Re: panc attacks with normal enzymes

[Guest guest]

Normal enzymes. Why is it so hard for doctors to understand that with

cp you can have very painful and serious attacks, yet still have normal

enzymes?

My acute panc attacks began orignally in Jan 2000. I had a rough year

and then about an 18 month reprieve, or so I thought. I still had pain at

least 25% of the time but it was more just the naggy sort of pain under my

right rib that I could ignore for the most part.

My old GI insisted it wasn't my pancreas and said it was from gastric

bile reflux (not acid reflux - but gastric bile reflux where the bile

refluxes back into your stomach and damages the stomach wall lining. Bile

is never supposed to be in your stomach because it is very caustic. My

previous GI said that the gastric bile reflux is just something that can

happen after your gallbladder is removed - especially if your body produces

a lot of bile and/or bile that is too thick - which mine seems to do both.

The naggy pain started getting worse again and I had one pretty bad

attack in Oct 01 (didn't go to the ER only cause we were out of town for the

weekend with friends - they were driving and I hated to have them take me to

the ER and spend hours there, so I just dealt with the pain and after a few

hours it went away). I found out that the surgical cure for gastric bile

reflux is the roux-en-y gastric bypass, which is the same surgery that they

do for weight loss. I was almost 100 lbs overweight and figured I'd just

kill two birds with one stone. I'd have the gastric bypass and that would

end my stomach problems plus allow me to get rid of my excess weight. The

reason the roux-en-y gastric bypass takes care of gastric bile reflux is

because they separate the lower part of your stomach and leave you with just

a very tiny stomach made from the upper part of the stomach. Your

intestines are re-routed so the bile can no longer 'reflux' back into the

stomach.

So, I had the gastric bypass in Dec 01. It worked wonders for both the

weight loss and the gastric bile reflux. I'm no longer overweight and my

new tiny stomach is very healthy looking and has none of the damage that it

had before from the gastric bile reflux.

However, it soon became obvious that the 'naggy' pain under my right rib

and through to the back was not from gastric bile reflux. In Jan 02, I

began having pretty intense attacks that would just last a few minutes.

They felt exactly like the original panc attacks of 2000 and also just like

the attack I had in Oct 01, two months prior to the gastric bypass.

My GI did an MRCP and an endoscopy. He said my new stomach looked

great. MRCP showed no problems at all with the pancreas so there was no way

the pain had anything to do with pancreatitis. He didn't have any ideas on

what was causing the pain, just that it wasn't my panc! In Apr 02, he told

me the attacks of 2000 were a fluke and I'd probably never have another panc

attack again.

Never lasted only until Jul 02 when the attacks returned with a

vengance! At that point both my amylase and lipase were very elevated.

I've been in the hospital and to the ER so many times since Jul 02 that the

number is too high to even count!

My amylase has not elevated in almost 18 months. My lipase has only

been elevated (that I know of) about 4 or 5 times since May 2003. It could

have been elevated more, but they don't check my lipase in my local hospital

because it has to be sent out and takes two days to get back.

It took me finally realizing that maybe my lipase was elevating even

though the amylase was not, to finally find out that I absolutely do have

cp! I went to Crestwood hospital in Huntsville, AL with a pretty severe

attack (as far as pain and vomiting goes) only hours after suspecting that

my lipase might be going up even though my amylase was normal.

I live in a small town (Athens) about 25 miles or so west of Huntsville,

so the larger hospital is about a 45 minute drive from my house. However,

it ended up that my suspicion was right. I had two pretty bad attacks back

to back in May/Jun 03 and spent 11 days total in Crestwood.

My internal med doc (the only one I had in Hsv at the time) called in my

new GI/Hep and he immediately told me that in addition to having autoimmune

liver disease, I absolutely do have relapsing idiopathic chronic

pancreatitis.

My GI last said he doesn't think my cp is autoimmune. He doesn't know

what is causing it but thinks part of it has to do with my bile not flowing

as well as it should - despite two sphincterotomies via ERCP back in 2000.

He put me on actigall 300 mg twice a day to thin the bile and help it flow

better. It has helped some - I think.

However, my internal med doc says that he feels sure my cp is autoimmune

in nature because I have so many autoimmune diseases, with more being

discovered in me, my daughter, and my sis as time goes on.

Both my GI and internal med doc said it is VERY common with CP for the

amylase to remain normal and the lipase to elevate. They both said it's

actually more important to check the lipase than the amylase since the

lipase is more specific for pancreatitis than the amylase. A few other

things can cause an elevated amylase, such as a bowel obstruction. An

elevated lipase is 99% accurate as far as indicating that the problem is

pancreatitis.

My current GI/Hepatologist, internal med doc, and one of the GI docs

that was on call for mine once when I was in the hospital have all told me

that since I now have cp, vs just recurring acute panc, we can no longer go

by the labs because my enzymes may never elevate again. They have said we

have to go by my symptoms. Trying to get other doctors to understand and

believe this is next to impossible. Most of the time, I don't even bother

trying anymore!

I cannot tell you how many times I have been treated horribly in the ER.

A lot of times the doctors play the game of 'you're not getting any med for

pain or nause til we see what the labs show.' I often tell the doctors

ahead of time that my enzymes may be normal, but that my pain is still very

real. I've gotten to where I just tell them that I don't care what the labs

show, I need something for pain and nausea and see no reason that I should

have to wait on the labs. Sometimes they'll do as they did with you - act

very compassionate and concerned, get me as comfortable as possible quite

quickly. Then when the enzymes come back normal, they act like I'm lying

about the pain and nausea.

I've had some horrible experiences at my local hospital. I actually

filed a complaint with JCAHO at one point over my treatment and because I

heard the nurses discussing a patient by name with great detail on how he

really had nothing wrong with him. His parents had been brining him to the

ER since he was 3 years old and his only problem was that his parents

brought him to the ER too much. They went on and on and I hear all about

this poor kid for several hours!

I finally ended up calling the director of nursing at the hospital and

telling her how I was being treated by some of the doctors and nurses in

their ER. I told her that I live only 5 minutes from the local hospital and

when I have an attack in the middle of the night, I would love to be able to

just have my husband bring me down the road rather than making the trek to

Hsv. I explained to her that I am a very kind and tolerant patient and

rarely complain about long waits or anything else. I told her I just want

to be assured that if I am having pain and/or nausea that cannot be

controlled by my meds at home, I could come to the local ER and be treated

with the kindness, compassion, and respect that any human being deserves. I

want to know that I will be given IV fluids if needed and IV or IM meds to

control my pain/nausea. I told her if that was too much to ask, to just let

me know I'd just never go to the local again and would be forced to have my

family bring me to the hospital in Hsv. She assured me that she would get

to the bottom of this and that what I was asking was not unreasonable in the

least! This was just before the end of the year that I spoke with the

director of nursing.

I ended up being admitted to the hospital only a few days later. This

time, I had my pcp call the ER doc and let him know my history and that I am

not lying when I say my pain is not being controlled with oral meds. Since

that time, I have been treated very well at my local hospital. This took a

very huge burden off of my family since it is much easier for me to be in

the hospital 5 minutes from home vs having to always go to the one 45

minutes or so from home.

I was just in the hospital again last week. Thankfully, my local pcp is

perfectly willing to admit he does not know a lot about dealing with cp

and/or the majority of my other medical problems. However, he has admitted

me on several agains with normal labs based simply on the fact that my pain

and nausea are not able to be controlled at home by oral meds. When he

admitted me this last time, he told the ER doc to tell me that he would be

out of town so he'd have to have one of the local residents look after me.

He left instructions and the doctor was very kind, even though he was the

same doctor who had been a total jerk to me one time when I was admitted

under his care in Nov 02 on a weekend night when my doc was out of town.

This time my pcp had talked to him and told him that I was not a 'flake' and

told him how he usually handles my attacks. The doc was nice but he did

comment that my labs looked good as far as my pancreas enzymes went. My

potassium was very low but they got it back up by the next day. I told the

doc that my amylase never elevates any more and that my lipase only elevated

about 25% of the time. He said, " That're really very unusual to have an

attack of pancreatitis and not have the amylase elevated, even with having

cp. "

I didn't bother argueing with him, but I do think I am going to print

out the info from the s Hopkins site that clearly states that it is

very common for the panc enzymes to never elevate during an attack once you

have sustained enough damage to your pancreas to cause cp.

Well, I've written a book when mostly I just wanted to say that I

understand, have been there, and done that!

Take care. Hope you are doing better.

.