blessed with compassionate, SMART doc that actually know

what they are doing. Im blessed that i now have two great smart

compassionate docs. I feel bad for you all that are having a

difficult time finding a doctor that is a good one. Take care

everyone.

God bless you all greatly.

Much love, Karolina.

> Karolina,

> I have had more episodes similar to yours than I could ever

count. My

> absolute worst episodes in regard to pain, nausea, and vomiting

have very

> often been with normal labs. Often my liver enzymes will elevate

with a

> flair of pancreatitis but my pancreas enzymes only elevate very

rarely any

> more. I also have autoimmune liver disease so when my liver

enzymes elevate

> the ER doctors totally blow it off and say they are sure my liver

enzymes

> are always elevated because of the liver disease. NO, my liver

enzymes are

> almost always totally normal because of the medication I'm on for

my liver

> disease (imuran - an immunosuppressant), but my liver enzymes and

my

> alkaline phosphatate do often shoot up during a panc flare. A

couple of

> days NPO usually has them well on the way back to normal.

Thankfully my pcp

> and GI are wonderful and totally understand that once you have cp

you can

> have very severe pain with totally normal panc enzymes. My GI

says it is

> because the nerves around the panc are damaged and also because

when you

> have cp your pancreas is often no longer functioning enough to

produce

> elevated enzymes. There is one particular ER doc at my local

hospital that

> absolutely refuses to give me anything other than IV fluids and

bentyl

> unless my pancreas enzymes are elevated. My pcp has argued with

him and has

> admitted me directly on numerous occasions so I can bypass the

ER. However,

> when I have an attack in the middle of the night or on the

weekend, I really

> hate to bother my pcp unless I am sure I need to be admitted.

There are

> times that a liter of IV fluids, phenergan, and pain med will buy

me a few

> hours to be NPO and let things settle down.

>

> I honestly don't have any suggestions for you. I've tried many

methods in

> the ER. Most of the time I am very nice, never complain, don't

bother

> trying to explain anything to them, etc. It just takes too much

energy to

> get upset and argue and in the past I've tried that method and it

didn't

> help anyway. I've even told my pcp that I wish I could check my

labs at

> home so that I'd know whether the ER was going to be any help or

not. The

> thing is that the pain feels the same to me whether my labs are

horrible or

> wonderful.

>

> As for the being young thing, that is frustrating I am sure. I'm

sure I'm

> older than you - I'm 44. However, even when very sick I have a

very young

> looking face. I have long curly red hair and maybe that makes me

look

> younger. If I had a nickel for every time I've been told 'you

don't look

> sick' I'd be rich. I used to laugh and say I was glad I didn't

look on the

> outside like I felt on the inside as it would scare the babies

away! Now I

> usually just say " I got good genes on the outside but not so good

on the

> inside. " and laugh. You are right that disease does not pick a

specific age

> to hit you. I know people twice my age who are healthier than I

have ever

> been. I also know people half my age who have been hit much

harder by

> illness than I hope I am ever hit. My 23 year old daughter was

diagnosed

> with rheumatoid arthritis at 15 and with the antiphospholipid

syndrome at

> only 21 (APLS is an autoimmune clotting disorder that can cause

strokes,

> blood clots, miscarriage, and heart disease). She is 23 and

married, but

> she was mistaken for a student numerous times when she was doing

her student

> teaching and observations in both high schools and middle

schools. She just

> completed her master's in May so this was only a few months ago

that she was

> mistaken for a student time and time again. She'll begin teaching

6th grade

> English next month. Hopefully she won't be mistaken for a student

since her

> students will only be 11 and 12 years old! Anyway, she is also

young to

> have to deal with health issues but no one told that to the RA and

APLS!

>

> Maybe it would be better for me if my face were more wrinkled or

drawn, or

> if I went into the ER screaming, yelling, and making a scene - but

that's

> not who I am. I laugh when I really want to cry. I smile even

when the

> pain and nausea makes me want to scream. I don't bother trying to

convince

> the medical profession that I'm not a drug addict and that I have

never ever

> been a drinker. It no longer matters that much to me. I do thank

God for

> my wonderful GI, pcp, and pain mgmt docs who believe in me. Also,

my

> wonderful hubby, daughters, and the rest of my family never doubt

me. Many

> in my position don't even have that.

>

> Oh, just thought I'd share something my favorite (NOT) ER doc told

me the

> last time I went to the ER. I had been having diarhea that was

mostly just

> bright yellow bile for over a week. The ER doctor told me that

there

> couldn't be bile in my stool because I don't have a gallbladder.

He the

> antibiotics I was currently on because I'd had a positive blood

culture

> after running a 102 temp must have changed the color of my stool.

I told

> him I'd started having the bile colored diarhea before I was put

on

> antibiotics and that I also had it with every panc flare-up. I

told him my

> GI said the reason for that is because when I have a flare he's

pretty sure

> my bile duct gets blocked and then as the attack starts subsiding,

the

> blockage gets better, thus MAJOR diarhea with almost nothing but

incredibly

> caustic bile. He just made a hmmm sound. Even at the time he

told me I

> couldn't have bile in my stool because I have no gallbladder I

thought to

> myself, 'he's full of it'. Someone correct me if I am wrong, but

isn't bile

> made in the LIVER and then STORED in the gallbladder til it is

needed. Not

> having a gallbladder does NOT stop the liver from making bile.

Why would a

> 'doctor' be so stupid as to say that you couldn't possibly have

bile in your

> stool just because you have no gallbladder? In fact, it would

make more

> sense that you might have more bile than usual in your stool if

you don't

> have a gallbladder since the liver simply produces the bile and it

there is

> no gallbladder to store the bile and/or regulate how it is

dispensed. If

> I'm wrong on this, somebody please correct me. I am not a doctor

but

> sometimes I think some of these ER docs must have slept through

certain

> parts of medical school.

>

> I just thought about something in regard to episodes of pain not

controlled

> by oral meds or times when you are puking your guts out so oral

meds are

> useless. Some people in the group have had good results using the

Actiq

> lollipops. I think they have fentanyl, which is a very good pain

med. They

> are quick acting because they disolve in your mouth and perhaps

you could

> keep them down even when nauseated. Also, phenergan suppositories

can be

> very helpful. However, I have to hit the nausea before I start

throwing up

> because once I start throwing up, even the phenergan suppositories

don't

> help much. Oh, I never take my pain med without taking oral

phenergan along

> with it. Pain med without phenergan is like asking to get sick.

I also

> have zofran and at times it will help when the phenergan is not

quite enough

> to control the nausea. Again, the key is to hit the nausea before

it's bad

> enough that I start puking because the zofran is in tablet form.

>

> Don't know if anything I've said has been helpful, but sometimes

just

> knowing you're not alone helps.

>

> Weston

> w@p...

> Alabama State Representative

> Pancreatitis Association International