Questions

[Guest guest]

Dear Sue, Sue M here. I have the opposite problem. Have liver problems so have to take Imodium and Pepto. Took three Imodium yesterday and it was a relief not to have to get up in the middle of the night. I would imagine there is the usual things, Metamucil and such. I am beginning to think that somethings have to be in our hands and not doctors. I've been going to GNC and getting different things. Had a great problem with feet swelling and took a few Ultra Water Pills. Now since the liver tumor and fatty liver came up I take Liverite. So my next blood tests will see if it helps or hurts. I also got a great vitamin from them that has folic acid it in and all the other things we women need. Take care and good to hear from you...Sue M

[Guest guest]

Dear Sue, Sue M here. I have the opposite problem. Have liver problems so have to take Imodium and Pepto. Took three Imodium yesterday and it was a relief not to have to get up in the middle of the night. I would imagine there is the usual things, Metamucil and such. I am beginning to think that somethings have to be in our hands and not doctors. I've been going to GNC and getting different things. Had a great problem with feet swelling and took a few Ultra Water Pills. Now since the liver tumor and fatty liver came up I take Liverite. So my next blood tests will see if it helps or hurts. I also got a great vitamin from them that has folic acid it in and all the other things we women need. Take care and good to hear from you...Sue M

[Guest guest]

Hi Sue,

I know what you mean about the bathroom problems, I've had them all my life. But actually it is worse when your on pain meds, etc. The only thing I can tell you that truly helps is to drink lots and lots of water. You may not like water, I didn't but if I freeze a bottled water, then I can drink it so much easier. I guess because as it thaws its just so cold and good. But you have to drink several ay different times of the day. Believe me you will notice a difference. I did and I hope that helps you! Take care,

Lu

.. I'm having problems with constipation since

I've been on the pred. Have taken stool softeners for a couple of years

because of the problem & I was okay until the pred. Does anyone else have

this problem & do you have any suggestions. I've tried boosting veggies &

fruit. Also both my knees woke me up this morning. The right one had water

on it Thurs. The rheumy said it was from my arthritis. Took so

[Guest guest]

Hi Sue,

I know what you mean about the bathroom problems, I've had them all my life. But actually it is worse when your on pain meds, etc. The only thing I can tell you that truly helps is to drink lots and lots of water. You may not like water, I didn't but if I freeze a bottled water, then I can drink it so much easier. I guess because as it thaws its just so cold and good. But you have to drink several ay different times of the day. Believe me you will notice a difference. I did and I hope that helps you! Take care,

Lu

.. I'm having problems with constipation since

I've been on the pred. Have taken stool softeners for a couple of years

because of the problem & I was okay until the pred. Does anyone else have

this problem & do you have any suggestions. I've tried boosting veggies &

fruit. Also both my knees woke me up this morning. The right one had water

on it Thurs. The rheumy said it was from my arthritis. Took so

[Guest guest]

In a message dated 5/10/03 11:14:02 AM Eastern Daylight Time,

bigsnoochie@... writes:

> Any information you could give me would be great. I just want to help

>

Hi there,

well if the diagnosis is correct, it won't be changing soon. So, stay tuned

to this board, pick up tips and information, there is a bunch of recipes at

the top5 site. And other information as it comes along. If you tune in to

this board you will get more information than you can absorb in any case.

We all hope it goes well as it can for you and yours.

By the way, where are you and yours from?

Best wishes, Poncho - GA

[Guest guest]

In a message dated 5/10/03 11:14:02 AM Eastern Daylight Time,

bigsnoochie@... writes:

> Any information you could give me would be great. I just want to help

>

Hi there,

well if the diagnosis is correct, it won't be changing soon. So, stay tuned

to this board, pick up tips and information, there is a bunch of recipes at

the top5 site. And other information as it comes along. If you tune in to

this board you will get more information than you can absorb in any case.

We all hope it goes well as it can for you and yours.

By the way, where are you and yours from?

Best wishes, Poncho - GA

[Guest guest]

Hello and welcome! Your friend is so lucky to have you. I think it is great

that you are taking a step to educate yourself about this disease. I am

young (29..i think that is young, right?) and have been diagnosed with

Idiopathic Chronic Pancreatitis also. First of all I would encourage your

friend to join this group as well. Before I found this group I felt like I

was the only one in the world who had this disease. The amount of

information that you and your friend can learn from this group is limitless.

I have learned more here than from any doctor! It is has been a true

blessing to me. I have not found any good books on this disease. However

the Internet offers A LOT of information. Just type in Chronic Pancreatitis

into the search engine of your choice and I am sure you will find hours of

information to read. Someone may have already responded to you about how

important a low-fat diet is. Most try and stay under 20 grams/day. Which

isn't much. Plenty of water is also very important. Has your friend been

put on enzymes to take with meals and snacks? Have they given her anything

for pain control? If you have specific questions please post them, and you

will surely get some great advice. Let us know name and location of both you

and your friend. Welcome!!

Sending lots of happy thoughts your way....

Marisa~San Diego, CA

[Guest guest]

Hello and welcome! Your friend is so lucky to have you. I think it is great

that you are taking a step to educate yourself about this disease. I am

young (29..i think that is young, right?) and have been diagnosed with

Idiopathic Chronic Pancreatitis also. First of all I would encourage your

friend to join this group as well. Before I found this group I felt like I

was the only one in the world who had this disease. The amount of

information that you and your friend can learn from this group is limitless.

I have learned more here than from any doctor! It is has been a true

blessing to me. I have not found any good books on this disease. However

the Internet offers A LOT of information. Just type in Chronic Pancreatitis

into the search engine of your choice and I am sure you will find hours of

information to read. Someone may have already responded to you about how

important a low-fat diet is. Most try and stay under 20 grams/day. Which

isn't much. Plenty of water is also very important. Has your friend been

put on enzymes to take with meals and snacks? Have they given her anything

for pain control? If you have specific questions please post them, and you

will surely get some great advice. Let us know name and location of both you

and your friend. Welcome!!

Sending lots of happy thoughts your way....

Marisa~San Diego, CA

[Guest guest]

Hi,

I need to interject here for a minute. A very low fat diet is not 30gm or

less. That is for a healthy person based on FDA guidelines. I know that

should we let Cassie consume 30 grms in a single day she'll be in the

hospital tomorrow. We try following

no more the 6 gms per meal all snacks no fat at all.

Also keep the following in mind - just becasue a label says fat free does not

mean it is. Many processed no fat items contain trace amounts and when

several no fat items are combined you can create fat. Also 1 serving may be

no fat but 2 or 3 servings of the same thing again may create fat. Or

several no-fat items may combine to create a fat. Serving size is also

important when tracking fat. If 1 serving has 2 grams of fat for a 1/2 cup

then to get that only 2 grams,you can only have 1/2 cup. . When consuming

items containing fat we look for those high in Omega-3 fatty acids such as

samon.

In many recipes that are considered normal we have been able to greatly

reduce the fat by making substitutions. We use broths instead of oil or

butter to stir fry meats and vegetables. Stir fry itself is a great source

of fat if not done correctly. All those wonderful sauces are high in fats

and carbs. It is also a good way to fool yourself about meat consumption . 1

serving of meat is the size of a deck of cards, when was the last time you

ate a steak that small? Anyway, when making stir fry if the meat is cut very

thin prior to cooking you can get away with less. By doing so I feed my

family of 4 with 1 1/2 serving of meat for all 4 of us. We also consume most

stir fry with Nori (seaweed) it's the stuff they wrap Sushi in. One sheet is

packed full of wonderful vitamins and minerals. Even my 3 year old loves the

stuff.

Ok so now you've cut fat, there goes the taste, right? WRONG! That's what

spices are for. Experiment, you'd be suprised how much better your food

tastes when enhanced by spices rather than fat. Also remember that many

spices also have a medicinal effect as well so if the are fresh the better

the are for you. Garlic is touted to be a good antibiotic, cayenne, horse

radish and wasabi are al great for cold and sinus symptoms. just to name a

few.

Carbs also can be quite confusing. Yes they are sugars, but fiber is also

carbs. Fiber while containing carbs is also very, very important to optimum

colon health. It is a must to keep your bowels moving. Who wants the pain,

bloating and general disomfort of constipation on top on pancreatitis? You

don't need all those extra posions sitting around in your gut making you even

sicker. So while watching carbs is inportant due to sugar content. don't

limit them to much you need the fiber. Whole grains and raw vegeies are a

must. Also not all fruit and vergies are fat free - look at the banana or

avacodo - both are high in fat. The less processed an item is the better for

you. This goes for anything you eat. We have even switched to raw sugar,

which looks alot like brown sugar only it's very course. White sugar robs

the body of vitamins and minerals.

I have a great cookbook I'd like to recomend to all. 500 (parctically) fat

free on-pot recipes. By Schlesinger. Al recipes conform to the FDA's

low-fat guidelines of of 3 grams of fat or less. This food actually has

taste unlike many low fat, no fat recipes we have tried before. Plus most

have minimum prep time and everything goes in one pot. Easy prep and less

mess. Last night we had a wonderful fishermans stew, full of flavor and

vegies! Yum - A mixed salad with spices rather than dressings and homemade

whole grain bread, with no fats or oils in it. Total fat less than 3 grams

per serving

Happy Mother's day to all God Bless.

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

Hi,

I need to interject here for a minute. A very low fat diet is not 30gm or

less. That is for a healthy person based on FDA guidelines. I know that

should we let Cassie consume 30 grms in a single day she'll be in the

hospital tomorrow. We try following

no more the 6 gms per meal all snacks no fat at all.

Also keep the following in mind - just becasue a label says fat free does not

mean it is. Many processed no fat items contain trace amounts and when

several no fat items are combined you can create fat. Also 1 serving may be

no fat but 2 or 3 servings of the same thing again may create fat. Or

several no-fat items may combine to create a fat. Serving size is also

important when tracking fat. If 1 serving has 2 grams of fat for a 1/2 cup

then to get that only 2 grams,you can only have 1/2 cup. . When consuming

items containing fat we look for those high in Omega-3 fatty acids such as

samon.

In many recipes that are considered normal we have been able to greatly

reduce the fat by making substitutions. We use broths instead of oil or

butter to stir fry meats and vegetables. Stir fry itself is a great source

of fat if not done correctly. All those wonderful sauces are high in fats

and carbs. It is also a good way to fool yourself about meat consumption . 1

serving of meat is the size of a deck of cards, when was the last time you

ate a steak that small? Anyway, when making stir fry if the meat is cut very

thin prior to cooking you can get away with less. By doing so I feed my

family of 4 with 1 1/2 serving of meat for all 4 of us. We also consume most

stir fry with Nori (seaweed) it's the stuff they wrap Sushi in. One sheet is

packed full of wonderful vitamins and minerals. Even my 3 year old loves the

stuff.

Ok so now you've cut fat, there goes the taste, right? WRONG! That's what

spices are for. Experiment, you'd be suprised how much better your food

tastes when enhanced by spices rather than fat. Also remember that many

spices also have a medicinal effect as well so if the are fresh the better

the are for you. Garlic is touted to be a good antibiotic, cayenne, horse

radish and wasabi are al great for cold and sinus symptoms. just to name a

few.

Carbs also can be quite confusing. Yes they are sugars, but fiber is also

carbs. Fiber while containing carbs is also very, very important to optimum

colon health. It is a must to keep your bowels moving. Who wants the pain,

bloating and general disomfort of constipation on top on pancreatitis? You

don't need all those extra posions sitting around in your gut making you even

sicker. So while watching carbs is inportant due to sugar content. don't

limit them to much you need the fiber. Whole grains and raw vegeies are a

must. Also not all fruit and vergies are fat free - look at the banana or

avacodo - both are high in fat. The less processed an item is the better for

you. This goes for anything you eat. We have even switched to raw sugar,

which looks alot like brown sugar only it's very course. White sugar robs

the body of vitamins and minerals.

I have a great cookbook I'd like to recomend to all. 500 (parctically) fat

free on-pot recipes. By Schlesinger. Al recipes conform to the FDA's

low-fat guidelines of of 3 grams of fat or less. This food actually has

taste unlike many low fat, no fat recipes we have tried before. Plus most

have minimum prep time and everything goes in one pot. Easy prep and less

mess. Last night we had a wonderful fishermans stew, full of flavor and

vegies! Yum - A mixed salad with spices rather than dressings and homemade

whole grain bread, with no fats or oils in it. Total fat less than 3 grams

per serving

Happy Mother's day to all God Bless.

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

Hi ,

This is excellent advice for Carole and very important. Even without baseline

levels, the liver function tests and CBC should be tested at about 4 weeks

after starting meds, since this is when side effects typically occur. Thanks,

elaine

[Guest guest]

Hi ,

He needs to see a pediatric endocrinologist. That is much more

important than a geneticist if he is already diagnosed. Is there any

chance of your coming to NY to see Dr. Harbison? She is the doctor

in the US who handles the most RSS children.

I just bought some size 2T boys underwear for my son, but I haven't

tried it on him yet. If that is too big, I was considering trying on

the 2T girls underwear that my daughter outgrew. It has Blues Clues

on it which loves. is not yet potty trained although we

are about to try soon.

Good luck,

Judith, Steve, (RSS) and (non RSS) almost 4 year old

twins

PS is 24 pounds 4 oz and 32 inches

[Guest guest]

,

Don't feel too silly about the underwear question. I remember asking

the same question when my son was about that age. I found that the

Hanes boxer briefs size xs seemed to fit him better, and he loved

that they looked like shorts. They say size 4 I think, but they

always fit him the best. Also, you may want to get an appointment

with an endochrinologist. They are the ones who focus more on the

growth problems.

Good luck!

Carmen, Mom to Storm, age 8.5 yrs, RSS, 48 pounds, 4 feet tall!!!

[Guest guest]

hi kim!!

i am sorry that i cant answere any of your questions, but wanted to

let you know that you and matthew are in my thoughs and prayers and

i hope you will get the answeres that you need to help him!! good

luck!!

jodie c.

In RSS-Support , " Kacey171 " <capuano_k@p...> wrote:

> I have finally spoken with our local endo about Dr. H's

recommendations at the

> convention, and again it seems they are batting heads, so I am

hoping someone, maybe

> or Jodi can answer these questions. 's IGF1 level

is high (561), not

> growing well, and hasn't had an increase in GH dosage for almost a

year. According to our

> local endo before the convention, that level was an indicator that

his dosage should be

> lowered (not increased), but he could not give an answer on why he

though

> wasn't growing. Post convention, I told him that Dr. H said you

would expect the IGF1 level

> to be high and to increase his GH dosage to whatever it takes to

make him grow.

> 's doctor says that this could put him at risk for

diabetes, and he isn't going to

> make him a diabetic just to get him to grow. Dr. H talks a lot

oabout Type 2 diabetes, but

> I never heard her say that too much GH, producing too high IGF1

levels can cause

> diabetes. Anyone know the answer to this one?

>

> Also, Dr. H wants an OGTT repeated, She thought the last one he

had wasn't completed

> right, but agian, our local endo disagrees, and says he doesn't

have any problems with his

> blood sugar. Other than looking for hypoglycemia (which I don't

think has now),

> are there other reasons to do an OGTT?

>

> I am starting to feel very anxious as I feel that we don't have

much time left to get

> to grow, and I think he is smaller than most RSS boys his

age who have been on

> GH for 3 years. In addition, got a back brace for

kyphosis after the convention,

> has been started on some new meds, including one that gave me a

good scare last night

> (almost a call to 911), and it just seems that right in time for

school to start next week,

> things keep getting harder for , but doesn't it seem that

it always goes that way?

>

> Kim C.

[Guest guest]

Kim,

I won't be of ANY help to you about your questions, but I wanted to

give you my support because it sounds like you are dealing with a lot

right now, and are a little stressed. I am so sorry that

doctor(s) aren't working with you and with what Dr. H has

recommended. I hope you get it all straightened out to where you are

comfortable with 's care. He is one special guy, and he has

such a great mom that is being his advocate right now. You just keep

being his voice and MAKE them hear you, or go elsewhere to where you

are comfortable. After all, she knows these kids better than anyone

else does.

Hang in there and email me if you want to,

Jodi R.

> I have finally spoken with our local endo about Dr. H's

recommendations at the

> convention, and again it seems they are batting heads, so I am

hoping someone, maybe

> or Jodi can answer these questions. 's IGF1 level

is high (561), not

> growing well, and hasn't had an increase in GH dosage for almost a

year. According to our

> local endo before the convention, that level was an indicator that

his dosage should be

> lowered (not increased), but he could not give an answer on why he

though

> wasn't growing. Post convention, I told him that Dr. H said you

would expect the IGF1 level

> to be high and to increase his GH dosage to whatever it takes to

make him grow.

> 's doctor says that this could put him at risk for diabetes,

and he isn't going to

> make him a diabetic just to get him to grow. Dr. H talks a lot

oabout Type 2 diabetes, but

> I never heard her say that too much GH, producing too high IGF1

levels can cause

> diabetes. Anyone know the answer to this one?

>

> Also, Dr. H wants an OGTT repeated, She thought the last one he

had wasn't completed

> right, but agian, our local endo disagrees, and says he doesn't

have any problems with his

> blood sugar. Other than looking for hypoglycemia (which I don't

think has now),

> are there other reasons to do an OGTT?

>

> I am starting to feel very anxious as I feel that we don't have

much time left to get

> to grow, and I think he is smaller than most RSS boys his

age who have been on

> GH for 3 years. In addition, got a back brace for kyphosis

after the convention,

> has been started on some new meds, including one that gave me a

good scare last night

> (almost a call to 911), and it just seems that right in time for

school to start next week,

> things keep getting harder for , but doesn't it seem that it

always goes that way?

>

> Kim C.

[Guest guest]

Jodie,

Thanks for your support!

Kim

> hi kim!!

> i am sorry that i cant answere any of your questions, but wanted to

> let you know that you and matthew are in my thoughs and prayers and

> i hope you will get the answeres that you need to help him!! good

> luck!!

> jodie c.

[Guest guest]

Hi Nina,

I'm sure you'll get some good advice here, but you can also check out

the geocities site at http://www.geocities.com/orthognathicinfo/

Click on SURGERY FAQS, RECOVERY FAQS, PERSONAL SURGERY EXPERIENCES

>

> i am having upper and lower jaw surgery next week what do i pack ,

> what do i expect after the surgery

>

> nina

[Guest guest]

Hi Nina,

I'm sure you'll get some good advice here, but you can also check out

the geocities site at http://www.geocities.com/orthognathicinfo/

Click on SURGERY FAQS, RECOVERY FAQS, PERSONAL SURGERY EXPERIENCES

>

> i am having upper and lower jaw surgery next week what do i pack ,

> what do i expect after the surgery

>

> nina

[Guest guest]

Hi ,

My worry would be that you've gone a full 4 months with NO weight gain. Have

you tried periactin?? Or just upping the calories of what she eats with

additives???

I specifically asked the Drs about this because was on Pulmicort for

over 2 years. (we recently moved him over to a Flovent inhaler with a

spacer) They told me that this was not something we needed to worry about.

However, they do have on Zopenex, instead of Albuterol. Albuterol

can cause the heart to race, and increase metabolism?? Zopenex avoids those

side effects, but does the same job.

Hope this helps.

Pat (g-ma to , RSS, 34 months, 23.9#, 32.2 " , G-Tube)

[Guest guest]

Hi ,

also takes albuterol and pulmocort, but only when his asthma

acts up and not on a regular basis. Dr H is fine with these two

medications for him. Our pediatrician also gave us an oral steriod

for when his asthma is really bad, but Dr H doesn't want him on it,

only on the albuterol and pulmocort.

Judith, Steve, (RSS) and (non RSS) 4 1/2 year old twins

[Guest guest]

,

According to our pulminologist, the pulmicort only inhibits growth

for the first few weeks or so and then it evens back out. It also

causes weight gain! At least that part is good for out kids! My son

was on it for a while but since he is older he has been switched to

flovent inhaler. (No more nebs unless it is emergency albuterol nebs)

I hope this helps! Storm always grows better when he is healthier,

and he isn't healthy if he doesn't use his flovent! It's give and

take!

Blessings,

Carmen

[Guest guest]

,

There is a theoretical potential for slower growth on nebulized

steroids but most of docs I have spoken with about this are not

concerned. There is definite correlation of diminished growth with

systemic steroids if given over several weeks (i.e. if they are

swallowed or injected).

I'm assuming Emerence is getting the pulmicort for an asthma like

state. If she needs it and doesn't get it, her working harder to

breathe will burn more calories than usual and make weight gain

difficult.

You know where I am if you need to talk more.

>

> Hi,

>

> Emerence is now 21 mo old and her last weight (by endocrin) 18 lb

11

> oz 28.5. She seemed to be lighter so I took her to the dr's to

have

> her weighed and she was the same but she looks thinner so I think

she

> may have grown a bit? Anyway, her wt/ht was 10% at the convention

> and is it really bad if she starts dropping?

>

> Additionally, anyone else hear that the pulmicort (for a nebulizer)

> can inhibit growth (oh yippee) she just went back on it, and

> albuterol, after being off the albuterol since DEc and the

pulmicort

> since March .

>

> Any thoughts?

>

> , mom to almost 5 and Emerence SGA/poss RSS " little

girl

> with MACK truck attitude on VW bug body "

>

>

[Guest guest]

Hi,

About the tube in your nose....from MY experience, yes it is

uncomfortable, but I was so " out of it " that it did not matter. My

sister decided to stay with me the first night, which helped,

because the nurse I had was CLUELESS! she was trying to get me to

drink and the tube was down to my stomach. the scary thing for me

was coughing, because it came out of the tube and grossed me out.

overall, the tube experience is not bad, believe me, I was scared

too.

I did not feel sick because of the IV they will give you something

if you feel sick to keep the nausea away.

good luck.

bethanne

>

> I'm scheduled for upper/lower/palate Jan. 17 and I've been having

> bad nightmares about it. I just wanted to ask (from your

experience):

>

> 1) when you wake up after surgery and you have the nasogastric

tube

> in what are you feeling? Are you totally out of it from the

drugs;

> do you feel sick from not eating for so long, nauseous; do you get

> scared and freak out; do you try to open your mouth but then can't

> and then you get scared too; do you feel any pain, weird feeling;

do

> you cry, get hysterical?

>

> 2) about that tube, what are people's feelings about this, I am

> worried that if I get upset about it, hysterical or throw up what

> happens when that tube is in, can it move, go somewhere its not

> supposed to, damage something? I just picture them telling me to

> relax or something when they are going to take it out the next day

> and what if I freak and can't relax (I'm known to hyperventilate

> when I'm nervous)

>

> Thanks for any experiences you can share. I know I should be more

> positive but I just keep thinking that I won't be able to handle

> this.

[Guest guest]

Hi,

About the tube in your nose....from MY experience, yes it is

uncomfortable, but I was so " out of it " that it did not matter. My

sister decided to stay with me the first night, which helped,

because the nurse I had was CLUELESS! she was trying to get me to

drink and the tube was down to my stomach. the scary thing for me

was coughing, because it came out of the tube and grossed me out.

overall, the tube experience is not bad, believe me, I was scared

too.

I did not feel sick because of the IV they will give you something

if you feel sick to keep the nausea away.

good luck.

bethanne

>

> I'm scheduled for upper/lower/palate Jan. 17 and I've been having

> bad nightmares about it. I just wanted to ask (from your

experience):

>

> 1) when you wake up after surgery and you have the nasogastric

tube

> in what are you feeling? Are you totally out of it from the

drugs;

> do you feel sick from not eating for so long, nauseous; do you get

> scared and freak out; do you try to open your mouth but then can't

> and then you get scared too; do you feel any pain, weird feeling;

do

> you cry, get hysterical?

>

> 2) about that tube, what are people's feelings about this, I am

> worried that if I get upset about it, hysterical or throw up what

> happens when that tube is in, can it move, go somewhere its not

> supposed to, damage something? I just picture them telling me to

> relax or something when they are going to take it out the next day

> and what if I freak and can't relax (I'm known to hyperventilate

> when I'm nervous)

>

> Thanks for any experiences you can share. I know I should be more

> positive but I just keep thinking that I won't be able to handle

> this.

[Guest guest]

Hi there. The questions you've asked are good ones and valid. The

experience is different for everyone and everyone reacts differently

but I'll tell you my experience in hopes it will alleviate your

fears.

I had lower jaw advancement done on Nov. 5th. My surgery lasted 1

1/2 hours and went very well. I remember waking up and hearing

someone mentioning that my eyes were open but I don't remember them

taking out the nose tube. I was also constantly asked how my pain

was and they kept giving me medicine till the pain level was

negligible. I was very comfortable the rest of the day. I had some

gunk lodged in my throat that they removed with a suction tube via

my nose but it wasn't bad at all and I was just glad to get the

irritating stuff out. That only happened twice. My throat was sore

for a few hours from the breathing tube so don't be surprised about

that. I was never nauseated. Um, what else? It's helpful to have a

friend or family member sitting there with you to hold your hand. I

napped a little that first day but was really surprised about how

comfortable I was. And no, I couldn't open my mouth but it felt

secure and I found that I didn't even want to try to open it. I had

a " face bra " bandage wrapped around my neck and face to help keep

the swelling down along with ice packs.

I was really worried about all of this before my surgery. The other

concern I had was the language barrier. I had my surgery in Japan

and I'm not a native Japanese. I do speak the language but I was

worried that I would be so out of it either from medicine or fear

that I wouldn't understand the nurses. I was able to understand most

everything and everyone was extremely kind. Let your doctors and

nurses know your concerns. They are there for you.

Best of luck to you. I'm sorry this reply was so long. I hope it

helps. You aren't alone in this ordeal. Let us know how you are.

P.S. I started to cry once in the hospital but realized that my nose

was getting stuffed up so I quickly stopped. I ended up laughing

instead.

>

> I'm scheduled for upper/lower/palate Jan. 17 and I've been having

> bad nightmares about it. I just wanted to ask (from your

experience):

>

> 1) when you wake up after surgery and you have the nasogastric

tube

> in what are you feeling? Are you totally out of it from the

drugs;

> do you feel sick from not eating for so long, nauseous; do you get

> scared and freak out; do you try to open your mouth but then can't

> and then you get scared too; do you feel any pain, weird feeling;

do

> you cry, get hysterical?

>

> 2) about that tube, what are people's feelings about this, I am

> worried that if I get upset about it, hysterical or throw up what

> happens when that tube is in, can it move, go somewhere its not

> supposed to, damage something? I just picture them telling me to

> relax or something when they are going to take it out the next day

> and what if I freak and can't relax (I'm known to hyperventilate

> when I'm nervous)

>

> Thanks for any experiences you can share. I know I should be more

> positive but I just keep thinking that I won't be able to handle

> this.