Date: Sat, 10 Jan 2004 01:42:35 -0000
From: "Robert" <robert@...
Subject: Pat The Irishman!!!!!!! Must Read!!!!!!
Dear Pat and All,
Got a funny for you!!!
ENJOY
Robert
A Founding Member of TPP,
Date: Sat, 10 Jan 2004 00:32:31 -0000
From: "Robert" <robert@...
Subject: Brittle Diabetes
A Few Links,
Thanks,
Robert
A Founding Member,
Date: Sat, 10 Jan 2004 00:18:59 -0000
From: "Robert" <robert@...
Subject: Mortality and outcome of patients with brittle diabetes
Thanks,
Robert
A Founding Member
Date: Sat, 10 Jan 2004 00:01:51 -0000
From: "Robert" <robert@...
Subject: "BRITTLE" DIABETES
More Stories,
Thanks,
Enjoy,
Robert
A Founding Member
Date: Sat, 10 Jan 2004 00:06:55 -0000
From: "Robert" <robert@...
Subject: "BRITTLE" DIABETES
Thanks,
Robert
A Founding Member,
Date: Fri, 9 Jan 2004 18:50:49 -0500
From: "Tom Lowe" <talwaste@...
Subject: Denise Re: Re: hello... another high pain
Friday/// Denise
I hope you don't have to go to the er........ only you know. But
i'm with
you all the way........ ok? Is there anything else i can do beesides a
candle,, white light... and prayer???????????????????? love you,
jan xox
Date: Fri, 09 Jan 2004 23:37:52 -0000
From: "Robert" <robert@...
Subject: Brittle Diabetes A Story
This is a start of my research,
Enjoy,
Robert
A Founding Member,
Date: Fri, 09 Jan 2004 23:26:24 -0000
From: "Patrick (Pat please)" <pcassotoo@...
Subject: Re: Pat
Jac!
Thank you so much for your kind thoughts, I never cease to be amazed
at the amount of love and caring and support that literally oozes
from the very pores of the Family at TPP. I have never experienced
such generosity in my life prior to this.
This is "Kindness of the Soul", at least that's how I term it.
It has made the unbearable, bearable, well, almost.
May God bless you and keep you well safe and well.
Pat
Date: Fri, 09 Jan 2004 22:46:44 -0000
From: "Robert" <robert@...
Subject: Re: Brittle Diabetes?/// Vicky
Dear Vicky,
I have brittle diabetes. My insulin does a poor job controlling it.
It goes from extreme highs to extreme lows. Nothing make sense about
anymore. I will try to get some information out on it tonight. Right
now, I must get some food in me or it is going to be very low. I can
feel the shakes coming on from it. It all came from the controlled
burn-out that I did last year.
Thanks, Robert
A Founding Member,
Date: Fri, 09 Jan 2004 22:32:32 -0000
From: "Vicky" <victoria@...
Subject: Brittle Diabetes?
Hi everyone,
I was just wondering what is the difference between diabetes and
brittle diabetes?
My partner has diabetes and he only has 2cm left of his pancreas
left and we have been told it will burn out within the next 2 years
(not to sure what that means).
So I was just curious about the diabetes thing.
Take care
Vicky (UK)
Date: Fri, 09 Jan 2004 22:38:53 -0000
From: "Robert" <robert@...
Subject: Re: hello... another high pain Friday/// Denise
Dear Denise,
Sorry things are going sooo baddd right now!!! I am sending out
special prayers just for you!!! I hope and pray this mega pain soon
ends in relief just for you!!!!
Tears for you Sister,
With MUCH LOVE,
THOUGHTS AND PRAYERS,
Robert
A Founding Member,
Date: Fri, 09 Jan 2004 22:23:07 -0000
From: "Robert" <robert@...
Subject: Re: Hello Everyone Thanks
Chiggy,
Please take your time and get better. The pain meds will effect your
eyes, head and body for a while. I pray things will continue to
improve for you. Give your family a hug for me!!! They are your Heros
right now. That little girl of yours is something else.
BEST WISHES TO GET WELL,
Robert,
A Founding Member,
Date: Fri, 09 Jan 2004 22:21:11 -0000
From: "Vicky" <victoria@...
Subject: To Pat
Hi Pat,
I was so pleased to read your post regarding your sister Maura
coming home. I bet you can't wait. Someone upstaire's is whatching
over her.
I hope you are keeping well. Love to you and your family.
Take care
Vicky (UK)
Date: Fri, 09 Jan 2004 21:57:55 -0000
From: "Patrick (Pat please)" <pcassotoo@...
Subject: Jan, Robert + ALL of the TPP Family
PRAYER IS WHERE THE LORD IS AT.
I have some GOOD news tonight, Maura is coming home tomorrow.
She has done very well but is still very weak. They will be giving
her some chemo after all, but she has not been told how much or how
often.
What matter, that she is coming home is all I want to hear just now.
Robert, please thank your congregation for all their prayers and kind
thoughts over these past days and dark times, now past and replaced
by HIS LIGHT! Thank you Robert.
Jan, blessed indeed are those you share that WHITE LIGHT with, it to
must come from HIM. You are his vessel in this life.
Thank you Jan, my sister, my load has been lighter with your help.
I have told Maura of all of the prayers and messages of good will and
kindness sent to her by so many of the TPP Family. She was touched to
the point of tears, and she is gratful to you all.
God bless you all and keep you safe and well
Pat
Date: Fri, 09 Jan 2004 22:12:02 -0000
From: "Robert" <robert@...
Subject: Re: Jan, Robert + ALL of the TPP Family
Pat,
Brother, you are a bundle of Great News!!! I will pass this along. We
still want to safeguard her with the POWER OF GOD!!!!! You have made
this cold damp ice filled day into A ALL MIGHTY DAY!!!! Reguardless
of what she has to go through, SHE IS WITH US!!!!
Thanks to everyone for their PRAYERS!!!,
We continue our PRAYERS!!!
Robert
A Founding Member,
Date: Fri, 09 Jan 2004 21:37:57 -0000
From: "Robert" <robert@...
Subject: Robert....... it's jan & ALL
My prayers are that none of you have to face diabetes, let alone
BRITTLE DIABETES!!!! The holidays are always a STRESS TIME and we all
know stress breeds PANCREATITIS.
God Bless All,
Robert
A Founding Member of TPP,
Date: Fri, 09 Jan 2004 21:31:32 -0000
From: "painquestions" <painquestions@...
Subject: Hello Everyone Thanks
Sorry I was so negative on my last time here. I was at the end of my
world. I am reading your information board. I thank you all for
keeping me and my family in your prayers. I will write more when this
medicine clears my head. This new computer screen hurts my eyes right
now. Thank you all so much. You all are in my family prayers. I want
to get better. Chiggy
Date: Fri, 09 Jan 2004 21:23:02 -0000
From: "Robert" <robert@...
Subject: Re: Nortriptyline capsules/// Pat
Hi Brother Pat,
If we were to get the list that did not mess with pancreatitis it
would probably be a very short list!!!! I think that anything with
alchol in it needs to be on the list. OTC Cough meds should top the
list! Hope you are feeling on top of the world!!!!
Praise be to HIM,
Robert
A Fonding Member of TPP,
Date: Fri, 9 Jan 2004 15:29:52 EST
From: DeniseHallock@...
Subject: Re: Re: {{{Barbara}}}
Barbara,
As much as you hate to go in and wait... You better go. The pain is
only
going to get worse as you get more dehydrated. I can tell you that
from
experience. I am so sorry you are having so much pain, I wish I
could do or say
something to make you feel better somehow, but I know there really
isn't much that
can be said or done here on the board. Aside from telling you, you
are in my
thoughts and prayers. And if there is anything I can help you to
find as far
as research or anything is concerned, just let me know!
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
Co-Owner ~ The Pancreatitis Place
Date: Fri, 09 Jan 2004 21:01:19 -0000
From: "Patrick (Pat please)" <pcassotoo@...
Subject: Re: Nortriptyline capsules
Brother Robert!
Praise be to HIM that has ALL the POWER, HE is GOD, Praise HIM.
Reading the information for the GOOD Sister JAN, Hello Jan!
I wonder if it would be easier for all concerned if you just
published a list of drugs that DO NOT have problems when taken with
this med!!!!!
It's a crazy list, how does the FDA ever clear these drugs? And,
moreover, why do doctors prescribe them for patients with all the
complications that the GOO JAN has?
Jan, I do believe that you are probably taking ALL of that list, not
just one or two.
Regards
Pat
Date: Fri, 09 Jan 2004 20:24:01 -0000
From: "Robert" <robert@...
Subject: Nortriptyline capsules
Dear Jan,
This is what I have.
Thanks,
Robert
A Founding Member of TPP,
Date: Fri, 09 Jan 2004 19:17:26 -0000
From: "Robert" <robert@...
Subject: lisa and your boys
Lisa,
It is not your boys causing these feelings. It is the pain! They just
happen to be there now. If your pain is not brought under control it
will be everyone you come in contact with in the future. Anyone
around you will get on your nerves. Then it will be every minor
problem. The stress will build up day by day causing depression.
Stress leading to more attacks of pancreatitis. The endless cycle
will start. Also the crappy weather you are having does have an
effect on your health. My prayers with you and your doctors that you
end this cycle TODAY!!!!
Robert
A Founding Member,
Date: Fri, 9 Jan 2004 12:12:16 -0800
From: "Lisa Chambers" <chamberslm@...
Subject: Re: lisa and your boys
Robert,
You are right. My mother and my husband are getting on my nerves
too! I just finished telling my mom, I was going to unplug the phone
for the weekend and I would let family know that if it is emergency
they can call my cell phone. I just don't want to even hear the
phone ring. It is really weird but when the phone rings, my heart
just jumps! I know it sounds selfish but I need to think about me
right now. I am also hoping the dr. can help with the pain and
depression. I already take something for the depression but maybe I
need something stronger.
Lisa
Simi Valley, CA
Date: Fri, 9 Jan 2004 11:05:34 -0800
From: "Lisa Chambers" <chamberslm@...
Subject: Re: Re: EnzymesFOR LISA
Robert,
the dr. started me on 25 mg. and also gave me a script for 50mg to go
up to. I had the itchies too. The bad part was the area where the
patch was, it got a very angry red color and was so raw it would
bleed. It took weeks to go away. I also couldn't sleep with the
patch on it made me itch so bad! and it gave me the jumpies! The dr.
thought is was possibly because I have an allergy to latex.
Lisa
Simi Valley, CA
Date: Fri, 9 Jan 2004 10:40:27 -0800
From: "Lisa Chambers" <chamberslm@...
Subject: Re: the patch llisa patRe: Re: EnzymesFOR LISA
Jan,
I wish the lack of body fat was the case, I still have too! I had
terrible skin reaction to it that took weeks to clear up after my 1st
attempt at using them.
Lisa
Simi Valley, CA
Date: Fri, 9 Jan 2004 10:29:20 -0800
From: "Lisa Chambers" <chamberslm@...
Subject: Re: Re: EnzymesFOR LISA
My dear sweet Pat?
I guess maybe I never I told you this. I have tried the patches.
However I had a really bad skin reaction to them. It took weeks for
the skin to clear up after I only wore the patch for a few hours. I
need to see if there is something else that I can take. The funny
thing is, is that I never have this bad before, or this constantly
with this level of pain. I don't know what is going on. I see the
doctor today so we will go from there. I am sorry for the post being
Date: Fri, 9 Jan 2004 10:38:16 -0800
From: "Lisa Chambers" <chamberslm@...
Subject: Re: lisa and your boysRe: Re: EnzymesFOR LISA
Jan, Thank you for posting. I always enjoy reading your post also.
My Boys are 3 and 6 years old. They are the apple of my eye, but boy
it is hard when you feel crappy and just want to be alone. If you
send them to play in their room then you feel guilty for sending them
away. I see the doctor today and hopefully I will get some pain
relief. Thank you again for posting, by the way California is not
so sunny today. It is real ugly outside right now.
Lisa
Simi Valley, CA
Date: Fri, 9 Jan 2004 10:06:43 EST
From: DeniseHallock@...
Subject: hello... another high pain Friday
Hi Everyone,
Just wanted to poke my head in for a bit and say hello. I've been
trying to
keep myself calm and as in active as possible, to kind of ward off the
inevitable, but it isn't working. I am relatively sure I am heading
to the hospital
tonight if not tomorrow. Everything I eat or drink makes me hurt
again...
right down to water... right back to where I was back in Oct. Not
where I want
to be. I guess we can only put things off for so long though before
they start
to backfire on us huh?
I did manage to get my dryer delivered and Tyler will get to his
initial
psychologists appointment, that way I can have his foster parents put
on his list
so they can take him to his appointments if I am unable to. (I hope
that is
not the case for awhile yet, but given how I am feeling right now...
I am not
holding my breath.) It would be nice if they could do the triage and
stuff at
the hospital and once you are all hooked up and feeling better, they
could
just assign a nurse and doc to come to your house every 3 or 4 hours,
that way
you aren't taking up so much space. You could still have all of the
bells and
whistles hooked up to you so they could monitor you... just not have
to be in
there. Oh well... lol.
Well, I better go get dressed and take Tyler to his appointment,
don't want
to be late. Then I can come back home and lay back down, maybe.
Take care Guys...
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
Co-Owner ~ The Pancreatitis Place
Date: Fri, 9 Jan 2004 09:33:30 EST
From: DeniseHallock@...
Subject: Re: Chiggys progress
Christina,
Please give Chiggy {{{HUGZ}}} from me, and tell him if he can't get
here that
its ok, we all understand! Its going to take a few days before he
even feels
like staying awake for more than a few minutes at a time, let alone
getting
on the computer to read email. Trust me on this one. I take my
laptop with me
everytime I go into the hospital and I seldom get much done other than
talking in chat or instant message to ReeAnn or a few of my other
friends online,
depending on what time I wake up.
We will wait for you Chiggy, never fear TPP will always be here!!!
{{{HUGZ and Prayers}}} for your speedy recovery...
Your friend at the other end,
Denise
Denise Hallock in Michigan
Co-Owner ~ The Pancreatitis Place
Date: Fri, 9 Jan 2004 04:37:31 -0500
From: "Tom Lowe" <talwaste@...
Subject: Marisa Re: Re: Is it possible? With God
Everything Is Possible
Well. laddddy......... you deserve a few good ones!!! days that is.
Try
not to overdue all the great feelings that come with it.......... i
don't
wnat you to have a setback. So happy for you!!!!!! love, jan xox
Date: Fri, 9 Jan 2004 04:35:36 -0500
From: "Tom Lowe" <talwaste@...
Subject: the patch llisa patRe: Re: EnzymesFOR LISA
Pat .... i'm so glad the patch is working for you. You are one of
the
lucky ones! I don't have enough body fat to use it properly..........
as
some women are too thin to use it? Maybe that's the case with lisa???
Denise knows....... it doesn't work for her. Just a
thought...
love, jan xox
Date: Fri, 09 Jan 2004 06:44:17 -0000
From: "painquestions" <painquestions@...
Subject: Chiggys progress
Dad had many tests run today. A catscan, ercp, x-rays, bloodtests and
several others. They made him very sick. They took him off ice also.
They increased his demerol and changed the iv bag to a white liquid.
Put him on new medicines and depression medicine. He was very sick
today after the ercp light machine. Please forgive if I do not know
the right words for these. The doctors say he would have died if he
had not been found when he was in the bathroom. He went in shock from
pain and passed out and shaking bad. I forgot to tell this before.He
has much to improve again. He can not speak well with sore throat and
on heavy drugs for pain now. It is 12:40am now and I must sleep. Mom
and I will go straight to hospital in the morning. Mom is very worn
as she has been with him and not sleep for a long time. Keep pray for
my dad.He has his laptop. He will be with you tomorrow as he learns
new computer. It was set to run tonight. He tried to look at the site
board. He was unable to stay alert. I can not stay alert.
Christina daughter of Chiggy
Date: Fri, 09 Jan 2004 08:10:59 -0000
From: "Patrick (Pat please)" <pcassotoo@...
Subject: Re: Chiggys progress// FOR CHRISTINA
Hello Christina!
This is Pat, the International Moderator at TPP.
Thank you for the update on your father Chiggy, I am glad to hear he
has all these tests over now.
the worst of these tests is the ERCP, this test involves touching the
pancreas at least. Sometimes, the probe and some dye has to enter the
Pancreas also.
The Pancreas is a very angry organ in the body. It is like a mad man
that someone rubbed hot chillie peppers in hiis eyes!!
It goes Loco Loco when the doctors touch it, Senor Pancreas screams
and roars and tightens up completly. It tries to punish anyone it can
because it is so angry. Unfortunatly, Chiggy is an easy target for
Senor Pancreas!
Christina, please tell Chiggy that everyone on the board at TPP is
praying for him, he is very dear to our hearts, all of our TPP Family
are very precious to us. We must always assist and support each
other.
Whenever one of our Family is in bad ppain, we all feel the pain and
share the pain to help our brothers and sisters.
Please, tell Chiggy to become much better before he tries to be with
us on the board, tell him that he is already here with us in our
hearts.
Christina, please tell your mother that we are praying for her also.
It is very important that she get as much rest as she can and to look
after herself. We do not want for her to be sick and in hospital too.
Makke sure that all of you takke care and keep safe. You must not
overdo things. This illness puts great strain on the familly as well
as the patient. We are praying for all of you also.
God Bless you all and keep you all safe and well,
Pat,
in Ireland
International Moderator
ThePancreatitisPlace
Date: Fri, 9 Jan 2004 04:25:31 -0500
From: "Tom Lowe" <talwaste@...
Subject: lisa and your boysRe: Re: EnzymesFOR LISA
Thank God for little boys and all the mischief they get into. I hav e
2
grown ones of my own! Now.......... a grandmother but i preferred
to be
called MomMom. Kids sense when something is wrong and they
try in
their own sweet way (?) to do what they can to help.... Ya gotta love
m.................! I've been reading your posts and i'm sorry
you've been
where you have. (in pain) Hhopefully......... now some relief??? How
old are
your boys???? Mine are 22 and 20 going on 3!!!!! yrs old that is. It's
difficult for a son to see his mom in such grief and not be able to
help
her. That's what my guys say. They tell me they remember it all
along
time ago.... and won't forget , either. Now, my oldest..... Jason is
showing signs of panhcreaatitis..... and he refuses to do anything
about
it! Like Pat said...... ( i think) they are grown now and have to
make
decisions on their own. Just treasure the good days you have with
them.......... those are the blessings we have . You are quite a
delight on
the posts........ and i enjhoy reading them. I live in
florida......
where the warmth of the sun is refreshing and healing..........
just llike
CA????? Take care of YOURSELF........ love, jan xox
Date: Fri, 09 Jan 2004 04:57:16 -0000
From: "Robert" <robert@...
Subject:
Dear Marisa,
Miracles happen all the time!!! God does preform them!!! I hope and
pray that he has done this for you and it continues. No one deserves
this horrible disease.
No one,
Robert
Date: Fri, 09 Jan 2004 01:57:10 -0000
From: "Robert" <robert@...
Subject: Pancreatitis Causing Drugs Update
I ran across another unmarked disk. Surprise!!!
Hope this helps!!!
Robert
A Founding Member
Date: Fri, 09 Jan 2004 01:50:57 -0000
From: "Robert" <robert@...
Subject: THE HIPPOCRATIC OATH
Back to the Basics.
Robert
A Founding Member,
Date: Thu, 8 Jan 2004 17:09:24 -0800
From: "Lisa Chambers" <chamberslm@...
Subject: Re: Re: EnzymesFOR LISA
Pat,
Thank you again. No I am not seeing a pain management doc, yet. My
regular Internal meds doc has always taken good care of me. In fact
in talking Dr Lo he was very impressed with the kind of care and
treatment I have received by Dr. Phan. He is also a wonderful
compassionate man. He has had a hard life. I think I have told you
before that I have known Dr. Phan for many years, he was actually my
mothers Dr before I switched to him. He was born in Vietnam and was
separated from his family when he only 6 yrs old. He spent many
years in a camp for refugees and the stories he can tell are
horrific! I am seeing him tomorrow and I know he will help me. He
is such a kind, kind man. I have personally witnessed him giving an
elderly lady the money for her heart medications when he found out
she had stopped taking them because she didn't the money for them.
He will help me with my pain. Today I have had to take 2 of my pain
pills and 2 of the muscle relaxers with 2 of the Xanax all at the
same time just so I can walk to the bathroom. I am so drugged up and
I am still sitting here in pain. The pain feels like someone is
reaching inside of me and squeezing my pancrease! I feel so bad
because today is really bad day for me pain wise and I don't have any
patience for my boys. I keep telling them I love them but I just
want it quiet. They are so young it is hard for them to keep still
or quiet for very long. I love them so much! My little one is just
a little bug today wanted nothing but hugs and kisses, and he keeps
coming up to me because he wants to "twickle" me (his word for
tickle). I am so blessed to have them! I am rambling on and on.
It must be the meds.
Lisa
Simi Valley, CA
PS. I posted the other day about my husbands driving be so bad he
can make anyone car sick. When I kept complaining to him while
driving to the doctors he told me to shut up because he was a good
driver. Well....he is such a good driver he got a speeding ticket
today! The officer clocked him an 93 miles per hour in a 65 miles
per hour zone. Luckily he put down he was only going 80 miles on the
ticket or he would have been in even bigger trouble!
Date: Fri, 09 Jan 2004 00:03:13 -0000
From: "Patrick (Pat please)" <pcassotoo@...
Subject: Re: Is it possible?
Hell Marisa,
Praise be, thank you Lord, for granting Marisa such wonderous releife
and new hope in abundance for all us sinners!
Seriously Marisa, I am pleased, almost beyond words that you have
had this pain and hopefully symptom free period.
I am equally pleased that you have returned to us to share your good
fortune, you bring hope beyond measure to all of us.
Perhaps you will also share with us the name of the doctor that
played an important role in this peace and the name and location of
your hospital. We can include them in our database for others to seek
out.
I hope your great status continues for as long as possible. Given the
great reluctance among doctors to apply such a diagnosis it is pretty
unlikely that he was incorrect.
God bless you and keep you safe and well
Pat
Date: Thu, 08 Jan 2004 23:49:52 -0000
From: "Patrick (Pat please)" <pcassotoo@...
Subject: Re: hello all/// KarenFOR ROBERT&ALLTOO
Date: Thu, 08 Jan 2004 23:40:41 -0000
From: "Patrick (Pat please)" <pcassotoo@...
Subject: Re: EnzymesFOR LISA
Date: Thu, 08 Jan 2004 19:47:41 -0000
From: "Robert" <robert@...
Subject: Re: I could never be a spy...////Barbara
Dear Barbara,
I am worried that things have gotten worse, in this case. NO NEWS IS
NOT GOOD!!! Please let me know, We care. I am so worried they hurt
you.
You are in my prayers,
Robert
A Founding Member of TPP
Date: Thu, 8 Jan 2004 17:46:31 EST
From: msalinas74@...
Subject: Is it possible?
Hello all!!
It has been a while since I have posted because I have been feeling
so great!
I don't understand what is happening. It is times like this that I
doubt
(even though my GI said it was CP) that there is anything wrong with
my
pancreas. Sometimes I feel like I pushed CP so hard on my GI that he
had to agree!
Since June of 2003 I have been to the ER only once and have taken
about 4 pain
pills total! I know this is good news, but can you all understand
how it
doesn't seem right? Believe me I am thanking my lucky stars to feel
this well.
And maybe the years of doctors telling me nothing was wrong with me
has had
some pschylogical effect on me to make me doubt my CP. So I guess I
am asking is
it possible that my CP can kinda hide for months at a time? I do get
some
minor, minor pain occasionally but it is just enough to make me stop
and then it
passes. Any input would be appreciated. Thanks all!!
Sending lots of happy thoughts your way......
Marisa~San Diego, CA
Date: Thu, 08 Jan 2004 18:15:58 -0000
From: "Robert" <robert@...
Subject: Re: hello all/// Karen
I hope this finds you in much better health Karen,
Sorry you have been through it. The holiday season seems to bring on
the triggers each and every year. I am glad you are being treated
like a pancreatitis patient. Sticking up for yourself is your main
concern when dealing with the healthcare system. To even be remotely
labeled a drug addict with this disease, should be a crime!!!
Healthcare is in a state of 911 with this attitude. There should be
RED FLAGS popping up when your information is accessed at the
hospitals. NO QUESTIONS ASKED!!! JUST GET TO THE RELIEF!!! This is
what I want out of the medical field. They owe it to us!!! If they
can't research it and cure it, they owe us a chance to be PAIN-FREE.
My thoughts and prayers are with you,
Robert
A Founding Member,
Date: Thu, 8 Jan 2004 10:41:27 -0800
From: "Lisa Chambers" <chamberslm@...
Subject: Re: Re: Enzymes
Pat,
You are so right that it is up to the individual. I tried to express
that it was my own personal experience, and I did notice a difference
when I took with the meal instead of before.
Thank you for asking how I, am still a little down and I am in ALLOT
of pain. I see the doctor tomorrow to discuss the apt with the
specialist and to maybe change the pain meds. I feel so bad because
he just upped the pain meds on Saturday and they are not helping the
pain at all. Thank you for the good karma, maybe it just takes a
while to reach this part of the world.
Lisa
Simi Valley, CA
Just my 2 cents worth..... I am not a grocery worker, but I do have friends
that are caught in this strike. In my family, we have all had the benefits of
a union position for as long as I can remember. I support this strike, and no
way will I cross a picket line. It takes me a few minutes longer or a bit
more effort to get to a store that is not on strike, but it is possible. You
mention that the stores are unstocked, you should really be looking at the
cleanliness and the expiration dates on what you are purchasing. These temporary
workers are not trained in the proper care and rotation of the food stocks nor
in the meat, dairy or deli area. Hopefully our regular people , our friends and
neighbors, will be back at work soon and providing us with the clean safe
food supply and service that we all deserve.
Pam in Santa Clarita, CA
Oh dear Pat
Don't go there, it was that deadly combo of Estrogen and HCTZ that put me
here on this list to begin with. You are such a character.... Love YA!!
Pam in Santa Clarita, CA
( not too far from Lisa in Simi)
I don't know if you can stomach oatmeal. I only eat oatmeal w/resource
plus (ensure type). I works for me. I have it the morning and at
night. I have been doing this for almost a year. I know it is boring,
but, at least I eating something. I sometime venture to a PBJ with
reduced fat PB.
By the way from you screen name are into linux? I have been for about
1 year solid now and off and on for about 6 years.
Hope this gives you some ideas.
Walt
Boy........ thanks for catching that one on sugar. So sugar causes you to
sweat? I am deslystic............. and i do interpret things differently!
thanks for that help here..... love, jan xox
We are again missing messages. My count is 1560 of them. We will do
our best to get them back, I promise!!!! Sorry!!!! I am not up to it
with this raging sugar problem right now.
Thanks,
Robert
Hi Barbara,
Proton pump inhibitors may cause pancreatitis. Tetracyclines and erithromycins
may also. Check the Prescribing Information for the drug you are prescribed.
Jerry/NC
*************************************************
Jac,
Thank you for your thoughts and prayers, I'm thinking Mom and I will be
needing them tomorrow... Zena just needs them continuously.
My pain is just going to have to wait until I have time to give it
attention... hopefully, it will understand, yeah.... right!!
It sounds like you are having less pain now thanks to the liquid nourishment,
I hope that soon you will be able to eat again, just don't rush it.
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
Co-Owner ~ The Pancreatitis Place
Thanks everyone for taking note of my links. I have been very sick
today. My sugar ran low last night, in effort to get it out of the
danger level. It over shot and has stayed very high since. It has me
walking like I am on a heavy narcotics. My head is very foggy, I am
staying dizzy. My muscles hurt very bad and I have been dropping
weight for several weeks. I am trying to bring it under control
without doing harm from humalog.
Keep me in your prayers,
Robert
A Founding Member,
Hi-ya!! my friend, how are you doing?? do you feel any better, l do
hope so. The last few day`s i`ve been having a food drink called,
nurishment it`s a food drink that has everything in it, low fat of
course, but now it`s paying of, as for the first time in awhile my
stomach does not feel on fire, and no pain right through to my back.
So i am going to keep it up for two more day`s, then try something
solid. Which i really will be looking forward to by then, nurishment
is like a thick milkshake, i have the strawbery, vanilla, banana,
and one chocolate, no worries it`s low fat. Any way i hope this post
find`s you feeling better, Jac.xox
His office called to tell me that while he was in there torturing me
last Tuesday, he noticed that I had significant inflamation in my
stomach and that I should be tested for Helicobacter pylori bacteria.
Well, isn't THAT special.
From what I understand HP bacteria is treated for two weeks with a
combination of the follwoing drugs: amoxicillin, tetracycline,
metronidazole, or clarithromycin, plus either ranitidine bismuth
citrate, bismuth subsalicylate, or a proton pump inhibitor. I wonder
if any of these chemical marvels will exacerbate my poor pancreas?
BTW, I think I've got this pain thing licked. If I don't eat anything,
just take small sips of water or juice, it doesn't hurt. I had the
smallest piece of poached salmon with rice last night and was up until
3am. Tonite I had a half cup of beef stew and a slice of sourdough
bread and I'm groaning. So there you have it - want to be pain free?
Don't eat.
I'm really getting frustrated with my family doctor. I have been
calling his office everyday this week only to get an answering
machine. When I called again today, I couldn't even leave a message as
his voice mail box was full. I've had a low-grade fever all day so I'm
pooched. It's back to bed for me.
TTFN, Barbara.
hi Robert, thank`s for sending in all the info, it has kept me
occupied today, which i am thank full for and will be reading up on
them for awhile. Hope you are feeling better. Jac
We pay over $1200 a month for our family of four - that comes out of the
$3200 a month that we receive for disability. If we didn't have to pay
a mortgage or EAT, we might do okay!!! We got disability insurance and
figured that it was enough to live on - nobody told us that we would
have to pay our own insurance.
Don't even talk to me about co-pays, or "usual and customary". We
finally convinced the hospital that we did not have the $80,000 portion
that our insurance did not cover (talk about heart attacks) and they
wrote off the bill. We are starting over with new hospital this year -
don't EVER go to an "out of network" provider without talking to me
first. They only pay 60% of what their network providers charge them,
which is a discounted rate - NOT 60% of the total bill. So you might
have a $300 hospital bill, instead of paying the $180 that you would
expect, they might pay $60-80 of it, and leave you hanging with the rest.
I could write a book on "Things that I thought were covered, and
weren't"!!!!
Eileen
Hello,
I'm sorry you never got a REAL welcome to the group. I am not sure how I did
it but I went right over your post and missed it somehow. I am so very
sorry.
First, I would like to ask how is your mother doing?? I hope by now she is
feeling much better and that things are getting back to normal for your family.
You all have my prayers for a full and speedy recovery.
We have a great deal of information available here in our links section, that
is listed to the left of the page and highlighted in Blue and underlined.
There are several folders there, just find the one that shows the Acute
Pancreatitis lable, and you will have a plethera of information available to
you.
If there is anything that you need help with, please feel free to ask and I'm
sure one of the members here will be more than happy to assist you... Thank
you for coming to The Pancreatitis Place to gain Insight and Education about
your Mothers condition.
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Pat,
It is SOOOO Great to hear this kind of feedback from Our Family members!!!
Anytime that Our experiences can help someone get better it says that The
Pancreatitis Place is doing just what we intended for it to do.... Reach out to
fellow Pancreatitis sufferers, Educate the general population and Hopefully some
of the Medical population too, and let people know that there is a disease
that is terribly hard to diagnose, that makes people feel depressed, and like
they have no place to turn when they are in pain... all because the symptoms
they may have don't exactly match what the text books might say.
Pancreatitis is Not just a disease for Alcoholics anymore. In all actuality
it probably never was. It was just easier to diagnose in people that drank
heavily. The damage was there... Black and white. Imagine how many people have
suffered through the ages with pancreatitis, and chronic pancreatitis, just
because thier symptoms "Didn't Fit"?? Needless suffering.
The work we do here, and the information we make available through our own
experiences could change things for future sufferers. Eventually, because of
groups like Ours, a method of preventing the damage, or reversing it even, will
be made possible. Also through our groups we can join together with other
groups to let the world know what kind of pain we live with Every single day of
our lives. Maybe some more, maybe some less... but still there is pain.
For many of us it is disabling pain. Pain that is terribly hard to get any
relief from because of the drug addict stigmas. "You take that much pain
meds? You MUST be an addict!!!" No I'm not an addict, I just want my LIFE
BACK!!! And if that means I need pain meds then that is what I am going to do.
That
doesn't make me addicted to the pain meds, it just means I need them to keep
the pain at bay so that I can do things with my children, so I can enjoy time
with my significant other... so I can lead some semblance of a normal life, in
an otherwise wretched and twisted life of intractable, unrelenting daily pain.
So Pat, Thank You... Thank You So, so much for sharing this day with us...
with me! Because this is one of my fondest wishes coming through! Now if we
could just get the doctors to come to the site and explore the research we have
gathered as patients to empower ourselves... what a GRAND day that would be!!!
Thanks for listening <EG
so great to me I Love it!!
{{{HUGZ and Prayers}}} To You Pat!!
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Pat,
Now I can get off the soap box and on to the questions, lol... sorry I kind
of jumped right up there on the first letter.
1. I have never had one confirmed "Acute" attack
2. I don't usually vomit after the first initial time, I get dry heaves
(Wretching)
3. I go to the ER when I know I can't take the pain and the nausea anymore
and my meds aren't controlling the situation at home. Usually it hits about
the same time as dehydration does, and by then I can't keep meds or even water
down.
4. Mice don't bother me as long as they aren't hanging from my cat's mouth
in the middle of the night just inches above my face... "Looky what I've caught
for you Mom!!!"
5. I happen to think you have a great writing style and would like to see
you stick around for a bit, and since you live in the land of my ancestors...
that just makes you doubly blessed! (I wonder if this Pancreas divisum can be
traced back to Ireland??)
**My Grandmother was a St. John, but I don't know what part of Ireland her
family came from... I plan on visiting there someday before I leave this
world.**
6. I have had severe pain and not gone to the ER, but that was before I was
diagnosed and when I was still working. I am a single mom and sometimes
things aren't so easy, so I just coped as best I could and worked through the
pain.
7. The last time I was in the hospital they said my liver function test was
abnormal, but they accredited it to my having Mononeucleosis at some point in
my life. Neither I nor my mother can recall me ever having it, but the
doctors say I have... go figure. (That virus is also said to be the same as
Epstein
Barr Virus. Which is more commonly known as Chronic Fatigue Syndrome.)
8. The duragesic patches are great if you don't have sensitive skin. Be
sure you wash the area that you are going to apply them to with an antibacterial
soap before you apply them too (got that from the hotline number on the back
of the box) it may allieviate some of the itching. and don't put them in the
same spot more than once. Rotate them.
I had good relief from them, until the alleric reaction took over.
9. There really are a great deal of people in the world that never do know
that they have pancreas divisum. Something like 10% of the population of the
world. (I think they are finding now though that the incidence is much higher
now. Just from all of the people I know through the boards and from personal
acquaintances that have PD.)
And last but not least....
10. Thank You so so so much for sharing your experience with us... and for
sharing our group with your doctor.
I promised myself I wasn't going to get back on the soapbox here....
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Shelley,
I am glad you are finally getting in to the pain clinic. I hope that you
will get some much needed relief! And yes, finally having the firm diagnoses is
good, but now they don't know what to do with me other than to ship me off to
another doctor!! Silly isn't it?
Don't worry about how much you are giving back right now... you have given
plenty since you joined the family and you will, when you are feeling better,
be giving much more I am sure! We just want you to take it easy and get to
feeling better so you can get back to the things you like to do... and back to
us
too!
Ond step and one day at a time Shelley!!
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Hi Pat...I've been signed on here almost a year now but have not
been too active lately as I have been tied up with the chronic pain
support groups (all kinds of chronic pain, not just related to one
specific illness/disease)..we are planning a march on Wash DC next
April to get bring our plight (opiophobia in the US, calling pain
patients drug addicts, sensationalizing OxyContin deaths out of
proportion to reality and the arresting of our doctors, etc) to the
attention of our Congressmen and women !
Back to your letter...I will have plenty of other things to say
later about this March...
I would like to say that I have had numerous panc attacks without
going to ER. The only times I HAVE gone is when I cannot get the
symptoms under control in a short period of time. If "all" I have
is belly pain and nausea I can usually manage this at home...but if
it progresses to heavy vomiting and/or diarrhea then I usually need
to go in for an injection to reduce the degree of dehydration.
Additionally I am one of those who ends up with a migraine during
and/or after a panc attack, so if I'm vomiting, I cannot take
anything for it, so end up getting an injection for that too.
I do not have vomiting nor diarrhea with every attack...I think it
has to do with severity which I also think has to do with how well I
am paying attention to the oncoming symptoms...sometimes I don't
"catch" the subtle changes and stop eating soon enough.
I also only recently learned that it isn't "just" the food you ate
at the last meal but can be the accumulation of what you have eaten
in the last 24-48 hours ! That would explain a few of my attacks
that I just "couldn't understand" since I hadn't eaten that poorly
today....
Take care...others here have had greater experience that I have and
may be able to give you better answers...
Jeannine
Hello All,
You all had a part to play in a very positive event for me - and my
family doctor too.
I had a very painful night last night, I'm sure you have all had
those.
As I mentioned before, my hospital keeps telling me that my "levels
are all normal", and the results of these test are sent to my family
doc as well. She has been amazingly supportive but has repeated the
test results and their implications, as she understood it.
In the early hours I came to my PC to occupy myself and I printed
out some of the info from both the Mayo and Hopkins sites about how
levels are usually "normal" anyway.
I also printed out some of the posts from the site, names etc blacked
out with a marker of course, where your experiences confirm the
irrelevance of the term "levels are normal".
She read them, despite a full waiting room, and then apologized to
me. She is a lovely person, in all respects, and she admitted before
that she never heard of pancreas divisum. She had no idea that levels
could be normal and yet you could have pancreatitis. It never occured
to her that as I as taking pancreatic enzyme supplements by the
bucket load that it might result in "normal levels" also. She sends
her thanks and good wishes to all of you by the way.
When she read that such a large percentage of pancreatic patients
also have divisum she was shocked and very angry. My surgeon told her
as well as me that divisum was of no significance whatever, it
was "an embrionoc abnormality of no clinical significance".
He told my family doctor (from now on GP, ok?)
the same and as she never heard of it she accepted his report on it.
Not any more though!!! she tried to get him on the phone but could
not so she dictated a letter while I as there and I would love to be
a fly on the wall when he reads that little missive, believe me, she
made her feelings known in no uncertain terms, and she told him she
expected him to contact the Professor ASAP to get an earlier
appointment. She assures me she will also phone the Prof. or his
assistant, whom she knows personally, to express her concerns and
urge him on! She told me that she was no worried that I may have gon
on to the chronic stage and is concerned for my future.
No bad going gang, was it?
She now realises how bad my pain has to be and she has prescribed
some "Patches" for me to try to control the pain. I have to stick
with the initial dosage for 72 hours and if it's not enough she will
increase it straight away.
All together now, take a bow!
Really folks, if I never got another thing from visiting this site,
what happened today is more than enough for me.
Of course, being the greedy little boy I am I will continue to come
back for more, if it's O'K with all of you.
Having read so much on the site it has triggered some memories of
events going back over a much longer period than before.
I did not give my entire history as i did not see any relevance but
now i'm not so sure.
Before I relocated to my present home, I had attended a chronic pain
management clinic run by a real "living saint" of a doctor. How I
wish I could see him now but I can't because of geographic rules and
regulations, too complex to go into.
Because of the various "cocktails" he would prescribe I had to have
regular liver function tests and the young interns that worked with
him from time to time were constantly accusing me of abusing alcohol,
despite the fact that I did not consume alcohol! Others would call me
aside and "advise" me to reduce my consumption. I could never
understand why these liver function tests were abnormal and the GP I
attended then, for almost 30 years, could never understand this
either but noone thought to look any further.
Could this be connected with my present situation?
Some more quick questions?
Most of you have had confirmed acute pancreatic attacks, did any of
you have them and not go to the ER? It seems to me that like most
illness's there can be degrees of severity. I ask because I avoid
going to the ER as much as possible and sometimes the "nasty"
symptoms are over within 24
I have never actually vomited, but the nausea is difficult to even
describe. Have any of you had attacks without the vomiting?
It's just as well I don't vomit as there are two things I am simply
not able to deal with, vomiting and mice!!!!
Mice can make me simply pass out with panic, honestly, and vomiting
causes me to break down in tears. On those occasions I have vomited
in the past my wife has to stay awake with me all night or have the
doctor come and sedate me. I can't explain why, that's just how it
is.
Enough from me, thank you for listening and it's such a joy to share
some positive responses from at least my doctor!!
God bless,
Pat
Dear Ray,
My prayers go out for you that this operation works. Hopefully they
are going to try the islet cell transplant with you. I see no need
for anyone to go without this major operation without least trying
it. One more thing that I had to find out on my own, You may get
pancreatitis just from the operation alone. It is kind of hard to
tell when you are recovering but be on the look out for signs for
several weeks afterwards. When they mess with the pancreas with
anything anytime, it can hurt. Looking forward to hearing from you
very soon.
My prayers are with you,
Robert
With God's help I
weeks after I am out of the hospital.
Once again thanks for all the support and prayers.
Ray Nelson
Hi everyone,
Just thought I'd drop in and say welcome to the new members of the
family. I feel awful as even reading my emails is a chore at the
moment. You have helped me sooo much and I feel like I'm not giving
anything bck to the family.
I'm glad you are out of hospital Denise, and I'm pleased they have
made a firm diagnosis at last. Trips to the ER will never be the
same again!!
I go to the pain clinic on thursday, so hopefully after then I will
be able to contribute more to the group.
Take care everyone, lots and lots of very gentle hugs,
Shelley
Hi all,
Just want you all to know how much you have helped me as I go to the
hospital today for a complete whipple. Even though I don't have a great
feeling about what is ahead you have all helped greatly. With God's help I
look forward to telling you all about this surgery in three to four weeks
after I am out of the hospital.
Once again thanks for all the support and prayers.
Ray Nelson
Hello everyone, never posted before, so a quick rundown is in order.
My wife Elaine suffered for years with undiagnosed abdominal pain,
but generally thought to be caused by adhesions from previous
surgery. She had endless investigations (including ERCP), referrals
to "pain clinics", accused of being a drug addict (pethidine for
pain) but eventually it was discovered she has pancreas divisum. A
pancreolaurel (sp?) test also revealed low pancreatic function.
Amylase/lipase levels are generally normal, there is no evidence of
calcification so the doctors are reluctant to call it pancreatitis.
She suffers bouts of severe pain lasting anything up to a week or
more, then subsiding to daily niggles.
For the past couple of years, at intervals of a few months, she has
been having botox injections into the pancreas ducts. This has worked
really well! She generally has about 3 or 4 months pain free! Well
almost - still gets the odd niggle. But doesn't need the narcotics,
so that shut up those accusing her of being a drugg adict! Who heard
of a druggie that needs drugs only at several months intervals!
This treatment is done via ERCP, so most hospitals could do it.
If anyone wants further details, email me, putting "divisum" in your
message header. (stops me accidentally deleting it as spam)!
Cheers for now, God bless
Allan
I enjoyed looking at the pictures. It seems to help you to know us
better with our pictures out there.
Carolyn from OH
Susan,
I believe your husbands name is Raymond right? I checked and he still has a
website that offers a great deal of information about pancreatitis and its
implications. I could send you a link to that site if you would like, since
obviously he hasn't shared that with you. http://www.raymondduggan.com/ there
is
a link to the site, I checked it out and it works.
As far as dealing with this disease. You just have to be there and support
him in anyway you can. "In sickness and in health" means just that. When he
is over the tiolet vomiting or dry heaving for hours at a time, hold his
head... when he has diahreah and can't get off the toilet for hours, just be
there
and let him know that you are there and that you are supportive of him. When
he is wracked with pain you need to be there for him and take him to get help
att he ER or doctor where ever you can get him help.
Is he here at home or at home in England? You shouldn't feel bad for sending
him someplace where he can get the medical attention he so desperately needs.
Especially if there was no way to get it for him here. You aren't being a
bad wife, just one that knows when its time to say we need to do something
different.
I hope that this has helped you some. I have suffered with this disease for
nearly 14 years... about 13 before I even knew what it was... I think you
should be feeling fairly blessed that Raymond was diagnosed as quickly as he
was... some people never get a diagnoses until its to late to do anything about
it
but suffer.
Take care and please feel free to ask questions as you please. I'm sure you
will find some support here.
Sincerely,
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Hi, I am new to this group. My husband was told he had chronic
pancreatitis in August of this year. I was in denial and didn't
really give much support to what he was going through. I mean he
didn't look sick or act sick. He has a high tolerance of pain. He
was also told that he had a mass on his pancreatitis head. It would
have to be removed. He had no insurance and every door we tried to
go through for help was slammed in our faces because I either made
too much income (for their scales) or it was because he was not
officially a US Citizen yet. Well I had to send him back to his
country...England on 11/5/03. It didn't really dawn on me the
seriousness of the situation until after he left. I feel guilty as
everything because I could not do anything for him. Could not get
him help or insurance, couldn't afford it. He is now home and on
the waiting list for surgery. He is waiting for the doctor to call
him. We do not know how bad it is until they get in there. You
would think they would have done it on an emergency basis. Is there
anyone else who has a loved one with this illness? What have you
done to relieve some of their worries, etc. or what can I do to be
more supportive. Is there any websites you can refer me to so I can
understand this illness much better. We were having problems before
he got sick but I did marry him for "in sickness & in health" I
feel like such a bad, uncaring wife. Thanks for lending me your
shoulders to cry on.
Susan
Pat,
Yes! I have Pancreas Divism and so far it is the only thing they can find to
blame my pancreatitis on... other than possibly a hereditary factor.
(possibly the 3 ERCP's and cuttings that they have done on my ducts and such has
added to the problem too.)
In all of the tests that the doctors have done on me, none have come back as
far from normal. In fact up until this last (and longest) attack, my enzymes
have only elevated after an ERCP.
I was scheduled to have an ERCP Sept. 29 of this year and the doctor wouldn't
do it because of a long list of reasons, one of which was my Lipase was
elevated... Before the ERCP. I was confused... that had NEVER happened before.
Shortly before that I had been in the hospital for an "attack" but my enzymes
were not elevated while I was there.
I spent a few weeks at home dealing with the pain and then whaen I could take
no more I went to the ER. Still no elevations but I stayed for pain control.
was in for 12 days. My Gastroenterologist decided I needed to see someone
else that specialized in Pancreas and was going to send me to the Mayo Clinic
in Minnesota... that is a long ways from home so I started looking around for
someplace closer, and one of the other members here pointed out the Center in
Cincinatti. And I got out of the hospital just in time to go there and have my
records checked out and then came back home.
I was home for 2 days and I was back at the ER. This time both my Amylase
and Lipase were elevated. That had definately NEVER happened before. Needless
to say I was admitted again. This time for 7 days. No food no drink... just
ice chips and meds.
My levels were back to normal within a few days and as soon as I could
tolerate a full liquid diet they sent me home.
I was home for 4 days. I passed out twice and was back being admitted for
dehydration. My lipase was back up to double normal. And my Urine Amylase was
high too... this time I saw an endocrinologist that told me I definately have
Chronic Pancreatitis, and now they had all of the proof they needed. The
elevation of enzymes was the final piece ot the puzzle.
I have been dealing with this for about 13 years off and on... during
pregnancies and more in the last 5 years than ever before. This last year has
been
sheer torture. Not only for me but for my family. My relationships have
failed because of this disease, and my parents say I look like I am dying...
because of the amount of weight I have lost in the last year.
Everything about my lifestyle has been questioned, from my diet to how much I
do or did drink in the past, and if I did or do illegal drugs... I'm not sure
why I have this disease, but as long as I can I am going to do whatever I can
to educate every person I can about how it affects people and I'll shout it
from the rooftops if I have to that ALCOHOL is NOT the only way to get it! And
my weight DID NOT play a role in it either. BUT! I have learned that more
people with Pancreas Divism are Morbidly Obese than those that don't have it.
(Something I picked up not too long ago. During a web search... haven't posted
it yet, sorry I'll get it out there soon.)
I also know that Pancreas divism IS hereditary. I have a second cousin that
has it and her mother had it too. (both of which weigh a great deal above
normal weight, as do/did I).
The tube thing I have never heard of, but when I have had my ERCPs they have
placed stents in my pancreatic duct to try to open it up, but it just keeps
scarring over. The stents are small tubes placed in the ducts could that be
what they were seeing?
I am so sorry that you are having so much pain I wish that there was
something I could do or say to help you to feel better. Other than you are not
alone.
And that you have people here that care!
Please take care and don't let the pain get so bad that you can't take it.
Go get help, don't mention anything except that you are in tremendous pain, and
that you need help. That is what my GI doctor told me to do until I got my
diagnoses. If you can't keep anything down or in then tell them that... just
give them the symptoms not what you think is wrong. Sometimes it will get you
better care. At least that is what I found in the beginning.
Sending Healing {{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Carrie,
Thanks for posting, and getting involved with the board. Its the people that
we don't hear from sometimes that gain the most from our experiences. I'm so
sorry that you have had to deal with the SOD and pancreatitis... I have both
and wouldn't want to wish them on anyone... (ok maybe a few people and just
for a week or two, just so they could get the "Its all in your head"
experience).
If you would like, you can add information you find to our links section,
just find the folder that it fits best into and put it in, or you can send it to
ReeAnn or I and we can add it. Either way, you will get credit for any info
you send in. And we will appreciate it so very much!!!
I do a lot of research online about the disease and other diseases that
mimick it. I have posted a lot of info as well as ReeAnn and Robert and others
have. We have recipies and photos and everything... I hope that you will add
your contributions to the board as well!!
I have a few things I need to re-post I just haven't gotten around to it. I
need to get an up to date photo too, since I have lost so much weight I really
don't look like the same person anymore... well, I do, just minus a whole lot
of me, lol.
Take care Carrie and Mend well!
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Hi all,
I'm sorry if my questions are a bore or bring back unhappy memories
for anyone.
So many say that their enzyme levels etc were not elevated when they
had pancreatitis, in those cases, how was pancreatitis diagnosed? If
the levels were normal then what was it that prompted the doctors to
go down the pancreatitis route?
There was no suspicion of any pancreatic involvement by my doctors,
despite my having described all the apparent classic signs, severe ab
pain, foul bowel movements and odour and so forth. They were actually
convinced that I had a small stone in my bile duct and so it was I
had the endoscopic ultrasound. During this examination, performed by
the leading specialist at doing this test in Ireland and perhaps in
Europe,
that the discovery of pancreas divisum was made.
The surgeon that had ordered that test told me that the pancreas
divisum was really only curiosity value and was not involved in any
of my difficulties, again because of normal levels etc. he said that
it was a "totally benign" fault that seldom ever gave any trouble and
was hardly ever noticed except by accident or during an autopsy and
was never involved in any mortality etc. he said he would not do
anything to or about it, to simply forget all about it, yet, he
scripted Pancrease for me along with that powdery med that originally
was used to lower cholesterol. ODD.?
So many stories on this forum are by people that have pancreas
divisum so was he wrong in asserting it was not significant?
There was a small piece of what seemed like tubing coming out of my
pancreas and going back in again, I was shown a sonogram or picture
of it. I could see it as the doctor doing the test was pointing it
out to the string of visitors that came to see the pancreas divisum.
Has anyone else got this little "tube" or similar.
Has anyone heard of it before or of anything similar?
Has anyone with pancreas divisum ever been told that it was involved
in their pancreatitis or that it was the cause of it?
Again, I'm sorry if this is boring or upsetting anyone but they are
important for me.
I have spent a long time going through past posts but I have not
found answers to these but I admit that my pain is melting my brain
at this point so I may have missed it.
Regards
Pat
Kimber,
I sent the office manager an email yesterday telling her about the
transportation issue and the fact that the orders never made it here... and I am
going
to call the office if I don't hear from them by at least 9:30 am tomorrow,
since I have to go to court with my mom tomorrow morning too. (something that
was
scheduled a long time ago too).
As soon as I get a new date I can call the Angel Flights back and they will
get things set up for mom and I to go. I would much rather fly and take a taxi
than try to drive in Cinci... traffic there makes Indy look like a tiny
town!!! I just couldn't believe the difference. Plus this will give me time to
make hotel reservations too. I don't want to have to worry about that like the
last time we went. That was just too crazy.
I think I am feeling better now, so hopefully a few days won't make too much
of a difference... hopefully. I have even managed to eat a few bites here and
there and am keeping my nutritional drinks down a little better now too.
(Thank Goodness)
I'm still a little shaky and lightheaded when I try to walk or anything, but
its not anything like it was last week. So maybe I will get to stay home this
week. YAY!!!
Thank you for being here for me!!!
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Carolyn,
Congrats on the new baby!! I just got a new granddaughter on the 18th of
November... I still haven't seen her yet because I have just been too weak from
being in the hospital and everything. But I just know she is precious! Her
name is Morgan AnnLeeLynn (named after all of her grandparents... pretty cool
huh? Mom's mom and dad Ann and Lee and my middle name Lynn.) Everyone says she
looks just like my son so I know she is a beautiful baby. I just wish I
could have been there when she was born like I was for her brother.
I was wondering how far you are from Cincinatti and if you had ever heard of
the University of Cinci Pancreas and Hepatobiliary Center? You can get a
little more info if you go to thier website... its at www.ucpancreas.org they
don't have a lot of info there but you can send email to them and ask questions
about your history and if they can see you, that's what I did, and I am hoping
they will be my light in this dismal disease. I got the web addy from Jenise,
she is in Ohio too. I think she is having the pancreatectomy and Islet cell
transplant there. I haven't seen her online since I've been out of the
hospital... I hope she's doing ok.
I fully understand the fear that you have about the cancer thing... I have
had it as I am sure many others here have too. And its a rough road to travel
until you get that yea or nay on that question... No doubt about it. But we
will be here to support you no matter what the outcome is. Count on that.
Have faith and channel your thoughts into that new baby!! And keeping that
little guy you have there busy! (or not going bonkers trying to keep up with
him!! lol!)
{{{HUGZ and Prayers}}} to you and your family!
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Pat,
Use: http://www.timeanddate.com/worldclock/ Atlanta or NY times will
lock you to the correct times. Also we have our chats in the eastern
time zones.
Thanks, Robert
Hello everyone,
This may sound a bit silly but I see mention of organised chats and
have had a reminder by email.
Question?
I live on GMT time zone, what time zone is the chat held in.
Having just read what I typed you would think this was the X Files or
something similar!!!!!
While i have a chance let me apologise and explain that because of
neurological damage from a spinal injury I sometimes think i've hit
the shift key hard enough but as i get very little feed back therough
my fingers i probably miss it as much as i hit it.
you will all make allowances won't you? Thank you, i just knew you
would.
God bless
Pat
I've had little AJ about a week he is three and my nerves are
razzeled. If I felt a little better it would be really fun. Missy
is due in a couple weeks and I have to keep him till she has the baby
cos Little Billy he is two and AJ ruff and tumble and missy can't
handle the both of them on bedrest. Her amniotic fluid was low and
they put her on strict bedrest and to drink lottss of water. She is
better the baby is 4 pounds now and doing ok. The fluid is normal
but she still has to stay on bedrest till little SarahJane comes.
That is her name. I was on this link today looking for a pretty
dress to bring her home in, I found several and I'm so excited. I
order those little dresses for the girls to go to church in, thier
daddy want to be a pastor, he is in college to be a paralegal this is
my other daughter angies husband.
http://www.lidldollys.com/seasonal.html
I have a bunch of new tests to go thru next week. I hope they find
all that is wrong. I keep having that pain in my side really bad
where my gall bladder scar is. I scream sometimes when I'm walking
at it hits me I bend over and yell loud. I hope its not pancreatic
cancer. Here I am awfulizing when I don't know what's really wrong
cept, all the other things, guess it's a flare up of chronic
pancreatitis. Anyway I'm better than I was I can walk now the
swelling went down in my leggs and I feel better. see ya later
Carolyn from OHio
Pat,
no problem. That's what this group is all about. As for adding a subject
line to your already published post, I have no idea. The people to ask
about that is either Denise, ReeAnn or Robert as they are the owners of
the board.
Kimber
--
Kimber Allen
Vallejo, CA
hominid2@...
Note: All advice given is personal opinion, not equal to that of a licensed
physician or health care professional.
I have been revealed....
Hi all! I have been lurking for some time now, but I guess it is time I came
out.... My name is Carrie and I have Sphincter of Oddi dysfunction.
I had my gall bladder removed in June. There were no stones. A hida scan
revealed my gall bladder was not working properly. Turns out it was not working
properly because I had Sphincter of Oddi dysfunction.
I had two ERCPs with sphincterotomies following my gall bladder removal. I got
acute pancreatitis as a result from both ERCPs. Hopefully I am cured now....
The last time I got the pancreatitis, it was worse than the last and I needed
some additional emotional support. Although I have received excellent support
from my husband and cyber friend Pat. We found each other through the web site
www.medhelp.org . You guys were the answer to the additional support. Although
I never posted, just reading your support to others is fantastic.
With the Sphincter of Oddi Dysfunction (SOD), I had terrible right upper
quadrant pain. It would get extremely intense for hours and then turn off like
a light switch. Spasm medications worked for awhile, but soon my body became
immune to them. I had a sphincterotomy on my common bile duct. I had
pancreatitis and was in the hospital for four days then in pain at home for some
time after that. I thought the pain from the SOD was relieved for about a
month, but it wasn't. I had another sphincterotomy on the pancreatic duct and
had pancreatitis again. This time I was in the hospital for 1 1/2 weeks. Much
more pain than last time and much suffering after coming home. I am now healing
quite well. I still get very tired and have some discomfort, but am off the
medications. I have developed blood clots in my forearms from the IVs and pain
meds, but my doctor is not concerned unless they suddenly move up my arm with
redness.
I think the medications were part of my depression problem when I arrived home
the last time. I was on nausea, anxiety and pain medications, every three
hours. I felt insane. We decided it was all the medications and I cut them
back. I then got extremely depressed for several days and found your web site.
Thank you for the support, although you had no idea you were giving it to me.
I have already responded to Pat separately, but for your information... I found
online some time ago that Morphine and some Morphine type products makes the
pain much worse and even brings on the pain in people with Sphincter of Oddi
dysfunction.
Thank you all again for your support.
Love,
Carrie
Pat:
First of all, welcome.
Secondly, congratulations on the marriage of your daughter.
In my case, chronic pancreatitis was diagnosed over three years after
I became ill. It all began with the removal of my gallbladder in
1993. However, none of the ERCPs that I had found it.
What did give the physicians an answer was a blood test, serum
trypsinogen. Trypsinogen is a pancreatic enzyme. It was too low
which is consistent with chronic pancreatitis.
To comfirm the diagnosis, I underwent an endoscopice ultrasound (EUS)
assisted pancreatic biopsy. Not only did the ultrasound images
indicate damage to the head of my pancreas, but pancreatic tissue
samples taken via fine needle aspiration were found to be badly
inflamed by a pathologist.
Taking pancreatic enzyme supplements when we eat is very important.
That sends a message to the pancreas to stop trying. When it is
damaged, it sort of goes into "overdrive." It tries to work, but
can't and that causes further damage.
And you can't overdose on them. There are even some health experts
who believe that everyone, even healthy people, should be taking them
to aid digestion.
As far as Lipitor is concerned, studies from Italy have proven that
it can prevent the formation of gallstones.
You do not have to have a gallbladder to have stones. That's because
they are cholesterol based and manufactured in the liver.
The gallbladder is where they often got stuck. And some, as in my
case, jammed the common bile and pancreatic ducts long after having
my gallbladder removed.
Sadly, Lipitor can cause liver damage. That's why those of us who
take it must have regular liver funtion blood tests.
The awful diarrhea which is a sign of malabsorption, is
often "managed" by cholestyramine powder. It was initially developed
to lower cholesterol. But too many people became constipated,
something that many here would welcome.
As with any cholesterol lowering drug, it can affect the liver so
those regular blood tests must be performed.
The foul smeling wind is another sign of malabsorption. My husband
and I have often been amazed by the sounds that a human body can
produce!
As far as the right upper quadrant(RUQ) pain is concerned, that is
exactly what we pancreatitis patients get. And it often wraps around
into our backs.
Pain medications often help, as can nerve blocks. As everyone on
this site is aware, I've had great success with a series of EUS
guided celiac plexus nerve blocks. Sadly, very few GI physicians in
the US perform them. You might want to investigate their
availability in Ireland.
-Ellen Grove
New York
Pat:
Unless they check the pressures...looking normal does not mean much. Yes,
some medications can cause biliary type pain. Narcotics, come to mind.. esp
Morphine. Not sure about what others. They should give you a sedative like
Versed or Valium before the tests..they are suppose to cause a amnesic
effect..if you can hear them ..then you prob didnt' get enough.. I am 4-11"
and it takes elephant doses to knock me out...Then Versed just makes me
combative... The last few I've had they had to put me under general
anesthesia because of the side effects. So let them know beforehand that you
had that type of reaction so they can better medicate you. Take care.
Shannon Tuten
moderator,TPP
Edgefield,SC
Thank you Shannon,
She called in lots of doctors to show all of them this and I was
lying there watching and listening to all of it. I understood i would
be sedated and given something that would mean I would not remember
what had happened but I can remember every word she said and the
parade of doctors etc. It wasn't all that unpleasant but I hate to
think that FULL ERCP WOULD BE DONE THE SAME WAY, I.E. ME AWARE OF
EVERYTHING?
Last point, do you know if there are any medications that can cause
or "mimic" pancreatic type pain or symptoms?
Kindest regards
Pat
Thank you Denise for the warm welcome. The sites does indeed have
a "family" feel to it, I feel comfortable already.
I was given a link by a cyber friend Carrie who visits your site and
has recently had an ERCP and they made a little "nick" to relieve the
pressure. Unfortunatly, she has been very ill since then but seems to
be coming around now.
I look forward to visiting the site regularly.
Kindest regards,
Pat
Thank you Shannon,
Although it's almost 30 years since my G/B surgery, I distinctly
remember the surgeon at the time, (he's dead some time now)
mentioning the spyncter of "ODI". I can't remember what he said about
it but he mentioned it. I said this to all the doctors I've spoken to,
including the doctor that did the "echo endoscopy" that showed the
Pancreas Divisum. She was a lovely, kind lady (bet all the girls are
smiling at that!)and she said she thought Odi was fine, but she said
it would be necessary to pressure test it to sign off on it but she
was totally comfortable that it was ok.
One thing I omitted by accident, she said she also found what
appeared to be a small section of "tubing" that came out of my
pancrease and then re-entered a very short distance away (only
millimetres at most) She could not say what it was or why it was
there nor what the implications of it were.
She called in lots of doctors to show all of them this and I was
lying there watching and listening to all of it. I understood i would
be sedated and given something that would mean I would not remember
what had happened but I can remember every word she said and the
parade of doctors etc. It wasn't all that unpleasant but I hate to
think that FULL ERCP WOULD BE DONE THE SAME WAY, I.E. ME AWARE OF
EVERYTHING?
Last point, do you know if there are any medications that can cause
or "mimic" pancreatic type pain or symptoms?
Kindest regards
Pat
Thank you Kimber
For your quick response.
For the information
For your honesty
But mostly for just being here.
I mean't to have a subject heading "Pancreatitis - Do I fit the
picture? Can this be added instead of no subject?
Kind regards,
Pat
Hello there,
I am so sorry you are having to deal with this problem along with the
ignorance of some doctors that don't know thier bung hole from thier elbow. I
didn't
catch your name, but if you were in the states I'd tell you to file formal
complaints with JACHO (I never do get that right, Kimber always corrects me
though lol.) But I am not sure where you are... Sounds like over seas though.
Don't know what kind of governing faction you have for Doctors and hospitals
there. Might not be a bad idea to look into that though, find out who you need
to talk to and file a complaint and don't stop until you are satisfied with the
outcome.
I hope that you will find the information here that will help you to cope
with this dreadful disease and if you don't find something you will ask so that
one of us may help you with your search for that information. We are always
looking to improve the info on the board and educate our members and the general
public.
Take good care and write when you can. {{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Ale,
I am so sorry you are having a hard time convincing the doctors that you are
truly in pain. I can sympathize with you though, as I am sure most every
other person in this group (and many others too) can as well.
I would recommend that you go to the John's Hopkins site too and print out
the area about tests (Amylase and Lipase) and what should (or shouldn't) be seen
as the best indicator for pancreas problems. It is stated in that text that
Amylase and lipase do not have to be elevated to have chronic pancreatitis.
If you need help finding that site or any other information that you would
like to take to show your doctor... please let ReeAnn of myself know and we'll
do what we can to help you find it.
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Jan,
Thanks for the helpful hints... I appreciate all of them I get right now. I
finally have been able to eat a little bit, but it still makes me hurt a good
deal. I have some shakes that are like Ensure that are helping a little bit
too. The only flavor I can tolerate is the vanilla... I have never been a big
chocolate fan. (yeah I know, I'm female, how can that be???)
Anyway... I'm so glad to see you posting again. I have missed you soooo
much!
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Karen,
I'm so glad that everything went well with your hand surgery. I hope that by
now you are pretty much healed up and able to do things pretty much normally
now.
I sure do know how you feel about the no veins thing... I have none left
either. I have the anicubitals on each arm and thats about it. I usually end
up
with the IV in one and blood draws from the other. (and if I have to get
another line in they just switch sides or put in a picc now.)
I hope that you are taking it easy and healing well! {{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place
Maria,
Thank you for thinking of me!! I am so glad you are home and able to share
the holiday with your family. I hope that the fevers have subsided and that
you are feeling 100% better by now.
I am out of the hospital finally and am hoping to stay out of there for
awhile. I do have to go to Cinci on Monday, for some tests and hopefully they
won't make me sick. I'm sure you can understand that one.
I hope that the temp thing has regulated for you by now and that you are
feeling much, much better. Please take it easy and get as much rest as you
can...
I know I will be (as soon as I get a little bi