Re: I am so confused, someone please help (from Jen)

[Guest guest]

Thank you so much for the replys. I will try and answer the

questions.

Mark, with your list of causes of elevated lipase, they've ruled out

everything through various tests. They used to tell me when my

lipase was spiking it was as result of acute pancreatitis, but now

the lipase is constant so they don't think so anymore. It has not

been lower than 1600units/L since Feb and before that it was above

3000. They checked out all the organs you've mentioned and the only

one that has been abnormal besides the pancreas divisum is the gall

bladder. And today is the first time they have seen any sludge or

starting of stones. I've had 2 ERCPS, 1 MRCP in dec 03 and 1 last

week, 3 CT scans, numerous chest xrays and blood work about every 2

weeks since last Oct, colonoscopy, small bowel series and seen

numerous doctors. And i'm still constantly in pain. They've always

told me it was pancreatitis cause of the blood work and the pain in

the LUQ, so i'm confused now.

Fliss, thanks so much for the reply. That is a great idea about

writing down questions before I see the doctor. I was so upset and

frazzled today that I just cried when he said everything was normal,

cause I dont' feel normal.

Patty, I started having pain about last July. It used to be a

couple times a week and then it started getting worse and worse, til

now when it's constant. I've been hospitilized about 13 times since

Oct for the pain. The doctor i'm seeing now is a surgeon. Before

that I was seeing a Gastroentrologist, who was such a jerk. I've

also seen another pancreas specialist in another province(I live in

Canada) and i've seen another doctor who specilizes in medicine. My

regular GP is wonderful and i've known her for years and she

prescribes my meds. She has me on Morphine 10mg TID and I take

probably 2-3 gravol a day. I tried Creon before and it didn't seem

to help. The Morphine isn't doing much either anymore, but i'm

really afraid to go on something stronger. I feel bad enough taking

that when they don't know what's wrong with me. And yes I do get

lots of pain after eating. Some days I can't eat at all. But my

surgeon doesn't seem to care about that cause i'm not lossing

weight. Cause i'm lucky in that i can eat some days, so i'm

actually gaining weight.

Thank you so much for replying. I just feel lost and confused and I

appreciate the feedback. Jen

[Guest guest]

Sorry, I forgot to add that all other blood levels are normal.

Tryglycerides, calcium, everything else but the lipase. And

occasionally my amalyze spikes but usually not higher than 150.

Thanks, Jen

[Guest guest]

Maybe you need a long acting pain medicine. Something you take on a regular

basis. I am on Oxycontin 40mg and take Oxycodone 5mg for breakthrough pain.

After my ERCP in Dec. 03 I have constant pain also. I had to be admitted

multiple times for pain control. Finally my GI put me on the oxycontin and it

has helped a bunch.

Do you drink coffee? Mark mentioned a few days ago about coffee drinking

aggravates the pancreas. I use to drink 2-4 cups a day and have to take my

breakthrough pain med sometimes 3 a day. Well I stopped this past Monday and

maybe it is a coincidence but I haven't taken any oxycode since. Today is the

3rd day and I feel great. I have slowly decreased my intake of caffeine and

drink bottle after bottle of water. I hate to drink because of the taste but it

seems to help.

I was like you re: the pain med and going to a higher dose. But since I have I

haven't missed very much work. I have FMLA for intermittent leave and I am

allowed 60 days a year. I have used up I think 42 days so that doesn't leave me

very many until Dec when it began. Please don't feel bad about asking your

doctor for something that will help your pain and be long acting. I know at

first you may want to take in in the evening to see how it affects you. I am

able to function and do my job with the dose I am on.

Are you eating a low-fat diet. I mean 30-40 grams of fat a day. See if that

helps and make sure you read the lables of the processed foods you buy and you

will be surprised at how many fat grams are in the item.

Take care and hope you feel better soon

Patty Duley

Corydon, IN