Re: more trouble with pancreatitis to Rick

[Guest guest]

Rick wrote:

for the past month I've been having pancreas pain again.

the doctors don't think there's much wrong because my lipase is low, but it's

lower than it

could be because I've scaled my diet WAY back

What do you have to do to get to where you have some healing and get back to a

normal

lifestyle? i.e. eat normal food again. How come I was doing so well for a

while and then

all of a sudden started having problems, what did I do wrong?

Rick,

It's doubtful that you did anything wrong. You have to understand that chronic

pancreatitis is a chronic disease, that means it's reoccuring, and it will,

reoccur, off and on

all your life. It doesn't go away, or get all better, like some conditions do,

unless you have

radical surgery (a TP/ICT). And even with that, it's not a 100% guarantee of it

being cured

entirely.

I'm not sure that a person with chronic pancreatitis can ever eat all normal

food again. I've

not heard of anyone that has, unless they've had the TP/ICT. Your diet doesn't

dictate

what your lipase levels are going to be...those are affected by the amount of

inflamation

you have (or don't have) in your pancreas.

I hope you have a successful appointment with your gastro on the 15th. I don't

remember, but was the cause of your CP ever determined? That might have some

bearing

on why you are having problems again.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology.htm#Heidi

South Carolina

SC & SE Regional Rep.

PAI

Note: All information or advice is personal opinion only, and should not be

substituted for professional medical consultation.

[Guest guest]

Hi Heidi, - THANK YOU FOR YOUR REPLIES

To answer a few of your questions

Cause - nobody knows why, I still have no idea what happened. All I

know is that my ALT numbers kept rising, my GP at the time (I now

have a new GP who is GREAT) did nothing and then all of a sudden I

was seriously ill.. They think it was either the Depakote I was

taking every day, and have since stopped, a Gallstone (They took

out my Gall bladder - the stuff that makes the stones was all over..

whatever that stuff is) - or something else nobody knows what.

Another thing I think contributed greatly was stress. My wife went

Critical on April 15,2003 and for nearly a month it was a day to day

thing and not knowing if she'd live or not, and then I cared for her

24x7 - she didn't get out of danger until mid - October and about as

soon as she was ok, I crashed. At the same time that was going on my

mom was critical (she is ok now!!) and I was laid off my job. I can

guess, but I don't know why. I was also 335 pounds on Aug 1, 03 I'm

about 85 pounds less today.

My GP is definitely of the mindset that the enzymes aren't the all

in all - and she is really bright, but my Gastro doctors are not of

that mindset - they don't quite get it, and I've already fired one

Gastro doctor who was REALLY BAD, and this new Gastro doctor is an

excellent doctor/surgeon, but he lives and breathes by the lipase

level, and I keep trying to tell them it isn't totally accurate...

What can I say to them to convince them other wise.

I'm just totally ballistic about my diet which is helping me control

my pain, but I still have pain.. Some days are better (like yester

day and today) but some days really bad like Thursday - I was

downright scared Thursday - it was a rough day. I really want to

learn all I can about this so I make intelligent food choices, learn

how to manage this the best I can.

I read all kinds of things about supplements you should or should

not take - does the Association have any guidelines about this?

How much do I have to watch my protein intake? I know of plenty of

things that have no fat, but they are high in protein (I'm a vegan

now.. no meat or dairy - in trying to manage the pancreatitis -

just can't handle either for some reason and can't handle the soy

either right now..) like let's say wheat chex or something like

that - too high in protein.. so I stay away from things like that

too right now..

What about these proteolitc(sp?) enzymes to help you digest protein

anybody on those, should I be?

Anybody know if Coenzyme Q10 is worth the money, should I take it?

What effect does exercise have when you have pancreatitis??

Thank you so much! I have participated in several health related

forums in the past and most of them just jumped down your throat

when you didn't know something you should have, and this forum has

been great! Yall have been so concerned and compassionate and I am

so thankful for you.

I keep asking myself what I did to cause this - there are people

that I went to church with who actually think I must have done

something wrong for all these things to have happened. I've

searched my heart as much as I can and I just don't know. I know

God's been really good to me. Some of these things I don't know if

I'll ever understand. Thankfully my wife survived her ordeal last

year.

May God bless all of you richly and give you lots of peace and

healing.

Rick Nickles

p.s. I don't get all the email to the forum because I get too much

mail, so you can certainly email me directly anytime.. Thanks I do

check the forum from time to time..

-- In pancreatitis , " hhessgriffeth "

<hhessgriffeth@h...> wrote:

> Rick wrote:

> for the past month I've been having pancreas pain again.

>

> the doctors don't think there's much wrong because my lipase is

low, but it's lower than it

> could be because I've scaled my diet WAY back

>

> What do you have to do to get to where you have some healing and

get back to a normal

> lifestyle? i.e. eat normal food again. How come I was doing so

well for a while and then

> all of a sudden started having problems, what did I do wrong?

>

>

> Rick,

>

> It's doubtful that you did anything wrong. You have to understand

that chronic

> pancreatitis is a chronic disease, that means it's reoccuring, and

it will, reoccur, off and on

> all your life. It doesn't go away, or get all better, like some

conditions do, unless you have

> radical surgery (a TP/ICT). And even with that, it's not a 100%

guarantee of it being cured

> entirely.

>

> I'm not sure that a person with chronic pancreatitis can ever eat

all normal food again. I've

> not heard of anyone that has, unless they've had the TP/ICT. Your

diet doesn't dictate

> what your lipase levels are going to be...those are affected by

the amount of inflamation

> you have (or don't have) in your pancreas.

>

> I hope you have a successful appointment with your gastro on the

15th. I don't

> remember, but was the cause of your CP ever determined? That

might have some bearing

> on why you are having problems again.

>

> With love, hope and prayers,

> Heidi

>

> Heidi H. Griffeth

> www.pancassociation.org/anthology.htm#Heidi

> South Carolina

> SC & SE Regional Rep.

> PAI

>

> Note: All information or advice is personal opinion only, and

should not be

> substituted for professional medical consultation.

[Guest guest]

Hi Rick; I'm . You have been through a lot over the past 3

years. I can relate. I have also had the worst possible luck; life

altering, dont know if I can take it; bad stuff for the past 3 years

as well. It is a dreaful story and I wouldn't want to bore with all

the details. But i dont know why bad thigns happen, I beleive in

God, I follow my heart and try to do what is the right thing. I try

to help those who need and I am sincere in my empathy. Granted I

have never been an angel, but I have never hurt any body

purposefully in my life.

So here I am 3 years later, so many surgeries the anesthsia team

know what to stock for me without asking. I'm hoping to be on an

upswing now. I'm doing better, looking forward to returning to

work, its been 7 months or more I think. I eat what I think I can

at that time. Tomorrow may be totally different. I tried all the

different diets, vegan, macro, and some I made up and it didn't

matter. I have taken antioxidents and trace minerals but have never

heard of proteolytic enzymes, sounds interesting. I felt they did

improve my overall strenght and need to restock. I have tried to

eliminate as much synthetic, processed, foods as possible, with 3

kids.

I have been sick and seen by some of the best guys known. It took a

little while to come to the diagnosis of cp, after an ercp the

damage and defect was noted. My lipase NEVER went up. After an

ercp it went to 157, thats it, the highest ever and the docs have

held my panc in their hand and saw the head completely shrivled and

shrunken, looking like a walnut, as they described. I think that is

a pretty clear diagnosis of pancreatitis and never once has my

amalase or my lipase ever been elevated. If you want to prove it to

them go to the john hopkins web page, we have a link. They have a

great explanation print it out and give it to your doc. They cant

know everything, no body can. Its ok. I used to email my doc all

kids of articles, " lets try this " and stuff. He hates my

emails...lol.

I'm glad your wife is doing better. You have had a very stressful

time. So did I, my pancreatitis progressed very rapidly, shocked

the docs. I think is had a lot to do with the horrible time I had

in my personal life that was causing so much heart ache and stress.

Try to relax now, I hope things are getting better. I look forward

to finding our more about those proteolytic enzymes.

Warmly,

> > for the past month I've been having pancreas pain again.

> >

> > the doctors don't think there's much wrong because my lipase is

> low, but it's lower than it

> > could be because I've scaled my diet WAY back

> >

> > What do you have to do to get to where you have some healing and

> get back to a normal

> > lifestyle? i.e. eat normal food again. How come I was doing so

> well for a while and then

> > all of a sudden started having problems, what did I do wrong?

> >

> >

> > Rick,

> >

> > It's doubtful that you did anything wrong. You have to

understand

> that chronic

> > pancreatitis is a chronic disease, that means it's reoccuring,

and

> it will, reoccur, off and on

> > all your life. It doesn't go away, or get all better, like some

> conditions do, unless you have

> > radical surgery (a TP/ICT). And even with that, it's not a 100%

> guarantee of it being cured

> > entirely.

> >

> > I'm not sure that a person with chronic pancreatitis can ever

eat

> all normal food again. I've

> > not heard of anyone that has, unless they've had the TP/ICT.

Your

> diet doesn't dictate

> > what your lipase levels are going to be...those are affected by

> the amount of inflamation

> > you have (or don't have) in your pancreas.

> >

> > I hope you have a successful appointment with your gastro on the

> 15th. I don't

> > remember, but was the cause of your CP ever determined? That

> might have some bearing

> > on why you are having problems again.

> >

> > With love, hope and prayers,

> > Heidi

> >

> > Heidi H. Griffeth

> > www.pancassociation.org/anthology.htm#Heidi

> > South Carolina

> > SC & SE Regional Rep.

> > PAI

> >

> > Note: All information or advice is personal opinion only, and

> should not be

> > substituted for professional medical consultation.

[Guest guest]

Rick wrote:

> I'm just totally ballistic about my diet which is helping me control my pain,

but I still

have pain.(snip) I really want to learn all I can about this so I make

intelligent food choices,

learn how to manage this the best I can.

I read all kinds of things about supplements you should or should not take -

does the

Association have any guidelines about this?

How much do I have to watch my protein intake?

What about these proteolitc(sp?) enzymes to help you digest protein anybody on

those,

should I be?

Anybody know if Coenzyme Q10 is worth the money, should I take it?

What effect does exercise have when you have pancreatitis??

Rick,

You might take a look at our diet tips sheet in the " Files " section, under the

title of

" Nutrition " if you haven't already. This has lots of ideas about foods suitable

for the

pancreatitis diet, ways to prepare them and handy information like that.

Most of our doctor's recommended that we take multivitamins to help with some of

the

nutrient loss. The children's variety works just as well as any, and is milder

on the

stomach because they're chewable. I take a long list of supplements, both to

replace

vitamins and nutrients that I lose by malabsorption, and others (antioxidants)

that are

known to help with pancreatitis pain. The list includes, Beta Carotene, Vitamin

C, Vitamin

E, Selenium, Methionine, Fish Oil Capsules, Grapeseed, Magnesium, Vitamin B

complex

and Folic Acid, to name a few. Additionally, I take 5 separate vitamins and

minerals that

help me with my diabetic needs. The antioxidants I take are those recommended

by a

pancreatitis research program from the Manchester Royal Infirmary in the UK.

Studies

have shown that these particular vitamins and amino acids, taken in a precise

dosage,

have helped to reduce pancreatic pain from CP.

In regards to exercise, I think that any moderate exercise that doesn't strain

the abdominal

muscles is necessary, and I personally try to keep active whenever I can. I

have found that

activities like walking, biking, rollerblading, swimming, light aerobics and

yoga all seem to

help me, and on good days, kayaking has been fun, too. I don't attempt any

exercise

when I am having significant CP pain, other than walking, and some days even

that's

hard!!! You really need to find what's suitable for you, and what you can do

without

bringing on more pain. I know some people work with exercise machines,

adjusting the

activities to suit their needs. I live in a climate where outdoor activities

are available nearly

eight months of the year - October through May. During our summer months it is

too hot

to much of anything outdoors, except swimming.

Protein is additionally difficult for people with CP to digest, as the fat is.

My doctor has

recommended that I try to go easy on the protein for this reason. I haven't

heard about

these enzymes you speak of that help digest protein, but I would be VERY

interested in

hearing more about them. I have some major issues with protein as far as my

diabetes is

concerned, and would love to find a supplement that might help me with that.

I hope I've helped to answer some of your questions in regard to my own

experiences. I

must stress that each of us is an individual with different pancreatic problems,

and

sometimes what's suitable for one, isn't appropriate for another. You will have

to be the

judge of your own health care limitations.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology.htm#Heidi

South Carolina

SC & SE Regional Rep.

PAI

Note: All information or advice is personal opinion only, and should not be

substituted for professional medical consultation.