ER visit last night

[Guest guest]

Hi everyone, since I am new just this last year to CP, please

help me understand. My enzymes have been up for a year. The GI doctor

tells me not to pay any attention to them. Just go on symptoms. I was

in the worse pain I have ever experienced last night. It was different

than other times. I was short of breath because it was so painful. It

was in my back on the left side about bra section and radiated to the

front under the breast bone and into my neck and shoulder. It was so

painful when I went out into the yard to get my husband I was almost

crawling. Is this the pain that you all refer to. I also have cystic

fibrosis and they thought it was an infection. My wbc was fine, slightly

elevated temp 99.9 and continue with the pain today. I did not sleep

last night at all. I took two dose of Darvoncet and the second one never

touched the pain. they said they did not think it was panacreatitis even

with the history. Can anyone take an educated guess? or tell me about

your experience? IS this how it is? thank you. Deb

[Guest guest]

Deb,

That sounds like the typical pain experienced by most cp sufferers. My pain

is almost always on my left side under my ribs radiating from front to back

and up to my shoulder. It is the worst pain I have ever experienced. I am so

sorry you are going through this. It is horrible! I would not wish it on

anybody.

I can't understand the docs telling you not to be concerned with your enzymes

being up. That is a big red flag for cp! I hope you are feeling better. And

for having been a darvocet user I can tell you it does nothing for cp pain. My

docs gave me that for almost 2 years before I finally found the right doc and

got better pain relief! There is so much more out there for pain! Don't let

them do to you what happened to me. I didn't know what to do until I came here

and learned about better options and I am so glad I did! See if your docs will

give you something for you to have when you have attacks.

Take care and I hope you are better!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

Oh thank you Angie for writing me back. Yes the pain was the worse, my

poor husband was petrified because I could not get my breath it was so

bad. I do have Vicodan for pain but I have never used it. I guess I

will have to learn. Another question, does it come and go like that with

you. Today I feel better. I still have pain but better. I have had

terrible nausea. I guess I should not have eaten. I puree all my food

for one year. I guess I need to go on liquids for a couple days. Lipase

was 1200 last night and amylase was 350. Actually that is way down for

me. Three weeks ago, my lipase was 9800 and that was a severe attack. I

am finding that they come with eating chocolate hard candies and I had a

bunch yesterday. None today and when they were up a couple weeks ago, I

had eaten the same thing. Such a dumb bunny. I had a fever of 101 today

with lots of sputum. So, I am infected again. I felt terrible from

that. Please keep in touch and write back. Deb

[Guest guest]

Deb,

Yes, my pain does kind of come and go at times. When I have a cyst the pain

is pretty much constant. Don't be afraid to take your pain meds. I was for so

long because I was afraid of becoming addicted. I learned from my doc and

people on here that if you take your meds properly you won't have that problem.

I

had surgery and came off of the oxycodone with no problems and no withdrawals.

I have had to go back on it since the problems I have devoloped in the past

few weeks and it actually works better since I was able to take a break from

it. Anything with a lot of fat in really bothers me. I love chocolate but I have

to go easy on it, mainly because of my blood sugar but also because of the

cp.

I hope you are feeling better today!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

Feeling better execpt for the nausea. I have a hard time convincing my

MD that that pain was from the cp. He told me yesterday that it was

muscle pain. Do you ever win with these guys? does everyone have a lot

of distention with this. I sometimes can not even get my clothes

buttoned. Got to go am very tired. The fatigue is unbelievable. Love

to all. Deb

[Guest guest]

Deb,

I do swell with attacks! It is frustrating. I have clothes that are elastic

waist and wear alot of dresses when I am having attacks so there is no

pressure on the abdomen. I don't know how the guys do it! They can't wear

dresses!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

Debbie wrote:

Feeling better execpt for the nausea. I have a hard time convincing my

MD that that pain was from the cp. He told me yesterday that it was

muscle pain. Do you ever win with these guys? does everyone have a lot

of distention with this. I sometimes can not even get my clothes

buttoned. Got to go am very tired. The fatigue is unbelievable. Love

to all. Deb

Deb, Hi it doesn't sound like your dr. believes you . My daughter has been

through this and it took 3 dr.s before we found the right one that knew what she

was going through .Don't waste your time and money trying to convince these type

of drs. You know what you are feeling and you shouldn't have to convince him of

that. We have a friend in Okla. City Hospital right now that has just recently

been diagnosed with pancreatitis and she has alot of distention right now. Trust

me there are dr.s out there that will believe you . Don't give up .If your MD

isn't convinced of your pain now, then you will never win with him.

We will Keep you in our prayers,

deedee

[Guest guest]

Thanks DeeDee. I agree with you. My GI doctor days that this is

pancreatic pain. So, I believe him. Thanks for your support and advice.

I just wish there was someway to control or help this distention. It is

so uncomfortable. I think I can take the pain before this bloated

feeling. Take care. Deb

[Guest guest]

I'll try the dress thing. Good idea. Do you find that concentrated

sugar consumption is worse and difficult to digest. My MD's told me to

stay away from the concentrated sweets. I was spiking blood sugars after

eating candy to like 160-300 just depending. And it comes down on it's

own without any insulin, although I have Insulin for coverage if I need

it. Let me know what you think. Deb

[Guest guest]

Deb,

I am not on insulin yet. I cannot find a correlation with sugars for me.

Mainly fats! I do have to be careful with my sweets for my blood sugar but I

tend

to be more hypoglycemic than hyper. I haven't crossed that line yet! But it

is coming I know! I just don't know how long this old pancreas will hold out

before it burns out totally and stops producing insulin. My endocronologist said

it would be so much easier to treat me if it did! I had to agree with him!

Take care,

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

I think I agree Angie. They have told e the same thing. I just have

such a hard time with the hard sugar candies. I just crave them. And it

is not good for me because I have candida in my sputum, GI, and nails

very bad. Take care and keep in touch. Deb

[Guest guest]

Angie, I ran across a post today and wanted to revisit it. I had a

terrible attack over the last few days and have had terrible pain and and

distention . To the point I could not even get out of bed for awhile.

Terrible indigestion. My enzymes were elevated but not more than usual.

I had been eating sugar and fat hard candies and I mean a lot because of

the nausea. I can't eat the sugar free ones, can't digest the alcohol.

The doctors told me to go on liquids for a few days. I think sometimes I

am in denial. If the enzymes don't go up any more is this still

pancreatitis. My doctors tell me yes, that as the pancreas progresses

with disease it causes less enzyme elevation. Is this true? I am such a

skeptic. I need to get over this because it is hindering my recovery. I

don't take anything for pain because I have a megacolon and it reeks

havoc with it. Is the distention from the pancreatitis? They tell me it

is. How long do you stay on the clear liquids? I have only had this for

one year, from cystic fibrosis. You were kind enough to respond to me

before, I hope I hear from you now. Thank you for you time. Deb wcf/cp

[Guest guest]

Debbie,

I know that you addressed this to Angie, but I'm putting in my 2 cents

worth too. The more advice you get the better.

yes, as the disease progresses, enxyme elevations can decrease, but it

is still pancreatitis. Yes, pancreatitis also causes distention, usually

fron the inflammation of the panc. and sometimes it causes other organs

and tissue to inflame too. I don't know how you manage to deal without

pain meds. You should stay on the clear liquids for a few days, unitl

the pain recedes to its normal level (if you have daily pain) or goes

away (if you only have pain when an attack hits). If this levels of

pain continues more than a week, you should think about asking your

doctor to admit you as you'll need to go on an IV. It's too dangereous

to live on just clear liquids without some sort of nutrional supplement.

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.