My blog

sure. Patricia
Hi Patricia, I wish I could say that since my pancreas has burnt
itself out that I was pain-free. Not the case. As a matter of fact,
the pain just seems to get worse. Hey, thanks for the spelling of
diarrhea. Now, I'm not promising that I will spell it right the next
time I try. That is one word that just won't stick in my spelling
memory, for some reason. Maybe because it is one of the worse
symptoms I have, and I wish I would never have to deal with it ever
again!!
Again, thanks for the info.
Lots of Hugs, Linda

Carole, I agree with Sandy 100%. You do give alot back to this
board. I think every one does. Its such a nice place to come, and I
feel very lucky to have found all of you. Thanks Alot.
Lots of Hugs, Linda

Hi All,
I know this isn't Pancreas related but I feel, as a mother and grandmother,
this email needs to get to everyone possible. Who knows....someone might see
this little "angel" and alert the police. My heart is aching for her and her
parents. Can you imagine what they are going through right now? There is
always hope that someone will see her. Some people take children to other
states. I pray that God will keep her safe and she will be returned safely
to her parents! I've also forwarded it to my youngest son who is a police
officer.
If I have offended anyone on this board by forwarding this email, I
apologize. It isn't meant to offend anyone....I just hope it will help
locate this beautiful little girl and return her home where she belongs.
This shouldn't be happening to our children!
Hugs & Prayers
Carole

Christine, Thanks, this makes me feel alot better. I am the type of
person who hates the thought of hurting others feelings, or even
having anyone upset with me. I have always been like this.
Lots of Hugs, Linda

Hi Debbie,
Thanks for the nice reply. I'm sorry that I'm not the only one that
gains weight. I also believe that my body tries to keep every bit of
food & fluids. When I had to have a blood transfusion in April they
came in the next morning to draw some to test it & they stuck me
several times & could hit it. I also had a groshong, and it wouldn't
work. I told them that my body is trying to tell them, they gave me
new blood & I need it, so it isn't giving any back to them. lol I
think right now I weight more that I did when the twins were born.
Its very depressing. I also believe that it is true that people
don't believe I'm as sick as I am because I look healthy. My GI doc
here in Spfld. came into my hospital room when I had the 2 blood
infections/pnemonia and said to me, "I have known & treated you for
years and you have never-ever looked sick. Now you really look bad,
and I'm sooooo sorry." I think he was trying to apologize because it
was the groshong/TPN combo where I got the infections from.
Expecially my family are the ones that are the hardest on me. My
husband, my mom & my sister. I have 2 brothers and they just kinda
ignore the whole illness thing. Oh well, I think God made us strong
with this illness, because He truly believes we can handle it. (Some
days better than others!!)
I hope you are having a better day today, and each day brings
brighters tomorrows.
Lots of Hugs, Linda

I was told that what the specialist hoped for me was that the pancreas would
burn itself out and I wouldnt have as much pain so far that has not happened.
I have had bad attacks where the enzymes where not elevated. Diarrhea is
the correct spelling I checked it in the dictionary to be sure. Patricia

Thanks for sharing this Karen!!!!!!!!
Sandy

In a message dated 01/20/2001 10:40:49 AM Central Standard Time,
CJWatts88@... writes:
<< I'll be fine now....for a
while anyway! :) I just hope I can give back half as much as all of you
have
given to me. Take care of yourself, Linda, and hope you have a wonderful
day.
Hugs & Prayers
Carole
Carole, you are giving as much in return as you are receiving. I am grateful
you are a part of this site. I enjoy reading your postings and feel like
I've gain a close friend even though we have never met in person. For each
of you who contribute and provide support to each other - THANK YOU!!!! I
learn from each of you and am so grateful to have found people who understand
and genuinely care about each other!!
Sandy

In a message dated 01/20/2001 10:24:56 AM Central Standard Time,
djssekis@... writes:
<< that's one of
the reasons it is hard for people to understand how sick i can get -
because
i don't look like i've missed any meals for sure.
Only those closest to me, meaning those who live with me or interact with me
daily, really understand that I am not just overeating. This has been the
most difficult part of my life that I've had to deal with. I hate being so
overweight and not having any control over it. I am extremely sensitive to
this and can see the disbelief in people's eyes. Some have even said that I
there is no way I would be overweight if I was not able to eat much. Some of
the remarks I've received from others have been so hurtful. It is wonderful
to know that we have each other isn't it!!!!!
Sandy

In a message dated 1/20/01 2:29:42 PM Eastern Standard Time, loggiekw@...
writes:

My current GI did tell me that he does have patients with chronic panc who
gain weight instead of losing. He said it can go either way.
Karen

Hi Karen,
That's true because I gained up until a year ago and then I started to lose.
Now I'm down to the weight I was twenty years ago. Since my diet hasn't
changed, I'm just as confused about my weight loss as I was my weight gain.
When I was gaining before, it wasn't because I was eating more so I don't
understand it either. I had a lot of swelling back then so I know I retained
a lot of fluid that attributed to some, if not all, of my weight gain.
During that time, the doctor told me, with Pancreatitis, you don't gain
weight but I know he's wrong about that. What's new....he has been wrong
about a lot of things. :) Karen, I hope you are having a good day and glad
you are still with us.
Hugs & Prayers
Carole

In a message dated 1/20/01 11:40:53 AM Eastern Standard Time,
CJWatts88@... writes:

Yes, today I do feel better emotionally...thanks to all of you. Christine
sent me a beautiful card with a lovely poem that I intend to add to my
collection. It really did help to adjust my attitude and focus on all my
blessings rather than things I cannot change. I'll be fine now....for a
while anyway! :) I just hope I can give back half as much as all of you
have
given to me. Take care of yourself, Linda, and hope you have a wonderful
day.
Hugs & Prayers
Carole

Dear Carole, I am glad you are feeling better today. I hope every day in the
future is a better day than the last day. Love, Shirley

In a message dated 01/20/2001 12:10:42 AM Central Standard Time,
liamhoha20@... writes:
<< Yes, I told him he hurt my feelings, and I do believe he felt bad
about it. After 21 years of marriage, he knew exactly what he was
doing. Also, he has never, ever seen me "primp" before, and I think
it threw him off guard, but still he had no right to say that. The
other reason I think he felt bad was because he really warned Amy not
to say anything. She did tell me honestly, she thought it looked
nice, but ask if she could have a shot at styling it for me. I think
since she has plenty of time on her hands this weekend, due to a
grounding, I will let her try. Can't hurt anything.
Linda, hang in there. I've now been married 26 years and it has only been
the last couple of years that my husband has stopped saying hurtful things.
Yes, he is very slow at coming around and he too always felt bad when he said
something that was hurtful. He always apologizes, but as I told him it is
not always easy to forget what was said. I don't think he says things out of
meanness because he is a very caring individual. I just believe he doesn't
understand how easy it is to slip back into old habits if you don't work hard
at changing those patterns of behavior.
You know, it is so wonderful to hear that there are other people out there
married for a long time and still having to work at making the relationship
work. There are times I've wondered why we just haven't gotten it down right
yet. I know intellectually that any time two people live together there will
be differences, however I've thought sometimes that he should know by now
what he does or says that irritates me or hurts my feelings.
Thanks for putting things in perspective for me. We have been through so
much together as a couple and I realize that many couples do not make it
through the difficult times. We have worked through so much and living with
chronic illnesses together now has it own set of problems that I am just now
learning to be more patient with.
Sandy

In a message dated 01/19/2001 11:37:15 PM Central Standard Time,
liamhoha20@... writes:
<< It seems like I'm the only person
with chronic pancreatitis that is over-weight. It stinks. I wish I
could lose some of it, and I really don't understand why I don't. I
don't eat hardly anything, and when I do it usually runs right out of
me. When I was on the TPN for the 6 1/2 weeks from Sept. - Nov. I
even gained over 20 more pounds. When I see Dr. Lehman next month, I
know he is going to yell at me again.
Linda, you are definitely not the only one who is overweight. I have been
overweight since this whole thing started with me. I've even had a doctor in
the past tell me I had to be overeating to gain weight and made me write
everything I ate down. He still didn't believe me when I showed him how
little I ate. I do think part of the reason I am overweight is a result of
my partial hysterectomy in '88, however I didn't start really gaining the
excessive weight until after my first hospitalization. I am still overweight
and don't understand how this can happen when I go such long periods of time
not able to eat anything and on only IV during the hospital stays. I am
definitely not a big eater and try to watch everything I do eat since I am
able to continue eating. There are some things I just can not tolerate
anymore, however I am just so thankful that I am still able to eat that I
watch it rather carefully.
If anyone has any ideas or suggestions why I continue to be overweight or
what I can do to lose the weight I would be really grateful. I have come to
terms with the fact that this is just the way I am, however I know that I
would be healthier if I lost weight.
Sandy

In a message dated 01/18/2001 8:27:58 PM Central Standard Time,
mrsteep1@... writes:
<< I just know that I hurt all
over...and very nauseated able to drink some but food and I aren't getting
along yet.. the doctor checked out my main duct and said he couldn't get the
needle in there cuz it was so small so that isn't a good sign since I had
the
stent there to open it and doesn't seem to have worked.. sorry to ramble
on..
but you asked for it...lol I hope things are better for you .. how are you
feeling?
Wishing you all a
pain free day Anna from Michigan
Anna, I am so sorry that your surgery didn't seem to ease your pain level or
provide you with any relief. I will keep you in my thoughts and prayers.
Sandy

ditto that, as I didn't get it either!
Thanks
Christine

In a message dated 1/20/01 1:32:02 PM Eastern Standard Time, smraef@...
writes:

<< Karen, what a marvelous gift your daughter gave you in the form of
that card! My children also seem to remember the small things my
husband & I did, not the big, "important" gifts or occasions. In
times of depression, when the feelings of being worthless, no good to
anyone, being dependant on others for help with so much, its
comforting to remember what really matters to our near-and-dear ones.
Remembering the things we CAN do, rather than what we can't do, helps
in the struggle to keep going.
Hoping for a healthier, happier new year.........
jang

I missed that post, too. I don't understand why that is happening to me so
often. Is this happening to anyone else? I enjoy Karen's posts and really
hate I didn't get it. Karen, do you still have that post?
Hugs & Prayers to all
Carole

In a message dated 12/26/2000 9:26:06 AM Central Standard Time,
jang2@... writes:
<< Karen, what a marvelous gift your daughter gave you in the form of
that card! My children also seem to remember the small things my
husband & I did, not the big, "important" gifts or occasions. In
times of depression, when the feelings of being worthless, no good to
anyone, being dependant on others for help with so much, its
comforting to remember what really matters to our near-and-dear ones.
Remembering the things we CAN do, rather than what we can't do, helps
in the struggle to keep going.
Hoping for a healthier, happier new year.........
jang
Dear all,
These kinds of cards, letters, or notes are the ones that I keep and when
things really get to looking bad, I pull them out and read them again and
again until I am feeling better. For some of the really significant ones
that have the most meaning I put these up on my bathroom mirror where I see
it often so when I am really getting down on myself I can be reminded that I
am loved regardless of the limitations this disease has put on me. It helps
me to focus my perspective again on what I can do instead of what I am not
doing.
For me my children are what has made my life wonderful. I'm sure each of you
feel the same way. It has been amazing when I look back on how much they
have impacted my life and how much I have gained from having them in my life.
Because of having two miscarriages, 1 child dying from cancer, and then
seeing all the abuse and neglect in this world, I can truly see the blessings
that has sent to me. Just being able to watch them grow up and be allowed to
be a part of their lives is perhaps the most wonderful blessing we can have.
As we all know this disease can take such a toll on us and our families in so
many ways. When our children or significant others in our lives see how
important these little things are to us as well, they feel the importance we
have placed on their involvement in our lives and it also helps them feel
better to know they have done something to make my life better as well. I
think it helps them not feel as helpless and gives them some sense of hope
that they have some control in making the quality of our life better. We all
know what it feels like to feel hopeless and to have no control over this
disease. Our loved ones feel the same way and suffer along with us, so I try
to find ways to help ease their pain as well. This is only one little thing
that I have found has helped my family in dealing with this disease process.
Hope some of you find this helpful to you and your loved ones and hope that
all of you are having a better new year so far!!
Sandy

Hi Sandy,
Glad you are back home. Was the trip successful? It doesn't sound
as if it was exciting though.
Yeah, I imagine the summers there are hard. We used to live in
Kansas City and Omaha and the summers there are atrocious. Of
course, I didn't know that until we moved up here. We live on the
west side of the state by Lake Michigan, and the lake really protects
us. In winter it is not as cold (no Siberian express coming off the
plains) and no extreme heat in summers. The summers here are what
really keep us here. I told my hubby last summer we are true
Michiganders now, because we were complaining of the heat. When we
first moved here, we laughed at people who were complaining about 85
degrees! And now we do it too! Oh my!
I am with you. I try not to dwell on what the future may bring as
far as insurance goes. It's hard enough to deal with the illness,
without worrying about that stress on top of it. So I don't go
there.
I am glad you are able to keep focused with church duties and all.
God is the only thing that keeps me going forward in all of this, and
I am afraid that right now my faith feels real small. But He is big
enough to handle that, isn't He?
Yes, I too am amazed by the people in the group. They have all been
through so much and still have so much to offer one another..........
I am having not too bad a day. I tried to eat some baby cereal
however and now I hurt. when are these docs going to understand
that? I keep telling them that if they would just quit making me
eat, I would be fine :-) But seriously, it doesn't matter WHAT I
eat. It matters THAT I eat. Because whatever I put in my system
gets things all stirred up. I think it is because that duct is
twisted. I mean, doesn't that make sense? The pancreas has
definitely had time to heal (since October), and food definitely sets
things off, so I don't know what else to think. Next time I go to
the doc, we need to discuss the next step and not just talk about
clear liquids and pain meds. After six weeks, I think I have tried
long enough.
How bout you? Good days lately? I hope so!
Take care of you!
Be well,
Christine

In a message dated 12/25/2000 9:11:27 AM Central Standard Time,
jang2@... writes:
<< This is technical in parts, but is very informative about "normal"
pancreatic structure & function. Hope everyone is having a comfortable
holiday........
jang
Jang, this is wonderful and helps explain how the bodily process works for
the pancrease. Since I have a triglycerid problem, now I understand why my
pancrease would revolt to the high levels of fat. I am printing this off and
will be keeping this for when I go to the doctor and I am not understanding
what is being said again, I can get him to literally go through and explain
it better. I am a very visual learner and once I see something either in
writing or a picture I am better able to process this information. Knowing
which hormones and enzymes do what is really helpful as well.
Thanks for all your technical knowledge and assistance in learning more about
how complicated this highly important organ is for our body. There are so
many things that can go wrong and now I better understand why so many of us
have had different experiences with this disease.
Sandy

Nope, you didn't say anything at all. I just got worried after I
posted that you might think I was blowing off your reaction.
I love having you here. You add a lot to the group with your issues
and your family and your experiences. So. take good care of yourself
and we will keep plugging along with this crazy illness until someone
out there can help us!
Love ya,
Christine

Thought some of you might be interested in checking this out.
Karen

I don't have chronic panc, but I am also battling my weight. When I first
had acute panc, I lost 20 lbs the first month. I stayed stable until july
when all of a sudden (in 20 days) I gained 21 lbs. I now also weigh more
than ever in my life. I am determined to get the weight off because I really
believe doctors don't take my problems seriously because I am overweight.
My current GI did tell me that he does have patients with chronic panc who
gain weight instead of losing. He said it can go either way.
Karen
In a message dated 1/20/01 10:24:55 AM Central Standard Time,
djssekis@... writes:

In a message dated 1/19/01 11:37:15 PM Central Standard Time,
liamhoha20@... writes:

It seems like I'm the only person
with chronic pancreatitis that is over-weight. It stinks. I wish I
could lose some of it, and I really don't understand why I don't. I
don't eat hardly anything, and when I do it usually runs right out of
me.

no, no, no - you are not the only one who gains weight! i weigh more right
now than i ever have in my whole life (even at 9 mos. pregnant!) i don't
understand it either, except i have come to the conclusion that my body is
trying to hold on to every morsel of food and fluid! lol. that's one of
the reasons it is hard for people to understand how sick i can get -
because
i don't look like i've missed any meals for sure.
debbie s. (arkansas)

In a message dated 1/20/01 8:57:20 AM Central Standard Time, loggiekw@...
writes:

However, when I said, "It's probably very unlikely that I'll ever have
another attack of acute panc, right?" He said that he would not say that
because with my triglycerides being high I could have one at any time.

ooops - - - sorry i misread. you were saying that the doctor could NOT tell
you that you would'nt have more problems.
debbie s. (ark)

In a message dated 1/20/01 8:57:20 AM Central Standard Time, loggiekw@...
writes:

Do you mind me asking how high your triglycerides were? Mine are high now
and going higher. The day before I had acute panc, I had routine lab work
done and my triclycerides were around 270. When I saw my current GI the
first time in Novemeber, they were 479. He says the triglycerides were what
probably caused the panc. However, I don't really think 270 is that high.

my new gi doc at univ med center in little rock said that he wouldn't
consider triglycerides being the cause unless they were consistanly over
1,000. mine had been around the 270 mark also, but under congtrol with zocor
and lipid. he took me off the lipitor. my gall bladder came out in november
of 99 with it showing no disease or stones etc;. i am soooo glat that
your doctor thinks you will not have any more panc. problems! let us know
how you are doing. your friend, debbie s. (arkansas)

In a message dated 1/19/01 11:37:15 PM Central Standard Time,
liamhoha20@... writes:

It seems like I'm the only person
with chronic pancreatitis that is over-weight. It stinks. I wish I
could lose some of it, and I really don't understand why I don't. I
don't eat hardly anything, and when I do it usually runs right out of
me.

no, no, no - you are not the only one who gains weight! i weigh more right
now than i ever have in my whole life (even at 9 mos. pregnant!) i don't
understand it either, except i have come to the conclusion that my body is
trying to hold on to every morsel of food and fluid! lol. that's one of
the reasons it is hard for people to understand how sick i can get - because
i don't look like i've missed any meals for sure.
debbie s. (arkansas)

crystal pratt was supposed to have a celiac block on the 18th and she said
she would have her husband write a note to the onelist to let us know how it
went, but i have not see anything from him. has anyone talked to crystal or
chris?? she had really been "down" prior to this procedure and i had really
been worried about her. she has two small children and they all live with
her in-laws at present. if anyone has heard - please send a note to the
list. thanks!! debbie s. (arkansas)

Hey Christine,
I wish I could answer for you and everyone what to do next but my only answer
is a DAY AT A TIME. To answer your question on the status concerning
Brandan, yesterday was a good day he was up and playing on the computer, he
loves playing video games ( I think it keeps his mind in other places.),
They yet again want to do another ERCP and explore his major duct but for now
we are trying a vitamin cocktail and a drink called PEPTAMEN. He was a juice
supplement but tired of it quickly...( someone asked about slimfast that is
what I have been giving Brandan because after he came of TPN 2 months ago, I
wanted to make sure his vitamins and minerals were still being given.) seems
like sometimes we are the doctors, nutrionistist, etc... I am now thru our
home healthcare trying to get the peptamen and I will let you know how it
goes. It is very expensive but I have been told it can not only help with
vitamins and minerals but can help with the function of the pancreas..
Brandan also WHEN he eats takes viokase with everything , they had him on a
new enzyme but it wasnt breaking down in his system so they went back to the
old one which they called viokase. ( I have heard henry talking about it
also.). He isnt able to go to school because of the nauseasness, and
fatigue, also the fact that he is on a fentenyl patch 24 and 7 for control of
his pain. ( does anyone else use a patch??????)....It is hard for his
friends to understand, Brandan has always been very active and upbeat,
although he tries to remain upbeat the active part is no longer
there...Besides the fact that Brandan looks so healthy (thanks to the drinks
and tpn) and always has it is hard for people to understand...His brother is
great, stays when he feels well enough and keeps him company and by the way
my oldest just got his license so the boys when Brandan is up to it love to
take off on me, ( they just go get a movie and come right back) but He does
stay involved with his brother, which makes things a little easier. And from
time to time my oldest son has been my strength, when I have needed a
shoulder. I hope I have answered your questions and please feel free to ask
away, dont ever be sorry for being curious or intersted thats never a
problem. I truly feel for you , You and Yours are always in my thoughts and
prayers...Keep smiling..TTFN...Peg...

In a message dated 1/20/01 12:37:04 AM Eastern Standard Time,
liamhoha20@... writes:

. First
of all, my pseudocyst was INSIDE in the tail of my pancreas.

Hi Linda,
I assume my pseudocyst is on the outside of the tail but now you've made me
wonder...just didn't think of it being on the inside and hope it isn't! I'll
add that to my list of questions to my GI doctor. I'm sorry you were having
trouble sleeping last night. Do you have any medication you can take just at
night for sleep? I don't take medication for sleep consistently but when I
do have sleepless nights, I will take something to help me get a good
night's rest. I have found that Benadryl is a very safe medication to help
you fall asleep and it doesn't have all the side effects other drugs do. If
you need a sedative, ask your doctor for a prescription of Ambien...it works
for me when I need it.
Yes, today I do feel better emotionally...thanks to all of you. Christine
sent me a beautiful card with a lovely poem that I intend to add to my
collection. It really did help to adjust my attitude and focus on all my
blessings rather than things I cannot change. I'll be fine now....for a
while anyway! :) I just hope I can give back half as much as all of you have
given to me. Take care of yourself, Linda, and hope you have a wonderful day.
Hugs & Prayers
Carole

Sandy,
Do you mind me asking how high your triglycerides were? Mine are high now
and going higher. The day before I had acute panc, I had routine lab work
done and my triclycerides were around 270. When I saw my current GI the
first time in Novemeber, they were 479. He says the triglycerides were what
probably caused the panc. However, I don't really think 270 is that high.
I've been following a very low fat diet and this week my triglycerides were
559. My family doc said he normally lets it go til over 1000 with no med,
but gave me a prescription for Lopid just because the GI said we have to get
the triglycerides down. The GI says that my pancreas looks fine right now
and that I don't have chronic panc. My pain and nausea were coming from my
entire stomach wall being inflamed because of gastic bile reflux which was a
complication of having my gallbladder removed. I guess the GI is right
because my stomach is much better since he started me on carafate and reglan.
However, when I said, "It's probably very unlikely that I'll ever have
another attack of acute panc, right?" He said that he would not say that
because with my triglycerides being high I could have one at any time.
I was just wondering if anyone had any insight on how high the triglycerides
get before they cause problems.
Karen
In a message dated 1/19/01 11:04:35 PM Central Standard Time, smraef@...
writes:

I think you will learn that this disease can take so many different avenues
and manifest itself for a variety of different reasons. Mine started as a
result of excessively high triglycerids. Since I developed this problem
with
my pancreas I've found that this is not an uncommon cause of the disease.
I
am hoping that now that I've gotten my levels under control with my
medications that I can prevent some of the acute attacks. I have been able
to not have as many attacks as I was having and have now been able to go 9
months without another admission to the hospital. I do have some chronic
pain but is much better than it used to be. My doc tells me that I've got
quite a bit of damage to my pancreas, however since I've kept my
triglycerids
under control with the two different meds I take for it, the acute pain has
decreased.

In a message dated 01/18/2001 3:31:57 PM Central Standard Time,
briffle@... writes:
<< Well, what do you think?" He laughed at me!! He
said, "Now all you need to do is get rid of the gray! ha ha ha ha".
I was so hurt!
Linda,
I am usually pretty calm and mild mannered! But I am afraid I would
have to rip his lips off for that!
What a turd!!!!
You look beautiful! Hang in there!
*hugs* Becky
Linda, I'm with Becky on this one. I think I would like to sew his mouth
shut so he couldn't say hurtful things to you. Have you let him know how
much this really hurts you? For years my husband's "humor" was coming across
in a hurtful way and he didn't realize how bad it was hurting me until I had
to get really nasty with him and let him know how serious I was. It took
some practice and time for him to get to the point where he doesn't say
hurtful things very often now. This was how he was raised and he didn't
realize he was being so critical or downright mean.
Hope this helps some and I hope that you have had a good day and feel
wonderful and beautiful!!!!!!!!
Sandy

Christine,
Did I say something that upset you? I just don't understand why
you thought I thought you were blowing me off, because thats not the
case at all. I really, truly do appreciated the things you said, and
I'm just kind of confused. Sometimes I need to have someone make me
understand the things that happen. If I said something to offend you,
please, forgive me.
YES!! I'm so glad we have this place to come to. I feel very
fortunate to have found it. I love the comfort and advise I find
here, because I really don't have any support here at home. Don't
even know of anyone else around here who has this illness. A friend
of mine works in the ERCP lab (which isn't much, compared to IU or
Ohio State) and she told me there are some cases around here, but not
awhole lot. Thanks again, and I hope you will have a better weekend.
Lots of Hugs, Linda

In a message dated 01/19/2001 4:26:49 PM Central Standard Time,
CJWatts88@... writes:
<< ATTITUDE
The longer I live, the more I realize the impact of attitude on life.
Attitude, to me, is more important than facts. It is more important than
the
past, than education, than money, than circumstances, than failures, than
successes, than what other people think or say or do. It is more important
than appearances, giftedness or skill. It will make or break a company....a
church....a home....
The remarkable thing is we have a choice every day regarding the attitude we
will embrace for that day....We cannot change our past... We cannot change
the fact that people will act in a certain way. We cannot change the
inevitable.... The only thing that we can do is play on the one string we
have, and that is our attitude.
I am convinced that life is 10% what happens to me and 90% how I react to
it.
And so it is with you... We are in charge of our attitudes.
Author Unknown
Carol, I loved this article. I believe this as well. Thanks so much for
sharing it with us! I am going to copy it off and keep it handy for when I
need an adjustment.
Sandy

Hi Mona,
I'm so happy your CT scan, ultrasound & HIDA scans are normal!! What
a relief. I'm also glad you have been feeling like your old self
lately. That is wonderful news. About the chills. I have chills
alot, but not right after I eat. Probably because that is when I'm
running to the bathroom - lol. I have a low grade to borderline
fever all the time, so I do chill alot because of that. Some days
worse that others.
Also, I wanted to wish you good luck at your appt. on Tuesday.
Please keep us posted about what happens, and I hope you continue to
improve. You are in my thoughts & prayers.
Lots of Hugs, Linda

Hi Carole :~)
Your welcome for the quick answer to your post. Let me try to answer
your questions. If I forget something, please just ask again. First
of all, my pseudocyst was INSIDE in the tail of my pancreas. I've
heard of them being on the outside too. I think that is another
reason they didn't drain it. It was from 93 - 95 that I had the
pseudocyst, and I'm trying to remember how big. I think it started
at maybe 6 cm. (?) maybe alittle bigger and very slowly went down.
It was a long, hard battle. My CT scans now don't show it anymore,
but there is some scarring, I think. Isn't this pitiful? Have to
guess at these things, you would think I would have never forgot.
The last time I had my amylase checked it was 97. I've been told
that there are a couple different ways to run the test, and it
depends on the test they use if the numbers are elevated or not.
Because one time they told me it was around 18, then another it was
97, so I thought they were elevated, but the doc said they weren't.
Just another thing to keep me confused about this illness.
About the enzymes. I have tried them several times, viocase & pan(?)
can't remember how to spell it. It only made me sicker. Everytime I
tried to take them, I would vomit. I also tried the sandostatin
shots. And last Jan. after the ERCP Dr. Lehman did, I tried the once
a month-long acting sandostatin injections. But after I developed
the 2 blood infections & pnemonia, my doc here in Ohio didn't want me
to use it anymore, because they have some side effects and I had been
so sick, he wanted to give me a break. Yes, pseudo does mean false,
or fake. It was explained to me by the doc at Ohio State that it was
just a pouch full of fluid. But isn't that what a cyst is? About
the slim fast, I did try it before, but it was to lose weight. Dr.
Lehman told me I had to loose some. It seems like I'm the only person
with chronic pancreatitis that is over-weight. It stinks. I wish I
could lose some of it, and I really don't understand why I don't. I
don't eat hardly anything, and when I do it usually runs right out of
me. When I was on the TPN for the 6 1/2 weeks from Sept. - Nov. I
even gained over 20 more pounds. When I see Dr. Lehman next month, I
know he is going to yell at me again. But anyways, last March when I
had the blood infections/pnemonia and I was having trouble eating my
GI doc had them bring me ensure. That helps with the nutrients I
needed. Another thing is, every time I go into the hospital they
have to give me potassium. And my liver enzymes are always
elevated. I did have hepatitis in 83, and I have ask several times
if that is why they are elevated, but they just shrug their shoulders.
Thanks for asking about my girls. They are the only true thing that
keeps me going with this illness. Amy is 13. Holly & Halie will be
11 next month. Amy will start high school next year, and the twins
will start middle school. My heart is just breaking! I have been
sick the twins entire lives. I feel so bad, but they all 3 handle it
so well. They are my special miracle babies. We had a sperm donor.
I had recently told Amy. Her dad & I were having some problems, and
were seperated, and she was feeling sorry for herself. "Why? Its
all my fault." That kind of things. So after I told her she thought
it was great. She went to school and told all of her friends. She
also thought she was extra special and didn't have to follow the
rules anymmore. I sure had to set her straight real fast.
I hope you are doing better this evening. Here I sit, again, in pain
and not able to sleep. The vicodin just isn't working for me
anymore. I go to the doctor on Tuesday, I think, and I'm going to
ask for something different. He is funny about giving me pain meds,
he is my family doc, my GI doc here in Springfield won't do my meds,
or even any procedures because he says Dr. Lehman is one of the best
in the world, and if I can have the best treat me, then be it. He
will take care of me in the hospital, but not at home. He did manage
my TPN though, but not my pain/nausea meds. I wish he would but I
think he is afraid.
Wow, talk about writing a book!! I think I just did! I'm so sorry.
You are in my thoughs and prayers.
Lots of Hugs, Linda

In a message dated 01/13/2001 8:56:19 PM Central Standard Time,
poncho9191@... writes:
<< And if you still can't sleep, it's OK as I said you have been here before
and
it is not the end of the world. You will have the chance to try again a
little later, maybe even tomorrow
Poncho
Thanks Poncho! I have tried several of these, however I am open to trying
the others as well. Who knows which one will be just what I needed.
Sandy

In a message dated 01/14/2001 10:54:27 AM Central Standard Time,
sunflower6668@... writes:
<< You know, a lot of people look at me and say, How can I
complain when I see what you are going through? Well, I answer, I
could say the same thing. When I look at others, I am grateful for
the burden that I must bear. For there is always someone out there
with greater or lesser burdens. I think of the ones with cancer or
major physical disabilities..............and then I thank God. Take
care of yourself.
Are you working full time at this time?
Be well,
Christine
Christine, I have just returned from Austin where I had to go for training to
complete the requirements for my certification. It ended up being cold,
rainy, and windy there and since I didn't drive down myself I was dependent
upon a co-worker to get around and ended up not getting more than a mile away
from the hotel. I was starting to get cabin fever and I am now glad to be
home.
I am able to work full-time and I hope I will be able to work long enough to
retire. I too am the one carrying our family on insurance and at times this
really scares me. I still have all three of my children on it as well,
especially since the oldest two are still in college. My husband also has
several chronic illnesses that requires a great deal of medical care and he
is not able to carry us on insurance because he does not make very much money
at all and the insurance through his company would just take all his income.
It is really scarey to think that we may one day not be covered. I try to
not think about that at this time so I don't get too overwhelmed.
You know sometimes we have to just stay focused on the blessings we do have
to stay as positive as we can in order to not let this illness completely
take over our lives. I am like you, I am so much better off than so many in
the group. It has helped so much in preparing me for what may lay ahead for
me though. I feel like I've gained a great deal of strength primarily from
everyone in this group. The information that I've learned and the compassion
and concern shown by everyone is just amazing to me. I am a firm believer
that your emotional health impacts your physical health a lot.
You wondered how I can continue to work for Child Protective Services and
still remain positive. Well, one of the best therapies I do to help me keep
my perspective is I am in charge of the nursery every Sunday at church and
this gives me a chance to see babies and parents in happy, loving
relationships. I get to see the children being cared for appropriately and
get to do some of the spoiling when we rock and play together. I watch the
little ones - from birth to 2 or 3. I also try to really focus on just
enjoying my children and be grateful for what the Lord has blessed me with
and allows me to do for and with others.
Wish I lived farther up north. The summers here really kill me. We lived in
Ky. before we moved here and I loved it. I can only imagine how beautiful it
is up as far north as you are. Traveling is one of the many things I
enjoying doing and I am hoping that I can begin doing this again in the
future. Getting to the Great Lakes area is one of my goals. I've made it to
Minnesota and Illinois, but that is as far North as I've been. It was almost
40 years ago when I was in Minnesota so I'm sure it is quite different now.
Hope this finds you doing well today?
Sandy

Good Evening Henry,
Thanks for the info. I'm sorry, I did read the other post you
mentioned and meant to respond, but now I don't know why I didn't.
No offense to anyone else on this board, but it has come to my
attention you are one of the "brains" of the group. I don't mean
that in a bad, or snobbish way, I mean it in a good way. I wish I
had your knowledge and understand of this illness. I've been very
impressed with yours answers. I did read that you have a fabulous
job. May I ask what you do? I was just very courous.
I hope this weekend is a good one for all of you. You are in my
thoughs & prayers. And remember, take care of you, there is only
one. (Did someone say that sometime or another on this board?) I
read it somewhere, and I really like that saying. If I stole
someones quotes, please forgive me and let me know.
Lots of Hugs, Linda

In a message dated 01/15/2001 1:57:02 PM Central Standard Time,
djssekis@... writes:
<< i have been mad/down the past few days. not sure who i'm mad at worse -
me,
this illness, my husband or life in general! lol it will pass. we have to
have a pity party ever so often, i suppose so that we can let out all the
excess that has built up in us. hope you are doing well. i slept last
night with the help of ambien! the sun is out today and it is 48 degrees.
my mom told me that we are supposed to have more ice and snow later this
week, however. i need to go to the grocery store today - i don't even have
a
slice of bread! your friend, debbie s. (ark)
Debbie, I hope you have been having a few better days lately. I just
returned this evening from Austin where I had to go for 4 days of training
that I needed for my certification.
I hope you have been able to work through your anger. If you ever need to
vent, please feel free to vent. I'm here when you need to just talk through
everything. You know that sometimes all you have to do is get everything out
and then it all makes sense. Keeping everything bottled up just makes things
worst.
I've been very lucky or should I say blessed! I have been able to get my
triglycerids and cholesterol levels under control and haven't had to go back
to the hospital ER since April 2000! I have pain almost on a constant basis,
however it is not anything like it used to be. I am getting very anxious
though as I know there will be another acute attack. I'm just trying to take
care of myself the best I can right now and just trying to focus on my
blessings, while I feel good enough to do this.
Hope you are doing well. Keep me posted and please feel free to use me to
vent to if you need to.
Sandy

Hi Peg,
I don't really have any questions about the EUS at this point. My
only questions are NOW WHAT? If you could answer that, we would all
be so much better off....hope Branden is doing okay. What is his
status at the moment? Do you have any test/procedures scheduled? Is
he able to go to school? How do his friends/siblings handle it?
Sorry for the questions. Take care of you. You are both in my
prayers.
Be well,
Christine

In a message dated 1/19/01 7:46:25 PM Eastern Standard Time, kwmoore@...
writes:

I've finally been able to eat more the past few weeks and notice that
I always end up having to either put my coat on or wrap up in a
blanket right after I eat. Does anyone else do this?

Hi Mona,
I get cold after I eat but it sounds so weird I haven't mentioned it to the
doctor yet...I usually use the hot water bottle. I have no idea why this
happens. I thought something might be wrong with my Thyroid since I
understand being cold is one of the symptoms of Thyroid disease but now I
wonder if the Pancreas has anything to do with it. If you find out, please
let me know. Glad you have been able to eat and hope you don't have to have
an ERCP especially since you are doing better. I've only had one ERCP and
don't want another one. Hope you continue to be able to eat and I'll keep
you in my prayers. Wishing you a day filled with sunshine with no pain!
Hugs & Prayers
Carole

I've finally been able to eat more the past few weeks and notice that
I always end up having to either put my coat on or wrap up in a
blanket right after I eat. Does anyone else do this? I finally get
to see a GI on Tuesday and I'm trying to write down all my symptoms.
This one seems a little silly. My CT scan results are in and it was
normal, along with a normal HIDA scan and ultrasound. I'm hoping for
some good info from the GI. ERCP is his specialty so I'm hoping he
won't jump the gun and order one for me since I've been feeling
"almost" like my old self this last week. I'm very nervous about
having an ERCP.
Hope you all have a good weekend.
Mona

Hi Dawn,
So what did you do? I mean, it's just so strange. I went down there
for this procedure and they gave me absolutely no guidance. No
nothing. I have two calls in to his nurse practitioner and have not
heard back. The complication I have is that U of M is managing my
TPN and I don't know what direction to go. I want to get rid of U of
M and have IU take care of me. But I don't know which way to go!
What did you do when it seemed so up in the air for you? Is your
chronic mild or has it progressed? Where do you live? Close to IU
or do you drive as well? Thanks for the response. How are you
feeling these days? Do you work? Children?
Take care Dawn,
Christine

In a message dated 1/19/01 5:56:37 PM Eastern Standard Time,
liamhoha20@... writes:

They just kept
an eye on it at Ohio State with many, many CAT scans. It finally
dried up on it own, after several years. I'm not sure if that is why
my pancreas has burnt itself out or not.

Hi Linda,
Thanks so much for your quick reply. One more question...do you know how
large your pseudocyst was when they decided to let it alone and watch it
through CT Scans? That's what they've been doing with mine for about a year
now but mine isn't shrinking. My last CT Scan on December 8th showed the
cyst to be 4.5 cm's. I really do believe my Pancreas is burning out because
the first time I had Acute Pancreatitis was in 1986 and I've had trouble off
and on for many, many years. The last check on my Amylase was 16 which
indicates to me that I have very little Enzymes but what do I know??? Do you
know what your Amylase is? The doctor doesn't have me on any Enzymes to help
with digestion but I intend to ask him about that at my visit on March 13th.
I'm concerned more because I don't get the nutrition I need when I can't eat
and of course, I lose weight. I've tried to take vitamins but for some
reason, they hurt me, too. I've recently purchased slim fast hoping I can
get my vitamins from it. Has anyone ever tried that as a supplement with any
success?? I'm going to mix it with my skimmed milk and hope I can tolerate
it...we'll see.
I looked up Pseudocyst and the definition of Pseudo is false or fake. I've
never heard of any cysts called Pseudocyst except on the Pancreas. After
having two of them, you'd think I'd know but when the pain goes, I forget and
move on hoping it won't happen again.
When I had my first documented Acute Pancreatitis with Pseudocyst on tail
with surgery, My oldest son was in his first year of college, my daughter was
a senior in High School and my youngest son was in Junior High...talk about
stress with teenagers...I had my share! Now, my kids have grown up and they
are very concerned about my health where they didn't understand before. What
ages are your children? At least this time, I can give in to my fatigue
where I couldn't before... I was just going to ask you another question and
I've written a book!!! Sorry, thanks again for your help and I hope tomorrow
will bring lots of "sunshine" into your life! You will be in my thoughts and
prayers.
Hugs & Prayers
Carole

Hi Christine,
I'm responding to your post about the celiac block. I have had 2 in the
past, both with not very good results. They both gave me relief for about 2
weeks. After my second one they sent me to the hospital cafeteria to eat and
I ate an entire meal (carefully)without pain. From that point I continued to
eat carefully, but could eat complete meals for about a month or so. And
then things started to return to what they had been.
You may hurt more because they were probing around in there,so hopefully
that settles down for you. Maybe you'll be one of the blessed ones who gets
many months of relief. I have heard that blocks done during an endoscopic
procedure are much more accurate and tend to last longer. Mine were not done
that way so I would expect it to work better for you. Hang in there!!
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Dear Linda,
Hi! I'm Henry from The Pancreatits Support group. I e-mailed you befroe,
but I think my post didn't get through because I didn't hear back from you,
but this happens sometimes, I don't know why. I have had Chronic
Pancreatitis for 8 and a half years due to Pancreas Divisim.
The question of Pancreas burnout is one that i hear about a lot in my
local Pancreatitis support group. I have a degree of this due to repeated
Pancreas attacks and the effect of Pancreas autodigestion. My Pancreas is
only a third the size it was due to different surgeries and scar tissue.
I've also got Insulin dependent diabetes due to this burnout. You can still
have severe pain even if your enzymes don't elevate very high because the
pancreas doesn't produce enough enzmes due to the damage. It is important to
look out and be tested regularly for diabetes with this my endroconologist
tells me. The digestive symptoms you describe can go along with the burnout
alos due to not having enough enzymnes to properly digest your food.
Sometimes they prescribe pancreatic enzyme suppliments to help with this. I
take Viokase with each meal. I hope this helps you some, and hope to hear
from you. It's always nice to hear from new members! So welcome, and I hope
you feel better soon!
Your New Pancreas Friend,
Henry

Hi Carole, I'm so sorry to hear you are having a bad day. To answer
your question about the pseudocyst. They did not drain it. I had a
surgical "team" come in to see me on one of my many stays at OSU, but
they decided to see what happened with it on its own. They just kept
an eye on it at Ohio State with many, many CAT scans. It finally
dried up on it own, after several years. I'm not sure if that is why
my pancreas has burnt itself out or not. I always mean to ask the
question WHY? but always gets side-tracked. I'm sorry I'm not able
to help you much with this. I know what you mean about day-by-day.
I'm having a very hard time too. Didn't sleep at all last night,
after I took the girls to school I did get a few hours sleep before
they came back home. Now I'm getting ready to go pick Amy & a friend
up from the movies. All I wanna do is lay and be left alone. But on
the other hand I'm so glad I have the girls to keep me going.
Good luck on your decision about what to do about your pseudocyst.
Do you know what the term "pseudocyst" means?
I hope you have a better night & day tomorrow. Please, keep me
posted.
Lots of Hugs, Linda

In a message dated 1/19/01 10:41:46 AM Eastern Standard Time,
CJWatts88@... writes:

Dear Linda,
Could you tell me what they did about your Pseudocyst...did they drain it?

God bless you, Linda, I'm sorry you have had to endure so much with this
"horrible" disease. I haven't had all the procedures most have had and
hope
I don't have to but I know there are no promises with Pancreatitis...we
never know....one day at a time! How can we expect others to understand if
we don't?....soooo frustrating. Can you tell I'm not feeling well today?
:)
I hope you are having a better day today. Please let me know about the
Pseudocyst since I'm trying to make the right decision about mine.....if
there is a right choice! I'll keep you in my prayers.
Hugs & Prayers
Carole
Dear Carole, I am so sorry you are having a bad day. I will be praying for
you to feel better very soon. Love, Shirley

Hi Mike! How are you doing these past couple days? I hope you are
doing somewhat better.
Thanks for taking up for me!! I sure do wish you could do something
to him!! He has some problems of his own - and he won't help
himself, so he is hurting all of us. He is a drinker, an alcholic,
actually. He won't get any help, no matter what I say or do. Now,
tell me, is this not fair, or what? He is the one that drinks, and I
am the one with pancreatitis....................life stinks.
Here it is 3:41 am, and again a sleepless night. The pain just seems
to be getting worse, and the vicodin doesn't seem to be working for
me anymore. I am lucky to have this contracption to get me through
these long, cold wintry nights. (And long hot summer nights too!!)
I hope your Friday morn brings you a better day.....Take care of you,
there is only one............
Lots of Hugs, Linda

In a message dated 1/19/01 1:32:23 AM Eastern Standard Time,
liamhoha20@... writes:

Was put on TPN, developed a
pseudocyst in the tail of my pancreas

Dear Linda,
Could you tell me what they did about your Pseudocyst...did they drain it?
God bless you, Linda, I'm sorry you have had to endure so much with this
"horrible" disease. I haven't had all the procedures most have had and hope
I don't have to but I know there are no promises with Pancreatitis...we
never know....one day at a time! How can we expect others to understand if
we don't?....soooo frustrating. Can you tell I'm not feeling well today? :)
I hope you are having a better day today. Please let me know about the
Pseudocyst since I'm trying to make the right decision about mine.....if
there is a right choice! I'll keep you in my prayers.
Hugs & Prayers
Carole

good?)
Hello Staci! I'm so glad you had a better day, and hoping your
Friday will be even better. You are so right, it is a day to day
thing. I have been having alot of problems for about a week now.
I'm tired of it. And now, its gonna snow this weekend. It just all
went away! Why does it have to come back? California, huh? Are you
experiencing any problems with the blackouts? DUH! You posted, so
you must hav electricity. When I'm on pain pills, sometimes I get
these dummy attacks, please forgive me.
I'm hoping your new doctor can correct your problem. Good luck!
When is this 2nd ERCP taking place? I know exactly what you mean
about bringing on an attack. I always have attacks after them. An
ERCP gave me my first really, really bad attack of pancreatitis. At
Ohio State, didn't leave for 6 weeks. Was put on TPN, developed a
pseudocyst in the tail of my pancreas that was bleeding, so they had
to give me 2 units of blood, And That was my first experience with a
central line too. Since I have had many, many other central lines,
groshongs, PICC lines, and last month my first ultrasound/florescopic
inserted central line, in my neck. They have come along ways since
93!! Many, many CAT scans, MRI's,only 4 ERCP's (I'm so scared to
have them done!) but never a MRCP.
I gotta go. My wonderful twins came in awhile ago and are sleeping
in my bed, I need to shu them off to their own so I can get some
sleep. I'm so glad I have this fun toy to play with on these many,
many nights of sleeplessness.
Again, I hope you continue to feel better everyday, my friend.
Lots of Hugs, Linda (from Ohio)

Hi Linda!
Thanks for the hug. I have never seen an e mail hug. That's neat! I am
better today. I know it is a day to day thing. It just gets depressing
sometimes.
One good thing is that a new doctor looked at my old cat scans and found an
"obstruction" in my main pancreatic duct. ( I guess that is good?) He says
that this rules out gallbladder problems? I am to go in for an ERCP in the
next few weeks. I am afraid in that it might bring on pancreatitis or make
things worse for me. Oh well. The new doc. says that I may be one of the
minority who has idiopathic pancreatitis. Hmmm.
How are you doing? Hope you are having a good day today.
Love, Staci

Peg-
May God bless your son and you for all the support you give to him. I had
always had stomach problems. But doctors told my parents it was due to
stress (divorce ...) At 18, I finally went to my dad's doctor who first
diagnosed pancreatitis. I am 38 and have been in and out of hospitals, still
trying to hang on to a normal, extremely busy lifestyle. It is tough.
Doctors really do not know why I have it. I have had one inconclusive ERCP,
and am scheduling a second to see if there might be a cause to remedy.
Again, keep on plugging for your son. Know that we on this network are
praying for him and for you.
Staci (California)

Becky.....Poncho....Anna, How are you doing? Your posts made me
laugh out loud! That was very good. Sitting here all by myself, and
laughing! If anyone was window peeping........they would think I
lost it!! Thanks alot, my friends. I needed that.
Now, I have another question......please, anyone & everyone, if you
ever get sick of my questions, or any of my post, please let me know,
I really don't want to be a pain in the you-know-what. Anyways, my
question is.................Has anyone been told that their pancreas
has "burnt itself out" and the amylase & lipase counts won't be
elevated, ever? That is what I have been told by Dr. Lehman, and my
doc here in Ohio. Just wondering. I have been having really awful
pain and nausea & vomiting, and diareah (help me learn to spell that
word!) the last 6 days. Its not getting any better. I know I should
call my doctor, but you know. I have spend so many days in the
hospital the last 12 months. I hate to leave my girls again. Please,
any answers will be greatly appreciated. Thanks again for your
intelligence, advise and good ole' friendship.
Lots of hugs, Linda

Peg
We also have a specialist at Brigham & Women's. His name is David
Carr-Locke. He has been involved most of Joey's procedures at
Children's. I know I've heard of Peter Banks, maybe our doctor has
mentioned his name. I have a 14-year-old daughter and an 18-month-old
son who are both healthy. Has Brandan ever had to be on TPN? Does he
have a central line? Joey has a double-lumen port-o-cath which I take
care of myself. He got a line infection once when a nurse from a
home-health care company accessed him and since then, I won't let anyone
touch him. Has Cory had any trouble dealing with this? It's so
difficult for the siblings!
Suzanne

Hi Christine. I'm sorry to hear that your EUS showed chronic. I had
mine done at IU in Sept. I wasn't ready to hear "chronic". The Dr.
talked to my husband when I was still asleep, so I didn't even
understand until I called and had them read the report. My husband
used the word "suggestive of" which doesn't mean definite to me but I
guess it does to them. It is helpful to know what is wrong and why I
haven't gotten totally better, like my Drs. were expecting me to. I
have so many unanswered questions, some of which no one can answer.
It is hard to get handed a chronic illness. Family and friends don't
really understand, although mine are great.
I didn't have the block done. I've had it explained to me a couple
of times. I think that if it was really working, you would have some
relief. It is only a temporary thing, but if it works, I understand
that they can go back in and use something stronger. Call IU and
talk to someone. They are really good about that. I know that I put
off a call to my Dr. because I didn't want to impose and then I
talked to him last week and he helped me so much. Should have done
it sooner, of course, maybe he wouldn't have heard the desperation in
my voice. ha ha
I know that I felt like "now what?" after mine. Take care of
yourself. Love, dawn.

Becky,
I talked with Tammy also today she is down and how do you say that it
will get better for her she has been threw so much and nothing seems to help
but at least she is talking about it and that is a good sign, and as far as I
go I am not to sure here I am having alot of pain and from everyone else that
I have talked to they really didn't have much pain and you can always tell
the pancreatis pain and I still have some of that ok alot of that I don't
know if it caused attack for sure but I do have alot of pain I guess I will
be able to tell when the other pain goes away I just know that I hurt all
over...and very nauseated able to drink some but food and I aren't getting
along yet.. the doctor checked out my main duct and said he couldn't get the
needle in there cuz it was so small so that isn't a good sign since I had the
stent there to open it and doesn't seem to have worked.. sorry to ramble on..
but you asked for it...lol I hope things are better for you .. how are you
feeling?
Wishing you all a
pain free day Anna from Michigan

Lips ??? You sure lips ??? Lips huh ???
OK

*laff* Yes his lips! So he wouldn't be able to say such a horrible thing again! Men!!!! (no Offense to present company *S*)

Becky

Hi! I am so glad you are here. Although my heart goes out to you
and your family. Out of all of this, I am glad that I am the one
with the disease, because I couldn't deal with that helpless
feeling.
You will be in my prayers and I hope that things go well for you and
your dear son. Take care Peg.
Christine

In a message dated 1/18/01 4:34:37 PM Central Standard Time,
brwnbare9@... writes:

TTFN

i know i'm a little slow..............but what does TTFN stand for??
debbie (ark)

Diane,
You are on my list. I am hoping that this finds you a little
better. Take care of you!
Love ya,
Christine

In a message dated 1/18/01 3:22:14 PM Central Standard Time, mrsteep1@...
writes:

Peg,
I am so sorry that poor Branden has this terrible disease it isn't far
for adults but to have a child with it and have his childhood taken away
from always breaks my heart, I hope there is something found soon, It is a
mistery to me that they transplant hearts and repair them and can't take
care
of this diseaase.. you and your family are in my thoughts and prayers...

me too! since you've talked to Karyn - i know that you realize that you
will be able to find a lot of information and support here.
debbie s. (ark)

Hi Ilka, Christine, all
Karyn is still without her computer, and even though she has not had
this particular procedure done herself, she asked me to forward this
link for those who are interested in finding out more information
about it. There are quite a few folks on this list who have had the
procedure done as well, to varying degrees of success, and they no
doubt will be sharing their experiences soon. The one thing that
most folks seem to have in common is that the "block", which is
really
a procedure to deaden the nerve that carries the "pain sensor"
information from the area around the pancreas to the brain, is
usually
a temporary measure. The body has a robust mechanism of
rejeuvenating
itself, and the nerve cells seem to grow back with time.
I cut and pasted this link from the "LINKS" section of the egroups
web
page. There are quite a number of other links on the site that those
of you who haven't visited the web page for a while may want to take
a
look at sometime.
Anyway, here's the link for the celiac plexus block procedure.
http://www.hopkins-gi.org/subspecialties/chronic/therapy/nerve.htm
Cheers,
--Tull

In a message dated 1/18/01 4:32:02 PM Eastern Standard Time,
briffle@... writes:

But I am afraid I would have to rip his lips off for that!

Lips ??? You sure lips ??? Lips huh ???
OK

Hi Henry,
No, not all my docs have been uncaring. The doc at U of M is totally
tunnel vision and she doesn't hear me. But she is nice enough. I
agree. The students are awesome. Although Indiana University is
totally the best I have experienced. Period. I am wondering if I
should quit U of M and use IU, but the distance is an issue. I
mean, I don't mind driving, after all, it is my health, but I worry
about crisis management. So I am in the middle.
I hope and pray for Anna as well. I hope this is the end of the line
for her, but like you said, sometimes it is just the beginning. For
me, it was just the beginning. I never had a gall bladder problem
one till I had pancreatitis. When they tookk out the gallbladder,
all hell broke loose. So, I am a little concerned. But we will just
pray that for her it will be different!
I didn't have a good day today. I simply cannot get the digestive
process going in any way without starting some problem-nausea or pain
or both. It doesn't seem to matter WHAT I eat. It matters THAT I
eat. Cuz it matters not what I put into the system, once I put
something in, I pay. So we will see.
How are you feeling? Better? How is that fabulous job of yours? I
am so jealous :-} I hope you are doing better each day. Talk to you
soon,
Christine

So, today
after my shower I decided I would blow-dry my hair, and I got a hold
of Amy's 2 curling irons and went to work. I thought I did a half
way decent job. I came out of the bathroom and ask my
husband, "Well, what do you think?" He laughed at me!! He
said, "Now all you need to do is get rid of the gray! ha ha ha ha".
I was so hurt!

Linda,

I am usually pretty calm and mild mannered! But I am afraid I would have to rip his lips off for that!
What a turd!!!!
You look beautiful! Hang in there!

*hugs* Becky

THANK YOU TO ALL...you are all so special to me, especially to find
people that understand what it is we are going through. I sent an
email to tull(didnt realize I was sending it to the email address but
I am new at this...) to thank him and Karyn and find out more about
the teen sight. But I just wanted to thank you all again so many to
mention from me and mine to you and yours thank you so very
much..: ) Suzanne I wanted to tell you that yes my son has also been
diagnosed with ideopathic chronic pancreatitis, and yes right now
they dont know the cause either but they have found a block or
something in Brandans main duct that they want to go back in and
explore. I always tell Brandan that in this world as bad as it is
there are always people out there alot worse of than us. But for
anyone be it adult or child this is a horrific illness. He sees a
Dr. Harland Winter a pediatric specialist from Mass General and is
also seeing an adult specialist Dr. Peter
Banks from Brigham and Womens hospital. I have been told the
hospitals in Boston pretty much work together and that Dr. Winter is
also affilitated with Childrens in Boston. I have another son Cory
who is 17, and Brandan is my baby he is 14. My eldest son is fine, he
has never had any signs of the illness that Brandan has. It truly is
a baffling illness he has no allergies to foods that we are aware of
but fat ( cheese,milk,icecream etc.) especially has always seemed to
flare his condition up. Thanks again to all, Keep
smiling..TTFN..Peg...: )

Anna,

*hugs* good for you! I am so happy for you! Talked with Tam today and she was asking about you! I told her you were home. She is very down today. We talked for a while!
So how are you? what's the prognosis?

*hugs* Becky

Hi Peg:
My name is Linda. And I am just so sad to hear the battle you and
your son are facing. I have been feeling so sorry for myself lately,
and when I read your post, my heart just broke. I have 3 daughters,
13 & 11 y/o twins. And I don't know how I would handle this awful
illness if it were one of them. I guess I'm lucky in that
perspective that it is me. Please, let me know what is going on with
your son. I hate this illness with a passion, but when a child has
it, I even hate it more. Just remember, we are here for you. And I
see someone posted a teen support group, I hope that helps.
You both are in my thoughts & prayers.
Lots of Hugs, Linda (from Ohio)

Hi Peg, all
Just a quick note about a separate support group for young people
suffering with and/or affected by this disease. Karyn reminded me
last night that she and her daughter Emily have in fact already
created such a group on egroups called PancreatitisTeenSupportNetwork.
At the time, Emily was looking for a place to vent some of HER
emotions, talk about what HER life was like as the teenaged daughter
of a mother with pancreatitis. But it was "chartered" to be inclusive
of young people WITH the condition as well. There never were too many
who signed up for it, but now it seems like there may well be enough
interest to "activate" it again. Karyn would be glad to turn the
"moderator" duties over to Brandon if he would like to take that on.
Emily is a "new mother" herself now, and just hasn't had time to keep
up with it.
Peg, talk this over with Brandon, and get back with either myself
or Karyn (hopefully she'll have her computer back by the weekend).
Cheers,
--Tull

In a message dated 1/18/01 9:29:48 AM Eastern Standard Time,
brwnbare9@... writes:

Karyn suggested start a group for children
with this illness so that perhaps they can talk and gain support and
understanding from each others experiences

Hi Peg,
Every time I hear of anyone having this disease, I feel their pain but it
really doesn't seem fair to hear of another child having to go through this
illness. As a mother, my heart goes out to you and hope your son gets better
soon. Starting a support group for children sounds like a great idea! Until
then, glad to have you with us but sorry your son has Chronic Pancreatitis.
I will keep you and your son in my prayers.
Hugs & Prayers
Carole

Hello,
First I would like to introduce myself, my name is Peg. I have been
reading alot of your emails and my heart goes out to all of you. I
am so very fortunate to have found this site. Truly I thought that I
was alone, there are not alot of resources for people with this
horrific illness especially children. But after emailing Karyn I have
found that we are not alone. I am not speaking for only myself I am
speaking for my son. His name is Brandan he is 14, he I believe has
always had this illness but until recently there was no medical
diagnosis. I have listened to you all for sometime now, and what has
been discussed and what has gone on with your conditions is like
dejavu. I would like to tell you a little about our experiences
being that I know much more lies ahead for us. I would also like to
perhaps find a group or as Karyn suggested start a group for children
with this illness so that perhaps they can talk and gain support and
understanding from each others experiences. I think the worst of
this is that I as a mom feel so helpless like there is no where to
turn and no one to help, so much like alot of you. Here is our story:
My son Brandan since birth has always had trouble with eatting, I was
told in his early years it was what he ate, it was lactose
intolerance, its just growing pains he will grow out of it????...It
wasnt until 4 years ago now that he had his first pancreas attack.
Well after 6 days in the hospital he went home, enzymes returned to
normal and the doctors told us it was viral. Would probably never
happen again. But he continued to have pain, although his enzymes
were normal (which we later found out, they can be but one can still
be in an attack)so we again tried building his diet up slowly. My
son has a very high tolerance to a pain, and by looking at him he
looks like a very healthy child? Well the stomach aches continued to
a point where at night he would ask me "WHY ME MOM" and "WHY WONT IT
GO AWAY" among other questions that I had no answers for and neither
did the doctors. On May 24,2000,what was suppose to be our first
vacation that we have all waited a very long time for to disney our
dream, turned into a nightmare. Upon leaving for our trip my son was
at the pediatrian again. Complaining of all things a stomach ache,
being we were leaving I wanted to make sure he was ok. Well after
seeing the dr., he said it seemed like he pulled some muscles and he
also had strep throat so figuring he would be fine we headed to the
airport for our vacation, I know my son wasnt well but I knew too how
much this meant to all of us, and my son too wanted so bad to be well.
Well upon arrival he was even worse, as night wore on we figured he
would feel better in the morning but it wasnt to be. The doctor in
Orlando was convinced it was scarlet fever, due to the fact of the
strep. I told him my son had a history of pancreatitis and that his
doctor wanted his enzymes checked and he just looked at me and said,"
I really dont believe that is the case I think he will be fine, truly
I think it is scarlet fever, but I will check" he truly believed that
this couldnt be. But upon return with the tests his eyes met mine
and I knew right there that this was the beginning to a nightmare
that I truly wanted someone to wake me up from. He just looked at me
shook his head and said "I cant believe this I have had adults in
here with enzymes levels well below what your son has and they are on
the floor asking for morphine." as he looked at my son lying in the
bed. My sons lipase was 55,000 which we all know is not good. Well
to make this long story short, After 6 days in Orlando childrens
hospital 3 of which were spent in ICU, we flew home, Brandan with a
double picc line and high on pain killers we made our way to Hasbro
childrens hospital in Rhode Island. He was there for awhile, but has
since been in and out of Boston hospitals, He has had 4 ERCPS,
catscans, ultrasounds, spinctotomy, picc lines, GI tubes,ETC ETC
ETC...He has been diagnosed with Chronic Pancreatitis, with a partial
pancreas divisum? He lives each day with fentenyl patches to control
the pain and percocet as needed. We are now trying a vitamin
cocktail in hopes it might help? But his dr. wants to do yet another
ERCP to see if they can do something with the large duct in his
pancreas. For now we are holding out praying that the vitamins might
work, and giving him time to accept that he might have to go ahead
with this procedure yet again. He is apprehensive because everytime
they do one he goes into an attack worse than any before. I am so
sorry this is as long as it is but I wanted you to know a little
about us. What I have learned from this, in all the years I have
been following it, is that no one is quite sure of what to do, but I
know in my heart that there is an answer somewhere and all we can do
is take it oneday at a time. Thank you for listening, My thoughts
and prayers are with you all. Keep smiling..TTFN...Peg Bates

Hello!
Maybe my question might sound odd to those of you that are familiar
with this therapy but I never came around the term "celiac block"
that was in one of the last posted mails in our group. I bet it is
something we have in Germany, too and that I maybe know(I mean the
German word for it). Can somebody explain to me what it does and why
it is given so I can figure out what it is?
Thanks.
Ilka

Anna.........I'm so proud of you!! You did it!! I'm glad you are
feeling some better. You are gonna be sore though!! Great job on
your part, I knew you could do it!!
Diana........I'm so sorry to hear your pain level is up. Please,
take care of you, and hang in there, I'm praying for you.
Tammy.........I hope you continue to improve and are back on your
feet really soon.
And everyone else......I sure do hope you all had a decent day, and
tomorrow will be alitte better place for us all...
Remember, You all are in my thoughts and prayers. Thanks for always
being here for me.
Lots of Hugs, Linda (from Ohio)

In a message dated 1/17/01 7:43:37 PM Central Standard Time,
dhollis062@... writes:

, but the pain goes to about an 8 when I'm up moving around.
Pleas pray for me!!!

will do, Diane. i think about all of you each and every day. hang in there.
your friend, debbie s. (ark)

Becky she got moved last night so the number is different now it is
517-894-3372 I forgot to tell you that last night sorry.. I made it through
the surgery and am not feeling to bad.. thanks for all the support
Wishing you all a
pain free day Anna from Michigan

I will do that for you but go ahead and call her she needs to talk with
us who have this too so that she knows she isn't crazy about her
feelings,
she told me she had wished I would have just came over and made her talk
I am
glad that I just went I know it helped and I know she would love to hear
from
you.. the number is 517-894-3369.. thanks for your prayers for me to ..
you
are in my also and I hope you are feeling some what better.. what has
been
going on ??
I have tried to call Tam a few times using this # and got no answer!
is this her home #? Does anyone have the hospital #.
Thanks!!
Becky

Hi all,
I have been unable to be online lately. I have been in bed and on the couch
only. Don't know if it was a virus or the panc kicking up again. Nausea sems
to be settling, but the pain goes to about an 8 when I'm up moving around.
Pleas pray for me!!!
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Dear Christine,
Thank you so very much for your reply! I haven't seen that movie: "The
Doctor," but would love to see it after hearing your description. I
totally agree with you concerning arrogant doctors. It's sad that people
who's main goal is to make money get into this helping profession. It is
hard on a patient to have to go through an illness and have to additionally
worry about interacting with an unfeeling, and arrogant doctor. Have you had
this problem for the entire time that you've been sick, or has it been on
and off again? In my case, it has been the problem of being treated in a
teaching hospital. It's an excellent facility, and they have a special
program for pancreatic/G.I. problems, but the resident doctors can make your
stay miserable if your regular doctor is out of town giving a talk at some
Pancreatic Symposium for doctors. I tend to personally like the medical
students. Most of them are nice, and humble, and take the time to ask
thoughtful questions, and will really listen to you. I've had many pleasant
experiences in the hospital talking, and interacting with the med. students.
It's hard to believe that the residents who are so arrogant were once med.
students. I just don't know anymore. I only pray that I stay out of the
hospital as much as possible and expect the worst, and feel happy when I'm
treated with respect at the hospital. How have you been feeling lately? I
hope that you are feeling reasonably well. Today Anna has her surgery to
remove her gallbladder. I really hope and pray that this will be the end of
her pancreatic problems. I don't know, some folks have had there gallbladder
removed and done great, and others I've known have said that it was the
beginning of their serious health problems. Oh well, I don't know. Just be
well, and take care, and it's always so good to hear from you my friend.
Your Pancreas Pal,
Henry

Hello Rich,
I'm not sure why you are asking...but you asked who is alone. I am one of
those people. My family lives about 60 miles away...but don't jump to
conclusions about that. They very rarely come here, even when I'm in the
hospital. I think they think I am not really that sick,so why make a fuss?
My mom still wants me to come visit her for holidays etc. Though sometimes
when I am really not filling well, I do not make good company, just having
someone here with me makes a big difference. It can be scary when you are
really sick to be by yourself. I'm not sure if that's where you were headed
or not...but there it is!
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 1/17/01 7:01:09 PM Eastern Standard Time,
sunflower6668@... writes:

Hi all,
I will post this and then try to catch up on some of the posts. I
went to IU yesterday and they did an endoscopic ultrasound. The doc
said if he found anything that looked like chronic pancreatitis, he
would give me the celiac block right then. Well, that took me off
guard, because Dr. Sherman said that would have to wait. So,
needless to say, he gave me the block. And now I am wondering. What
does it do for you? Does it really last? Can I really start
eating? I hurt more today than I have in a long time. Is that
because they were in there poking around? Will it end, or does it
mean that the block isn't working. I would have done some research,
but I thought I had time. They really took me by surprise. Henry,
you probably can fill me in on all this stuff. I really wasn't
wanting to hear the chronic diagnosis, but I was kind of expecting
it, since U of M said the same thing. I need to call IU to talk to
them about the next step (appt, or what?). Well, I will be happy to
hear from you guys. Thanks! You are a super bunch!
Be well,
Christine

Sorry Christine, I don't know anything about blocks. Wish I could be of some
help for you but someone in this group will be helpful. Shirley

Hi, Shirley.. From what I understand about why Tammy is back in is that she
was very dehydrated... had lost (I think she said) 35 pounds... I am sorry
if noone knew that that is why I put in my earlier post that she had gained
back 8. Sorry for any confusion..
As far as Anna goes.. I just heard from her and she is home now.. Feeling
ok.. She said the pain she has now is nothing like the pain she was having
going in.. So we gotta hope for her it worked.
Have as a great a night as possible all..
Leon

It seems like all I do is come on here
Dear Linda,
I will tell you what is wrong with you. :-} You are at a place
right now where you need the support we have to offer. When it is
time for you to give support (and you already do that, by the way)
then you can do it then. But for now, we are here for you. So don't
sweat it. That's what it's all about. Give and take.
Take care Linda,
Christine

Hello Linda,
Can you feel this great big hug from me? I hope so, because you are
getting one! Please take care of yourself and don't be a martyr. If
you need to go to er, then by all means go. Please don't try to stay
home one minute longer than you know in your heart you should.
Please.
Christine

Hi everyone, I missed something. Why is Tammy in the hospital again? I know
she has been very depressed but is there something else wrong? I hope not
another blood infection. Poor Tam and family.