Re: time between attacks - today!

[Guest guest]

Hi Cindy

Having an attack today.Not a full blown one but enough to

keep me in bed all day.I ate a small brownie last night which is

probably the culprit.So frustrating not being able to eat fun

foods!!!!!! If I get cold or real hot,I'll have an attack,also.My

last attack was the second week of Sept.and it was a doozy.I was in

bed 3 days.

Thank God for pain meds!I couldn't do it without them.I

told my doc if I had to deal with the pain of a full blown attack all

the time,i would shoot myself.He said " You will call me first,right?I

replied " Yeah,sure.you'll be the first to know.

Have a great night everybody!

Pete(Fla.)

>

> hi,everyone,

> i hope everyone is doing well today.i just have a few

> questions.i know we are all diffrent in how frequent we have

> attacks/flare-ups, but since i had that bad attack in sept. after

> ercp, 2 days in hospital,i have been feeling alot better.in fact i

> haven't felt this well in about a year. but i still wake up

> everyday,and everytime i eat,just waitng for it to happen again.i

have

> even eaten a few " no-no " foods with no bad effects.not that i want

it

> to happen,but have any of you at the begining of your disease think

> maybe the drs. are wrong and that you don't have cp? how long have

any

> of you went between attacks? i know this sounds silly,like i'm in

> denial,maybe? the only symptom i'm having is a little more weight

> loss,even tho my appetite is back to normal.some nausea,but i eat

> anyway. thank you for answering.and a pain-free day to all.

> cindy

>

[Guest guest]

In a message dated 10/26/2005 7:29:46 PM Eastern Standard Time,

she_remembers@... writes:

And now of course I'm questioning

my own sanity

Hi , I think it's crazy to doubt your sanity

Best wishes, Poncho - GA

[Guest guest]

Hi guys...and gals of course!! I'm reading this thread with " rapt "

interest because the way that the sleeping dragon effects the three

that I've read from Cindy, Pete and Theresa is SO COMPLETELY

different from what I experience. And now of course I'm questioning

my own sanity (LOL!!) but then I KNOW that this disease has

different courses of action for everyone.

To me, and this is just from what I've gleaned in the past two years

since my own sleeping dragon (demon from hell is more like it) awoke

and hit me over the head like a lead balloon, it seems that what you

three experience (and please correct me if I'm wrong) is what they

would refer to as Recurrent Acute Pancreatitis?!? Now, whether that

is " on top " of being also dx'd as chronic...well, I guess I need the

experts to chime in on this one.

The reason I question my own sanity on this is that I sometimes

believe that I've also got something else going on in addition to

the cp. Maybe not, because I DO know of a close relative to a

friend at my old workplace (and that still seems strange to say

after being there for 18 yrs!) who seems to have the same symptoms

that I do but since he is further along in the disease process he

has been unequivocally dx'd with cp due to calcification showing up

on visual imaging studies, etc., whereas, I'm still in the process

of (1) finding a good doctor (I've got a call in, in fact, to the

doctor that this guy sees, and (2) I haven't had an MRCP, CT or

anything remotely resembling any kind of visual imaging study done

in over a year now.

Long story and I know I've talked about it before but not worth going

into here again EXCEPT to say that the doctor that I was previously

seeing (the egghead that referred me to the complete egghead in

Boston (unfortunately having a very good " pedigree "

associated/affiliated with Harvard University, etc., who preclaimed

that I do not have cp, he doesn't know what I have or where my pain

comes from and this was all done WITHOUT so much as EXAMINING ME let

alone ordering up MRCPs and the like)......whew and I said I wasn't

going into it here. Ok, where was I?

Ah, yes...the doctor that I WAS seeing has not returned my phone

call and it has now been FOUR weeks. I was to see him on an " as

needed " basis..and since my symptoms have gone thru a radical change

of late, i.e., the burning, " battery acid " feeling, the use now of a

frozen water bottle vs the almost constant usage of a heating pad,

etc., the actual heat that I can feel emanating from my abdomen to

the point that I even feel hot on the forehead but I don't ever seem

to have a temperature. Surely this change in symptoms certainly

warrants an " as needed " basis the way I see it anyway. This

monstrous swelling of my abdomen, feet, ankles and calves has gotten

so bad that I've actually woken up from a sound sleep in the middle

of the night my feet feel like they're going to explode!! I have a

call into my PCP because he prescribed something called Amiloride

and it just seems that after I take it for a couple of days that my

symptoms get worse.

But it is JUST SO HARD to tell what anything is doing or having an

effect on because of the nature of the way this goes for me and that

is DAILY pain, nausea, etc., shortness of breath lately even after

doing something as simple as making a bed. And that only happens

when I'm feeling up to it...I've been pretty bad off the past 4 days

or so and I could do little more than lie on the couch and not

moving so as not to awaken the " little beast " any further!! I need

to do some research on Methadone as well because it seemed that it

was working quite well in the beginning of this and it does for the

pain but I'm noticing a pattern (I think!) of taking it and then an

hour or so later the " burning, battery acid feeling " starts again.

So, now I'm wondering if it's the same with Methadone as it is quite

frequently with Morphine in those with SOD and that is that the drug

can actually make the sphincter spasm and actually CAUSE an attack.

God this is just too hard sometimes...and thank you all for being

there. Just knowing that really helps, it truly does and I want you

all to know that.

Anyway as per usual this email is getting too lengthy and thanks if

you've read along this far but I guess what I'm looking for here is

the obvious comparison of symptoms (and I have asked this question

before and yes, some of you have said that the " battery acid "

feeling is definitely a part of what you go thru)..but more

importantly, I guess I just want to clarify for myself a bit better

as to how OFTEN you are sick. Is it a daily thing? With periods of

feeling well in between as Cindy, Theresa and Pete experience? And,

IS that the classic way that acute recurrent pancreatitis presents

as opposed to chronic? AND, if chronic....(and I'm pretty sure tha

answer to this is yes) but can those with cp have attacks that are

as life threatening as those that have recurrent acute pancreatitis?

I mean I obviously know that there can be some pretty extreme

exacerbations of what I live with daily....but I don't get much of a

break in between anymore. Is this typical chronic? To be ill of

varying degrees of severity but EVERY DAY??? In other words does it

sound like I'm having an atypical experience? And if so, then there

must be something else going on as well. I appreciate your

responses and again I apologize for the rambling here but sometimes

I just sort of " type out loud " as I'm thinking. It's probably quite

confusing and I apologize...I just need answers and I need a

DOCTOR!!!!

Take care..I'll check back later

> >

> > hi,everyone,

> > i hope everyone is doing well today.i just have a

few

> > questions.i know we are all diffrent in how frequent we have

> > attacks/flare-ups, but since i had that bad attack in sept.

after

> > ercp, 2 days in hospital,i have been feeling alot better.in fact

i

> > haven't felt this well in about a year. but i still wake up

> > everyday,and everytime i eat,just waitng for it to happen

again.i

> have

> > even eaten a few " no-no " foods with no bad effects.not that i

want

> it

> > to happen,but have any of you at the begining of your disease

think

> > maybe the drs. are wrong and that you don't have cp? how long

have

> any

> > of you went between attacks? i know this sounds silly,like i'm

in

> > denial,maybe? the only symptom i'm having is a little more

weight

> > loss,even tho my appetite is back to normal.some nausea,but i

eat

> > anyway. thank you for answering.and a pain-free day to all.

> > cindy

> >

>

[Guest guest]

My attacks are every day and then some. I have some days that are decent,

some days that are questionable and then some where I want to crawl up in a ball

and die!!! My cp is a daily battle with some days that are actually pretty

decent. Those days are getting farther and farther apart.

My doctor described cp as a progressing, debillitating illness. Every day

can get worse and each day has its own horrors. Some days you think I can manage

this and some days you can't. It is not necessarily acute recurring

pancreatitis but chronic pain that sometimes responds to medication and

sometimes

doesn't. Mine has progressively gotten worse over the past year and 1/2 and

after

my surgery in June has gotten much worse. Now that I am facing my second

surgery I am actually looking forward to having it to releive any of the pain I

am

experiencing.

When my pain man. doc called my surgeon he told her that cp pain can worsen

daily and that it is normal to need more and more pain meds as the condition

progresses. That is what chronic pancreatitis is.

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 have had the battery acid feeling also and what my GI has told me

is that the CP affects the acid production or the acid production

affects the CP (can't remember which) and that I have to take

Priolosec every day to reduce the acid production. It really helps

and the acid feeling is much less. I was orignially diagnosed with

the recurrent acute but after three major attacks, pseudocysts, and

genetic testing it was changed to Chronic a year ago. NOw I don't

know if the acid feeling the same as what you feel but I do know

taking the prilosec every day does help. It is over the counter

medication (it say a 14 day course of treatment which my dr says to

use everyday anyways). It is not real cheap the 14 day course is

about $13 but it does help with the burning. It might be worth a try

seeing it is over the counter medication. I hope this helps and you

are feeling better.

Theresa

-- In pancreatitis , " she_remembers "

<she_remembers@y...> wrote:

>

> Hi guys...and gals of course!! I'm reading this thread with " rapt "

> interest because the way that the sleeping dragon effects the three

> that I've read from Cindy, Pete and Theresa is SO COMPLETELY

> different from what I experience. And now of course I'm

questioning

> my own sanity (LOL!!) but then I KNOW that this disease has

> different courses of action for everyone.

>

>

[Guest guest]

> > >

> > > hi,everyone,

> > > i hope everyone is doing well today.i just have a

> few

> > > questions.i know we are all diffrent in how frequent we have

> > > attacks/flare-ups, but since i had that bad attack in sept.

> after

> > > ercp, 2 days in hospital,i have been feeling alot better.in

fact

> i

> > > haven't felt this well in about a year. but i still wake up

> > > everyday,and everytime i eat,just waitng for it to happen

> again.i

> > have

> > > even eaten a few " no-no " foods with no bad effects.not that i

> want

> > it

> > > to happen,but have any of you at the begining of your disease

> think

> > > maybe the drs. are wrong and that you don't have cp? how long

> have

> > any

> > > of you went between attacks? i know this sounds silly,like i'm

> in

> > > denial,maybe? the only symptom i'm having is a little more

> weight

> > > loss,even tho my appetite is back to normal.some nausea,but i

> eat

> > > anyway. thank you for answering.and a pain-free day to all.

> > > cindy

> > >

> >

>