In a message dated 8/23/00 1:50:28 PM Pacific Daylight Time, DSimmTaz@...
writes:
<< feel the same way karyn if I can convince my mo and dad to let go I will
come and be there in any compacity that you may need me. David
Hi David,
Thanks for staying in touch. I know you are willing to do what ever you can.
I hope you can come. But if you can't, just keep promoting the Network to all
you can.
Karyn
In a message dated 8/23/00 6:25:51 PM Pacific Daylight Time,
dhollis062@... writes:
<< Karyn, I can't believe you find the energy to work on all those things at
one time.
I am trying to get my church to start a Hopekeeper's group that Rest
Ministries started. Any suggestions on how to manage it when fatigue and such
keep you down. I called my doc about the Roxanol. His idea of titrating is
to take 5 mg and if that doesn't help, take a higher dose 4 hours later.
Diane
Hi Diane,
You know I am not sure where some of my energy comes from. I just continue to
pray for the strength, willingness, and ability to do these things. Ask God
to give you direction towards the start up of the Rest Ministries group. I am
familiar with them, somewhat, I know it will be helpful.
Regarding the titration. Do what you have to do to not hurt too bad. Keep
letting the doctor know that the dose he recommended isn't working.
Karyn
Karyn,
I don't think my swelling problems are the same as yours, but you never
know... A few months before I developed all the digestive problems, I woke
up one morning and my right ankle was big as a house. My PCP was on
vacation then, and couldn't get in to see the ortho guy, so I went into the
ER. At first the ER doc said it was a sprain and to rest it for a couple of
days. Two days later, I get a call from the ER saying it was broken and I
had to get off it and get a splint on it. Still could not get in any earlier
to see the Ortho guy, so I went back to the ER for the splint and crutches.
After several visits to the Ortho guy (who only once looked at my ankle),
more x-rays, steriods, and a MRI, it turned out that it was an old break and
that I had numerous bone spurs and ostreoarthritis in that ankle (no cushion
left between ankle and leg bones). I was never treated for a broken foot,
though I thought I sprained it a few times.... Guess that says something
about my pain tolerance.
Anyway, the reason I bring this all up is because I was put on
anti-inflammatories. At first regular anti-imflammatories and I think they
played a major role in all the digestive distress. After I had the fundo
surgery and my gall bladder removed, my insurance company finally approved a
COX-2 anti-inflammatory, one that doesn't irritate the dige stive system.
So now I take 400mg a day of Celebrex. 200 in the morning and 200 in the
evening. Should have no problems with swelling, right?
Wrong... My left knee has been swollen so bad (for months now), my PCP
wants to drain it via a needle. It don't hurt unless I am using more than
one flight of stairs at a time. My ankles (both) still swell badly. And in
the past few days my eyes have been swollen - Monday morning they were
almost swollen shut and still not back to normal.. I am on a "water pill"
as part of my hypertension treatment, so it shouldn't be caused by that..
My knee stays that way.. Almost looks like I have a melon in the joint.
And I don't have an explanation for it either... especially with the high
dosage of Celebrex I take each day....
You asked if anyone else has problems.. so that is mine. One day I will
look into further, but right now my digestive system has the front burner...
Hoping you find answers to yours... maybe it will lead to some answer to
mine as well..
I seem to be doing better the past couple of days. Not in as much pain and
have actually felt a little of energy return. Far from normal.. but enough
improvement to give me hope again that maybe the surgery on the Common Bile
Duct has fixed my problems. See the GI again on Sept 6th and I have a bunch
of questions for him... Like what caused it to begin with? What are the
chances of reoccurrence? etc.. etc... etc.. Wish I had someone to go with
me to the doc... I too can never seem to remember everything.....
Lots of Hugs
ReeAnn
Hi all, I called the pharmacist this morning and he said that there is no
insulin in my tpn bags. He thinks my Blood Sugar is low, 50, and 51 because
I am not eating. Does this sound right to you? Thanks for any help you can
give me. Shirley
--
Linda, please don't feel hurt. As you can see from previous posts, there was
soooo much happening. I'm sure I'm not the only one who doesn't know who
unsubscribed, who just dropped out, etc. in the aftermath of all the heated
exchanges. I doubt I'm alone in feeling so stunned & upset by the animosity
that I stayed out for a while, trying to let things settle. Anyway, please
don't feel hurt that there weren't more inquiries to you; not asking meant not
getting a response of another member leaving.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.
--
Unfortunately, no joke. My parents have said those things repeatedly over the
past 15 years.
Its been the response to my multiple sclerosis & pancreatitis. It was their
response to my husband's herniated discs in lumbar-sacral & neck spine,
diabetes, kidney stones. You just have to take it as brain-dead (or
heart-dead) people who have nothing to say, but need to hear their voices
anyway. After a while, you accept it as the best they are capable of & don't
expect better. Sorry to sound hard-hearted myself, but developing a very thick
skin was the only way to not let these things get through & fester.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.
Andre'
I think I can agree with you about this summer. Although my summer on TPN in
96 was probably worse. I don know that the excessive heat has been a real
negative factor in how I am feeling. I was always sensitive to heat even
before I got sick...but it has affected me more lately.
(of course my choice to move to TN 8 years ago helped a lot too I'm sure
lol!)Though I hate to hear of other's suffering, its good to know I'm not
the only one, ya know?
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God. (John 3:3)
Hi all I was wondering if anyone would please take the time to write a
story discribing your life since being diagnosed with cronic panc. What your
simptoms are, your medications and dosing what procedures you had done and if
they helped in any way or maybe made things worse. Tams family needs to know
that she is not the only person that needs to take narcotics for the pain,
Tam is curently taking 4 mg of dilauded every 4 hr for pain. They all seem to
want to blame the narcs for all of the cp effects, vomiting, depression, not
beeing able to eat., that is my favorite one her mother keeps telling her to
" just eat and you will feel better, " yea rite you mean make her worse. do
all or any of you have bad depression, I know that answer but I would like
you all to re-itterate that for the ol inlaws. They just cant believe there
is no treatment or cure for this disease. plaese write as little or as much
as you are able to. if you dont mind I would like to print all of your posts
Thank you all you have been a great help
Your friends Tammy &
Steve
HI EVERYONE, MY OLD COMPUTER QUIT ON ME AUG.8 AND I COULD NOT
GET ANOTHER ONE TILL AUG.21.I DID NOT HAVE ACESS TO ANOTHER ONE AND I KEPT
TELLING MY HUSBAND THAT I NEEDED TO GET WORD TO EVERYONE THAT I WAS
ALRIGHT,BUT AS I SAID I HAD NO ACESS.I JUST KNEW ALL OF MY FRIENDS WOULD BE
WONDERING WHAT HAD HAPPENED TO ME,BOY WAS I WRONG.I ONLY HAD 1 PERSON WHO WAS
WORRIED ABOUT ME.I AM TALKING ABOUT THE PEOPLE WHO POST ON THIS BOARD ALL OF
THE TIME.I USED TO WAKE UP AND THE FIRST THING THAT I WOULD DO WAS TO CHECK
THE BOARD TO SEE HOW EVERYONE WAS,WHEN A NEW PERSON CAME ALONG I ALWAYS
WELCOMED THEM ON AND TOLD EVERYONE I WAS HERE IF THEY NEEDED ME.I TRIED TO GO
TO THE MAX TO MAKE SURE THAT EVERYONE FELT WELCOME AND I WAS SO GLAD THAT I
HAD FINALLY FOUND SOME FRIENDS WHO COULD HELP ME WITH THIS NIGHTMARE OF THIS
ILLNESS IN WHICH WE HAVE TO ENDURE.I ALWAYS READ EVERY POST .WELL I WAS
SHOCKED THAT NOONE EVEN QUESTIONED WHAT HAPPENED TO ME.I UNDERSTAND THAT
THERE WAS A LOT OF THINGS GOING ON HERE BUT STILL NOONE MISSED ME.THIS MIGHT
SOUND TRIVIAL TO SOME PEOPLE BUT I THOUGHT THAT I HAD FOUND A FAMILY AND IT
ALWAYS MADE ME FEEL BETTER.I REFUSE TO BE SUBJECTED TO THIS AND I WILL FIND
SOMETHING ELSE TO DO WITH THE 3 TO 4 HOURS I SPENT EVERDAY POSTING HERE.
LINDA BLESSARD VA.
In a message dated 8/23/00 7:25:35 PM Eastern Daylight Time, KarynWms@...
writes:
<<
Hi Shirley, and all,
That post meant a lot to me. Particularly the line about not letting it get
me down. It is so easy, isn't it. I took my friend Tull with me to the
Doctor's. I did the same thing I usually do when I go to the doctors. I hear
something that sounds scary and don't hear anything else. He said that it
may
be the morphine and narcotics in general that are causing the swelling. The
doctor left the room and I started crying. Tull heard it may be the
narcotics, but we can control the swelling, I heard because I need
narcotics,
I will have the swelling for the rest of my life. Anyway, I was laying on
the
couch with my legs elevated, when Dr. Hellman's nurse called to tell me that
the doctor was concerned and wanted to know how I was. She will call
tomorrow
to see how my weight is. That's nice. I feel cared about. From him and all
of
you.
Hi Karyn, I know exactly how you heard the scary part and all else passed
over your head. As I said before I do that every visit. I hate that. I
want to know what is said so I can make the right decisions myself but I
can't because I missed almost the whole conversation. I am so glad that Tull
went with you. With the seriousness of our disease we need someone with us
all the time. That is so rare and wonderful that the doctor had his
nurse call you because he cares and is concerned. God Bless Him. Please
keep us posted Karyn. We all think of you everyday and pray for you also.
Take care and hang in there. I know that you are tough. Shirley
In a message dated 8/23/00 10:59:43 PM Eastern Daylight Time,
dhollis062@... writes:
<<
Greg,
No...no PABA test...I'm not even sure what it is. I'll try to answer some of
your earlier questions. My pain is mostly on the left of my abdomen and
radiates through to my back. When I first got sick I did have steatorreah
but since I have been on narcotics that has not been a problem. As a matter
of fact its the opposite now. I had my first ERCP in '89 when they thought I
might have a pancreas problem. And they found the divisum. Then in '95 I had
the EUS to look at the outside of the pancreas and then the ERCP to look at
the inside. Those are the on;y test that have showed anything but the
Pancreatic specialist at MUSC is convinced it is chronic panc. I may need
some type of surgery later if things continue downhill, but it has been a
very slow descent so far,so we'll see.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)
Hi Diane, Your pancreas problem sounds similar to mine. Do you see Dr.
Cotton in SC? Has any particular surgery ever been mentioned to you. I have
had so many ercps and stents but I have never had an EUS. Do you think it is
an important test to have? Are you able to eat and if so how much can you
eat? Do you ever have to go on tpn? Diane, have you had stents put in your
small duct? I have so many questions for you. Thanks for any information
you can give me. Shirley
Greg,
No...no PABA test...I'm not even sure what it is. I'll try to answer some of
your earlier questions. My pain is mostly on the left of my abdomen and
radiates through to my back. When I first got sick I did have steatorreah
but since I have been on narcotics that has not been a problem. As a matter
of fact its the opposite now. I had my first ERCP in '89 when they thought I
might have a pancreas problem. And they found the divisum. Then in '95 I had
the EUS to look at the outside of the pancreas and then the ERCP to look at
the inside. Those are the on;y test that have showed anything but the
Pancreatic specialist at MUSC is convinced it is chronic panc. I may need
some type of surgery later if things continue downhill, but it has been a
very slow descent so far,so we'll see.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)
jang,
You've got to be joking!!! Where do people come up with this stuff?
Diane
--
do when I go to the doctors. I hear something that sounds scary and don't hear
anything else. He said that it may be the morphine and narcotics in general that
are causing the swelling. The doctor left the room and I started crying. Tull
heard it may be the narcotics, but we can control the swelling, I heard because
I need narcotics,
I will have the swelling for the rest of my life.
Hi Karyn.What kind of doctor was it that you saw for the swelling? Did he say
how narcoics cause swelling or why he thought that was the cause? I've never
heard of edema as a side effect of narcotics, so I'd like to know why the doctor
thinks this is what's happening. Keep your spirits up. If it is one of your
narcotics causing this problem, there has to be another narcotic that can be
used instead. Did the doctor offer any new suggestions for you to control the
swelling?
Hope you're feeling better.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.
In a message dated 8/22/00 9:01:43 PM Pacific Daylight Time, DSimmTaz@...
writes:
<< Hi everyone, I have been really depressed lately and haven't felt up to
posting much! Once I get back on my feet so to say I will be glad to share
more I love you guys! And I will never leave the bored or any of you as
friends. I hope everyone is
doing well!!!!
Hi David,
It is so nice to hear from you. I have been praying for you because I know
you have been in and out of the hospital. Thanks for checking in. We love
you, too.
Karyn
In a message dated 8/22/00 9:45:31 AM Pacific Daylight Time,
shirlf3542@... writes:
<< Hi Karyn, How are you and what did the doctor say. Did you get any
answers
for the swelling? Mary Helen and I are concerned and would like to know how
you are. I hope that this doctor was able to tell you the cause of the
swelling. Shirley
Hi Shirley, Mary Helen, and all,
My renal doctor has ruled out any renal problems. I had a Doppler study to
rule out any blood clots, that was negative, I had a chest Xray to rule out
any heart failure, that was negative. All of my blood work is okay, I remain
anemic, but all of my liver and kidney function tests are all normal.
I have an echocardiogram next week.
This swelling is so weird. I know that Tammy is so swollen, Steve says she
looks pregnant. I now have a lot of fluid in my abdomen, like Tammy.
Is anyone else having problems with swelling?
Thanks for caring about me.
Karyn
In a message dated 8/21/00 7:14:33 PM Pacific Daylight Time,
shirlf3542@... writes:
<< What did the doctor say about you today? I have been thinking about you
all day with what you are going thru. Please keep me informed about your
swelling and what the doctors have said is the real culprit. Karyn I wish
only the best for you and hope that you get the swelling under control very
soon. Keep on thinking positive and don't let it get you down. Your Friend,
Shirley
Hi Shirley, and all,
That post meant a lot to me. Particularly the line about not letting it get
me down. It is so easy, isn't it. I took my friend Tull with me to the
Doctor's. I did the same thing I usually do when I go to the doctors. I hear
something that sounds scary and don't hear anything else. He said that it may
be the morphine and narcotics in general that are causing the swelling. The
doctor left the room and I started crying. Tull heard it may be the
narcotics, but we can control the swelling, I heard because I need narcotics,
I will have the swelling for the rest of my life. Anyway, I was laying on the
couch with my legs elevated, when Dr. Hellman's nurse called to tell me that
the doctor was concerned and wanted to know how I was. She will call tomorrow
to see how my weight is. That's nice. I feel cared about. From him and all of
you.
Thanks,
Karyn
Hi all, thought this looked new and interesting.
http://www.insulin-free.org/stories/rebello.htm
In a message dated 8/23/00 4:10:43 PM Eastern Daylight Time,
vkastukevich@... writes:
<<
to Dr. Warshaw in Mass General who immediately wanted to do the
Whipple procedure to remove head of my pancreas. I dont feel good
about it-Has anyone had this done? Has it helped? Was it done by
him? Please help me-I don't know what to do. Also went to Hartford
Hospital-Doctor there said same WHipple Operation. I have been going
to the same Internal Medicine Group and feel comfortable there-Dont
know about this whipple though-ANy help would be great-Thanks Veronica
Hi Veronica, You have come to the right group. We know what you are going
thru. We will all help you all we can. I went to Dr. Warshaw and at that
time I did not have a documented pancreas attack so he did nothing for me.
Now he might feel differently. From what I have heard he is supposed to be
the best. There is a person on here who was operated on by Dr. Warshaw.
Maybe he can help you. Just hang in here with us and you will get more
responses. If I can help or support you just write me. Shirley
Hi-Looking for some feedback out there-I got this email and website
address from my brother who lives in Indiana-who mailed me the
article
of Karyn Williams for the newspaper. I live in Connecticut and felt
so good reading the article because I have had Chronic Pancreatitis
for many many years. I am 39 years old and have been having attacks
since I was 18 years old. It started off as a cyst on my
pancreas/duodeum/small intestine and one other organ when I was 15
years old-an exploratory operation was done and it was drained. I was
cut from bellybutton to under my breasts. I was never a big drinker.
I have not had anything stronger than wine or light beer in over 15
years and have not touched alcohol in over two years. They always
blame it on that or the Gallbladder. My Gallbladder is perfectly
healthly as viewed in Ercps and a scope test I have had done over and
over along with hundreds of CT Scans. I had a very bad attack jUly
27th where my lipase and amalise levels were over 6000 and 1400-I end
up calling 911 and being rushed to hospital. My path has brought me
4
years ago to Yale where DR. Topazian cut a duct I think the procedure
was called a splinker or something like that where he cut the end of
the bile duct to help the pancreas juice flow better. That did not
help got sick right after and on the average have 2-5 attacks yearly.
As I get older I find it harder and harder to bounce back-Very
depressed-very painful in my back and stomach and nauseos often.
Find
I am able to eat fewer and fewer foods as I go on. The I was
referred
to Dr. Warshaw in Mass General who immediately wanted to do the
Whipple procedure to remove head of my pancreas. I dont feel good
about it-Has anyone had this done? Has it helped? Was it done by
him? Please help me-I don't know what to do. Also went to Hartford
Hospital-Doctor there said same WHipple Operation. I have been going
to the same Internal Medicine Group and feel comfortable there-Dont
know about this whipple though-ANy help would be great-Thanks Veronica
Well we got a call from the doc today and Tam has to go for a bunch of tests
for the swelling today. Tams sisters and mother have been giving her a lot of
greif the last few days. They keep telling her "its the drugs causing all the
problems. Get off all the damn drugs." OK get off the pain meds and be in
unbearable pain get off the nausea meds and throw up worse and get off the
depression meds and live a life of hell. Tam had the right idea she told them
if they want to help educate yourself on the desease. DUMB ASSES !!!!!!! they
are puting her in a deeper depression than she already is. on a good note my
babby girl had her first day of kidnergarten today I have to pick her up and
then off to the hospital for the tests. Tam is having a fit about Bregan
going to school. We still have one more left home Burke he is 3 Well I will
let you all know how everything goes
Tam & Steve
In a message dated 8/22/00 9:01:33 PM Pacific Daylight Time, DSimmTaz@...
writes:
<< I have been really depressed lately and haven't
felt up to posting much!!! andre' and Karyn please don't feel that I have
abdonded you guys
Speaking of Andre has anybody heard from him. I am worried because the last
he posted he wasnt doing very well. Andre please if you are reading the
post's just let us know how you are doing.
Tam & Steve
In a message dated 8/23/00 9:54:06 AM Central Daylight Time, bandscox@...
writes:
<< I will try to keep up on
the weekends - which means that I will miss much.
Love you, Staci
BandScox@...
staci - we will look forward to hearing from you when you are able. you'll
have to keep us posted on how you are doing in school! take care, debbie
WOW!
I got online and read some very HEATED posts. I am not going to get in the
middle of everything because somehow I missed some of them. However I will
just go on as I have discussing and loving the people here. We do however
need to let it go.......And remember, someone said something about making one
feel guilty.... One cannot make anyone feel anything. That person reacts and
feels the way they are going to feel.
Keba-
Welcome! I love your spunk. I hope you can find a treatment for you panc.
which causes the least bit of pain.
Debbie - I have been praying for you.
Bruce - I miss you
Everyone - I pray about the entire group all the time. I am starting back to
school so that you will here from me very seldom. I will try to keep up on
the weekends - which means that I will miss much.
Love you, Staci
BandScox@...
Shirley
I can't believe all that you have been through! Is there a way they can 1)
scrape the scar tissue in your duct 2) give you a medicine that will shrink
your scar tissue? I am a total dufus about this and I just want to help you.
I pray for you every day in my car (as I do for many of you out there)
I took the Lupron injection yesterday as it is my only hope. We'll see..
Love you,
Staci
In a message dated 8/21/00 7:04:00 PM Pacific Daylight Time,
shirlf3542@... writes:
<< I miss everyone who has left the group. Today Celeste left also. She
will be really missed. I love all the members. Your Friend, Shirley
Hi Shirley,
I am up working on a few emails, in the order they came in, LOL, sometimes I
start at the latest and work backwards. I just want to agree with you how
missed everyone is. Love is a very important part of what can keep us
together.
Karyn
In a message dated 08/22/2000 6:55:19 PM Eastern Daylight Time,
shirlf3542@... writes:
<< Yesterday I decided to take my blood sugar in the afternoon because I was
feeling worse. It was 51. This afternoon I took it and my blood sugar was
55. Does this mean that I am a diabetic?
Shirley, doesn't that mean you have low sugar instead? Hyglycemic?
Mary Helen
In a message dated 8/22/00 6:01:15 PM Central Daylight Time,
shirlf3542@... writes:
<< Now I see that he is a gastro dr. What are you hoping for with him?
to tell you the truth - i'm not really sure. just that my gastro dr i had
said he had done all he could do for me. he was wanting to send me to
dallas. but my family dr. and ins. said i could go here to uams. it is
supposed to be a great research hospital. anyway - i don't know if he will
just talk w/me and go over all the records or if he will want to set up some
tets.
debbie
Hi all, I have a question that I hope someone will be able to help me with.
I have never had diabetes and know nothing about it. Yesterday and today I
felt worse and had body pains especially my legs. Since I am on tpn in the
night only I have to take my blood sugar in the evening two hours after I
hook up to tpn and one-half hour in the morning after tpn is stopped.
Yesterday I decided to take my blood sugar in the afternoon because I was
feeling worse. It was 51. This afternoon I took it and my blood sugar was
55. Does this mean that I am a diabetic? I am not eating at all. Thanks
for any information you can give me. Shirley
In a message dated 8/22/00 6:34:27 PM Eastern Daylight Time, djssekis@...
writes:
<<
i finally have an appointment set for a Dr. Sharma at UAMS for Oct. 31. he
must really be busy if that is the closest date we could get. debbie
That is a long time Debbie. What type of DR is he? Shirley
i finally have an appointment set for a Dr. Sharma at UAMS for Oct. 31. he
must really be busy if that is the closest date we could get. debbie
karyn - glad you are at home resting. keep us posted. debbie
Hi everyone,
I see that I have many posts from you. I am not able to write much, but I
wanted to let you know I that I am thinking about all of you. We need to pray
for each other. I am really saddened about the large number of members who
have left the board. Many are staying in touch with me; that means so much. I
pray that God will give me the physical strength and endurance to get the
Network back on its feet, begin the local support group which will be stating
at Indiana University Hospital really, and pull off the preparation for the
Symposium coming up. The date has to be changed to accommodate some of the
speakers schedules. Celeste wrote and suggested that we video it with a
videocan so I can put it out to the Network. That's a great idea. I spoke
with Becky on the phone and discussed the role the patients will play in the
symposium. We are planning on having a panel of patients to talk about their
stories, etc. If anyone is interested in being on that panel let me know. I
may be able to get a Drug Co. rep to pay for travel expenses. It will be in
late Aug or Sept.
SO, I need to go get off my feet again. I will talk to you later. I love you
all.
Karyn
Anyone can call me to at 317-298-7279
Shirley and Mary Helen & everyone
I just spoke to Karyn on the phone and she is ok. She just needs to keep her feet up and rest.
So if you don't hear from her right away don't be worried.
I'm sure she will let you know about her appoinment later. Everyone needs to keep Karyn in prayer. She is needing to rest right now and get better.
Thanks , Becky
Hi Karyn, How are you and what did the doctor say. Did you get any answers
for the swelling? Mary Helen and I are concerned and would like to know how
you are. Please post us and let us know how you are doing. I hope that this
doctor was able to tell you the cause of the swelling. Shirley
In a message dated 8/22/00 10:57:10 AM Eastern Daylight Time,
MaryHelen4@... writes:
<<
<< Karyn went to the doctor today. I am going to write her and see
how she is and what he said. She is so very ill.
Yes, I'll be watching. I'm really worried about her legs.
Mary Helen
Hi Mary Helen, I haven't heard a thing from Karyn today I am going to write
her again. I am so afraid that the doctor might have said something
negative. You know how they are. She probably has to have test done. I
hope you are having a good day. Shirley
In a message dated 08/21/2000 10:04:00 PM Eastern Daylight Time,
shirlf3542@... writes:
<< Karyn went to the doctor today. I am going to write her and see
how she is and what he said. She is so very ill.
Yes, I'll be watching. I'm really worried about her legs.
Mary Helen
In a message dated 8/21/00 10:30:45 AM Eastern Daylight Time,
KarynWms@... writes:
<<
It sounds like we are about both swollen the same. I am having trouble
finding any clothes that fit. I go back to my renal guy today. I am now
taking 120 mg Lasix a day. My legs are starting to weep fluid. He told me he
was sending me to the cardiologist next. I'll let you know how it turns out.
Karyn
Hi Karyn, What did the doctor say about you today? Do you have to have test?
I have been thinking about you all day with what you are going thru. Please
keep me informed about your swelling and what the doctors have said is the
real culprit. Karyn I wish only the best for you and hope that you get the
swelling under control very soon. Keep on thinking positive and don't let it
get you down. Your Friend, Shirley
In a message dated 8/21/00 7:38:43 PM Eastern Daylight Time,
baron@... writes:
<<
AND... I am having the Elastase-1 stool test done... IN the US. I
should have my results Wednesday or Thursday. And my serum Tryspin
test should be in by the end of next week. I'd say if THOSE are
negative (and I believe they will be..yes I do, yes I do, yes I do..),
then I should hang up the idea of having CP. The only test that would
have not been done is an ERCP and EUS. I had MRCP,though. I don't
want to risk an ERCP since all other test have been negative. No use
inviting trouble.
I will have great news and information about the Elastase-1 test in
two days. I am corresponding with Germany and they have been very
helpfull. I will post the name of the company in the US that does it,
but remember it is not FDA approved yet. They have asked me politley
not to give it out yet so that they are not swamped, ... but they are
expenting to here from a lot of you was they are prepared. Why they
took me on.. I haven't a clue. I sent my stool sample in dry ice, FED-
EX off today to them. The test was only $55.00. I told them I cannot
keep this a secret for vey long, for all of you in here. They know
that there is a HUGE demand, as there is in any new diagnostic.
Anyway.. I will be back
Greg Eric Schoenborn
Hi Greg, everything sounds great for you and I am so glad. You are really
something else with the way you have taken charge of your health problem. I
wish I had your talents. Please let us know what the results are and of
course the new information you have found. I wish you good health Greg and
hope you never have pancreatitis. Shirley
Ok Karyn... you've seen it all.
Here is an unfair question with which I know you will not want to
answer..... but give me a guess.
I'm in great health, 47, and MAYBE my pancreas is just a tad messed
up. Nothing shows up on test, but, I do have very very mild
pancreatitis. That is the scenario. (I still don't have proof... and
do not want it.)
Provided I follow my diet, supplements, exercise, no cigs and other
nasties, how much longer do you think I could live before my pancreas
gave out?
Give me your best shot. Again, no stones, no cysts, no stritures, no
portal enlargemnt, normal blood work. Just steat and very very mild
back pain.
I can not find stats on this anywhere.
AND... I am having the Elastase-1 stool test done... IN the US. I
should have my results Wednesday or Thursday. And my serum Tryspin
test should be in by the end of next week. I'd say if THOSE are
negative (and I believe they will be..yes I do, yes I do, yes I do..),
then I should hang up the idea of having CP. The only test that would
have not been done is an ERCP and EUS. I had MRCP,though. I don't
want to risk an ERCP since all other test have been negative. No use
inviting trouble.
I will have great news and information about the Elastase-1 test in
two days. I am corresponding with Germany and they have been very
helpfull. I will post the name of the company in the US that does it,
but remember it is not FDA approved yet. They have asked me politley
not to give it out yet so that they are not swamped, ... but they are
expenting to here from a lot of you was they are prepared. Why they
took me on.. I haven't a clue. I sent my stool sample in dry ice, FED-
EX off today to them. The test was only $55.00. I told them I cannot
keep this a secret for vey long, for all of you in here. They know
that there is a HUGE demand, as there is in any new diagnostic.
Anyway.. I will be back
Greg Eric Schoenborn
A young nurse was leaving the office late one evening when he found the
Doctor standing in front of a shredder with a piece of paper in his hand.
"Listen," said the Doctor, "this is a very sensitive and important document
here, it is the cure for pancreatitis and even I have not read it yet, but my
secretary has gone for the night. Can you make this thing work?"
"Certainly," said the young nurse. He turned the machine on, inserted
the paper, and pressed the start button.
"Excellent, excellent!" said the Doctor as his paper disappeared inside the
machine. "I just need one copy."
In a message dated 8/20/00 8:08:35 PM Central Daylight Time, bandscox@...
writes:
<< Speaking of crying, all the beauty found here on this website has made me
cry
today. I do not know why - maybe I'm vulnerable from just getting out of
the
hospital. But the courage, the expression of true feelings, the
encouragement from people who are suffering - everything to me reflects Gods
plan for this world. Thank you all. It is a blessing to be among you.
Love,
Staci
Staci - so glad you are home from the hospital. i know you are too. there
is something about sleeping in your own bed. take care of yourself.
debbie
In a message dated 8/20/00 12:50:19 PM Central Daylight Time,
baron@... writes:
<< The reason it is so important to me is that every test I have had
done has come up negative (good..very good) and my gastro thinks I'm
nuts for thinking I have PC. I know where it hurts (at the tail), it
has hurt a year and one half and at the same time I have had steat
and lost 17 pounds.
Greg - all of my tests that I have had were all negative also.
i always have high amalaze (sp) when i got into the emergency room. three
years ago when i had my first attack, the er doctor told us it was pc.
debbie
In a message dated 8/20/00 9:48:55 PM Pacific Daylight Time,
briffle@... writes:
<< When I saw the Rhuemy, he said some people just do that! (Quack)
Hi Becky, he must be a quack. It is not normal for people to inflate and
deflate like a balloon. Well, actually, I wish I did deflate. But there are
periods where I can get my ring off or on.
Karyn
In a message dated 8/20/00 9:43:52 PM Pacific Daylight Time,
LenhartROCKO@... writes:
<< Did they find out what was causing your legs to swell? Is anything else
swollen on you Karyn? Tam & Steve
Hi Tammy and Steve,
It sounds like we are about both swollen the same. I am having trouble
finding any clothes that fit. I go back to my renal guy today. I am now
taking 120 mg Lasix a day. My legs are starting to weep fluid. He told me he
was sending me to the cardiologist next. I'll let you know how it turns out.
Karyn
Karyn wrote:
<< take 5 mg, then wait 30 minutes take 7.5 mg next. Then in 30 minutes, the
remaining 2.5 mg, to equal the 10 allowed every four hours.
<< Karyn, Doesn't that equal 15 mg?? Diane
Hi Diane,
OOPS! 5+7.5+2.5+= 15 Sorry.
Make that 5+2.5+2.5=10
Thanks,
Karyn
In a message dated 8/20/00 6:08:45 PM Pacific Daylight Time, bandscox@...
writes:
<< I there a way that you could email me that message of the holding
pattern?
A few of the described my life and it made me cry. It was absolutely
beautiful. Thanks Staci
Hi Staci,
I am not sure what you are referencing. If it something beautiful, I would
love to read. it.
Karyn
In a message dated 8/20/00 5:44:02 PM Pacific Daylight Time, bandscox@...
writes:
<< I am home from a 7 day hospital stay. Talk about having to watch your
nurses!
I love this hospital. They know me by name. The nurses are nice but they
forgot the prescriptions I take everyday. And after 3 days without my
antidepressant, I had a major anxiety attack. And I just noticed that I have
not taken a single synthroid yet! Please be patient with me. I am tired and
I have a tone of posts to look
through. I love you all, Staci
Hi Stacy, welcome home. I know how good it feels to be sleeping in your own
bed. I always have that same problems with my meds when I go into he
hospital. They give me all the meds related to my admission. Somehow,
however, they forget my routine meds, particularly my thyroid and
antidepressant. I have learned to carry them in my purse so if they are slow
in getting them, then at least I can take them for 1-3 days before they get
it together. It's pretty scary inside those hospital and I am a nurse.
<<OK, about pain meds ... almost every one of them gives me relief but
anxiety,
Any ideas? I've used Vicoden (Yuck) Darvocet (It makes me feel as if I will
fall at any minute.) and Tylenol Cod. (Still the best but still jittery)
Staci it isn't uncommon that depression brings about anxiety also. Sometimes
I get nervous when I al depressed. My doctor has prescribed Xanax for those
times. He said it didn't mean I was manic-depressive. I don't take it all
the times, but it sure does help. I would talk to your doctor and let him /
her know this is bothersome for you, There are a lot of different medications
out there.
Again, welcome home. I am looking forward to hearing from you again.
Karyn
due, not, to the general populace of this board, but to certain
factions residing there in, i will be withdrawing membership and
continue posting at other boards. Seeing as how those particular
factions have no problem reading "irrevelant material" that doesnt
pertain to "their disease and or to them personally", while not have
a bug up their ass protesting it, BUT actually applauding it, thusly
showing that there is a double standard, the same as their tongue. I
wont participate on this board wondering if what i am about to send
is going to be a hassle or cause another debate. i would rather go to
where im welcomed without restraint. i have waited out my dismissal,
wondering when someone would post something not containing the word
pancreatitis, and it has come to pass and the response was
predictable to say the least. Confirming what i had hoped was my
misjudgement(regardless of the blatant statements made towards other
people besides myself) and not fact. i have enjoyed my stay for the
most part and helping whomever i could..but now i move on to a board
that wont have me feeling censored and worried about wearing armor to
protect my back! so farethewell.. a (wo)mans gotta do what a (wo)mans
gotta do!!
ps.. i hope i havent left anyone on a lower plateau with this lengthy
message, considering anything with emotion or feelings (and the fact
it has nothing to do with panc)would be above the factions emotional
scope.
celeste and jerry
(flahair2@...)
No she went to the doctor and he agreed something is wrong. he even measured
her stomach, it looks like she is 7 months pregnant. her face, hands, feet
and ankles basicly her whole body is swollen. The doctor sent her for a liver
and kidney function test and it came back negitive. Now I dont know what else
he will test her for. Do you or anyone else have any ideas on what it might
be. Did they find out what was causing your legs to swell? Is anything else
swollen on you Karyn ? Tam & Steve
P.S. they did a pregnancy test just in case and it was negitive
Hi Steve!
I found this so weird that Tam is blowing up like a balloon! My ankles, knees and hands have been swelling! My hands swell so much that I can not get my wedding rings off. Right now the ankles are swelling badly! When I saw the Rhuemy, he said some people just do that! (Quack)
Tell Tam she is in my prayers and let me know if she finds something out!
Becky
In a message dated 8/20/00 8:54:38 AM Pacific Daylight Time, KarynWms@...
writes:
<< Hi Tammy and Steve,
I am trying to catch up on some posts I have missed. Have you found out
anything about the swelling, what causes it, or how to treat it?
No she went to the doctor and he agreed something is wrong. he even measured
her stomach, it looks like she is 7 months pregnant. her face, hands, feet
and ankles basicly her whole body is swollen. The doctor sent her for a liver
and kidney function test and it came back negitive. Now I dont know what else
he will test her for. Do you or anyone else have any ideas on what it might
be. Did they find out what was causing your legs to swell? Is anything else
swollen on you Karyn ? Tam & Steve
P.S. they did a pregnancy test just in case and it was negitive
Welcome home Staci,
Relax and put your feet up!
God Bless!
Becky
Hi Greg,
Just a thought...have they mentioned Irritable Bowel Syndrome?
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)
It has been my experience that if I take 5 mg, then wait 30 minutes I would
take 7.5 mg next. Then in 30 minutes, after an hour has passed since your
first dose, then I would give myself the remaining 2.5 mg, to equal the 10
allowed every four hours. The question remains then at what point is the 4
hours up. Four hours after the initial 5 mg or 4 hours after the last 2.5
mg.
Well, IMHO< only, I would start counting after the first 5 mg. Especially,
considering that 10 mg is a relatively low dose in the first place
Karyn,
Doesn't that equal 15 mg??
Diane
The reading, THE BRICK was beautiful. No other words are needed to
express what this says to a person.
Dearest Debbie -
I have read a few of your posts since I came home from the hospital. I am
here for you and have added you to my prayer list. Do you know, how much you
all make me cry and empathize and love you all?
God bless you Debbie,
Staci
--
love this hospital. They know me by name - I've been in there 3 times since
May, and many times before. The nurses are nice about treating me, but
they forgot the prescriptions I take everyday.
Nope, not the nurses; blame your doctor. The nurses can't give any meds without
a doctor's order. Your doctor should have done a history & physical, which
includes your meds; doc had to order your meds before they could be given. Of
course, if you told your nurses you weren't getting your routine meds, they
could have nagged the doc to write the orders he should have written without
being nagged.
Anyway, welcome back home. Be kind to yourself. Your anti-anxiety meds take a
while, but they'll kick in again. Rest, relax, don't demand too much of
yourself.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.
Hi all!
I am home from a 7 day hospital stay. So I have been out of touch. I feel
like a wet rag right now... on drugs and a clear liquid diet. My lipase shot
up to 20,000, yes, twenty-thousand! On last Sunday (I have no clue what the
date is). I went in to church to sing (which is the worst thing to do
because you have to tighten your stomach to sing) and went into the ER during
the sermon (and the minister is a great speaker too)! During this weakling
stay, I missed 2 auditions! Because my lipase was so high, it took a while
to settle down. Yesterday, they sent me home with a level of 1400. (still
risky) Anyway, I am home and feeling weird.
Talk about having to watch your nurses! This time was definitely the worst!
I love this hospital. They know me by name - I've been in there 3 times
since May, and many times before. The nurses are nice about treating me, but
they forgot the prescriptions I take everyday. And after 3 days without my
antidepressant, I had a major anxiety attack. ( You are not supposed to take
yourself off of these without Doctors approval)
And I just noticed that I have not taken a single synthroid yet....!
OK, about pain meds.... almost every one of them gives me relief but anxiety,
Any ideas? I've used Vicadin (Yuck) Darvocet (It makes me feel as if I will
fall at any minute.) and Tylenol Cod. (Still the best but still jittery)
Please be patient with me. I am tired and I have a tone of posts to look
through.
I love you all,
Staci
I saved the pages and put them on MY SERVER.
http://www.schoenborn.net/panc/elastase1.htm
http://www.schoenborn.net/panc/elastase2.htm
http://www.schoenborn.net/panc/elastase3.htm
http://www.schoenborn.net/panc/elastase4.htm
http://www.schoenborn.net/panc/elastase5.htm
http://www.schoenborn.net/panc/elastase6.htm
http://www.schoenborn.net/panc/elastase7.htm
and
http://www.schoenborn.net/panc/elastase_more_proof1.htm
Greg.. they do the bentiromide test in the U.S. it also detects panc
insufficiency. They may try to sidetrack you into something else-
docs told us they dont do them... then where i asked do they do
them.. he said OH
done!
In a message dated 8/20/00 1:57:47 PM Eastern Daylight Time,
baron@... writes:
<<
go to:
http://www.dechema.de/biotech/vbukarte/schebo.htm
ScheBo Pancreatic Elastase 1 in stool samples
Indications
Greg and Karyn I am unable to bring this site up. Karyn, are you able to get
it? Shirley
go to:
http://www.dechema.de/biotech/vbukarte/schebo.htm
ScheBo Pancreatic Elastase 1 in stool samples
Indications
abdominal pain: Is the pancreas involved ?
diagnosis of cystic fibrosis related to the involvement of the
pancreas
control of exocrine pancreatic capacity of patients with endocrine
insufficiency (Diabetes mellitus)
monitoring of patients with mild pancreatic insufficiency
Advantages
most powerful indirect pancreatic function test
high sensitivity and high specificity (
superior diagnostic efficiency, excellent correlation with costly
gold-standard (invasive pancreatic function test)
Elastase 1 determination is not influenced by substitution therapy.
ScheBo Pancreatic Elastase 1 in serum
Indications
diagnosis or exclusion of acute pancreatitis
clarification of pancreatic participation in abdominal pain
Advantages
more sensitive and specific than amylase, lipase and pancreatic
amylase
immunological detection less tedious than enzymatic determination
(amylase, lipase)
long half-life of pancreatic elastase 1 allows diagnosis even several
days after onset of acute pancreatitis
Karyn... Thanks for the reply.
The reason it is so important to me is that every test I have had
done has come up negative (good..very good) and my gastro thinks I'm
nuts for thinking I have PC. I know where it hurts (at the tail), it
has hurt a year and one half and at the same time I have had steat
and lost 17 pounds. I HOPE I AM CRAZY! I hope to hang my head in
shame in front of my Gastro for pretending to being a doctor. I pray
that it is not CP.
But you know how very difficult it can be to diagnose the disease.
Just ask Celeste and Jerry.
After reading about this new elastase-1 stool test... it seems so
definitive, easy and non-evasive. If I could take the test, and it
came up negative, I could shed most of the HORRIBLE ANXIETY I have
lived with for 3 months. So...... anything you come up with would be
great.
I know it's in Germany... I may just fly there. What the heck... my
last name is Schoenborn.... I'm very desperate.
Thanks Karyn.....
Greg Schoenborn
greg@...
http://www.schoenborn.net
Greg, I don't know where you can get it. But why is it so importnat? I'll
read the web page.
karyn
Everyone, anyone....HELP! Do you know where I can get the Elastase-1
stool test done in the USA? Has anyone had this test done?? It is a
simple stool test that is 93% definitive in representing pancreatic
insuffenciency. This is the dilema I am in right now. I NEED this
test. Please read the web page.
http://www.schebo.com/gastro/en/stool.html
It explains it all.
Please email direct
greg @ schoenborn.net
if you have any
information regarding this. Or if you want, please call me @ 703/407-
8553 or 703/820-3757. I would bow down to you and kiss your feet if
you can tell me where I can get this done. Seems it's only in Europe
right now.
I am going to repeat this message if that is a ok with everyone for
hopes of an answer.
Greg Eric Schoenborn
http://www.schebo.com/gastro/en/stool.html
it is worse in the mornings when she wakes up. Her hands and ankles are huge
and it hurts to move them Tammy & Steve
Hi Tammy and Steve,
I am trying to catch up on some posts I have missed. Have you found out
anything about the swelling, what causes it, or how to treat it?
<
Hi Jang,
This is how I was feeling when they did blood work and found me to be
severely iron deficient. I had that 6 hour iron infusion and it really
helped. I had my boyfriend put some blocks under the foot of my bed to put me
somewhat in the trendelenburg position. I am not sure if that was a good idea
or not? Hope you are feeling better, too.
My employer seemed to replace my position pretty quick. Makes me think I
wasn't that valuable of an employee. Oh well.
Karyn
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.
PANCREATITIS SUPPORT NETWORK
Online e-mail group
To reply to this message hit "reply" or send an e-mail to:
Pancreatitis@egroups.com
To subscribe to this e-mail group, simply send an e-mail to:
Pancreatitis-subscribe@egroups.com
To unsubscribe from this group, simply send an e-mail to:
Pancreatitis-unsubscribe@egroups.com
Everyone, anyone....HELP! Do you know where I can get the Elastase-1
stool test done in the USA? Has anyone had this test done?? It is a
simple stool test that is 93% definitive in representing pancreatic
insuffenciency. This is the dilema I am in right now. I NEED this
test. Please read the web page below. It explains it all.
Please email direct ( greg@...) if you have any
information regarding this. Or if you want, please call me @ 703/407-
8553 or 703/820-3757. I would bow down to you and kiss your feet if
you can tell me where I can get this done. Seems it's only in Europe
right now.
I am going to repeat this message if that is a ok with everyone for
hopes of an answer.
Greg Eric Schoenborn
http://www.schebo.com/gastro/en/stool.html
In a message dated 8/19/00 8:48:35 PM Pacific Daylight Time,
rastif2020@... writes:
<<. I am respiratory therapist and have been for the past 21 years. a
tracheotomy is not the first choice for an artificial airway. If something
happens in surgery then they would intubate you with a temporary airway.
something that would probably be taken out in a few days. A trach is more
permanent have you been having problems with your breathing? Any shortness of
breath? have you been vomiting and perhaps aspirated into your lungs? Let me
know I am hoping to give you some kind of certainty of not being trached.
this just does not sound right to me. JIM S
Hi Jim, Shirley, all,
I wondered the same thing. I am only saying this to help you make a better
decisions.
But I forgot the context of your conversation with your doctor.
Karyn
Someone sent this to me. I thought it related to my disease. I sometimes get
so obsessed with my pain and my problems I do lose sight of some other things
in life.
Karyn
The Brick
A young and successful executive was traveling
down a neighborhood street, going a bit too fast in
his new Jaguar. He was watching for kids darting
out from between parked cars and slowed down when he
thought he saw something. As his car passed, no
children appeared. Instead, a brick smashed into the
Jag's side door! He slammed on the brakes and spun
the Jag back to the spot where the brick had been
thrown. He jumped out of the car, grabbed some kid
and pushed him up against a parked car shouting, "What
was that all about and who are you? Just what are you
doing?" Building up a head of steam he went on.
"That's a new car and that brick you threw is going
to cost a lot of money. Why did you do it?"
"Please mister, please. I'm sorry, I didn't know
what else to do," pleaded the youngster. "I threw
the brick because no one else would stop..."
Tears were dripping down the boy's chin as he
pointed around the parked car. "It's my brother," he
said. "He rolled off the curb and fell out of
his wheelchair and I can't lift him up."
Sobbing, the boy asked the executive, "Would you
please help me get him back into his wheelchair?
He's hurt and he's too heavy for me." Moved beyond
words, the driver tried to swallow the rapidly
swelling lump in his throat. He lifted the young man
back into the wheelchair and took out his handkerchief
and wiped the scrapes and cuts, checking to see that
everything was going to be okay. "Thank you and May
God bless you," the grateful child said to him.
The man then watched the little boy push his
brother down the sidewalk toward their home. It was
a long walk back to his Jaguar...a long slow
walk. He never did repair the side door. He
kept the dent to remind him not to go through life so
fast that someone has to throw a brick at you to
get your attention.
=20
God whispers in your soul and speaks to your heart.
Sometimes when you don't have time to listen, He has
to throw a brick at you.
It's your choice:
Listen to the whisper-or wait for the
brick...
These are web sites that Celeste. Thought others would be interested in them.
Karyn
<A HREF="http://www.hmcnet.harvard.edu/brighampain/padmin/rfl.html"
ional Therapy: Radiofrequency Lesioning FAQs</A
<A HREF="http://www.papc.com/radiofrequency.html"
<A HREF="http://atlas.automatizace.cz/transponders_en.html"
automation: Radiofrequency</A
<A HREF="http://www.aca.gov.au/frequency/"
Authority: Radiofrequency Planning</A
<A HREF="http://www.ritamedical.com/physicians.html"
option for soft tissue ablation</A
<A HREF="http://www.balintpainmanagement.com/"
- Advances in Pain Diagnosis and Treatment</A
HREF="http://willie.cc.nih.gov/rfa/background.html"
Background Information</A
<A HREF="http://www.arorapainclinic.com/radio.html"
<A
HREF="http://www.dcmsonline.org/jax-medicine/1998journals/october98/facetdener
vation.htm"
Pain</A
<A HREF="http://chppm-www.apgea.army.mil/rfup/website/publicat.htm"
uency/Ultrasound Program, Publications</A
<A HREF="http://www.painhealth.com/InTheNews.htm"
The Comprehensive Pain Treatment Center</A
In a message dated 8/19/00 8:40:33 PM Pacific Daylight Time, MaryHelen4
writes:
<< I'm slow on the uptake lately. Did you say you wouldn't let Joyce
Flueckiger interact with you???? Did that realization just put a smile on my
face! And also made me realize how feeling out of control I was -- that
never occurred to me -- to ask for another nurse practitioner. She really
pushed me around â and, as usual, I let her. Good for you! Mary Helen
Hi Mary Helen,
Absolutely. She pushed one to many buttons. And that button was when she
started to make a judgment about much pain I was in. Nobody, I mean nobody
does that. So when I spoke to Dr. Sherman about her, he agreed that she had
a rather aggressive personality he said it was okay for me to switch to Anne.
Apparently, they split his patients in half. Anne couldn't be a kinder,
softer, gently nurse practitioner. She seems to always go that extra foot for
me.
Karyn
In a message dated 8/19/00 2:20:40 PM Pacific Daylight Time,
shirlf3542@... writes:
<< Dear Karyn, I am so sorry about your health. Isn't this the most terrible
disease? When I had ovarian cancer there was a set plan of attack. But with
this disease there is no set medical plan to stop the deterioration. One
just has to suffer and let their body get destroyed. I am a person who has
always tried to eat the right foods, never drank alcohol, or smoked. Now I
have to sit here and just let my body fall apart and have no control over it.
I know I feel the same way. It seems like I wake every day and go "Hmmm, what
should fall apart today?" I do know one thing for certain, nothing will take
my spirit from me. I have to fight to keep it because somedays it gets pretty
overwhelming, but my spirit is mine to keep, it is what makes me carry on.
<< When Dr. Lehman said to me I could let my pancreas just destroy itself and
I
think he said then I wouldn't have the pain I have now. I am not real sure
exactly what he said about this but it was something like that.
He is talking about Pancreatic Burnout. This is when the pancreas literally
quits functioning. It is like watching a fuse slowly burn out. The theory is
that the Pancreas is no longer able to produce enzymes, or hormones and
cannot be affected and produce pain. Listening to many people who has had
this occur, the results vary tremendously. There are a few who had burn out
occur, maybe they can share their experiences.
<< I mentally leave my body when I am scared of what the doctor will tell me.
I don't know at the time he is talking to me that I am doing that. My
husband has to go with me so he can tell me what the doctor said
This happens to me almost every office visit. I can get stuck on one word or
phrase that I don't understand and am fearful about, and the rest is history.
I don't have a clue what the doctor says after that. I always try to take
someone with me, who can "hear" what is said and can tell me about it
afterwards. I am the first to tell anybody that what I hear the doctor say
may not be what the doctor said.
<
I do, too. I am eager to see the cardiologist. What is the worst is the not
knowing.
Karyn
I agree Karyn. I too often ask myself after each crisis, how I made
it through. GOD has most definitely given me the strength that I
have.
Marie
In a message dated 8/18/00 7:38:44 PM Pacific Daylight Time,
poncho9191@... writes:
<< Basically as long as I don't go over 10 mg in 4hr I'm OK right?
<<Just in case Karyn is late answering,
Oh, by all means. And in case others didn't know, anyone can jump into any
post they want. That's why I always try to address my posts to the writer and
all. I never know when I am down with the referee counting to 10. LOL.
<< BTW, I would suggest not getting too precise about measuring pain meds.
Your script is a standard issue and it would be the same dosage whether you
were a 110 lb tough woman or a woosie 200 lb man. (Us men hate pain you
know).
Exactly Poncho, especially the man thing. But seriously, use your judgment,
and exercise caution.
<< I may catch a lot of flak for this post but just felt I needed to respond
No flak here. But I don't get why you felt there would be some. We always
need that humor.
Karyn
In a message dated 8/18/00 6:35:09 PM Pacific Daylight Time,
dhollis062@... writes:
<< Thanks for the tip on titivating. What kind of dose do you use in 30min if
you have no relief. Should I take enough to equal the highest dose? 10 mg or
less? Basically as long as I don't go over 10 mg in 4hr I'm OK right? Diane
It has been my experience that if I take 5 mg, then wait 30 minutes I would
take 7.5 mg next. Then in 30 minutes, after an hour has passed since your
first dose, then I would give myself the remaining 2.5 mg, to equal the 10
allowed every four hours. The question remains then at what point is the 4
hours up. Four hours after the initial 5 mg or 4 hours after the last 2.5 mg.
Well, IMHO< only, I would start counting after the first 5 mg. Especially,
considering that 10 mg is a relatively low dose in the first place.
Nurses, any other suggestions, corrections?
The bottom line is that you feel comfortable.
Karyn
In a message dated 8/18/00 6:06:54 PM Pacific Daylight Time,
dhollis062@... writes:
<< If you take the pain meds when the pain is minor, you may not have to get
to major pain that is much harder to control. As far as addiction, I have
seen studies that point out that when a person takes pain meds for pain
rather than a buzz, addiction does not occur. You do build up a tolerance and
need higher doses, but that is different from addiction. Diane
That is very true. As a nurse we call it the difference of managing pain
before it manages you. Once you have slipped into chasing the pain, it is
very hard to catch up.
That is also very true about the difference between addiction and dependency.
So few people understand that. Even my daughter calls me a drug addict. Of
course, she may be coming from all the literature and move of drugs through
school. Yet, I have nurses and doctors tell me to watch out because I will
become an addict.
Thanks for sharing that difference. I hope it helps others here to be
assertive with their doctors when addressing pain management.
Karyn
In a message dated 8/18/00 5:13:01 PM Pacific Daylight Time, dcp6364@...
writes:
<< You are by far one of the toughest people I know, You have been through so
much and are continuing to fight this illness that keeps claiming a part of
your body. Even though you are very sick, that doesn't mean you have to give
into it. I know you're tough, KEEP FIGHTING. Marie
Hi Marie, and all,
Actually one of the things I noticed about most all of us is the high degree
of perseverance that we have. We do get down, depressed, and want to give up
at times, yet given a few moments of respect, we all seem to get up and take
back our livelihood.
I still want to reach out and help those who are still suffering alone and
lonely. I know that God's love is abundant within and around us. That's how I
want to see it anyway; that I see the God in you, see the God in me, see the
God in you. Nobody could endure the pain that we do, if we weren't surrounded
by guardian angels. Because, every time, I come through another procedure, or
another really bad attack, I ask myself, How did I do that?
Karyn
In a message dated 8/18/00 4:45:58 PM Pacific Daylight Time,
shirlf3542@... writes:
<< No to the feeding tube. I had that already and it made me very sick. He
said trach. The way that I took it is if I have the surgery and am close to
death they would put a trach in to keep me breathing. Scary!!!!! That
doesn't sound like an option. Any comments from you are welcome please. Are
you or others in the
group able to eat? Are any others on TPN? Thank you, Shirley
Hi Shirley,
I couldn't go with a feeding tube either. I wouldn't even let them try it. I
don't care how nauseated I get. And regarding that trach. That's still weird
to bring it up like that in a conversation. I don't want that either.
As far as eating. I eat whatever I want because everything makes me sick. I
am fortunate that I can get Zofran, the miracle, very expensive drug for
nausea. I have to take one every time I eat.
I used to be on TPN for about four months. I didn't mind it really. It sure
cleared up the nausea. Unfortunately I gained 40 pounds while I was on it.
And I have barely taken off any. I was overweight to start with.
One reason I don't pay too much attention to the food I eat is that I take
multiple vitamins and minerals and herbs recommended for my condition. I
think my absorption is pretty messed up, but it couldn't hurt.
Karyn
In a message dated 8/18/00 10:54:41 AM Pacific Daylight Time,
djssekis@... writes:
<< Karyn - when will they do tests on your heart? let us know before you go.
by the way today and yesterday i have been having some pains right under my
right rib-kind of where my gall bladder would that be from my pancreas? i
think most of you talk about hurting on the left side. curious. thanks,
Debbie
Hi Debbie, and all,
I noticed that, too, that most people hurt on the left side. That is where
the head of the pancreas is and most of the developmental anomalies occur. I
have been suffering from diplopia, double vision for almost two months. NO
kidding, there are two of everything. I thought they were related to my
multiple meds. I went to see an Ophthalmologist who referred me to the
Neuro-Opthamologist. In his report he stated that this was more than likely
caused by the overall health problems caused by the Pancreatitis, with
subsequent deterioration of multiple organ systems.
That was depressing. He did say that I could have prisms ground into my
glasses to help. He said he could do surgery, but it seems as though my
health is going to continue to deteriorate and that would mean he would have
to do more surgery.
So, who knows. I think that all of our body systems are interrelated and when
one fails, another compensates until it becomes too great, then it fails.
I, of course am only speaking from my experience, and I have chronic
idiopathic calcifying Pancreatitis.
Karyn
In a message dated 8/18/00 10:17:13 AM Pacific Daylight Time,
ReeAnnEgroups@... writes:
<< I am doing more research on the net as I am learning the proper
terminology.
This is an excellent site for ERCP and diseases warranting the procedure...
http://www.asge.org/resources/manual/bpe_role1.html
Hi ReeAnn, and all,
I had lost this web site. I'll add it to the favorites, too.
I am glad that you are able to celebrate the good days, and have a fair sense
of humor or coping regarding children. That helped me this morning, because
my 16 yr. old pregnant daughter hates me too. OOOh, the testing of
unconditional love. I am sure that it is hard for her to continually hear me
moan and cry.
Take care, stay in touch.
Karyn
Thanks for the reply Karyn.
Another question... How was your spleen varicosity diagnosed... CT
scan?? Is that an easy one that they (docs) would have picked up on
with my CT for pancreatitis.... do ya think? I cannot do contrast..
iodine allergy.
I had my fecal fat test done( not the three day one), amaylase and
lipase and serum trypsin (expensive..this one). If they all come back
negative that means that:
CT was negative
MRI was negative
MRCP was negative
Fecal fat was negative
Amalyse was negative
Serum Trysin was negative
The only time I really have pain is when my large bowel is full. Once
it is emptied, the pain passes (90% of it). I've had the pain for a
little over a year with no wieght loss. Weight loss began with low
fat diet in June. The only thing I thought I had was steat. I've been
told with steat and CP that you have bowel movements several times a
day. My steat, if it is that, is only maybe once a day. For example,
last night I ate salmon (fatty fish) , potato (with butter), oily
salad dressing and some real ice cream (small amount) and had really
no steat this morning. Just pain from the pressure of the stool until
it passes. Then it virtually goes away after I pass my stool... but
not 100 % completely. About 90%.
My pain and mucos from my eshophagistis and gastritis have virtually
dissapeared since I began Aciphex. I have only been on it 2 & 1/2
weeks.
I think I need to start to investigate other problems... one of which
I am considering... somatozation.
My splenic or panc tail area of pain has never been horrible... not
ever once. Really not even that bad. Bad enough, though. Hard to
explain the degree of it. My depression is WAY out of control and I
think that has a large play in it.
I think that says it all. I cannot imagine at this point that I have
pancreatitis. More test is more money out of my pocket. No insurance
here. I have paid for all of the above in cash. Yikes.
I am going to slowy increase my fat intake to try and gain some
weight back and see what happens. I did quit smoking in May after 30
years and stopped drinking. It's no wonder I'm wound up tighter than
a piano wire.
Do you think (I know it's just an opinion) I should go further with
more pancreatic test considering that all of the above test will most
likey be negative?
One thing my doc did say was possible Crohns... even though he did a
colonoscopy and saw nothing. He said that it may be my small bowels
playing havoc on me. My next test is a small bowel barium follow
through. It sure seems not to be pancreatitis at this point. Thanks
for all of your help, Karyn, (and everyone else) for my never ending
questions.
Greg Schoenborn
In a message dated 8/18/00 7:59:00 AM Pacific Daylight Time,
MaryHelen4@... writes:
<< I can't believe he hasn't heard of radio frequency treatment. Well, I
wouldn't have heard about it if it wasn't for this board, I guess.
Hi Mary Helen, and all,
I was wondering if anyone had a web site for this.
Thanks,
Karyn
hat is Lupus? What are the symptoms? A while back there was a posting on
sjounors disease of something like that.. dry eyes, mouth, etc.. Could who
ever posted that, please send me the link? I wished I saved the webpage to
favorite places.. Have a lot more questions.. but no time for them now....
HI ReeAnn,
Karen Weston posted that page and I saved the website. It is quite interesting.......
http://www.nih.gov/niams/healthinfo/lupusguide/chppis5.htm
Hope it helps you!
Becky
In a message dated 8/18/00 6:39:48 AM Pacific Daylight Time,
baron@... writes:
<< Karyn... what confirmed your diagnoses?
Hi Greg, and all,
Initially I had a Catscan which showed diffuse calcification. I then had two
of the emphamis ERCP to try to remove the multitude of stones obstructing my
duct. During these procedures they noted that my duct had a large stenosis
where he was not able to pass any instruments through.
The only possibility of opening the duct was through surgery. This confirmed
the diagnosis of Idiopathic Calcifying Pancreatitis. The calcifications were
so diffuse that the distal end of the pancreas was removed. The spleen had a
large varicosity on it, requiring a complete Spleenectomy.
I never had an elevation of my enzymes.
Karyn
In a message dated 8/18/00 3:47:36 AM Central Daylight Time, KarynWms@...
writes:
<< He has run out of ideas for tests to find a cause. I am being sent to a
cardiologist to check and see if I have a blood clot or a mitral valve
prolaspe. I am sick of tests, but I can't walk very well with my legs and
feet so swollen. I only have one pair of shoes I can wear, they Velcro to
fit.
I, of course, this edema problem must have a relationship to the
Pancreatitis. I didn't have trouble with my legs, before I got diagnosed.
Stay in touch.
Karyn
karyn - when will they do tests on your heart? let us know before you go.
by the way today and yesterday i have been having some pains right under my
right rib-kind of where my gall bladder WAS before it was taken, i guess.
would that be from my pancreas? i think most of you talk about hurting on the
left side.
curious. thanks, debbie
Marie,
I guess that was kind of my point...that if you take the pain meds when the
pain is minor, you may not have to get to major pain that is much harder to
control. As far as addiction,I have seen studies that point out that whena
person takes pain meds for pain rather than a buzz,addiction does not ocurr.
You do build up a tolerance and need higher doses, but that is different
than addiction.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)
Hello Everyone,
Thanks for helping answer some of my questions... As a result I am getting
my pain medication change. The Darvon was just taking the edge off and
eliminating my pain. I have been using the darvon for quite some time
because I found it to be one that didn't upset my stomach... Not sure what
the PCP phoned in for me... will be picking it up after work work today...
Poncho - Thanks for the comment about my name.. My mother had to be
different I guess.. Out of 8 kids I was the only one with unusual name...
the rest were Jim, Bob, Jeff, Ed, Kim, Ginger, and Mike. (Ginger I picked
out for my sister....)
Karyn - Really appreciate you comments. I realise your not a doc, but you
do have a lot insight to share...
Elizabeth - I am so full of questions, I hardly know where to begin... A
few follow in this posting....
Karen - I sent a private email asking a whole bunch of questions... And I
do have IBS. Was diagnosed with that about a year ago.
Marie - you were the first to repsond and I appreciate that.
I am doing more research on the net as I am learning the proper termilogy.
This is an excellent site for ERCP and diseases warranting the procedure...
http://www.asge.org/resources/manual/bpe_role1.html
Today has not been one of my better days... GOt up this morning and had to
really push myself to get ready for work. Did not want to do it today.
Feeling nauseated still running to bathroom. Break out into a cold sweat a
few minutes before each trip. Hemrroids have gotten a lot worse since the
ERCP. Used to be just internal.. now external ones too. Have had the dry
heaves twice this morning. Is that normal one week after the ERCP?
Anyway I made it into the office.. but not getting much actual work done
here. Several times each day it is all I can do to keep from falling asleep
at my desk.. yet I can't sleep at night. Have been taking Ambein for about
3 months (since the gall bladder/fundo surgery) and that helps me fall
asleep, but wake up a few hours later and can't go back to sleep.
I try to watch my stress levels... Have a very low keyed, low stress job
and that really helps. But often I feel like my personal life is in
shambles... Widowed for 4 years now. Kids moved out 3.5 yrs ago and at
still a big source of stress... Yesterday I home to a couple of messages on
my answering machine... from one of my twin daughters saying she wanted to
stay with me for about a week.. that she needed a break (travels with her
boyfriend while he drives truck).. Twenty minutes later there is another
message (neither with a number where I can reach her) saying I am a bitch
and she hates me.... Kids!!!!!! They sure are good at breaking your
heart...
What is Lupus? What are the symptoms? A while back there was a posting on
sjounors disease of something like that.. dry eyes, mouth, etc.. Could who
ever posted that, please send me the link? I wished I saved the webpage to
favorite places.. Have a lot more questions.. but no time for them now....
Anyway.. have better get going for now and get some resemblance of work
done today since I am here... Thanks again everyone for replying to me!!!
Lots of Hugs
ReeAnn
In a message dated 8/16/00 10:14:49 PM Pacific Daylight Time,
baron@... writes:
<< I'm still not positive I have CP. I have had CT, MRCP and they are
negative. I do have erosive esophagitis and gastritis. My "steat' seems to
come (more often) and go. My doc gave me some CREON to try and it seemed to
help. No more nasty gas and steat.
Hi Greg, I am so glad you are doing okay. And, I am praying that you don't
have Pancreatitis, either. There are a lot of other problems that can mimic
Pancreatitis,
<
I don't have any experience with other bowel problems, but I would imagine
that it could cause these symptoms. Anytime there is irritation,
inflammation, or mal-absorption there is a likelihood of steatorrhea.
<<QUESTION: Does enzyme replacement also work with small intestine
mal-absorbtion problems?
I looked in my drug handbook. It states that it is only utilized in patients
who have pancreatic insufficiency, it is not effective in GI disorders
unrelated to enzyme deficiency. So the question at hand is: are there GI
disorders, other than Pancreatitis that cause enzyme deficiency?
I don't know the answer of that. The one interesting factor is that you have
steatorrhea which has improved with the administration of Creon.
I know there are other folks here that have other GI complaints that may be
of better help.
Karyn
In a message dated 8/18/00 12:46:02 AM Pacific Daylight Time,
briffle@... writes:
<< The question is how are you? Legs still swollen?
Hi Becky,
My legs look like telephone poles. That is what my doctor said anyway. I am
now taking 80 mg Lasix in the morning and 40 mg Lasix in the evening. As a
nurse when I administered that much Lasix to a patient, they were really
sick. Hmmm, I couldn't be that sick?
He has run out of ideas for tests to find a cause. I am being sent to a
cardiologist to check and see if I have a blood clot or a mitral valve
prolaspe. I am sick of tests, but I can't walk very well with my legs and
feet so swollen. I only have one pair of shoes I can wear, they Velcro to fit.
I, of course, this edema problem must have a relationship to the
Pancreatitis. I didn't have trouble with my legs, before I got diagnosed.
Stay in touch.
Karyn
In a message dated 8/17/00 1:12:03 AM Pacific Daylight Time, KebaJ@...
writes:
<< Well, it is nice to know that you didn't hurt yourself. I have been
depressed for the past few days and have thought of killing myself. I
thought about all the people I would leave behind and the people that really
care about me. I Hope that if you get that down again feel free to email me
or give me a call Keba
Hi Keba, Greg, and all,
It is a wonderful thing when we reach out our hands to help each other like
this. I was just thinking about the wide span of stages of Pancreatitis that
are within this Network. This has made me reflect on the different stages of
grief that I have had to go through, giving up has been one of them. I have
to stay in close contact with my support team, and I have actually had to
make a contract with my counselor when I have felt really hopeless. The light
does shine again. It is really by the grace of God that I have gotten through
so many dark valleys. I am glad you are here, Greg, and you too, Keba.
In a message dated 8/17/00 4:46:06 AM Pacific Daylight Time,
baron@... writes:
<< Why is the spleen removed sometimes with pancreatic problems? Thanks.
Greg Eric Schoenborn
Hi Greg, and all,
I was diagnosed with Idiopathic Pancreatitis 8/99. I had a Distal
Pancreatectomy and Spleenectomy 9/99. The reason I had my spleen removed was
due to a large varicosity on the spleenic vein. The pancreas is an elongated
structure which lies horizontal in the abdomen. The tail of the pancreas
extends to the lower part of the spleen. The arteries, blood vessels, come
from the spleen, and the veins flow into the spleen. ( this is very, very
simple explanation, it is really very complicated) The spleen is affected by
the diseased pancreas due to the close proximity of the spleen to the
pancreas and the large amount of vascularity of the bed of the spleen, and
the interdependency of both organs.
I hope that kind of answers it.
Karyn
In a message dated 8/17/00 11:13:34 AM Pacific Daylight Time,
shirlf3542@... writes:
<< Dr. Lehman started doing the ERCPs and stents putting larger stents in
every two months. When he got the duct stretched up to hold two # 5 stents
side by side and I still couldn't eat he told me that my chances to be able
to eat with the puestow had gone down.
So that is where I am now. He removed the two stents and the procedure was
stopped. He said the surgery would be hard on me be