Can't Take Much More...

[Guest guest]

Here it is, 4:00AM and I'm still up and in excrutiating pain. I am

so sick and tired of feeling this way I don't know what to do. I've

tried all of my " tricks " that I've had some success with when feeling

poorly but none of them seem to be working for me lately. My weight

has been steadily dropping too and, I'm told, I look terrible now

with my bones protruding outward. Even my rib cage is now visible

and, to make matters worse, I cannot eat anything without incurring

more pain and discomfort which makes me shun food that much more.

Fortunately, I haven't begun to vomit this

time like I usually do when the pain is this intense and am praying

that I won't as time progresses.

I don't know how much more of this I can put up with, to be honest.

My pancreas specialist is at a lost as to what to offer me at this

stage of my illness since I've had just about every procedure/surgery

available to chronic pancreatitis sufferers. The only viable option

still available to me now is to have that total pancreaectomy/Islet

cell

transplant surgery offered by Dr Sutherland up in Minnesota.

However, I am deadly

afraid of having any more surgeries since, after each one, I tend to

come out of it worse off than I was prior to having the surgery. My

doctor even tells me he has actively sought help from other

specialist but no one is willing to touch my case since they have

nothing better to offer me. Even though I am on 100mg of Zoloft, I

am still so depressed it is difficult for me to deal with anyone or

anything. My concentration is poor now as I'm either to tired due to

a lack of sleep or from the amount of pain I am undergoing.

I hate to whine like this, but I have nowhere else to turn to since

I've just about alienated all of my family members and most of my

former friends. All I have now is you guys so please bear with my

whining for just a bit. I don't know what I would do if I finally

were rejected by the Group too.

One question, does anyone else in the Group have trouble sleeping in

a reclining position? I haven't been able to lie down and sleep

since 1997 when I had my Whipple surgery. Since then, I have been

forced to sleep sitting upright in a chair; not the most comfortable

way to try and sustain any sleep. My life is literally the pits with

no hope of improvement. However, whenever I bring this up to my

doctor, he reminds me of how fortunate I am to still be alive and

cancer free as most people who have undergone what I have had to

undergo are no longer alive to complain. To me, this is not a

benefit

and I have told him so on many occasions. I have to constantly

remind him that I am not after longevity, but am seeking some form of

comfort level. Like I tell him, I am not interested in quantity of

life, just quality of life. Right now I feel I have neither...

Andre'

[Guest guest]

Andre'

I'd be making an appointment to see Dr Sutherland as soon as you

can. It appears to me that if other specialists are at a loss as to

how to help you next, then Dr Sutherland is the next step.

If you tell him about the outcome of all your other surgeries, he

might be able to allay your fears about the outcome of the TP/ICT.

I am by no means in your footsteps, and am not trying to belittle

your anguish, but I would try and make every effort to exhaust all

avenues, and then try and find new ones to find someone who could

offer me quality of life.

Is Zoloft the best medication for depression? I've heard of some but

not had to use them. If there are others that are as good, would it

be worth switching to see if they can help better than the zoloft?

I had to sleep sitting up for a couple of months..unable to lay down

due to the pain, and found it hard to get any decent rest, and can't

imagine having to do it for as long as you have had to.

My thoughts are perhaps you can't be any worse after the TP than

what you have at the moment, and a chance to help would be worth a

shot...

Hang in there, and I hope you find some relief soon.

[Guest guest]

Andre: Sooo sorry to hear that you're in so much pain. I'm not

having a good day myself....and after only 5 months or so, the docs

are getting a little finicky about giving me pain meds. I'm sure

you've already " been there, done that. " I'm sure this group would

never reject you Andre. This is awful disease and I can totally

relate to the " quality of life " vs the " quantity of life " thing. If

you don't mind me asking what sort of pain meds are you on? So far,

they've given me Darvocet (which is barely cutting - I gotta tell

you), something called Levbid (which is an anti-spasmodic), Creon

enzymes, and phergan for the nausea. It BARELY wards it off on a

bad day. I've taken to not eating lately as well because it doesn't

seem to matter what I eat. Well, this message isn't about me --

it's to let you know that you will ALWAYS have support here. This

group is the BEST!!

Lots of prayers coming your way

> Here it is, 4:00AM and I'm still up and in excrutiating pain. I

am

> so sick and tired of feeling this way I don't know what to do.

I've

> tried all of my " tricks " that I've had some success with when

feeling

> poorly but none of them seem to be working for me lately. My

weight

> has been steadily dropping too and, I'm told, I look terrible now

> with my bones protruding outward. Even my rib cage is now visible

> and, to make matters worse, I cannot eat anything without

incurring

> more pain and discomfort which makes me shun food that much more.

> Fortunately, I haven't begun to vomit this

> time like I usually do when the pain is this intense and am

praying

> that I won't as time progresses.

> I don't know how much more of this I can put up with, to be

honest.

> My pancreas specialist is at a lost as to what to offer me at this

> stage of my illness since I've had just about every

procedure/surgery

> available to chronic pancreatitis sufferers. The only viable

option

> still available to me now is to have that total

pancreaectomy/Islet

> cell

> transplant surgery offered by Dr Sutherland up in Minnesota.

> However, I am deadly

> afraid of having any more surgeries since, after each one, I tend

to

> come out of it worse off than I was prior to having the surgery.

My

> doctor even tells me he has actively sought help from other

> specialist but no one is willing to touch my case since they have

> nothing better to offer me. Even though I am on 100mg of Zoloft,

I

> am still so depressed it is difficult for me to deal with anyone

or

> anything. My concentration is poor now as I'm either to tired due

to

> a lack of sleep or from the amount of pain I am undergoing.

> I hate to whine like this, but I have nowhere else to turn to

since

> I've just about alienated all of my family members and most of my

> former friends. All I have now is you guys so please bear with my

> whining for just a bit. I don't know what I would do if I finally

> were rejected by the Group too.

> One question, does anyone else in the Group have trouble sleeping

in

> a reclining position? I haven't been able to lie down and sleep

> since 1997 when I had my Whipple surgery. Since then, I have been

> forced to sleep sitting upright in a chair; not the most

comfortable

> way to try and sustain any sleep. My life is literally the pits

with

> no hope of improvement. However, whenever I bring this up to my

> doctor, he reminds me of how fortunate I am to still be alive and

> cancer free as most people who have undergone what I have had to

> undergo are no longer alive to complain. To me, this is not a

> benefit

> and I have told him so on many occasions. I have to constantly

> remind him that I am not after longevity, but am seeking some form

of

> comfort level. Like I tell him, I am not interested in quantity

of

> life, just quality of life. Right now I feel I have neither...

>

> Andre'

[Guest guest]

> Andre'

>

> I'd be making an appointment to see Dr Sutherland as soon as you

> can. It appears to me that if other specialists are at a loss as to

> how to help you next, then Dr Sutherland is the next step.

>

> If you tell him about the outcome of all your other surgeries, he

> might be able to allay your fears about the outcome of the TP/ICT.

>

> I am by no means in your footsteps, and am not trying to belittle

> your anguish, but I would try and make every effort to exhaust all

> avenues, and then try and find new ones to find someone who could

> offer me quality of life.

>

> Is Zoloft the best medication for depression? I've heard of some

but

> not had to use them. If there are others that are as good, would it

> be worth switching to see if they can help better than the zoloft?

>

> I had to sleep sitting up for a couple of months..unable to lay

down

> due to the pain, and found it hard to get any decent rest, and

can't

> imagine having to do it for as long as you have had to.

>

> My thoughts are perhaps you can't be any worse after the TP than

> what you have at the moment, and a chance to help would be worth a

> shot...

>

> Hang in there, and I hope you find some relief soon.

>

>

At times I feel the same way as you do, what do I have to lose?

However, whenever I bring this up to my pancreas doc, he keeps

telling me " we are not at this point yet as there are still things

yet we can try " . However, the only things he has suggested of late

has

to do with trying to determine whether or not I am diabetic so that

he can send me to an Endocrinologist for this next stage of my

treatment. Lately, be has been trying to get me to have a glucose

tolerance test performed but I put a stop to this. Like I told him,

while diabetes is a serious concern of mine, currently I just want to

get a handle on the pain I seem to constantly be in and also be able

to eat food once more instead of subisting on Ensure primarily. It

also would be great if I could once more sleep lying down like a

human being instead of always being forced to sleep sitting upright

in a chair. My kids have begun calling me " the Elephant Man " since

he too could not lie down to sleep or he would smother, as he

eventually did.

As for the depression and my Zoloft, I really don't know whether or

not it is the best that they can offer since I'm not much for those

types of medications. Currently I am taking 100 mg once a day and to

me this sounds like a pretty hefty dose. I don't do well with drugs

such as Valium or Xanax as I've had them in the past and find that

they cloud my thinking far too much for my liking. They also seem to

have the opposite effect on me and seem to bring me even further down

than I would be without them. That is the one thing I like about

taking Zoloft, it doesn't hang in your system like those other drugs

and I am much more functional while taking them. Besides, my

depression would be lifted immediately if some doctor would step up

and offer me a viable solution to my many problems.

Perhaps you are right and it is time that I at least contact Dr

Sutherland to see what he can offer me, if anything at all. I

really have very little to lose at this point in my life(?).

I'll try to keep you informed as to what I decide since I have set a

date of doing something between now and the end of this month.

However, my wife is dead set against my even contacting Dr

Sutherland, especially knowing how much worse off I become after each

and every surgical attempt at a solution. She is deathly afraid of

my seeking this source for a solution and has told me this on several

occasions. Yet, she doesn't have to live with this illness day in

and day out...

Andre'

[Guest guest]

> Andre: Sooo sorry to hear that you're in so much pain. I'm not

> having a good day myself....and after only 5 months or so, the docs

> are getting a little finicky about giving me pain meds. I'm sure

> you've already " been there, done that. " I'm sure this group would

> never reject you Andre. This is awful disease and I can totally

> relate to the " quality of life " vs the " quantity of life " thing.

If

> you don't mind me asking what sort of pain meds are you on? So

far,

> they've given me Darvocet (which is barely cutting - I gotta tell

> you), something called Levbid (which is an anti-spasmodic), Creon

> enzymes, and phergan for the nausea. It BARELY wards it off on a

> bad day. I've taken to not eating lately as well because it

doesn't

> seem to matter what I eat. Well, this message isn't about me --

> it's to let you know that you will ALWAYS have support here. This

> group is the BEST!!

>

> Lots of prayers coming your way

>

>

>Thanks, for your kind words of support.

Currently I am taking Creon with my meals (that is when/if I eat

anything), Methadone for the pain, phenargen for nausea (works fine

if I take it early enough when I first have signs of nausea), Zoloft,

Elavil (supposed to help me sleep-that's a joke), Bentyl with meals,

and Neurontin also for my pain. You mentioned that your doc has you

on Darvocet for your pain. It's been my experience that this

medication is totaly ineffective for dealing with the level of pain

we pancreatitis sufferers have and you probably would do just as well

taking asprin or tylenol and have similar results.

Also, someone else asked whether or not I was a drinker and what sort

of diet I was on. Well, no I don't drink alcohol and never did as it

always made me sick whenever I would try to drink-even a glass of

wine. As for a diet, whenever I do eat, I am on a restricted fat

diet whereby I am to keep my total fat intake to below 20 grams.

That pretty much eliminates most " good tasting " food items but would

gladly adhere to it if it would allow me to eat meals without

pain/vomiting.

Andre'

[Guest guest]

Sorry to hear you are in so much pain. Are you currently taking any

pain meds for the pancreatitis?? I just wanted to let you know that

I too, have been sleeping in a recliner for about 4 years now. It

was hard to get good sleep at first but I am now used to it. As a

matter of fact, just last night I decided I would try to sleep lying

down. Well! I woke up about 6-7 times with awful pain in my left

side. I kept being stubborn about it and would try to fall back

asleep. About 5am I finally gave in and decided that I needed

alittle sleep and reclined again. I don't know if the laying down

position aggravated things but I am in pain today and this morning I

woke up feeling " not right " , and very nauseous. I don't think I

will sleep laying down anymore. I just had to take pain meds again

too. I also wanted to ask if anyone else on the board has this same

problem, where they can't sleep laying down because of it causing

pain. I hope you feel better soon. I find that if I sit on the

floor and lean forward onto the couch or chair then the pain will

ease alittle. Hope this helps some. Take care

Kris

-- In pancreatitis , " Andre Castenell Sr "

<ajcastenell@y...> wrote:

> Here it is, 4:00AM and I'm still up and in excrutiating pain. I

am

> so sick and tired of feeling this way I don't know what to do.

I've

> tried all of my " tricks " that I've had some success with when

feeling

> poorly but none of them seem to be working for me lately. My

weight

> has been steadily dropping too and, I'm told, I look terrible now

> with my bones protruding outward. Even my rib cage is now visible

> and, to make matters worse, I cannot eat anything without

incurring

> more pain and discomfort which makes me shun food that much more.

> Fortunately, I haven't begun to vomit this

> time like I usually do when the pain is this intense and am

praying

> that I won't as time progresses.

> I don't know how much more of this I can put up with, to be

honest.

> My pancreas specialist is at a lost as to what to offer me at this

> stage of my illness since I've had just about every

procedure/surgery

> available to chronic pancreatitis sufferers. The only viable

option

> still available to me now is to have that total

pancreaectomy/Islet

> cell

> transplant surgery offered by Dr Sutherland up in Minnesota.

> However, I am deadly

> afraid of having any more surgeries since, after each one, I tend

to

> come out of it worse off than I was prior to having the surgery.

My

> doctor even tells me he has actively sought help from other

> specialist but no one is willing to touch my case since they have

> nothing better to offer me. Even though I am on 100mg of Zoloft,

I

> am still so depressed it is difficult for me to deal with anyone

or

> anything. My concentration is poor now as I'm either to tired due

to

> a lack of sleep or from the amount of pain I am undergoing.

> I hate to whine like this, but I have nowhere else to turn to

since

> I've just about alienated all of my family members and most of my

> former friends. All I have now is you guys so please bear with my

> whining for just a bit. I don't know what I would do if I finally

> were rejected by the Group too.

> One question, does anyone else in the Group have trouble sleeping

in

> a reclining position? I haven't been able to lie down and sleep

> since 1997 when I had my Whipple surgery. Since then, I have been

> forced to sleep sitting upright in a chair; not the most

comfortable

> way to try and sustain any sleep. My life is literally the pits

with

> no hope of improvement. However, whenever I bring this up to my

> doctor, he reminds me of how fortunate I am to still be alive and

> cancer free as most people who have undergone what I have had to

> undergo are no longer alive to complain. To me, this is not a

> benefit

> and I have told him so on many occasions. I have to constantly

> remind him that I am not after longevity, but am seeking some form

of

> comfort level. Like I tell him, I am not interested in quantity

of

> life, just quality of life. Right now I feel I have neither...

>

> Andre'

[Guest guest]

Andre

I don't get a chance to keep up with the list as often as I would

like, but I saw your message and felt your desperation. I was there

2 years ago, not as the sufferer, but as the mother of a 12-year-old

boy who was suffering unbearably. At the time of his surgery

(TP/ICT) Joey had not eaten or drank for over 8 months. He was on an

obscene amount of Demerol daily infused by an IV pump. This barely

made his pain tolerable. The doctors tried every procedure to try to

control his pain, but nothing helped. He was not sleeping hardly at

all and was suffering from numerous life-threatening line

infections. He was very, very ill before his surgery and 3 days

before, he developed a line infection and was so severe, he was in

a " crash-bed " in the ER at Children's. They operated immediately, to

remove his port, leaving a fresh incision in his chest. He had his

surgery and was in the ICU. Initially, he was on a respirator and

the day after they removed him from the respirator, his lung

collapsed. So, he had the incision in his chest, his enormous

incision from his surgery, drains coming from every conceivable part

of his body and they were pounding his chest to try to reopen his

lung. With all this, he was rating his pain lower than he ever had

during the previous 8 months!!!! I know how hard it is to make the

decision to have this surgery. I would never tell you it was easy.

But, I can tell you that it completely changed all of our lives. Not

a day goes by, that I don't thank God for the miracle he gave us.

Joey is now completely pain-free and is not diabetic. He has grown

immensely and goes to school and plays like any other boy his age. I

know that not every one is as lucky as this after having this

surgery, but I do know, that every one I have had contact with has

had an incredible improvement in their condition. I would love to

speak to you or your wife in more detail about this life-saving

procedure. Please feel free to contact me personally. I hope this

finds you feeling a little better!

Suzanne Wool

[Guest guest]

I am also currently sleeping in a recliner, mainly because I recently

injured my back and laying in a bed was too painful. But even when I

sleep in my bed, I sleep in a reclining position. I haven't been able to

sleep in a flat position since I had my heart surgery. Somehow I just

can't get enough breath to breathe properly when sleeping flat. So you

aren't alone in sleeping in a recliner. By the way, the recliner I used

is very heavily padded and confortable (my mom bought it when she was

unable to sleeep lying flat, though she is finally able to sleep in one

again, so the chair is free for me to take over at night). Andre, maybe

you just need to find a more comfortable chair to sleep in?

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

> Sorry to hear you are in so much pain. Are you currently taking

any

> pain meds for the pancreatitis?? I just wanted to let you know

that

> I too, have been sleeping in a recliner for about 4 years now. It

> was hard to get good sleep at first but I am now used to it. As a

> matter of fact, just last night I decided I would try to sleep

lying

> down. Well! I woke up about 6-7 times with awful pain in my left

> side. I kept being stubborn about it and would try to fall back

> asleep. About 5am I finally gave in and decided that I needed

> alittle sleep and reclined again. I don't know if the laying down

> position aggravated things but I am in pain today and this morning

I

> woke up feeling " not right " , and very nauseous. I don't think I

> will sleep laying down anymore. I just had to take pain meds again

> too. I also wanted to ask if anyone else on the board has this

same

> problem, where they can't sleep laying down because of it causing

> pain. I hope you feel better soon. I find that if I sit on the

> floor and lean forward onto the couch or chair then the pain will

> ease alittle. Hope this helps some. Take care

> Kris

>

>

>

>

>

>

>

>

How interesting that you too cannot sleep lying down. I always

thought it was due to the number of surgeries I've had in the past

that was causing my problems but now I'm starting to wonder...

I went to my pain management doctor today and, due to the

ineffectiveness of the Methadone he had me taking, he placed me once

more on MS Contin (60mg) twice a day and MSIR for breakthrough pain.

I used to take this medication for 5 years up until a couple of years

ago and had much better results with them over the Methadone.

However, I was frightened about the length of time I had been on

these drugs and the fact that, in order to continue getting the same

level of pain relief, I was forced to constantly increas my dosage.

I had gotten up to 120mg before I decided enough was enough and

changed pain doctors. Now look at me, back at square one. Oh well,

it was worth a try...

Funny that you mentioned how you get relief by sitting on the flor

and laying your head on the sofa. I too must bend over at the waist

whenever I am having a tough time with the pain. I double over to

the point where my head is almost touching th floor and have been

known to awaken in this exact position. Whatewver works, you know...

When I try to lie down and sleep, the pain gradually intensifies to

the point where I start to have trouble breathing. Also, if I am

fortunate(?) enough to sleep through the night while in bed, I

definitely pay the price the entire next day as the pain becomes

excrutiating. Totaly not worth it, if you asked me. But, it would

be nice to be able to sleep next to my wife once more as it has been

7 years since we were able to do this together! This illness does

take it's toll on us, doesn't it?

Here's hoping you are having a pain-free day today.

Also, thank you for your message of commisseration. It's always nice

to know that you are not alone in your misery...

Andre'

[Guest guest]

> Andre

>

> I don't get a chance to keep up with the list as often as I would

> like, but I saw your message and felt your desperation. I was

there

> 2 years ago, not as the sufferer, but as the mother of a 12-year-

old

> boy who was suffering unbearably. At the time of his surgery

> (TP/ICT) Joey had not eaten or drank for over 8 months. He was on

an

> obscene amount of Demerol daily infused by an IV pump. This barely

> made his pain tolerable. The doctors tried every procedure to try

to

> control his pain, but nothing helped. He was not sleeping hardly

at

> all and was suffering from numerous life-threatening line

> infections. He was very, very ill before his surgery and 3 days

> before, he developed a line infection and was so severe, he was in

> a " crash-bed " in the ER at Children's. They operated immediately,

to

> remove his port, leaving a fresh incision in his chest. He had his

> surgery and was in the ICU. Initially, he was on a respirator and

> the day after they removed him from the respirator, his lung

> collapsed. So, he had the incision in his chest, his enormous

> incision from his surgery, drains coming from every conceivable

part

> of his body and they were pounding his chest to try to reopen his

> lung. With all this, he was rating his pain lower than he ever had

> during the previous 8 months!!!! I know how hard it is to make the

> decision to have this surgery. I would never tell you it was

easy.

> But, I can tell you that it completely changed all of our lives.

Not

> a day goes by, that I don't thank God for the miracle he gave us.

> Joey is now completely pain-free and is not diabetic. He has grown

> immensely and goes to school and plays like any other boy his age.

I

> know that not every one is as lucky as this after having this

> surgery, but I do know, that every one I have had contact with has

> had an incredible improvement in their condition. I would love to

> speak to you or your wife in more detail about this life-saving

> procedure. Please feel free to contact me personally. I hope this

> finds you feeling a little better!

>

> Suzanne Wool

Thank you Suzanne for your kind words of encouragement. One thing is

for certain, I will not be rushing into this surgery like I did for

the Whipple. Even mules learn lessons eventually...

Your story was really touching as I thank God none of my kids

developed this illness as of yet (all of them are now in their

20's). As bad as I feel most of the time, and with everything I have

been put through seeking a remedy for my illness, I am really

thankful that it was me that had to deal with this pancreatic problem

and not them. I tell my wife often that, although I feel poorly most

days, I feel it is worse on those of us who do not suffer with it but

must care for us " sickies " . I can feel my pain and know exactly what

I am experiencing. However, those who do not suffer from

pancreatitis can only imagine the amount of pain we suffer. It must

be terrible to watch a loved one suffer so much and not be able to

offer any help. That is why I'm constantly tlling my wife that I

empathize with her since she has to live with this illness too

without the benefit of knowing how badly I feel and not be able to

offer the help I so desperately need. I wouldn't trade my illness

for her position, ever and am really thankful that it is me that has

this illness and not any other member of my family.

Andre'

[Guest guest]

> I am also currently sleeping in a recliner, mainly because I

recently

> injured my back and laying in a bed was too painful. But even when

I

> sleep in my bed, I sleep in a reclining position. I haven't been

able to

> sleep in a flat position since I had my heart surgery. Somehow I

just

> can't get enough breath to breathe properly when sleeping flat. So

you

> aren't alone in sleeping in a recliner. By the way, the recliner I

used

> is very heavily padded and confortable (my mom bought it when she

was

> unable to sleeep lying flat, though she is finally able to sleep in

one

> again, so the chair is free for me to take over at night). Andre,

maybe

> you just need to find a more comfortable chair to sleep in?

> Kimber

>

> --

> Kimber

> Vallejo, CA

> hominid2@c...

> Note: All advice given is personal opinion, not equal to that of a

licensed physician or health care professional.

The chair could be the probem as it is an older LazyBoy

recliner/rocker. However, I am unable to recline in it for the same

reasons why I can't lie down in bed to sleep. My wife, who is great

at re-doing furniture has tried to add more padding to the rocker in

order for me to feel more comfortable when in it, but it still isn't

like sleeping in a bed, unfortunately. I find that I am only able to

sleep in short blocks of about 1-2 hours at the most before I wake

up. It's sort of like the old water torture whereby you never fully

feel rested after the night is over. However, every once in a while,

after many nights/days of these short bursts of sleep, I will have an

all day (and night) sleep-a-thon where I literally sleep through the

day and wellinto the night. 'm due for one of them right about now

and am hoping, with mynew pain medications, I will finally have one

of those in store for me.

Hope everything is going well with you and that you are in a pain-

free condition.

Andre'