Re: Karolina - what to do about the pain

[Guest guest]

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@...

Alabama State Representative

Pancreatitis Association International