To

[Guest guest]

Congratulations on your date ..............maybe that won't be the only date

you'll be having!!!!!!!!!!!!!!!!!Love your humor. Its good medicine.

Debbie In Colorado

[Guest guest]

Your ceremony idea is great. When I started to think about it, I realized

how much of life I watch instead of live. Many times I don't go or do what I

want to because of being so self concious. My list will be long....I may

start now. Burning the paper is a wonderful symbol that old things have

passed away and all things have become new! Gods best to you on your dancing

day.

Most Sincerely,

Debbie Lawson,

234/40bmi

pre-op

[Guest guest]

Thanks Debbie,

I actually took the idea of a having some kind of ceremony the night

before surgery from another pre-op. She burnt old fat clothes. But

when I started thinking, like you, about how much my life has been

affected by my weight I decided I needed to focus on that.

Sooooo....here we go through the looking glass. I'm planning on

leaving the old behind and creating a new one, with some help

from Dr. R!!

Dancing in 5 days!!!

MGB 40

> Your ceremony idea is great. When I started to think about it, I

realized

> how much of life I watch instead of live. Many times I don't go or

do what I

> want to because of being so self concious. My list will be

long....I may

> start now. Burning the paper is a wonderful symbol that old things

have

> passed away and all things have become new! Gods best to you on

your dancing

> day.

> Most Sincerely,

> Debbie Lawson,

> 234/40bmi

> pre-op

[Guest guest]

,

Thanks for sharing that with us. It made me feel so wonderful inside when I

read your results. What an inspiration you are to me, and I'm sure to many

others on this list!!!

Thanks for giving us yet another reason to keep the faith!!

Hugs,

Pam in MD

BPD/DS - July 9, 2001

Dr. Vanguri

[Guest guest]

Thats wonderful Tammy, sometimes just taking positive steps forward

can alleviate so much of the frustration thats comes with this

condition. Make sure they send it to Rob Hawes MD. He's Dr.

Cotton's right hand man and a really nice guy. Let me know when

they send it and I will send a little note to Hawes to keep his eyes

open.

You hit that right on the head with the elusive nature of this

condition. Sometimes I can eat toast and sometimes I cant. I have

not been doing very well at all. I believe my peg tube is infected

and my son has gratiously given me his bad cold. So pile all that

on top of the other joys; I am a real mess today. Hopefully it will

be short lived.

Good luck with the doc tomorrow. Sometimes I would take notes with

me to make sure I dont forget anything. Last time I saw my doc I

forgot a lot of what I wanted to discuss, and I 'm a nurse, trained

to know what to say to a doc; must be the affect of all the

drugs!..lol

I'm glad your coming to MUSC, it really bothered me that the doc up

there had you all scoped and didn't do manometry. That just does

not make one bit of sense to me.

Let me know how it goes.

Warmly,

> OK. I made the appointment to see my family doc tomorrow. I'll

talk

> to him about faxing my stuff to MUSC and also about getting my

> triglycerides checked. I also have to get something for the pain.

He

> gave me davocet and it isn't even touching it. The pain is so

> elusive. On Sunday, I had very little pain, and now today it is

> pretty severe. Hope you're doing well today. Tammy

[Guest guest]

Glad your pain meds are working. I too itch like crazy when I'm on

pain meds...nurses laugh when I come into the hospital with my back

scratcher..and it doesn't get a chance to leave my hand *LOL*..I

sleep with it in my hand resting on my belly *L* One nurse thought

it strange that I said it was the pain meds itching (dilaudid) yet

it is in the Morphine range, and I remember seeing my sister react

to Morphine after her surgery and she was scratching the daylights

out of her skin. She didn't realise it, but they had to put hospital

mittens on her the scratching was so bad. A researcher came into the

room whilst I was there and woke her up to do some tests. They were

resulting the differences between Morphine and Pethadine.

It took my sister 18 minutes to connect 10 dots numbered from one to

10, and the itching, the falling to sleep and nausea. I was able to

give her some insight to the symptoms of Pethadine because that was

the pain medicine my surgeon had me on when I had the same surgery.

It worked wonders for the pain, but everytime I pushed the button,

I'd get violently sick with it..but that might have just been me. I

still get nauseated with the Dilaudid, and only Phenergen seems to

help control that.

I hold Dr Lehman in high esteem when it comes to communication with

his patients. I have only had 4 doctors willing to talk to me over

the phone. He was one of them, Dr Cotton, and my now surgeon and

another GI I used to see. It really makes a difference being able to

talk or email them directly instead of having to go through their

personal assistants or voicemails.

When I had my stent or stents placed by Dr Lehman, the nurse who

came to check on me when I was admitted as I had an attack

immediately after, was kind enough to go and retrieve the

information on what was done when I asked her. She came back and

told me that I had extreme pressure around my pancreatic duct, it

took Dr Lehman 2 hours to find the duct, he put in 2 stents and the

whole procedure took 3 1/2 hours.

Yet before I left, his partner came in to discharge me, as Dr Lehman

had had to leave immediately after my procedure for a conference,

and told me that the stent should pass within a week. I corrected

him saying I had 2 stents placed, but he said no, Dr Lehman's nurse

practitioner looked it up for me also and said I had two...no one

stent sorry...and when I spoke directly with Dr Lehman, he was

positive he only put in one stent.

A week later I had a KUD xray because the attack started again, and

was told that nothing was showing so it had passed through my

system, but 18 months later after many more stents going in and out

and all accounted for because each procedure they would remove one

and then place another one a couple of weeks later, they found a

stent dislodged further into my pancreas. It only makes sense to me

now that perhaps I did have 2 stents placed, and they forgot about

that one..hence it was helping to cause further attacks.

[Guest guest]

Dear ,

You GO girl, AGAIN!! I'm so happy for you that you've gotten the response

you wished for from Dr. Sutherland. And that you got your first plane ride.

My husband is an airline pilot, , I could have told you how much fun it

can be. The apple juice affair WASN'T fun, though, but what I might suggest

is that you take some car sickness tablets for the next trip, just in case.

There's also a patch that you can wear behind your ear, it's about the size of

a dime, that lasts for three days and will stop any signs of travel sickness. I

have to get them for my grandson Austin, who's 12. He LOVES to fly, but

apparently the anxiety and excitement he gets about flying causes him to get

sick, so our doctor prescribed those patches for him to use, and the work

perfectly. You might ask your mom to talk to your doctor about them if you

are going to be flying back out to Minnesota next month.

No doubt that you'll be anxious and excited then, too! This would just make

the trip more enjoyable for you if you didn't have to worry about what your

stomach was doing.

It does sound like the Callalily was a sign. I think it means that your

grandmother is looking out for you, , isn't that special? Please keep us

up to date with all your news and let us know what the official date is.

Meanwhile, enjoy the rest of your trip and don't drink any more apple juice!

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All advice and comments are personal opinion only, and should not be

substituted for professional medical consultation.

[Guest guest]

Thanks Tammy. Thats a good question, I dont know. I think I need

to resolve myself that I will never have back the life I once had.

But can I go back to work, eat a cheeseburger and have sex with out

pain, diahrrea, nausea and fatigue from malnutrition. I think I

would be happy. I never realized how fatigued I was from the

malnurishment untl I started the tube feedings and actually absorbed

it. Oh yeah and I want the peg tube out and a tummy tuck too.

Seriously, I am scared to death and hope to God I am not making

another mistake. Once he cuts that panc there is no turning back.

It will either work or wont.

have you talked with your doc about going to MUSC yet. Have they

sent your chart. Let me know now and I will send Hawes a note with

a heads up for you. How have you been feeling? How is work going?

I had a big rush of energy this morning, took a long walk with my

dogs throwing the frisbee, then cleaned up the house, had the stereo

cranked up and was dancing around, over did it a little and am

feeling pretty damn sore, but it was fun, and felt good to work up a

sweat. I even cooked a real nice dinner for the family. I think I

will be laying down as soon as the kids dad gets home and let him

serve, I'm quite achey. It was worth it; get my heart pumping.

Take care Tammy and have a Blessed Easter,

> , that's wonderful news. Are you pleased with the

decision?

> I hope everything works out and you can get your life back. Take

> Care. Tammy

[Guest guest]

Hey there..don't get worried about me Chrissy, I'm doing okay. Very

sore but my pain meds are helping to cope with that. Yesterday the

pain was on the left, but today my right side is agony..guess that's

my fallopian tubes taking turns to see which one can hurt me the

most. The doc gave me Lortab script for pain, but the Percocet helps

with the pain more for me. I still have a few of them left over from

my surgery in January. Was hoping to go without them today, but I

can't get up from my chair without walking bent over so guess will

have to try for tomorrow.

I will be thinking of you tomorrow, and especially at 1pm. I shall

say a little prayer for you right on the dot of 1. I know that you

will sail through this surgery with flying colours. If it is okay

with you, I shall find your room at the hospital and give you a call

a few days after your op to check up on you *s*

I'm going to look up reasons why my platelets might have dropped so

low the other day. I woke up this morning and my nose had been

bleeding, not bad, but the only time I've ever suffered a bleeding

nose was when I fell and landed on it..that really hurt *L* I don't

know if it has something to do with my platelets, or if they put a

NG tube in during my ligation.

Look ahead of this surgery to a time without pain and having some

semblance of normalcy be returned to you. I wish nothing but the

best outcome for you, as that is what I wish for all of my friends...

Take care, and warmest wishes to you....and if you want to recover

in a mountain retreat with someone else to wait on you hand and

foot, you can spend some time at my place *L*

.

[Guest guest]

Wow a Mountain Resort, I can handle that!! Can I have the big good

lookin Massuse named Swven...lol and hot tub at 3 sharp. They would

not have needed to used an ng tube in the or unless you started to

regergitate anything from your stomach. Fairly good change that

didn't happen since you went home. They probably had oxgen via a

nasal cannula and they can blow a steady stream right in the nose

and can irritate those tiny cappillaries, they dry out and pop.

Sounds more likely, especially if it is just a little blood. You

can call me at the room later in the week if you like.

Thanks for the thoughts,

Strange, I still dont feel so good about this, dont know why. Just

scared I guess.

Love,

Chrissy

> Hey there..don't get worried about me Chrissy, I'm doing okay.

Very

> sore but my pain meds are helping to cope with that. Yesterday the

> pain was on the left, but today my right side is agony..guess

that's

> my fallopian tubes taking turns to see which one can hurt me the

> most. The doc gave me Lortab script for pain, but the Percocet

helps

> with the pain more for me. I still have a few of them left over

from

> my surgery in January. Was hoping to go without them today, but I

> can't get up from my chair without walking bent over so guess will

> have to try for tomorrow.

>

> I will be thinking of you tomorrow, and especially at 1pm. I shall

> say a little prayer for you right on the dot of 1. I know that you

> will sail through this surgery with flying colours. If it is okay

> with you, I shall find your room at the hospital and give you a

call

> a few days after your op to check up on you *s*

>

> I'm going to look up reasons why my platelets might have dropped

so

> low the other day. I woke up this morning and my nose had been

> bleeding, not bad, but the only time I've ever suffered a bleeding

> nose was when I fell and landed on it..that really hurt *L* I

don't

> know if it has something to do with my platelets, or if they put a

> NG tube in during my ligation.

>

> Look ahead of this surgery to a time without pain and having some

> semblance of normalcy be returned to you. I wish nothing but the

> best outcome for you, as that is what I wish for all of my

friends...

>

> Take care, and warmest wishes to you....and if you want to recover

> in a mountain retreat with someone else to wait on you hand and

> foot, you can spend some time at my place *L*

>

> .

[Guest guest]

Thanks Tammy but doesn't the chicken broth bother your stomach? I

know it would mine...even the smallest intake of anything remotely

related to " meat " causes big time problems. He**, lately, anything

remotely related to anything other than bread products causes

problems as in my " experiment failed " email of last night. I had a

Weight Watchers Smart Ones frozen italian dinner consisting of only

angel hair pasta, some tomato sauce and zucchini and mushrooms.

Yep, in exactly the timeframe it takes (20-40 mins) I was in agony.

This is horrible......thanks I s'pose I could try rice anyway.

> Hey . I saw your post on your eating difficulties. You may

want

> to make a little rice substituting the water with chicken broth.

Rice

> is real easy to digest. Tammy

[Guest guest]

Hmmmm....that's interesting, I hope I get a better result than

that. They're still hemming and hawing in my opinion.....we told

the doc today that I'm losing pay, etc., not to mention that I'm in

daily pain and he basically says come see me next week......however,

he did mention ERCP and possibly ERCP/w/manometry to my husband.

So, if that's the case (I wasn't present, and hubby THINKS that what

he said) then at least it sounds like he's headed in the right

direction.....ERCP w/manometry is for Sphincter of Oddi dysfunction

I think...and I bet (if I was a betting woman that is!) that that is

what my problem is.

thanks again

> I took Levbid last fall for about a month. It knocked me for loop.

> It's part valium, part anti-spasmodic. It made calm as heck, but

> didn't help with anything else. Tammy

[Guest guest]

Hi ,

I saw you were asking for info about TP/ICT.

I had a TP - but not ICT back in August, 2000 at The Royal Liverpool

Hospital, UK.

I had 48 hours in the ICU and a few days in the HDU. I spent a total of 5

weeks in hospital, but, as well as recovering from the surgery i had to learn to

manage my diabetes. It isn't really possible to say how long you would be in

hospital, as it depends on the exact procedure you have, and how you progress.

I went back to work 15 weeks after my surgery. I work 30 hours / week as a

qualified nurse, caring for sick children, and i work shifts, inclduing nights.

Since having the surgery, my quality of life is much improved, and i am

really glad that i had it done. Even with the diabetes, that is still preferable

to

coping with the pain of CP.

If i can help with any more info, please contact me. Good luck with your

decision. I would recommend obtaining as much info as you can to help you decide

if the surgery is right for you.

Take care.

Sue (UK)

[Guest guest]

,

The last I knew, Keri's email address was: jandcsmomma@.... I

don't have a telephone #.

I hope you can still reach her at that address. She was doing fine after her

TP/ICT and too busy living life to the fullest last we heard, and that, of

course,

was wonderful news to hear. If you do get in touch with her, please send her

my love and tell her we all miss her.

, I hope that you're doing the same as Keri.....

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All advice or comments are based on personal experience or opinion,

and should not be substituted for consultation with a medical professional.

> Can anyone give me Keri Becks email or phone number. We need to get

ahold of her. If so that would be great. If you could email me directly with it

please. Love,

[Guest guest]

Oh, do I ever understand what you mean about the questions about age

and size. I've lived it for almost 17 years now - and am still

going through it. As you've probably read, Max is now 5'3 " and you

would think the questions and comments would end, but they don't.

Even my own students commented on his size - and they are in grades

1-3! I took Max to school with me one day and they could not

believe he was 16 (will be 17 on July 2). They insisted he was 10.

Max took it all in stride. I just told them that he was lucky to

look young for his age, that he would appreciate it when he is old

like I am. They laughed.

When Max was younger and could not speak up for himself, I would

just tell people that he had a growth disorder called RSS. Often

that led to other questions, but I would just try to keep it to the

fact that he has trouble growing. I hate nosy people.

Off topic, I have never been to Hilton Head, but we vacation every

summer in Ocean Isle Beach, NC, almost on the SC border and we

always drive down to ton. My husband used to live there and

we are in love with that city. I hope to make it to HH someday.

It's a trip my husband and I will take when our kids are on their

own.

Jodi Z