hi,everyone

[Guest guest]

Hello,Good People,

Gosh,i see alot of you all are still having a rough

time lately.i hope everyone gets better soon! this disease really

sucks! the ups and downs,never knowing how things will be from one

day to the next...its really weird,but since i've recovered from that

acute attack following my ERCP,i have been feeling pretty good.before

this acute attack,i had been having pain everyday since around the

first part of july,now i've not even had to take a tramadol for

pain.i still take the occasional phenegran,sometimes just to be able

to eat,but mostly my appetite is picking back up.i almost ate a big

mac the other day,chickend out.who would have ever thought someone

could be " afraid " to eat? a few months ago,my father in law had a

barbecue,everyone was chowing down but me,he asked me why,i told him

i was scared to eat,he looked both offended and confused.i know it's

hard for other people to understand. but when your having a good

spell,like i am now,its kinda hard to beleive i was/am so sick.like

maybe the drs. are wrong and i don't have cp.any body else ever feel

this way or am i just weired? and i still have'nt went to see about

going to a pain managment dr.i'm afraid that since my pain is not

constant(yet) that they won't do any thing for me.but my drs. won't

give me anything stronger than tramadol and i'm worried that if

(when) i do have another attack

i'll be up s**t creek.so should i go ahead and see one? will they

treat me on a " as needed " basis?

sorry so long.......i really hope everyone who is feeling bad gets

better soon!!!

Cindy

[Guest guest]

Dear Cindy (and others),

I just joined this group and was browsing through the messages and

saw this. I can only say that I so completely understand everything

that you're feeling -- fear of food, fear of the next big one,

concern about the pain, fear of not having something on hand

beforehand... I had a series of small episodes that culminated in a

whopping attack while I was on my honeymoon in South Africa. To make

a long story short, I have been hospitalized three times (last time

was 2-1/2 years ago)and had an endoscopic ultrasound that showed an

abnormal pancreas (read damage). At various points along the road, I

gave up my gallbladder, alcohol, smoking and coffee (yes, it brings

it on for me).

While I am certain that many, many others have a lot of good and

likely more relevant advice, on the chance that it might be helpful,

I give you my thoughts, having just come through an episode the night

before last:

-- In terms of prevention, to a degree there is nothing any of us can

do; however, I have found that the following seem to be triggers for

me (either because they are hard to digest/breakdown or otherwise):

coffee (not tea), fresh orange juice, fish oil supplements (ie, Omega-

3). Note that the medical profession won't acknowledge that anything

other than alcohol or gallstones are triggers.

-- I am finding that prior to an attack, I can start to feel my

digestion slowing down a few days prior. I have not so far had the

foresight or control to act on that information, but I need to. I

have to remember to stop eating as soon as I feel strange at all.

Ironically, I suppose you really want to wait until your body is

truly hungry (not just appetite).

-- With respect to this last attack, I had had a higher than usual

level of sugar in my diet. Although everyone focuses on fat as the

thing that puts a strain on the pancreas, what about insulin (also

produced by the pancreas) production associated with eating more

sugar/higher carbs? If the organ has to work, it has to work. (Again,

unorthodox viewpoint.)

-- Am considering going to the 5-meals-a-day routine to try to limit

portions and give the old P a smaller workout at a time.

-- Re pain control, I had my second and third hospitalizations in the

UK and they gave me codeine pills, which I guard and mete out only

when absolutely necessary. Only issue with that is if you are in the

throes of an attack and you need to ingest and pill and water, it may

increase the severity of the attack or you may throw it up. Am

absolutely terrified about having to face the pain alone. I have

found that hot baths (highly recommended for pain relief associated

with child labor) do help, whether it's the heat or the buoyancy. My

wife and I now joke about the " nights I sleep in the tub " . Usually,

I'm in and out several times, until I am finally so exhausted that I

start dozing in the tub and am able to get into bed and sleep solidly.

It's somewhat presumptuous to throw all this out there, but I figured

I needed to start somewhere. I fully recognize that there are people

out there with far more severe symptoms (and some with far less), but

I am delighted to find " others like me " .

Cindy, I really hope you feel better and that some part of my

ramblings help you in some small way. It's really scary, but you have

to try to stay positive.

Best,

JBD

>

>

> Hello,Good People,

> Gosh,i see alot of you all are still having a

rough

> time lately.i hope everyone gets better soon! this disease really

> sucks! the ups and downs,never knowing how things will be from one

> day to the next...its really weird,but since i've recovered from

that

> acute attack following my ERCP,i have been feeling pretty

good.before

> this acute attack,i had been having pain everyday since around the

> first part of july,now i've not even had to take a tramadol for

> pain.i still take the occasional phenegran,sometimes just to be

able

> to eat,but mostly my appetite is picking back up.i almost ate a big

> mac the other day,chickend out.who would have ever thought someone

> could be " afraid " to eat? a few months ago,my father in law had a

> barbecue,everyone was chowing down but me,he asked me why,i told

him

> i was scared to eat,he looked both offended and confused.i know

it's

> hard for other people to understand. but when your having a good

> spell,like i am now,its kinda hard to beleive i was/am so sick.like

> maybe the drs. are wrong and i don't have cp.any body else ever

feel

> this way or am i just weired? and i still have'nt went to see about

> going to a pain managment dr.i'm afraid that since my pain is not

> constant(yet) that they won't do any thing for me.but my drs. won't

> give me anything stronger than tramadol and i'm worried that if

> (when) i do have another attack

>

>

>

> i'll be up s**t creek.so should i go ahead and see one? will they

> treat me on a " as needed " basis?

>

> sorry so long.......i really hope everyone who is feeling bad gets

> better soon!!!

>

> Cindy

>