Online web

Shirley, I agree..find a new doctor..but only after you have let this one
know exactly HOW you feel..not just for you but for all the suffering
patients that come after you.
hope you feel better soon
Lacey

Shirley. small but potent.. see doc.. look him in eye..3 small words.. bite
me axxxxxx! and /or American medical assoc.. (it may not mean anything to
him about that )but i went and had to tell doc off that mis diagnosed and
then insinuated that we were addicted to narcs when just had 3 days.. and
jerry was sooo much sicker after gallbladder surgery, and he was a major
jerk!!! after getting help and jerry was better i went back and stunk up his
office and let all hear what an idiot he was... as well as told anyone i came
in contact with, (btw, i left the door open so doc heard me going down hall)
i told everyone i saw hey.. dont go to that doc right there.. and would point
him out.. i stood in hall for 3 hours pointed him out.. then security came
and asked me to leave.. so i did.. not a prob, and not b4 telling guard what
a jerk doc was and omg please please, if you love wife and family dont go to
this jerk....... then waved as we went by to doc.. sure he didnt like it
anymore than i liked jerry being accused of being a drug addict..

Hi Shirl
I had the Whipple Procedure done August of 99. I would say overall the
surgery has helped me. I still have problems, don't get me wrong. I think a
lot of people have problems once they've had surgery. What type of surgery do
they plan on doing? There are a lot of different surgeries they can do on the
pancreas depending on what is wrong. I actually had a tumor on the head of my
pancreas. I don't think I had a lot of options at the time. Just get as much
information as you can and ask a LOT of questions. I pray your surgery will
improve your health. If I can be of any help please feel free to email
anytime. A lot of people in this group have a lot of experience in the
medical field and can probably answer a lot of your questions or lead you in
the right direction to find them. Best of luck to you. I'll be keeping you in
my prayers.
Terri L.

CONGRATULATIONS MELANIE!!!!!!! WE ARE SO ELATED TO HEAR NO CANCER!!!
WONDEROUS NEWS.. PRAYERS DO HELP!!!! YOU MUST FEEL LIKE YOURE ON CLOUD NINE!
(minus the panc probs) i know that feeling of relief.. when we were
correctly diagnosed at shands for the panc and gastroparesis, i was dancing
in the room..(at last validation that we werent nut cases!!!) and poor jerry
was rolling on the floor.. but what a feeling to have it go your way!!!!
Party and enjoy the good fortune!

In a message dated 7/27/00 10:05:28 PM Eastern Daylight Time,
thrasher@... writes:
<< I
don't think people with bad tempers like that need to have scalpels in
their hands!
Thanks Kelly, I sure do appreciate the support that I am getting from my
friends in this support group. I am still shaken. I feel as though a truck
ran over me. I must get stronger though. I am so tired of being a jellyfish
with doctors. I thinks I take abuse from them because I am so needy for
their help. When will I learn that they don't help me? I realize that most
of them don't know how to help me but they put on a good act like they can.
I know this he would never gotten by talking to my husband like that. Maybe
some doctor's know they can abuse women. I hope only some women. Thanks
again, Kelly, Shirley

Lynn,
The cyst showed up on a cat scan that I had done 2 weeks ago at the
ER. Then they did ultra sound and biopsy of the cyst. Under local
they went thru the vaginal wall and took a clip from the cyst. They
also did bloodwork for cancer. Today was the best news I've had in
along long time! Thanks!...Melanie

In a message dated 7/27/00 10:00:29 PM Eastern Daylight Time,
cracker@... writes:
<< I am really sorry that you had to go through that.
Thanks Lacey, and lots of hugs back to you. It's nice to have a friend.
Shirley

Thanks Lacey, I feel like a truck ran over me. My body took a shock and I
got so upset that now I am hurting all over. Maybe one day I will be able to
speak my mind to a doctor. I hope so. I sure wouldn't want my daughter to
accept that kind of treatment. Shirley

In a message dated 7/27/00 9:39:52 PM Eastern Daylight Time,
poncho9191@... writes:
<< Best of luck in whatever arrangement you come to
with your decisions.
Thanks Poncho, I needed that encouragement. I have lost my spunk over the
years of having this disease. Thanks again, Shirley

My god! What a jerk! Is there anyone you can report him to?
I know how you feel, though. These doctors are supposed to be the
"authority" and we are conditioned to respect them. I think that's why
we have a hard time standing up to them. Next time just grit your teeth
and tell him to go to hell. I don't think I'd want that doctor touching
me, much less operating. What would happen if he was in a bad mood? I
don't think people with bad tempers like that need to have scalpels in
their hands!
Kelly

oops now i am having problems with that send button....
Your doctor should NEVER let his feelings get in the way of treating
you..not just medically but as a human being. I had a problem communication
with my GI (and i really like him now) so I wrote out ALL of how i felt and
handed it to him and told him that he had to read it before we could go on.
i wrote everything I was feeling about not being heard, how I had been
treated and what i feared. It worked. I dont know if this guy can act
better so you might want to find another doctor...i dont want anyone
working on me that gets upset if his ego feathers get a bit ruffled. I am
going to really pray you get someone that treats you better cause you
deserve better. I am really sorry that you had to go through that.
hugs,
Lacey

Your doctors behavior is TOTALLY unacceptable.

In a message dated 7/27/00 8:25:13 PM Eastern Daylight Time,
shirlf3542@... writes:
<< I am so disappointed with myself.
I'm so sorry you have that feeling Shirley, I would not be so disappointed. I
would suggest a reevaluation either with your current Dr. or consider getting
another Dr. You might feel better with a cooperative situation between your
Dr. and yourself whoever the Dr. is treating your condition. Treatment would
most likely go better too. Best of luck in whatever arrangement you come to
with your decisions.

In a message dated 7/27/00 7:06:54 PM Eastern Daylight Time,
VLGreenhill@... writes:
<<
Not only do I have chronic pancreatitis, but my almost twelve year
old daughter has it, also. Last year, her doctor was going to put a
stint in her pancreas every two months. He was going to put one in
and leave it for two months. Then insert a new one which was a
little larger. He was going to do this until the opening was the
correct size. Amanda could not tolerate the stents, so we had to
abort that idea.
Vickie
Vickie, do you and your daughter have hereditary pancreatitis. I have a
friend from our church and their children especially the teenage boy has
hereditary pancreatitis. He was so ill they removed all the pancreas except
one-third and the part of the pancreas they removed they sent it to Minn. to
have the islet cells collected and then sent the collected islet cells back
to Cincinnati and injected them into his portal vein in his liver. He is
doing well. Vickie it is bad enough to have this disease but to have your
child sick from it is horrible. I am so sorry. Can I help in any way?
Where do you go to the doctor and what's his name? I just don't know what to
say to you. I am so upset by this news. How is your eating and hers? How
is the pain for the both of you? I only wish that there was something they
could do for all of us. Please Vickie if you ever want to cry or talk about
anything please feel free to say anything to me. I have a daughter and I
know how much we love them. Take care of your self also. Did you go for the
stints every three months? Shirley

Hi all, I have had a very disturbing day. I called the doctor's office and
left a message with the nurse that I needed to go on tpn. She had the doctor
call me back. He called me and was very curt and rude to me. He wanted to
know what I wanted. I told him that the stint that the doctor in
Indianapolis put in my small duct was not letting me eat. I told him that I
have lost 8 pounds in all twenty-eight pounds since this whole pancreas
disease started. I tried to explain to him that I could only be on tpn for
12 hours straight. If I go longer I become very sick. He said that is not
true. He said who takes care of your health. I said the doctor in
Indianapolis puts the stints in. He was getting angrier and said again in a
ruff voice who takes care of your health? I caught on then and said that I
have been to no one in Cincinnati and consider him my doctor. Then he starts
yelling at me that I didn't show for an appointment that I had with him. I
told him that I didn't believe I had an appointment with him and If I did I
certainly apologize for missing it. He said I'll take care of it, meaning
the tpn. See him in Sept. then he hung up. I was so upset and was shaking
all over. I cried and cried. I don't feel well then to have to put up with
that is terrible. My husband came home and I told him what had happened so
he called this doctor's secretary and asked if Shirley had an appointment
that she missed. The sec. said no. As my husband and I remembered back to
the last appointment I had with this doctor he got angry and walked out of
the room on us and didn't tell us to come back at any time. So we left the
office thinking our appointment was over. He was angry because we decided to
go with the doctor in Indiana over him for surgery. He was also angry
because I told him that I had previously been in his hospital and the surgeon
tending to me at that time refused to operate on me because he said that my
pancreas did not have enough scar tissue in it yet to hold the stitches and
there could be a law suit. He replied to us Well, he works for me. I hired
him. Then stomped out of the office leaving us thinking well that's that.
Our time is up. I was told previous to meeting this doctor by the surgeon
who put in my port in that the other doctors didn't like him and wouldn't
talk to him. A few weeks ago when I told him that I was going to Indiana and
having stints placed in my small duct he said that he would work with my
doctor there. He made six calls to the doctor in Indiana and the Indiana
doctor would not take any of his calls. After I calmed down I thought about
how he talked to me over the phone and realized that his inflated ego was
bruised by my going to the doctor in Indiana. He wanted to operate on me.
By the way the surgery he wanted to do was completely different from the one
in Indiana. I don't know who's surgery is right for me maybe none. I do
know that he had no right to talk to me like that. I just wish I had been
able to control my emotions and let him know that I didn't appreciate him
talking to me like that. My husband called him and talked with him about the
tpn and told him that we did not have an appointment that we missed. He said
well you probably left the office before you picked up your appointment card.
He told us nothing about another appointment while we were there. He just
stomped out, angry because his surgeon refused to operate on me. My husband
went easy on him because he thought we might need him warts and all. I wish
I had had the courage to tell him to stop abusing me. But I was shocked and
telling someone off is not my style. It is very hard to do. Over the years
many, many doctors have talked so ruddily to me when I was trying to get a
diagnosis for the pain I was in. I am so broken in sprit from all these
years of abuse from them. I have come to fear them and put them on a
pedestal. I am so disappointed with myself. Jelly fish that I am. Shirley

--- In pancreatitis@egroups.com, "Melanie Almas" <melfire@m...
Melanie
Hello Melanie,
I am so happy for you. I will keep you in my prayers and thoughts.
I know that the surgery will go well.
Vickie

In a message dated 07/27/2000 3:35:12 PM Eastern Daylight Time,
melfire@... writes:
<< I did'nt even think to ask
about the pain after the surgery. As much pain we have all suffered
it seems ironic that I should even be concerned.
I think with our pancreatitic pain, it makes us more sensitive to pain. I
don't think we are able to handle as much pain as we could before all this
started.
Mary Helen

In a message dated 7/27/00 2:14:00 PM Eastern Daylight Time, melfire@...
writes:
<< I DON 'T HAVE CANCER!!!!
Now that's worth a BIG CHEER Hoarier!!!!!!!

I forgot to ask the Dr. hardly any questions about this surgery to
remove my cysts from my ovaries. I was excited that I did not have
cancer!
Has anyone had this done? How much pain is involved afterwards? Doc
said he would be going through my belly button to do it and if
everything went ok I could go home the same evening. But he gave me
another month off work for recovery. I did'nt even think to ask
about the pain after the surgery. As much pain we have all suffered
it seems ironic that I should even be concerned. The more pain I get
the worst it gets instead of better. I'm alittle afraid of the
surgery! He also said he would make 3 mall incisions in the pelvic
area. Is this something like the procedure they use to remove the
gall bladder? If so that was not that bad. Thanks for any input!
I care about all of you! Melanie

Hi Staci, I still don't understand your doctor telling you that you would
have a stint every three months. Does he mean to put a new one in every
three months or put one in for three months and remove it for three months
then put another one in for three months? If that is the case I sure would
like to know about this. It might save me from major surgery on my pancreas.
Thanks Shirley

Thanks everyone for your prayers!!!They have been answered!!!
I just got back from both Dr's and I DON"T HAVE CANCER!!!! I am
scheduled to go to the hospital on the 3rd of Aug. next Thurs and
have surgery to remove the cysts on my ovaries. The cyst on my liver
is a simple cyst and nothing to worry about. I am soooooo!!!
relieved and again thank veryone for their support and kindness.
Melanie

I was put on lupron injections for six months after my hysterectomy.
Everything happend so fast with that surgery, I didn't have any time to
investigate the drug before they started giving it to me. Lupron made
me absolutely crazy. I couldn't carry on conversations, I had NO short
term memory (would forget things from one day to the next), I had
horrible mood swings, etc. Luckily, however, I did not have any
long-time side effects like many people have on this drug. As soon as I
started HRT, I felt much better.
Since taking the drug, I have done a lot of reading on it. There are
many horror stories out there about lupron. Many people have had
lasting ill-effects. Please think long and hard before you take these
shots. You may be one of the lucky ones that it really helps, or you
might be one of the unlucky ones.
BTW, in some of my research on Lupron, I came across a list of possible
"Adverse Reactions". One that was reported to the FDA was
pancreatitis. Here's the link: http://www.lupronvictims.com/ Look
under the Adverse Reactions for Women link. I'm not saying that lupron
is why I have pancreatitis now because I did drink alcohol, but I wonder
if lupron didn't help me on my way a little bit...?
I know that if I had the chance to do it over again, I would never take
Lupron.
Kelly

In a message dated 7/26/00 11:49:46 PM Eastern Daylight Time,
shirlf3542@... writes:
<< Poncho we are the same age! You said that you had your pancreas cut in
half
is that a Whipple? Does it have a name? Was recuperation horrific? Do you
have divisim?
Hi Shirley, As you asked for more details, here is a brief history. My
surgery in 1986 was a "modified" Whipple. The reason for surgery was an
identified cancerous tumor in my small intestine, since the tumor was
bleeding and my hemo count was half normal, immediate surgery was chosen. It
really began as explority as the Drs. didn't know exactly what they would
find. Once viewed this modified Whipple was decided to be the best course of
action. This procedure removed a foot of small intestine containing the
tumor, shortened the main bile duct from the liver, removed the head of the
pancreas it's duct and the main blood supply, part of the stomach and it's
main blood supply. The pancreas was connected to the small intestine by a
couple of small openings to a handy spot of the bowel. Of course the main
objective was to remove the tumor and thus stop the blood loss.
Recovery from surgery was about five months before returning to work and
really took about a year. Full surgical recovery was totally effective after
about 18 months when I had a incisional hernia repaired. The Whipple incision
became infected and while it was "cured" it weakened the muscle structure to
cause the hernia. I didn't have divisim. The name of my pancreas in Charles
but now I call him Chuck for short. Surgery and recovery is never easy, but
it's sometimes to effect a "cure" and/or improve one's quality of life. With
whatever decision you make, I wish you well, full recovery, and lots of luck.

--

do not want to complicate my disease further, especially with having to change
the stint every three years. If anyone has any experience with this,
please let me know. I really wanted to do something before the summer ends.
Hi Staci. Have you been told the cause of your pancreatitis? I have divisum.
I've had several sphincterotomies & stents. When combined with an ERCP, the
sphincterotomies caused an attack of pancreatitis, probably from the contrast.
After the attack subsided, i was no better & no worse.
The first stent was placed with no problems at all. I felt good for a few days
& then had a sudden onset of severe pain & nausea. Turned out the stent was
blocked & had to be removed. A second, larger, stent was placed, again with no
immediate problems. A few days later, severe pain. This time the stent had
drifted out of place & had erroded an ulcer in my duodenum. I haven't tried
another stent or sphincterotomy. At the end I was left no better & no worse.
For me, it was worth trying. I felt I had to take the chance of improvement;
couldn't give up without trying.
We are all different. You have to decide how bad your disease is & how much you
want to risk to try for a cure or improvement. Good luck with your decision,
whatever it is. Hope this helps a little.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

Staci,
Thank-you so much for your concern & prayers! I have known about the
cyst on my ovaries for 5 years they were discovered on my first
hospital bout with pancreatitis, at that time they were only 1cm in
size and now they have grown to 5cm on my left and 2.5cm on the
right. The dr's were not concerned until they srated getting bigger.
I also have a 1cm cyst on my liver that was just discovered 2 weeks
ago. I am hoping and praying that everything is benign. I had a
biobsy done 2 weeks ago and I get the results today. Thanks again
for the prayers, it really helps knowing that I have people to talk
to about this. Hugs....Melanie

i sent a letter to the egroup and have had no response.. well see if i do get
one .. im still getting every so many the dl form and hate it..

This is a long one. My post is at the end of these three posts. LOL!
In a message dated 7/26/00 2:10:52 PM !!!First Boot!!!, melfire@...
writes:
is no direct cause-effect relationship. I can't imagine what might cause it
except something going on with body chemistry or hydration imbalance. It's
not anything but uncomfortable and a little surprising so I don't think it's
a big deal, anyone else had this symptom or have any idea as to cause or
cure?
Melanie writes:
<< I have had this happen several times but I've always thought it was from
the pain meds. I asked my doc about it and he said that was the cause.
Melanie
And I write: My doctor said it was the pain... Go figure.
Karyn

In a message dated 7/26/00 4:07:42 PM !!!First Boot!!!, orvus@... writes:
<< When I got up today, I quickly prepared breakfast for my 38 year old
deaf, legally blind, autistic son and did a few chores before my "window of
opportunity" ran out and I became fatigued and went back to bed.
Hi Bruce,
I am sorry that I don't have any answers to your many questions. I would
suggest that you start writing your questions down in a small notebook and
take it to the VA next time you go. My only experience with the VA was in
nursing school. It seemed as though the patients received care, it was,
unfortunate, however, that the consistency of the healthcare providers was
inconsistent or rotational.
You are a few steps ahead of some on this list by realizing that all too
important "window of opportunity" you spoke of. Most of the people with
Pancreatitis that I speak to have come to realize these. It is good that you
are aware of these times. It will enable you to become more productive, as
long as you don't push yourself during to do more than you should. I am sure
your son requires a large amount of your time and energy.
Pace yourself. Keep posting.
Karyn

In a message dated 7/26/00 7:26:50 AM !!!First Boot!!!, KCr5959255@...
writes:
<< is anyone else receiving the digests as attachments??? I am getting
almost every other one in that format and it is so large my puter wont read
it. any ideas on how to stop this process? Karen C.
Hi Karen,
I don't have a clue. Again, I would suggest you ask the egroup help line to
see if they can help. Let me know how it goes. I don't want anyone leaving
out of frustration. Send me a copy of your post so I can see what it looks
like.
Karyn

In a message dated 7/26/00 7:26:50 AM !!!First Boot!!!, KCr5959255@...
writes:
<< is anyone else recieving the digests as attatchements??? i am
getting almost everyonther one in that format and it is so large my
puter wont read it. any ideas on how to stop this process? ilove the
regular digests and i can respond on them but this new method is very
aggravating..
Every time I try to download a digest with attachments , I immediately get
cut off from AOL, plus lose the information to be downloaded! Any ideas?
Karen C.

In a message dated 7/26/00 5:16:03 AM !!!First Boot!!!, flahair2@...
writes:
<< Endoscopy Offers Long-term Pain Relief For Patients With Pancreatitis
Hi Celeste,
This is very interesting. Did it come from Medscape? If not, could you send
me the journal it came from. Again, it would be great fro the list of links.
Karyn

In a message dated 7/26/00 4:02:58 AM !!!First Boot!!!, drfrank62@...
writes:
<< Frank didn't have the oblation because we read in more than one medical
journal that the nerve could regenerate itself and the pain could come back
worse-
Someone had a radiofrequency thing done and I am researching that to find
out what it's all about- -Treece
Hi Treece,
I would be interested in the journal name and article regarding the nerve
oblation. It would be a good addition to the list of links.
Thanks,
Karyn

Dearest Melanie,
You don't know me, but I read your last post. I will be praying for you and
the results you receive tomorrow. I hope you can feel that we are all
pulling for you.
Yes. I suffer from an immense depression and the inability to even want to
make decisions. This last attack of pancreatitis really did me in because
the pain and nausea have stayed with me this time. I am trying to decide
what treatment to take before school starts again.
Tell me, did you ever have a problem with your ovaries when you were young?
I'm praying for you, Staci

Dear readers,
Thanks for the info. regarding the endoscopic sphincter. surgery. I have
been on the fence about treating this disease for over 3 years. The gastro.
doctors wish to do this and maybe a stint, but I am afraid. Then after
praying really hard one night, I received an e-mail from someone I did not
know with really negative reactions to the depo-lupron injections I am
seeking to take. Was this an answer from God not to take the Lupron? (This
women said she got Lupus, and her right side fell asleep...) This also
scared me. Now I'm right where I started-paralyzed between 2 decisions. UGH!
Has anyone had the endoscopic sphincter. surgery? Has anyone had a stint? I
do not want to complicate my disease further, especially with having to
change the stint every three years. If anyone has any experience with this,
please let me know. I really wanted to do something before the summer ends.
God Bless,
Staci

In a message dated 7/26/00 11:36:35 PM Eastern Daylight Time,
VLGreenhill@... writes:
<< Before the surgery, I only had an attack of pancreatitis every couple
of years, but now I have pain and at least one symptom of
pancreatitis every day. Of course, the pain may be less one day and
more the next.
Oh Vickie, I am so sorry that happened to you. I know that can easily happen
to me also. Vickie what was the name of your surgery. Part of it sounds
like the one they plan for me. The part where they slit the pancreas and the
bowel and wrap the bowel around the pancreas. The doctors said nothing about
removing the tail although other doctor's have said that is what I need done.
I have had so many different opinions from different doctors I now don't
trust any of them. I have also had many surgeries that they said would help
other problems with my body but they just made my condition worse. Please
Vickie give me anymore information about your surgery that you can. Like
name of surgery, do you have divisim? Recuperation, how was that? Anything.
Thank you so much for answering my post. Shirley

major prayers going out LYNN!!!!! good luck and godspeed

In a message dated 7/26/00 9:36:37 PM Eastern Daylight Time,
poncho9191@... writes:
<< Shirley, I has my Pancreas cut in half in 1986, 14 years ago, I was 44 at
the
time, once recovered from surgery I had no problems until last year, I don't
think the surgery was part of the current problem as it was so long an
interval between the surgery and the chronic Panc. So it can be done
successfully, best of luck with whatever your path might be
Poncho we are the same age! You said that you had your pancreas cut in half
is that a Whipple? Does it have a name? Was recuperation horrific? Do you
have divisim? Please let me know and I appreciate what you have already told
me. I am so nervous about having surgery. I have had four major surgeries
but this one really scares me. Thanks, Shirley

Melanie
Hi Melanie,
It sounds like you will have a very busy day tomorrow. I will have
you in my prayers and thoughts. Please let us know, what the doctors
have to say tomorrow.
I hope your night will be peaceful.
Vickie

Hi, would you all please tell me if you have had pancreas surgery? I am
supposed to have it in the next few months. I would really like to know if
anyone has had pancreas surgery, what type, and if there is an improvement in
their health. Any information you can give me will be greatly appreciated.
I am so scared because my health is bad from other diseases as well as
pancreatitis. I also hear so many people tell me not to let the doctor's cut
on me. Please help!!! Thank you

In a message dated 7/26/00 7:29:25 PM Eastern Daylight Time,
shirlf3542@... writes:
<< I also hear so many people tell me not to let the doctor's cut
on me. Please help!!! Thank you
Shirley, I has my Pancreas cut in half in 1986, 14 years ago, I was 44 at the
time, once recovered from surgery I had no problems until last year, I don't
think the surgery was part of the current problem as it was so long an
interval between the surgery and the chronic Panc. So it can be done
successfully, best of luck with whatever your path might be

Melanie,
My thoughts are with you when you go to the Dr. You are facing quite a bit
right now. I just want you to know that I am thinking of you and sending
wishes that everything will be fine!
Robin

Hi Lacey
Thank you very much!
Robin

In a message dated 07/26/2000 12:45:27 PM Central Daylight Time,
melfire@... writes:
<< Well, tommorow I have 2 dr appts. 1 is to see if I have ovarian
cancer, all of the test results should be back. The 2nd one is to
see about the bleeding from my rectum and the cyst on my liver.
Please give me some prayers that everything is ok.
you got the prayers!!! :0) good luck tomorrow with your test results...Lynn

Whew, okay home and turned out okay.. little lady and her elderly hubby.. the
freaky guy wasnt there. so we survived.. thanks for the deland badass offer!
Lmao got a good laugh outta that.. i didnt even know the address.. then turns
out the wierd man was a bf of the couples daughter she had only know short
time.. im poking mom to hurry give 'er a baldy and lets get outta here.. (Not
really) wouldnt mess up the poor ladies hair.. bless her heart she was bed
ridden and had broke her arm.. and could barely talk.. sweet thing.. well i
survived.. this time.... told mom NEVER NEVER ask me to do that again!!!!

Lacey,
I feel better today. Today the pain is not quite as bad. I may be
being prematurely optimistic about the new gastro. However, she
actually listened to me.

Hi Everyone!
I know what you all mean now regarding the sweats. I woke up in the
middle of the night last night and had to take a shower & change my
bed cause I was soaked from sweating. I did not take any pain meds
yesterday at all, however I did take phenegan for nausea a couple of
hours before I went to bed.
Well, tommorow I have 2 dr appts. 1 is to see if I have ovarian
cancer, all of the test results should be back. The 2nd one is to
see about the bleeding from my rectum and the cyst on my liver.
Please give me some prayers that everything is ok. I want to be able
to return to my job on the 1st of Aug. Yesterday I had a rough day
with depression after reading about the man of 35 years old dying
from this evil disease! I only cried a couple hours though instead
of all day. Does anyone else feel like their thoughts are all messed
up and can't make decissions easily anymore? I get so scared
sometimes of dying and then there are times I actually wish I would
so my family won't have to suffer anymore. Thanks for listening,
thank God for this group!!!!!!!!! Melanie

Melanie,
Those extra infections sure didnt help. Hope you are feeling better soon.
Lacey

Hi Robin and Vickie,
I hope you are both feeling better.
Lacey

Karen,
I am so glad you like your new doctor. Are you feeling better? Thanks for
this info I am going to read up on it.
Lacey

In a message dated 7/26/00 12:04:29 PM Central Daylight Time,
cracker@... writes:
<< Today I had a follow up with my family doctor. When he was writing my
refills on the meds I needed on the one for percocet he wrote chronic
pancreatitis on the top corner of the script. I looked puzzled at him said
that I thought the tests had shown that my pancreas looked normal. He told
me that it had looked normal yet he knows that I have had one verified case
of acute pancreatitis and he feels that I have had more that were not
supported by blood work. Then he said that what looked normal today might
not be tomorrow and that I could get another attack
i am supposed to go to my gi doc today as well for followup and see where to
go from now. right now i feel terrible, so i am hoping i will feel like
going when the apptmt time rolls around.
debbie

Hi to everyone,
Today I had a follow up with my family doctor. When he was writing my
refills on the meds I needed on the one for percocet he wrote chronic
pancreatitis on the top corner of the script. I looked puzzled at him said
that I thought the tests had shown that my pancreas looked normal. He told
me that it had looked normal yet he knows that I have had one verified case
of acute pancreatitis and he feels that I have had more that were not
supported by blood work. Then he said that what looked normal today might
not be tomorrow and that I could get another attack (which he feels that i
have just had one) and he wants things documented so that if I am ever
disabled by an attack that the ground work is being laid now so that I can
get the help I need. i was FLOORED. I cannot tell you the amount of time
this DO has spent talking to me about MY health problems. his wife is his
medical tech and she is every bit as nice and caring to me.
The doc also told me that he knows that we have talked and talked about
meds and the risks of narcotics ect....He made me feel human and important.
And you know what...him writing that on that script for the percocet made
the pharmacy attitude go from the snide looks to very polite. The disease
is creepy but dealing with mine has been made a million times easier by the
compassion of one man and his wife. I want all of you out there to NOT
accept snotty rudeness. you are all important and there is decent care out
there. Like Karyn has said before that we should be on our own treatment
teams and if we are not...then we should get a different doctor. Right now
I have a team that consists of my doctor, my GI doctor and myself and my
significant other and this list. To me, each of you that share your
feelings, fears, pain and hope are a part of my team and I am grateful to
you all.
I hope if you cannot have a pain free day that something gives you joy today!
Lacey
PS I still have NO dizziness ...it has been FIVE days....yippeeeeeee

Hey don't sweat the remarks about medical people I am a nurse and some of
the worst people i know are also nurses...but so are some of the best. I
sure hope you are feeling better soon.
My nursing these days is limited to very few patients..all of them are
children. I occasionally do some respite care(when i am not having an acute
flare up) with a boy that is 8 and autistic. What a challenge he is but I
love working with him although I cannot imagine doing it 24/7. If you ever
feel like talking about your son feel free to write me privately. The kids
I work with have enriched my life beyond words and gives the parents a MUCH
needed break. my hat is off to you for taking care of your son....you are
going to be special in my thoughts and prayers over the pancreatitis
too...actually everyone is here...special and in my prayers.
Thanks for letting us get to know you and thank you for sharing all you
have. Keep bugging the doctors about your symptoms until you get
relief...don't try to tough it out..this is one nasty disease
Lacey

I went to a new gastro yesterday and so far I think she's great. She
told me that the name for spasms in the bile duct is biliary
dyskinesia. BD can actually cause pancreatits and the pain from BD
can be very much like pancreatitis, even when you are not actually
having pancreatitis. Additionally, there are burning sensations in
the same area as the pancreatic pain. Because BD may be mainifested
by muscular spasm, stress can definitely make it worse or even cause
an attack of excruiating pain. Taking anti-spasmodic medication,
modifying your diet (eliminate caffiene, reducing fat, eating high
fiber 20-35 grams per day, and drinking at least 8 glasses of water)
daily can help but the condition normally requires an ERCP along with
a sphincterotomy. This usually gives complete relief in 70-80% of
patients. Biliary dyskinesia can be recognized during ERCP by a
special technique called sphincter of Oddi monometry (SOM). This
measures the squeeze pressure of the bile duct.
Even though I've had an ERCP, the doctor didn't do an SOM or
sphincterectomy. He did do a papillotomy for constriction in my bile
duct. Another symptom of BD is a dilated bile duct - which I do have.
The new gastro is going to reveiw all my lab and test results and
then
will do another ERCP.
I found a good site with info on the pancreas and biliary tree. It
also gives info on BD and other disorders. It is written by Dr.
Peter
Cotton.
http://www.ddc.musc.edu/public/organ/panc.htm

Karyn,
When I was in the hospital in March for a month, I was on what they
called a central line that went into my juglar in my neck. I spiked
a 106 temp and had to be put on ice blankets and stron antibiotic.
The doc said I picked up a staph infection from being in the hospital
too long thru the iv site.
I haven't felt right since. A week after I was home I got candida in
my mouth and my doc said that was a yeast infection from the strong
antibiotic they gave me. Anyways I was wondering if that infection
has caused my slow recovery. I'm not in pancrease pain anymore from
the radiofrequency I had, but I still feel weak and no energy at all.
Any input will be appreciated. Your kinda like our mentor here
because you are a RN and are so knowledgeable. Thanks! Melanie

I want to thank all of you who have welcomed me to the group......I am still
a little nervous as this is still all new to me, but after reading the
postings, I am realizing that there are many things we share in common and I
will learn to trust with this sharing of information and questions as time
goes along...please be patient with me for now. First of all, I didn't even
know what questions to ask because I knew nothing about this disease and
there was little input during my initial treatment so I really didn't know
what was going on.......I had symptoms of things that I didn't know whether
they were related to the problem or not and still don'e...then I read on the
postings where someone else is having problems with something I have
encountered and the universe begins to open up....
I have had the cold clammy sweats for quite some time and often......I
always chalked it up to the diabetes and my system being out of
"whack".....some of it probably is.......some may be from
fatigue...sometimes it may be from shock.......I don't know what causes it
or what stops it......I just know that more often than not, I am completely
soaked....sometimes it happens after I eat.......so....then I ask
myself...is this connected to the pancreatis or is it not
important.......and I still don't really know or understand it.
I also have horrible headaches. When I mentioned this to the Dr. (in
training), she said it might be from only having the clear liquids on my
diet or caffeine withdrawal......the latter did not seem to be the reason
(in my opinion) as I do not drink coffee, or drinks with caffeine....and I
don't believe that there was much caffeine in my diet prior to the
attack....however, there may have been some in foods that I was not aware of
at the time........nevertheless....the headaches persist. It may be from a
sinus infection.....after my trip to the emergency room, I developed an
infection deep in my lungs (is this connected? I have no idea) and continue
to cough up horrible "crud"........in the paper that the ER Dr. sent home
with me "explaining" pancreatitis, it mentioned the possibility of
infections in the lungs and blood etc......but in the follow up, they did
not check this problem and didn't seem to listen to any of my "complaints"
and I still feel lousy. I don't have the benefit of choosing a Dr. as I
have no insurance other than the care provided from the Veteran's Hospital..
It is just frustrating. When I got up today, I quickly prepared breakfast
for my 38 year old deaf, legally blind, autistic son and did a few chores
before my "window of opportunity" ran out and I became fatigued and went
back to bed. I have a difficult time understanding this fatigue and also
knowing which things are symptoms of this disease and what has nothing to do
with it but still is a pain in the neck so to speak. Maybe I am just one of
those people who like to have too many answers and have things fit into neat
little compartments. I am seeing more and more that perhaps the "side
effects" of this disease don't fit into neat
categories........anyway...sorry this is so long....I am just trying to deal
with all of it and understand what is happening........are there a lot of
others with diabetes in the group? Thanks for the support. Bruce Miller
P.S. To the medical people in this group.......please don't take my remarks
about medical staff as a personal thing......I know that not all of them are
good or bad.....it is like everything else......and I am quickly getting the
idea that some of you who have a medical background are just as frustrated
as the rest of us....my medical experience was limited to training as a
Medic in Vietnam.

In a message dated 7/25/00 4:56:14 AM !!!First Boot!!!, LenhartROCKO@...
writes:
<< Debbie: My wife Tammy had that same problem the iv nurses dreaded when
they
had to find another vein in her arm. Then they finally ran out of veins and
they suggested that she had a porta cath or (medi-port) put in. That was the
best thing she had done. They now draw blood from it give her meds though it
and she has never had a problem with it and she has it accessed 24/7.
Tammy & Steve (MI)
Hi all,
I can't ditto that enough. And I don't think it matters what kind of IV
access you get..Portacath, Hickman, Groshong, PICC. Just get something. It
will eliminates so much anguish.
Karyn

A big welcome to BRUCE. You have found a site that I am sure will help you
in many ways. Please email if you are confused with all that the Pancreatitis
Support Network has to offer you. As a member you will be receiving many
email posts from those suffering with and living with this disease. You will
hear stories with many similarities as your own. Please never feel that you
aren't as sick as others and that you don't have much to offer. We all
benefit from what everyone shares. Ask as many questions as you like. You
will, however, receive different answers We are not doctors and what we share
is from our heart; it is our own experience, strength, and hope. Our goals is
to improve the quality of our lives; to become survivors of this disease, not
the victims.
If I can be of any help please feel free to email me privately at any time.
However, the question, issue, or concern, is probably one that someone else
has but is reluctant to ask.
Please spend time browsing through the home site. The URL to the main page is:
http://www.egroups.com/group/pancreatitis
Visit the site frequently. There are frequently current polls being
conducted, i.e., where you live, etc. There is a substantial and growing list
of resources and links to provide you with additional information. There is a
member profile which you can fill out; this is entirely optional. We have a
large component of AOL subscribers who communicate via IM, however, there is
a chat room within this home site, as well.
There are three ways to receive e-mail posts:
1) Receive individual emails (This may be many as the group is active)
2) Receive daily digest (This will deliver all the e-mail posts into one
group which you receive daily)
3) Do not receive any posts directly via e-mail (This way you can go to the
main site and read the posts directly off the messages on the home site)
So, with that, I again say welcome, and we are glad that you have been
directed to and found this site.
Karyn Williams
Indianapolis, Indiana
KarynWms@...

To jang2- I'm sorry it took me so long to get back but we have been
out of town non stop- Frank didn't have the oblation because we read
in more than one medical journal that the nerve could regenerate
itself and the pain could come back worse- So it really scared us-
Someone on the other board(PEG) had a radiofrequency thing done and I
am researching that to find out what it's all about- Take Care and
let me know if we can do anything to help-Treece

--

Welcome back home Robin. Hope you continue to feel better & stronger.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

Hey Karen!
Sorry to hear that you're feeling so bad today! Was the doctor this
afternoon any help?
I missed the post where you said you made an appointment with Sigman.
When is it? I have an appointment with him next Monday. I hope he can
help you if the one you saw today didn't already! I know that it would
be a pain in the rear to have to drive to Bham for appointments
(especially if you feel bad).
Kelly

In a message dated 7/25/00 12:09:41 AM !!!First Boot!!!, shirlf3542@...
writes:
<< Sorry nurses in this group I realize not all nurses are like some of the
ones I have encountered. Shirley
Hi Shirley,
I certainly do not take offense to your complaints about nurses. As a nurse,
and I am sure the other nurses feel the same way, I have worked with both
good and bad nurses. As a patient, I let them know I am a nurse, and monitor
their procedures with a very scrutinized eye. We have too, it is just a sad
fact.
Karyn

Welcome Back Robin,
Sorry to hear you had complications while in the hospital. We have
all been there and it's not a nice place to visit. I hope get get
your strenght back soon! The saying is that it takes 2 days for
every 1 day to recoop. Melanie

In a message dated 7/24/00 11:54:21 PM !!!First Boot!!!, melfire@...
writes:
<< PATIENT EDUCATION INFORMATION LEE PAIN SERVICE RADIO FREQUENCY NEUROLYSIS
Melanie,
Thanks for this information. It was interesting.
Karyn

Hello Everyone....
I just got home from the hospital this afternoon. I was in for three weeks
this time. I had a complication though. My Infuse A Port became infected
(staph), so the port had to come out. The Dr. tried to place a groshong on
the opposite side, but he couldn't. The point where the vessels connect was
completed occluded. He placed an EJ IV, and took me back into the OR on
Wednesday of this past week. He wanted to make sure the cultures were
negative, and they were Wednesday Morning....it was after the Groshong was
finally placed that they found the staph. So, I was on a week of IV
Vancomycin, and am home on Doxyciclene and Rifampin.
I am feeling a bit better, just exhausted. I am sure that will go away in
time.
I'd like to thank Linda B. for updating y'all for me. I really appreciate it
Linda ;o).
I hope everyone is feeling well. I am trying to catch up on the digests, but
that is a full time job!! ;o) I will try and get caught up as best as I can
though ;o).
Hugs,
Robin

In a message dated 7/24/00 10:32:44 PM !!!First Boot!!!,
dhollis062@... writes:
<< Dose anybody else have a hard time trying to figure out who wrote what in
these emails? I can't seem to get it straight! Diane
Hi Diane, and all,
This is how I do it.
1. I receive the email.
2. I highlight that portion of the email that I want to respond to. I do this
by taking my mouse, clicking on the right side, holding it down, and dragging
it over that portion of what I want to respond to.
3. I then take my mouse and click on reply.
4. If there are not brackets around the part I carried over, then I out them
around the entire portion I want to respond to. That way it separates that
which I am responding to from that which I write.
5. I then write what I want to.
6. I then always sign my name. It is hard for me to remember what people's
first names are just from their email name.
Doing this really helps me read the emails that others send out, because
otherwise I don't know what the writer is referencing.
This is how I do it because I receive email version of the posts. I believe
it would be different for those receiving daily digests.
Karyn

a lot of people call it a gastric wrap. For me they pulled my stomach back
down to where it belongs cause I had a huge para-esophageal hiatal hernia.
They repaired that then wrap the stomach around the esophagus and staple it
there. For 98% of the people that have these it is a great
surgery...especially if you are having reflux. I wasn't. I just had the
danger of the stomach traveling all the way up the LES (lower esophageal
spincther) getting twisted and having to be removed. I got all the
complications you can get...one being acute pancreatitis.
hope that helps,
lacey

Bruce, Welcome to this board!
You will find a lot of caring and kind people here that comforts you
when in need. I have been a pancreatitis sufferer for 5 years. This
past March I was hospitalized for 1 month on TPN. I became septic
and spiked a 106 temp and had to be put in ice blankets overnight so
the temp would come down. In my past years with this disease I have
always snapped back after an attack and was able to function normally
for months at a time, however the attack I had in March I'm still out
on sick leave and one thing right after another keeps happening to me.
You asked if you could handle this alone. I would have to say NOT!
This is a nasty disease that has to be controlled as best as it can
be. Each time you have an attack it destroys more of the pancreas
and in turn can start destroying other organs in your body. I pray
every time I see a new member post on this board that they have been
misdiagnosed and it's not pancreatitis. I have gone thru 3 sets of
GI dr's and finally found a group that has a lot of experience with
the disease. There are plenty of medications and treatments to help
maintain this disease, but no cure at the present. So please
continue with medical help as long as you can.
I hope I have answered some of your questions and like everyone said
Karyn is one of the most knowledgeable people on this board and she
is very soothing and kind. I don't know how I could have kept on
coping if I had not discovered this group. Hope you are feeling
better and have a good evening....Melanie

Please forgive me for sending the same message twice. I know it take
time to read the messages, when the board is very active. When
someone send the same message twice, it makes it worse. Sorry!
Vickie

Hello Mary Helen,
First of all, I love your name. Thanks for your reply. I believe
the hardest thing most of us drink is some kind of cola. Mine is
root beer.
I will have you in my thoughts and prayers Friday. Please try to
think positive and try not to be afraid. When I wrote afraid it made
me think of the first bible verse I learned. During a thunderstorm,
when I was about two, my grandmother taught me this verse from Psalms.
What time I am afraid, I will trust in thee. Now when I become
afraid, I say this verse to myself and immediately I feel better. It
reminds me to turn my fears and trouble over to the Lord. I just
thought this may help you. I know that you will do great Friday.
Vickie

what is a fundoplication?

Lacey and Elizabeth,
thanks for sharing with me. I think my gastro thinks I'm just a big
baby! I really am not. I have lupus and am used to pain. However,
this pain makes any other pain seem like nothing. I don't know what
is wrong with me, but something is not right. The pain that I have
is
the same as the pain that I had when I had the one verifyable attack
of acute pancreatitis. The only difference is the degree of severity
of the pain varies.
Today is a bad day. I woke up with my stomach hurting. I laid in
bed
and it eventually eased up some. right now, my back is really
hurting. It's that same panc pain as always. It's not normal back
muscle type pain. I can't really describe the difference, but it is
different. I guess the main difference is that when I have normal
back muscle type pain, it is made worse or better based on how I move
or don't move. Movement doesn't affect this pain. It is just there
and is not made any better or worse by movement, etc.
As I mentioned in an earlier post, I have an appt with a new gastro
in
Birmingham, AL who was recommended by Kelly. I had already made an
appointment with a few different gastros in Huntsville, AL before
Kelly recommended the one in B'ham. I was going to cancel the
appointments, but I feel so crappy today I'm going to go ahead and
keep the one I have today. I know nothing about this doctor. Every
doctor's office I called, they told me the doc was very experienced
with pancreatitis. Anyway, wish me luck. It would certainly be
easier if I could find a good gastro in Huntsville since that's where
I work and it is only 30 miles from my home vs B'ham 100 miles from
home.
Thanks to everyone for the encouragement and advice.
Karen Weston

with
this
MRCP,
even had
docs
and my
that
you
come
up with

Hey Bruce,
I am sorry that you are hurting and feeling depressed. It is a horrid
disease and it can make you feel nuts at times but hang in there. There are
a lot of people here that will be able to tell you many things. I will tell
you that I have never had anything as painful as my pancreatitis. Karyn is
much more technically up on the disease and knows A LOT. I am still
struggling with being baffled with the many ways it can slam you and the
depression part. Hang in there and don't try to be a tough guy when it
comes to the pain cause this baby HURTS. You are going to find out pretty
quick what you can and cannot eat. For me I do way better off fatty foods
and red meat just about kills me and so do carbonated drinks and I am a
pepsi addict from way back..but I dont drink it anymore.
Don't let yourself get dehydrated if you can help it. If you are having
that awful diarrhea it can happen fast..but then the pain pills might bind
you up. Don't feel bad if you have to ask the doctor for some help their
too...like maybe stool softners cause if you get constipated for me anyway
the pain in the abdomen got worse.
I wish i could make this go away for you..did they say you are having an
acute attack or thinking chronic yet. Sometimes you can have some acute
attacks and have the reason go away. One thing I have learned from this
list is that they is more hope than answers at times but hope is a very,
very good thing. Dont feel bad about ANY question you have cause we talk
about it all...from what diarrhea looks like, finding a bathroom to the
most technical things. So welcome and write anything you need. wish i could
help more.
Lacey

Ditto all of that Elizabeth...except for the one bout of acute pancreatitis
everything has been normal...that is except for the symptoms, pain, ect..
lacey
btw..i am on my 4th dizzy free day off the ambien

Bruce go to the links on the message board and youll see all kinds of info on
pancreatitis.. karyn has posted them for everyone to go to and learn from..

In a message dated 7/25/00 1:29:41 AM Central Daylight Time, orvus@...
writes:
<< Right now I am going through a lot of depression....feeling more
alone and vulnerable....and I guess I just need to learn as much as I
can about what to do...what works for others....what to expect...how
to keep a positive attitude and to feel that someone understands what
I am experiencing.
Welcome Bruce! we are glad you found this site. Karyn and some of the others
that are members of the medical field can share with you just about any kind
of information - if they don't know they can direct you to a web site that
will tell all details. Also others that have been through all this for a
long time have lots of information that is only found through observation and
going through the different tests and treatments. There are plenty of others
here to share with you. I think that I would probably be a complete basket
case by now if I had not found this site when looking feverishly through the
internet for information when I was in the hospital. Karyn is a wealth of
knowledge and always rooting in your corner, even on her worst day.
Debbie (Ark)

Hi...My first trip to the ER with pancreatitis was last Wednesday...I
was in extreme pain and very nauseated. After IV's and morphine, I
felt relief and realized that this had been coming on for a long time
and I had no idea of what was wrong, except it hurt, I was sick and
tried to be the tough guy....and it didn't work. I know so very
little about this disease so I would appreciate some truths to help
me understand about it....I came home with pain pills, a clear liquid
diet and no understanding about what was going on with my body. I am
a diabetic on oral medications, which are effective some of the time.
Right now I am going through a lot of depression....feeling more
alone and vulnerable....and I guess I just need to learn as much as I
can about what to do...what works for others....what to expect...how
to keep a positive attitude and to feel that someone understands what
I am experiencing. Thanks, Bruce Miller
P.S. I have gone through this pain and nausea for several years,
but this is the first time they gave it a name.....

HI,
MY GI DOCOR SAYS THAT A CATSCAN OF THE PANCREAS SHOWS THE
DIFFERENCE BETWEEN ALCOHOLIC OT IFEOPATHIC PANCREATITIS. hE SAYS YOU CAN SEE
A DIFFERENT PATTERN OF SCARRING FOR EACH KIND. TELL THAT TO YOUR DOCTORS.
LYNNEAR

Shirley you did just fine...technical words won't make it much clearer. And
YES watch the people that flush that line for you...they should be very
careful...since it is a direct shot into that old heart you dont want any
sloppy techique going on here.
I hate being poked too. When I had the acute attack they had IV's going and
it seemed that EVERY time they gave me IV Demerol with phenergan it blew. I
have very little in the way of veins. AFter the last time they blew it I
got really mad and told them they could not start another one. I had had
the fundoplication and cannot vomit. My liver enzymes were coming down and
the NG tube was out. I could drink and keep fluids down...no matter how
much i wanted i could not throw them up..the docs were like...oh..yeah
right. jeepersss
I have to say that I did have 2 good nurses. Out of the nurses that I had I
had TWO that were exceptional. One was young (21) and the other in mid
thirties. I was so impressed i asked them when they graduated from
school..(both had the may before this december). the things that made them
special was this----they always answered my light right away, always had my
pain meds immediately, they were very nice to my significant other that
stayed with me 24/7 and they treated me like I was very very sick and they
were very very sorry that I felt bad. Before I left I asked to speak to the
patient rep. and the nursing supervisor of the floor. I commended these two
gals and one aid that was so sweet. Then I wrote my commendation and then
brought all this to the attention of the hospital administrator. The two
gals on the floor and the aid (plus one ER nurse) all got commendations
from the hospital, letters of thanks from me, and they were given some kind
of gift certificates from the hospital. While doing this I made one
complaint and they corrected it. All of this took me about 2 five minute
periods of time. I really didn't know the gals would get more than a thanks
from me and maybe a good word from their supervisor but I was pleased that
they got some good stuff. Maybe if we do this for the good ones it will
make them want to stay good and the bad ones want to be good. LOL I sorta
went off on another topic here but I guess my point is complain when it is
needed and praise when it is merited.
shirley hope you feel a lot better soon,
Lacey

Karen,
I have not had a documentable attack of pancreatitis since Dec 3 1999. yet
I have had ALL the symptoms including the kind of pain in the mid abdomen,
right side and straight thru to the back, that makes you want to die. I
have had 3 CT scans..and when they did one during the acute attack my
stomach was 4 times the normal size..but then i had a paralyzed bowel from
the attack. I had had diarrhea so bad that i was almost in hypovolemic
shock from fluid loss.........now..I have had all those symptoms with
normal labs and normal CT scans. the only thing that is notable to them on
xray is that i will have what they call a small ileus (pockets of trapped
gas) with very hyper sounding bowel..upper. They have no idea why.
The ERCP I had was (using the GI's terms) showing a grossly normal
pancreas. He felt that the acute attack was probably caused by the
fundoplication causing a stone to move that was probably in a duct. He also
told me that abdominal surgery can also cause pancreatitis but it is a very
small chance...around 2%.
I really feel for you and want to encourage you to get another doctor. I
have a great compassionate family doc and a good GI (although before my
ercp i woulda let you have shot him cause i was so scared). Having anything
go wrong with your pancreas is baaaaaad enough without having a numb skull
for a doctor. The pain is real and you are right that that kind of weight
loss and gain is not normal. My doc about had a fit when i dropped 11
pounds in a few days. I am not skinny but he was really worried.
Get a new doctor!!!!!! and keep us posted.
Lacey

PATIENT EDUCATION IMFORMATION
LEE PAIN SERVICE
RADIOFREQUENCY NEUROLYSIS
Radiofrequency nuerolysis (nerve destruction) is a technique where a
controlled heat lesion is made along nerves which have been shown to
transmit pain. The most common applications are to degenvate, or
interrupt nerve transmission from, painful nerve tracks to the
pancreas. Because up to 6 nerves provide sensation from the pancreas
4-6 heat lesions must be made. These nerves have already been
identified by your physician by temporary blocks with local
anesthetics under XRAY guidance.
The heating probe is placed under fluoroscopic guidance with local
anesthesia and sedation. Because your participation is needed for
both sensory and motor checks to ensure the heating probes are in the
correct position, you will not be heavily sedated. Once adequate
placement ascertained. Potent local anesthesia will be injected to
avoid the discomfort during the heating process. The entire process
takes from 45 to 90 minutes to complete.
Success rates vary. However around 70% of patients get good to
excellent relief of pain. Even in those patients who do not respond
they have some residual pain. This pain may be from a different
source which may or may not be treatable. If you do receive food
relief to pain this procedure usually lasts 9 months or longer, many
times (3-5) years. These results are very encouraging, since most
patients undergoing the procedure have not received relief from any
other therapies prior to this.
Although it is very unlikely, you may develop increased pain or even
weakness or numbness as a result of this procedure. Skin burns are
also possible, but precautions are taken to avoid this.
Patient with electrical implanted devices (pacemakers and spinal
stimulators) may develop dysfunction of these. You will be monitored
carefully during the procedure and after to ensure their proper
functioning.
You may have temporary numbness or weakness after the procedure for 1
to 2 hours after . Most patients can leave within 2 hours.
After the procedure you can expect one to two weeks of INCREASED
discomfort from the effect of the heat lesion itself. We will make
sure you have enough pain medication and it should be easily
manageable.
Rev:7/99
This is the paperwork the pain clinic gave me prior to having this
procedure done. I hope it answers most questions. Melanie

Dose anybody else have a hard time trying to figure out who wrote what in
these emails? I can't seem to get it straight!
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

In a message dated 07/23/2000 9:01:13 PM Eastern Daylight Time,
VLGreenhill@... writes:
<< I would love to
see a poll that is answered only by sufferers of pancreatitis,
Vicky, here's one of your first poll answers - Pepsi drinker. Never had a
beer. Have had probably 12 to 15 "fluff" drinks (brandy alexandar at
Christmas or Ameretto sour) during my 52 years on this earth. But, I still
get "the look" when the doctors ask if I'm a drinker. Why ask if they're not
going to believe the answer?
Mary Helen

Hi Karyn,
I went to my GI doc this morning and he thinks it's from hemorrhoids.
He packed me with Tucks and if I am still bleeding Thurs on my return
visit then he said in the hospital on bed rest & more test. I hope &
pray it stops. I quess my week-end of watching my family have a good
time I have to pay for. I still feel it was worth it. I HATE THIS
ILLNESS!!!!!!...Thanks for responding!!! Melanie

Kayrn, please do find out why she unsubscribed.. I at first reading saw
pysche and hackles rose, but as i read on realized she was helping get a
point of view across..Jerry was interviewed by a pysche triage nurse who went
behind our backs and called our insurance and tried to admit him to a ward
for a two week evaluation! THankfully our agent refused!! she then returned
and told us what she had done, needless to say jerry yanked ivs and monitors
off and we walked out.. and that was just one incedence with pysche run ins..
so yes we too are very touchy when we read or hear anything like that , but
as i said.. reading on, she went on to explain herself, very well.. sometimes
we get our minds fogged and have automatic response to things and cant help
it.. hopefully she will understand, and forgive us our "jumping to
conclusions" before finishing her story.. when you stop to think it is very
true that your breathing changes in pain and trauma.. its just that damn
word.. that blurs our visions.. please let her know we would be very
thankful for her views on this subject and wish shed return so that we too
can benefit from her experiences on that side of pancreatitis~!
Celeste and Jerry

I am hoping someone can help me understand something better. I read
that a dilated bile duct can be a sign of chronic pancreatitis.
Dilated means larger than normal, right? I also hear a lot of
members
talking about having a stent put in. I assume a stent is put in
place
to keep the bile duct open because perhaps it is too narrow. I had
an
attack of acute pancreatitis on Jan 8th. Since then I have had many
bouts of pain and nausea. I had an ERCP done in Feb. The gastro
said
the bile duct was constricted so he made an incision at the bottom of
the duct. The gastro's notes indciated that he did a papallotomy - I
don't know what this is. Anyway, I had an ultrasound done shortly
after the ERCP. The gastro told me that the ultrasound was fine and
that it didn't show anything. However, I got copies of all tests and
lab work last week because I plan to find a new gastro. The
ultrasound report said that my bile duct was slightly dilated - it
said it was 5 mm - I don't know what the size is for a normal bile
duct. The report did say it was possible that the size of my bile
duct could be normal for someone who'd had their gallbladder removed.
My questions are
1. Would gallbladder surgery make your bile duct become dilated?
2. The gastro said my bile duct was constricted so he made a cut in
it. Could my bile duct be both constricted and dilated?
3. After my latest attack of pain, nausea, vomiting, fatigue almost
to the point of lethargy, and abdominal distention and weight gain of
21 pounds in less than 3 weeks and then weight loss of 14 lbs in one
week. Gastro said pancreas is fine and that pain is coming from
spasms in the upper part of my bile duct. Does this sound logical?
4. Gastro says the spasms are brought on by eating rich foods. If
that is true and nothing is wrong with my pancreas, why would my bile
duct be having spasms to the point of causing me to have the
excrutiating pain imaginable?
The gastro said the large weight gain was simply from my diet. (I
didn't lose the 14 pounds until a week after I last saw him - I have
no intention of seeing him again)
He said my stomach didn't look or feel distended to him. It wasn't
just me who thought my stomach was 3-4 times it's usual size and hard
(not soft like a normal fat belly) My husband, mother, and friends
from work all were shocked to see how huge my stomach was.
The gastro said the fatigue was probably caused by depression. I am
on medication for depression (Effexor 75mg qd), but don't feel
depressed. My life is going well with the exception of this
continuing problem with my stomach.
The gastro did order a ct scan which didn't show anything. I
received
a letter from the gastro over the weekend which read as follows:
"Your ct scan didn't show anything abnormal. I hope the medication
you are on is giving you some relief. For now there is nothing to
worry about. Please keep in touch."
The medication he was referring to was Levcin for irritiable bowel
syndrome. The Levcin does help if I have pain in my lower stomach.
However, I can't tell that it does anything for the pain under my rt
rib, in my side and back.
I'm not sure what he means by "for now there is nothing to worry
about". If I were going back to him, I'd ask, but I don't plan on
seeing him again.
I don't know if I am in the early stages of chronic pancreatitis or
if
the gastro is correct and my pain, nausea, etc. have absolutely
nothing to do with my pancreas. I just know that since January
something is not right with my stomach and I want answers that make
sense.
Thanks for listening. any insight into this will be appreciated.
Karen

--

we're all closet drinkers?? You hit a sore spot with me. I'm sick to death of
being prejudged before the dr. even hits the doorway to my hospital room. It
took at least 2 years before my endocrinolgist was finally convinced that I
don't drink, and then it was after my husband spoke up and said something on my
behalf.So far I have had no problem with judgmental nurses nor problems
getting pain meds in a timely fashion. But I have truly ran out of
Not to make excuses for doctors, but.....
Doctors are expected to conform to certain assessment standards in their
treatments. They are required to do what is called a psycho-social assessment
which includes asking if the patient smokes, drinks alcohol, or uses illegal
drugs. Of course, once these questions are answered, the doctor should accept
the answer & not conduct a prolonged interogation.
The test for alcohol may have been part of your doctors lab work verifying your
tee-totalling, not an attemp to catch you lying.
If you are questioned while seeing a doctor for the first time, there should be
no blame attached to the medical people asking these things, but when its a
doctor you have seen many times, there is no excuse for the repeated
questioning.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

Hi Becky,
I used to live in York which is 4 hours east of Pittsburg. In york they
have a teaching hospital that is affiliated with Hershey Medical Center in
Hershey and the Medical school there. You might call the medical school if
that is not too far to travel.
Lacey

Hi everyone,
I located this so I can begin preparing for my hearing with the judge. I
thought some of you may find it helpful. It is taken from the SS rules and
regulations.
Karyn
'404.1529 How we evaluate symptoms,
including pain.
(a) General. In determining whether you are disabled, we consider all your
symptoms, including pain,
and the extent to which your symptoms can reasonably be accepted as
consistent with the objective
medical evidence and other evidence. By objective medical evidence, we mean
medical signs and
laboratory findings as defined in '404.1528 (b) and (c). By other evidence,
we mean the kinds of
evidence described in ''404.1512(b) (2) through (6) and 404.1513(b) (1), (4),
and (5) and (e). These
include statements or reports from you, your treating or examining physician
or psychologist, and
others about your medical history, diagnosis, prescribed treatment, daily
activities, efforts to work, and
any other evidence showing how your impairment(s) and any related symptoms
affect your ability to
work. We will consider all of your statements about your symptoms, such as
pain, and any description
you, your physician, your psychologist, or other persons may provide about
how the symptoms affect
your activities of daily living and your ability to work. However, statements
about your pain or other
symptoms will not alone establish that you are disabled; there must be
medical signs and laboratory
findings which show that you have a medical impairment(s) which could
reasonably be expected to
produce the pain or other symptoms alleged and which, when considered with
all of the other evidence
(including statements about the intensity and persistence of your pain or
other symptoms which may
reasonably be accepted as consistent with the medical signs and laboratory
findings), would lead to a
conclusion that you are disabled. In evaluating the intensity and persistence
of your symptoms,
including pain, we will consider all of the available evidence, including
your medical history, the
medical signs and laboratory findings and statements about how your symptoms
affect you. (Section
404.1527 explains how we consider opinions of your treating source and other
medical opinions on the
existence and severity of your symptoms, such as pain.) We will then
determine the extent to which
your alleged functional limitations and restrictions due to pain or other
symptoms can reasonably be
accepted as consistent with the medical signs and laboratory findings and
other evidence to decide
how your symptoms affect your ability to work.
(b) Need for medically determinable impairment that could reasonably be
expected to produce your
symptoms, such as pain. Your symptoms, such as pain, fatigue, shortness of
breath, weakness, or
nervousness, will not be found to affect your ability to do basic work
activities unless medical signs or
laboratory findings show that a medically determinable impairment(s) is
present. Medical signs and
laboratory findings, established by medically acceptable clinical or
laboratory diagnostic techniques,
must show the existence of a medical impairment(s) which results from
anatomical, physiological, or
psychological abnormalities and which could reasonably be expected to produce
the pain or other
symptoms alleged. At the initial or reconsideration step in the
administrative review process (except in
disability hearings), a State agency medical or psychological consultant (or
other medical or
psychological consultant designated by the Commissioner) directly
participates in determining whether
your medically determinable impairment(s) could reasonably be expected to
produce your alleged
symptoms. In the disability hearing process, a medical or psychological
consultant may provide an
advisory assessment to assist a disability hearing officer in determining
whether your impairment(s)
could reasonably be expected to produce your alleged symptoms. At the
administrative law judge
hearing or Appeals Council level, the administrative law judge or the Appeals
Council may ask for and
consider the opinion of a medical advisor concerning whether your
impairment(s) could reasonably be
expected to produce your alleged symptoms. The finding that your
impairment(s) could reasonably be
expected to produce your pain or other symptoms does not involve a
determination as to the intensity,
persistence, or functionally limiting effects of your symptoms. We will
develop evidence regarding the
possibility of a medically determinable mental impairment when we have
information to suggest that
such an impairment exists, and you allege pain or other symptoms but the
medical signs and laboratory
findings do not substantiate any physical impairment(s) capable of producing
the pain or other
symptoms.
(c) Evaluating the intensity and persistence of your symptoms, such as pain,
and determining the
extent to which your symptoms limit your capacity for work--(1) General. When
the medical signs or
laboratory findings show that you have a medically determinable impairment(s)
that could reasonably
be expected to produce your symptoms, such as pain, we must then evaluate the
intensity and
persistence of your symptoms so that we can determine how your symptoms limit
your capacity for
work. In evaluating the intensity and persistence of your symptoms, we
consider all of the available
evidence, including your medical history, the medical signs and laboratory
findings, and statements
from you, your treating or examining physician or psychologist, or other
persons about how your
symptoms affect you. We also consider the medical opinions of your treating
source and other medical
opinions as explained in '404.1527. Paragraphs )(2) through )(4) of this
section explain further
how we evaluate the intensity and persistence of your symptoms and how we
determine the extent to
which your symptoms limit your capacity for work, when the medical signs or
laboratory findings
show that you have a medically determinable impairment(s) that could
reasonably be expected to
produce your symptoms, such as pain.
(2) Consideration of objective medical evidence. Objective medical evidence
is evidence obtained
from the application of medically acceptable clinical and laboratory
diagnostic techniques, such as
evidence of reduced joint motion, muscle spasm, sensory deficit or motor
disruption. Objective
medical evidence of this type is a useful indicator to assist us in making
reasonable conclusions about
the intensity and persistence of your symptoms and the effect those symptoms,
such as pain, may have
on your ability to work. We must always attempt to obtain objective medical
evidence and, when it is
obtained, we will consider it in reaching a conclusion as to whether you are
disabled. However, we will
not reject your statements about the intensity and persistence of your pain
or other symptoms or about
the effect your symptoms have on your ability to work solely because the
available objective medical
evidence does not substantiate your statements.
(3) Consideration of other evidence. Since symptoms sometimes suggest a
greater severity of
impairment than can be shown by objective medical evidence alone, we will
carefully consider any
other information you may submit about your symptoms. The information that
you, your treating or
examining physician or psychologist, or other persons provide about your pain
or other symptoms
(e.g., what may precipitate or aggravate your symptoms, what medications,
treatments or other
methods you use to alleviate them, and how the symptoms may affect your
pattern of daily living) is
also an important indicator of the intensity and persistence of your
symptoms. Because symptoms,
such as pain, are subjective and difficult to quantify, any symptom-related
functional limitations and
restrictions which you, your treating or examining physician or psychologist,
or other persons report,
which can reasonably be accepted as consistent with the objective medical
evidence and other
evidence, will be taken into account as explained in paragraph )(4) of this
section in reaching a
conclusion as to whether you are disabled. We will consider all of the
evidence presented, including
information about your prior work record, your statements about your
symptoms, evidence submitted
by your treating, examining or consulting physician or psychologist, and
observations by our
employees and other persons. Section 404.1527 explains in detail how we
consider and weigh treating
source and other medical opinions about the nature and severity of your
impairment(s) and any related
symptoms, such as pain. Factors relevant to your symptoms, such as pain,
which we will consider
include:
(i) Your daily activities;
(ii) The location, duration, frequency, and intensity of your pain or
other symptoms;
(iii) Precipitating and aggravating factors;
(iv) The type, dosage, effectiveness, and side effects of any medication
you take or have taken to
alleviate your pain or other symptoms;
(v) Treatment, other than medication, you receive or have received for relief
of your pain or other
symptoms;
(vi) Any measures you use or have used to relieve your pain or other
symptoms (e.g., lying flat on your
back, standing for 15 to 20 minutes every hour, sleeping on a board, etc.);
and
(vii) Other factors concerning your functional limitations and restrictions
due to pain or other
symptoms.
(4) How we determine the extent to which symptoms, such as pain, affect your
capacity to perform
basic work activities. In determining the extent to which your symptoms, such
as pain, affect your
capacity to perform basic work activities, we consider all of the available
evidence described in
paragraphs )(1) through )(3) of this section. We will consider your
statements about the intensity,
persistence, and limiting effects of your symptoms, and we will evaluate your
statements in relation to
the objective medical evidence and other evidence, in reaching a conclusion
as to whether you are
disabled. We will consider whether there are any inconsistencies in the
evidence and the extent to
which there are any conflicts between your statements and the rest of the
evidence, including your
medical history, the medical signs and laboratory findings, and statements by
your treating or
examining physician or psychologist or other persons about how your symptoms
affect you. Your
symptoms, including pain, will be determined to diminish your capacity for
basic work activities to the
extent that your alleged functional limitations and restrictions due to
symptoms, such as pain, can
reasonably be accepted as consistent with the objective medical evidence and
other evidence.
(d) Consideration of symptoms in the disability determination process. We
follow a set order of steps
to determine whether you are disabled. If you are not doing substantial
gainful activity, we consider
your symptoms, such as pain, to evaluate whether you have a severe physical
or mental impairment(s),
and at each of the remaining steps in the process. Sections 404.1520 and
404.1520a explain this
process in detail. We also consider your symptoms, such as pain, at the
appropriate steps in our review
when we consider whether your disability continues. Sections 404.1579 and
404.1594 explain the
procedure we follow in reviewing whether your disability continues.
(1) Need to establish a severe medically determinable impairment(s). Your
symptoms, such as pain,
fatigue, shortness of breath, weakness, or nervousness, are considered in
making a determination as to
whether your impairment or combination of impairment(s) is severe. (See
'404.1520).)
(2) Decision whether the Listing of Impairments is met. Some listed
impairment(s) include symptoms,
such as pain, as criteria. Section 404.1525(f) explains how we consider your
symptoms when your
symptoms are included as criteria for a listed impairment.
(3) Decision whether the