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ette, Dr R's surgery is different, you won't find anyone else doing this

particular procedure, so reading another website will not help you for

information about Dr R's surgery. I think the site was offered to you so

you could explore your options...and realize that there are dozens of

different methods of weight loss surgery. For us to tell you which way to

go.......well, we are a tad biased. LOL If you visit clos.net----Dr R has

loads of information showing what the differences in surgery are, and the

advantages of having surgery with him. If you are confused, you MUST do

more research! Don't make this big of a decision about your life without

getting all the facts. Go with the method you feel is right for you. :-)

fg

At 11:10 PM 05/02/2000 -0700, you wrote:

>STILL CONFUSED WHAT WAY TO GO, l been reading this sight lots sounded

great, but got info from dr. r . then some one told me to go to sight

>www.gastricbypass.com ten on left were list is go to operations, stoll

down to loop gastric bypass, says been abandoned as unsafe and lots more ?

is that what this surgery is the book they sent me calls it that, i got my

appoint ment tomorrow for open gastric consultation,hear in ohio close to

home, but i found your group and really thought this sounds great then l was

told go read that, oh course not going plum to calif, but very confused will

some one else go read it and give me some advice confused wich way to go

PAULETTE scorpio@...

>

>

>

>

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Guest guest

ette, Dr R's surgery is different, you won't find anyone else doing this

particular procedure, so reading another website will not help you for

information about Dr R's surgery. I think the site was offered to you so

you could explore your options...and realize that there are dozens of

different methods of weight loss surgery. For us to tell you which way to

go.......well, we are a tad biased. LOL If you visit clos.net----Dr R has

loads of information showing what the differences in surgery are, and the

advantages of having surgery with him. If you are confused, you MUST do

more research! Don't make this big of a decision about your life without

getting all the facts. Go with the method you feel is right for you. :-)

fg

At 11:10 PM 05/02/2000 -0700, you wrote:

>STILL CONFUSED WHAT WAY TO GO, l been reading this sight lots sounded

great, but got info from dr. r . then some one told me to go to sight

>www.gastricbypass.com ten on left were list is go to operations, stoll

down to loop gastric bypass, says been abandoned as unsafe and lots more ?

is that what this surgery is the book they sent me calls it that, i got my

appoint ment tomorrow for open gastric consultation,hear in ohio close to

home, but i found your group and really thought this sounds great then l was

told go read that, oh course not going plum to calif, but very confused will

some one else go read it and give me some advice confused wich way to go

PAULETTE scorpio@...

>

>

>

>

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Guest guest

ette, Dr R's surgery is different, you won't find anyone else doing this

particular procedure, so reading another website will not help you for

information about Dr R's surgery. I think the site was offered to you so

you could explore your options...and realize that there are dozens of

different methods of weight loss surgery. For us to tell you which way to

go.......well, we are a tad biased. LOL If you visit clos.net----Dr R has

loads of information showing what the differences in surgery are, and the

advantages of having surgery with him. If you are confused, you MUST do

more research! Don't make this big of a decision about your life without

getting all the facts. Go with the method you feel is right for you. :-)

fg

At 11:10 PM 05/02/2000 -0700, you wrote:

>STILL CONFUSED WHAT WAY TO GO, l been reading this sight lots sounded

great, but got info from dr. r . then some one told me to go to sight

>www.gastricbypass.com ten on left were list is go to operations, stoll

down to loop gastric bypass, says been abandoned as unsafe and lots more ?

is that what this surgery is the book they sent me calls it that, i got my

appoint ment tomorrow for open gastric consultation,hear in ohio close to

home, but i found your group and really thought this sounds great then l was

told go read that, oh course not going plum to calif, but very confused will

some one else go read it and give me some advice confused wich way to go

PAULETTE scorpio@...

>

>

>

>

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  • 1 year later...
Guest guest

Moya,

I could be wrong, but the amount of niacin in foods is small compared

to that in a vitamin pill that may contain 25 mg. or more of niacin

and could cause flushing. If flax or lecithin don't bother you, I

would guess that those foods don't have a substantial amount of

niacin.

Take care,

Matija

> I'm confused about niacin. I thought I heard it was a

> trigger for R. If that's true, is it a given trigger

> like alcohol and spicey food, or is it a trigger for

> some & not others? I just found out that niacin is in

> flax seeds & I thought flax was good for R. And what

> about lecithin? Is that bad? Can someone please help

> me figure this out. Thanks!

>

> =====

> The greatness of a nation & its moral progress can be judged

> by the way its animals are treated. - Gandhi

>

> __________________________________________________

>

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Guest guest

Moya,

I could be wrong, but the amount of niacin in foods is small compared

to that in a vitamin pill that may contain 25 mg. or more of niacin

and could cause flushing. If flax or lecithin don't bother you, I

would guess that those foods don't have a substantial amount of

niacin.

Take care,

Matija

> I'm confused about niacin. I thought I heard it was a

> trigger for R. If that's true, is it a given trigger

> like alcohol and spicey food, or is it a trigger for

> some & not others? I just found out that niacin is in

> flax seeds & I thought flax was good for R. And what

> about lecithin? Is that bad? Can someone please help

> me figure this out. Thanks!

>

> =====

> The greatness of a nation & its moral progress can be judged

> by the way its animals are treated. - Gandhi

>

> __________________________________________________

>

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Share on other sites

Guest guest

Moya,

I could be wrong, but the amount of niacin in foods is small compared

to that in a vitamin pill that may contain 25 mg. or more of niacin

and could cause flushing. If flax or lecithin don't bother you, I

would guess that those foods don't have a substantial amount of

niacin.

Take care,

Matija

> I'm confused about niacin. I thought I heard it was a

> trigger for R. If that's true, is it a given trigger

> like alcohol and spicey food, or is it a trigger for

> some & not others? I just found out that niacin is in

> flax seeds & I thought flax was good for R. And what

> about lecithin? Is that bad? Can someone please help

> me figure this out. Thanks!

>

> =====

> The greatness of a nation & its moral progress can be judged

> by the way its animals are treated. - Gandhi

>

> __________________________________________________

>

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Share on other sites

  • 4 months later...
Guest guest

Are both of you eating four-five-six small meals a day?? I know, that's

about the hardest thing in the world to plan for and actually execute. Try

as I might, I don't seem to be able to go much further than three... But at

least that's a lot better than the ONE that I was used to, if that. I know

it's especially hard if food makes one nauseous or sick, but it's so

important.

Do you suffer from seizures? The last one I had was extreme enough to scare

me into taking better care of my body. I thrashed around my apartment for

almost two hours before the woman upstairs finally called 911. I couldn't

speak, I couldn't pick up the phone - the room was spinning so rapidly that I

couldn't stay on my feet, heck I couldn't even crawl... I was just so

upside-down. I managed to knock the phone off the hook, but then all I could

manage to do with it was to push it against the wall with my chin a couple of

times. Finally I had to wriggle over to a dresser and use my feet to try

knocking it over... Couldn't do that, but it made enough noise banging into

the wall that the neighbor got alarmed and called 911. Thank God she did,

I'd have died. In fact the guys from the ambulance, once they gave me some

glucose, said that it was a miracle that I had enough strength to go on for

two hours as it was - they'd neither one seen anybody in a diabetic

hypoglycemic episode stay conscious that long without going comatose... then

I'd had been cooked, as my partner was out of town for the weekend, and he'd

have just had to find me on the bedroom floor two days later... It was pretty

scary, still is. Thankfully, I started to take the diabetes more seriously

after that, and soon learned a great deal more about my body and what it

needs. I don't honor it all the time, not even close, but I'm a lot better

than I was at that time.

Unfortunately, Gail, Diabetes (as you well know) is just a part of the cross

that most of us - many of us - with CP have to carry. It was incredibly

brave of you to go through the transplant surgery if you had diabetes - I'm

sorry, was that the case? I know I shouldn't assume. In fact I'd love to

know if you were diabetic BEFORE the surgery or not, or if the diabetes is a

result of the surgery.

I so desperately would love to have the pancreatectomy and islet cell

transplant, but I'm end-stage CP and have been diabetic for some time, so I'm

guessing that my islet count is near ZERO, so I haven't pursued it - I keep

hoping for some sort of breakthrough that will make the surgery a better

choice for we diabetics that won't just automatically leave us brittle. Some

would say I'm being naive and overly optimistic. It gives me something to hope

for.

I experience the same with exercise - I have to ALWAYS take along juice or

milk. (If milk, I tend to freeze about 1/3 bottle of water, then pour the

cold milk over it so that it stays cold - it's not bad, and it does the

trick!)... Plus, my gym bag is never short of candy bars, hard candy, peanut

butter crackers, etc. Works well enough that I've only had one major problem

while exercising, and that was before I was so well-prepared.

Had to have my tennis partner drive me home ASAP so I could get something in

my system, and I locked my keys in my trunk that day. What a terrible

day THAT turned out to be. Thankfully, all worked out in the end. Haha.

Here I am, anyway.

Good luck Ladies, God bless.

Peace,

Terry in KC

<< Jill,

I have experienced significant hypoglycemia since I had pancreatitis. I have

been severely symptomatic. When I has on TPN I had to be careful when

coming off the infusion because my blood sugar would drop to the 32 range.

Since I have been able to eat I have to be careful about eating a balanced

diet and wait the exercise. I have

to carry with me candy for some kind of agent to increase my blood sugar. I

can get hypoglycemic out of the blue and need sugar.

I was not this way before I had pancreatitis not to this extreme.

I have since had a auto islet cell transplant and pancreatectomy, the hype

glycemia is not any better. I still need to carry candy with me and get more

hypoglycemic with exercise.

gail

jgecker wrote:

> Hi, friends,

>

> I know that many of you suffer from diabetes as a result of the

pancreatitis. But, do any of you have hypoglycemia. I think that I do. I just

had an 5 hour oral glucose tolerance test. From what I've seen on the

internet, my results seem to follow the pattern. I was within normal range

for hours 1 and 2 but, by hour 3, I was low at

> 55 mg/dl. So, I'm guessing that I'm now hypoglycemic, tho when my doctor's

nurse called with the results she said it was " borderline low " . From what

I've read it's definitely hypoglycemia.

>

> Any light that can be shed on this would be greatly appreciated.

>

> You guys are the best. Thanks so much.

>

> Jill >>

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Guest guest

Are both of you eating four-five-six small meals a day?? I know, that's

about the hardest thing in the world to plan for and actually execute. Try

as I might, I don't seem to be able to go much further than three... But at

least that's a lot better than the ONE that I was used to, if that. I know

it's especially hard if food makes one nauseous or sick, but it's so

important.

Do you suffer from seizures? The last one I had was extreme enough to scare

me into taking better care of my body. I thrashed around my apartment for

almost two hours before the woman upstairs finally called 911. I couldn't

speak, I couldn't pick up the phone - the room was spinning so rapidly that I

couldn't stay on my feet, heck I couldn't even crawl... I was just so

upside-down. I managed to knock the phone off the hook, but then all I could

manage to do with it was to push it against the wall with my chin a couple of

times. Finally I had to wriggle over to a dresser and use my feet to try

knocking it over... Couldn't do that, but it made enough noise banging into

the wall that the neighbor got alarmed and called 911. Thank God she did,

I'd have died. In fact the guys from the ambulance, once they gave me some

glucose, said that it was a miracle that I had enough strength to go on for

two hours as it was - they'd neither one seen anybody in a diabetic

hypoglycemic episode stay conscious that long without going comatose... then

I'd had been cooked, as my partner was out of town for the weekend, and he'd

have just had to find me on the bedroom floor two days later... It was pretty

scary, still is. Thankfully, I started to take the diabetes more seriously

after that, and soon learned a great deal more about my body and what it

needs. I don't honor it all the time, not even close, but I'm a lot better

than I was at that time.

Unfortunately, Gail, Diabetes (as you well know) is just a part of the cross

that most of us - many of us - with CP have to carry. It was incredibly

brave of you to go through the transplant surgery if you had diabetes - I'm

sorry, was that the case? I know I shouldn't assume. In fact I'd love to

know if you were diabetic BEFORE the surgery or not, or if the diabetes is a

result of the surgery.

I so desperately would love to have the pancreatectomy and islet cell

transplant, but I'm end-stage CP and have been diabetic for some time, so I'm

guessing that my islet count is near ZERO, so I haven't pursued it - I keep

hoping for some sort of breakthrough that will make the surgery a better

choice for we diabetics that won't just automatically leave us brittle. Some

would say I'm being naive and overly optimistic. It gives me something to hope

for.

I experience the same with exercise - I have to ALWAYS take along juice or

milk. (If milk, I tend to freeze about 1/3 bottle of water, then pour the

cold milk over it so that it stays cold - it's not bad, and it does the

trick!)... Plus, my gym bag is never short of candy bars, hard candy, peanut

butter crackers, etc. Works well enough that I've only had one major problem

while exercising, and that was before I was so well-prepared.

Had to have my tennis partner drive me home ASAP so I could get something in

my system, and I locked my keys in my trunk that day. What a terrible

day THAT turned out to be. Thankfully, all worked out in the end. Haha.

Here I am, anyway.

Good luck Ladies, God bless.

Peace,

Terry in KC

<< Jill,

I have experienced significant hypoglycemia since I had pancreatitis. I have

been severely symptomatic. When I has on TPN I had to be careful when

coming off the infusion because my blood sugar would drop to the 32 range.

Since I have been able to eat I have to be careful about eating a balanced

diet and wait the exercise. I have

to carry with me candy for some kind of agent to increase my blood sugar. I

can get hypoglycemic out of the blue and need sugar.

I was not this way before I had pancreatitis not to this extreme.

I have since had a auto islet cell transplant and pancreatectomy, the hype

glycemia is not any better. I still need to carry candy with me and get more

hypoglycemic with exercise.

gail

jgecker wrote:

> Hi, friends,

>

> I know that many of you suffer from diabetes as a result of the

pancreatitis. But, do any of you have hypoglycemia. I think that I do. I just

had an 5 hour oral glucose tolerance test. From what I've seen on the

internet, my results seem to follow the pattern. I was within normal range

for hours 1 and 2 but, by hour 3, I was low at

> 55 mg/dl. So, I'm guessing that I'm now hypoglycemic, tho when my doctor's

nurse called with the results she said it was " borderline low " . From what

I've read it's definitely hypoglycemia.

>

> Any light that can be shed on this would be greatly appreciated.

>

> You guys are the best. Thanks so much.

>

> Jill >>

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Guest guest

Are both of you eating four-five-six small meals a day?? I know, that's

about the hardest thing in the world to plan for and actually execute. Try

as I might, I don't seem to be able to go much further than three... But at

least that's a lot better than the ONE that I was used to, if that. I know

it's especially hard if food makes one nauseous or sick, but it's so

important.

Do you suffer from seizures? The last one I had was extreme enough to scare

me into taking better care of my body. I thrashed around my apartment for

almost two hours before the woman upstairs finally called 911. I couldn't

speak, I couldn't pick up the phone - the room was spinning so rapidly that I

couldn't stay on my feet, heck I couldn't even crawl... I was just so

upside-down. I managed to knock the phone off the hook, but then all I could

manage to do with it was to push it against the wall with my chin a couple of

times. Finally I had to wriggle over to a dresser and use my feet to try

knocking it over... Couldn't do that, but it made enough noise banging into

the wall that the neighbor got alarmed and called 911. Thank God she did,

I'd have died. In fact the guys from the ambulance, once they gave me some

glucose, said that it was a miracle that I had enough strength to go on for

two hours as it was - they'd neither one seen anybody in a diabetic

hypoglycemic episode stay conscious that long without going comatose... then

I'd had been cooked, as my partner was out of town for the weekend, and he'd

have just had to find me on the bedroom floor two days later... It was pretty

scary, still is. Thankfully, I started to take the diabetes more seriously

after that, and soon learned a great deal more about my body and what it

needs. I don't honor it all the time, not even close, but I'm a lot better

than I was at that time.

Unfortunately, Gail, Diabetes (as you well know) is just a part of the cross

that most of us - many of us - with CP have to carry. It was incredibly

brave of you to go through the transplant surgery if you had diabetes - I'm

sorry, was that the case? I know I shouldn't assume. In fact I'd love to

know if you were diabetic BEFORE the surgery or not, or if the diabetes is a

result of the surgery.

I so desperately would love to have the pancreatectomy and islet cell

transplant, but I'm end-stage CP and have been diabetic for some time, so I'm

guessing that my islet count is near ZERO, so I haven't pursued it - I keep

hoping for some sort of breakthrough that will make the surgery a better

choice for we diabetics that won't just automatically leave us brittle. Some

would say I'm being naive and overly optimistic. It gives me something to hope

for.

I experience the same with exercise - I have to ALWAYS take along juice or

milk. (If milk, I tend to freeze about 1/3 bottle of water, then pour the

cold milk over it so that it stays cold - it's not bad, and it does the

trick!)... Plus, my gym bag is never short of candy bars, hard candy, peanut

butter crackers, etc. Works well enough that I've only had one major problem

while exercising, and that was before I was so well-prepared.

Had to have my tennis partner drive me home ASAP so I could get something in

my system, and I locked my keys in my trunk that day. What a terrible

day THAT turned out to be. Thankfully, all worked out in the end. Haha.

Here I am, anyway.

Good luck Ladies, God bless.

Peace,

Terry in KC

<< Jill,

I have experienced significant hypoglycemia since I had pancreatitis. I have

been severely symptomatic. When I has on TPN I had to be careful when

coming off the infusion because my blood sugar would drop to the 32 range.

Since I have been able to eat I have to be careful about eating a balanced

diet and wait the exercise. I have

to carry with me candy for some kind of agent to increase my blood sugar. I

can get hypoglycemic out of the blue and need sugar.

I was not this way before I had pancreatitis not to this extreme.

I have since had a auto islet cell transplant and pancreatectomy, the hype

glycemia is not any better. I still need to carry candy with me and get more

hypoglycemic with exercise.

gail

jgecker wrote:

> Hi, friends,

>

> I know that many of you suffer from diabetes as a result of the

pancreatitis. But, do any of you have hypoglycemia. I think that I do. I just

had an 5 hour oral glucose tolerance test. From what I've seen on the

internet, my results seem to follow the pattern. I was within normal range

for hours 1 and 2 but, by hour 3, I was low at

> 55 mg/dl. So, I'm guessing that I'm now hypoglycemic, tho when my doctor's

nurse called with the results she said it was " borderline low " . From what

I've read it's definitely hypoglycemia.

>

> Any light that can be shed on this would be greatly appreciated.

>

> You guys are the best. Thanks so much.

>

> Jill >>

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Guest guest

Are both of you eating four-five-six small meals a day?? I know, that's

about the hardest thing in the world to plan for and actually execute. Try

as I might, I don't seem to be able to go much further than three... But at

least that's a lot better than the ONE that I was used to, if that. I know

it's especially hard if food makes one nauseous or sick, but it's so

important.

Do you suffer from seizures? The last one I had was extreme enough to scare

me into taking better care of my body. I thrashed around my apartment for

almost two hours before the woman upstairs finally called 911. I couldn't

speak, I couldn't pick up the phone - the room was spinning so rapidly that I

couldn't stay on my feet, heck I couldn't even crawl... I was just so

upside-down. I managed to knock the phone off the hook, but then all I could

manage to do with it was to push it against the wall with my chin a couple of

times. Finally I had to wriggle over to a dresser and use my feet to try

knocking it over... Couldn't do that, but it made enough noise banging into

the wall that the neighbor got alarmed and called 911. Thank God she did,

I'd have died. In fact the guys from the ambulance, once they gave me some

glucose, said that it was a miracle that I had enough strength to go on for

two hours as it was - they'd neither one seen anybody in a diabetic

hypoglycemic episode stay conscious that long without going comatose... then

I'd had been cooked, as my partner was out of town for the weekend, and he'd

have just had to find me on the bedroom floor two days later... It was pretty

scary, still is. Thankfully, I started to take the diabetes more seriously

after that, and soon learned a great deal more about my body and what it

needs. I don't honor it all the time, not even close, but I'm a lot better

than I was at that time.

Unfortunately, Gail, Diabetes (as you well know) is just a part of the cross

that most of us - many of us - with CP have to carry. It was incredibly

brave of you to go through the transplant surgery if you had diabetes - I'm

sorry, was that the case? I know I shouldn't assume. In fact I'd love to

know if you were diabetic BEFORE the surgery or not, or if the diabetes is a

result of the surgery.

I so desperately would love to have the pancreatectomy and islet cell

transplant, but I'm end-stage CP and have been diabetic for some time, so I'm

guessing that my islet count is near ZERO, so I haven't pursued it - I keep

hoping for some sort of breakthrough that will make the surgery a better

choice for we diabetics that won't just automatically leave us brittle. Some

would say I'm being naive and overly optimistic. It gives me something to hope

for.

I experience the same with exercise - I have to ALWAYS take along juice or

milk. (If milk, I tend to freeze about 1/3 bottle of water, then pour the

cold milk over it so that it stays cold - it's not bad, and it does the

trick!)... Plus, my gym bag is never short of candy bars, hard candy, peanut

butter crackers, etc. Works well enough that I've only had one major problem

while exercising, and that was before I was so well-prepared.

Had to have my tennis partner drive me home ASAP so I could get something in

my system, and I locked my keys in my trunk that day. What a terrible

day THAT turned out to be. Thankfully, all worked out in the end. Haha.

Here I am, anyway.

Good luck Ladies, God bless.

Peace,

Terry in KC

<< Jill,

I have experienced significant hypoglycemia since I had pancreatitis. I have

been severely symptomatic. When I has on TPN I had to be careful when

coming off the infusion because my blood sugar would drop to the 32 range.

Since I have been able to eat I have to be careful about eating a balanced

diet and wait the exercise. I have

to carry with me candy for some kind of agent to increase my blood sugar. I

can get hypoglycemic out of the blue and need sugar.

I was not this way before I had pancreatitis not to this extreme.

I have since had a auto islet cell transplant and pancreatectomy, the hype

glycemia is not any better. I still need to carry candy with me and get more

hypoglycemic with exercise.

gail

jgecker wrote:

> Hi, friends,

>

> I know that many of you suffer from diabetes as a result of the

pancreatitis. But, do any of you have hypoglycemia. I think that I do. I just

had an 5 hour oral glucose tolerance test. From what I've seen on the

internet, my results seem to follow the pattern. I was within normal range

for hours 1 and 2 but, by hour 3, I was low at

> 55 mg/dl. So, I'm guessing that I'm now hypoglycemic, tho when my doctor's

nurse called with the results she said it was " borderline low " . From what

I've read it's definitely hypoglycemia.

>

> Any light that can be shed on this would be greatly appreciated.

>

> You guys are the best. Thanks so much.

>

> Jill >>

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Guest guest

Jill,

I have experienced significant hypoglycemia since I had pancreatitis. I have

been severely symptomatic. When I has on TPN I had to be careful when coming

off the infusion because my blood sugar would drop to the 32 range. Since I

have been able to eat I have to be careful about eating a balanced diet and wait

the exercise. I have

to carry with me candy for some kind of agent to increase my blood sugar. I can

get hypoglycemic out of the blue and need sugar.

I was not this way before I had pancreatitis not to this extreme.

I have since had a auto islet cell transplant and pancreatectomy, the hype

glycemia is not any better. I still need to carry candy with me and get more

hypoglycemic with exercise.

gail

jgecker wrote:

> Hi, friends,

>

> I know that many of you suffer from diabetes as a result of the pancreatitis.

But, do any of you have hypoglycemia. I think that I do. I just had an 5 hour

oral glucose tolerance test. From what I've seen on the internet, my results

seem to follow the pattern. I was within normal range for hours 1 and 2 but, by

hour 3, I was low at

> 55 mg/dl. So, I'm guessing that I'm now hypoglycemic, tho when my doctor's

nurse called with the results she said it was " borderline low " . From what I've

read it's definitely hypoglycemia.

>

> Any light that can be shed on this would be greatly appreciated.

>

> You guys are the best. Thanks so much.

>

> Jill

>

>

Link to comment
Share on other sites

Guest guest

Jill,

I have experienced significant hypoglycemia since I had pancreatitis. I have

been severely symptomatic. When I has on TPN I had to be careful when coming

off the infusion because my blood sugar would drop to the 32 range. Since I

have been able to eat I have to be careful about eating a balanced diet and wait

the exercise. I have

to carry with me candy for some kind of agent to increase my blood sugar. I can

get hypoglycemic out of the blue and need sugar.

I was not this way before I had pancreatitis not to this extreme.

I have since had a auto islet cell transplant and pancreatectomy, the hype

glycemia is not any better. I still need to carry candy with me and get more

hypoglycemic with exercise.

gail

jgecker wrote:

> Hi, friends,

>

> I know that many of you suffer from diabetes as a result of the pancreatitis.

But, do any of you have hypoglycemia. I think that I do. I just had an 5 hour

oral glucose tolerance test. From what I've seen on the internet, my results

seem to follow the pattern. I was within normal range for hours 1 and 2 but, by

hour 3, I was low at

> 55 mg/dl. So, I'm guessing that I'm now hypoglycemic, tho when my doctor's

nurse called with the results she said it was " borderline low " . From what I've

read it's definitely hypoglycemia.

>

> Any light that can be shed on this would be greatly appreciated.

>

> You guys are the best. Thanks so much.

>

> Jill

>

>

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  • 7 months later...
Guest guest

Laurie-please don't feel that way-this group is here toSUPPORT each other. I

also do not know if you are who they were referring to but i did read all the

posts that were posted about this discussing everyone's level of pain post-op

etc., and I think those that posted as they did realized that how they stated

things came out wrong and they didn't mean to discredit anyone's pain. No

one who lives with chiari could possibly disbelieve pain levels. I guess if

we all seriously looked at the amount of pain we live under before surgury,

during flair-ups, constant headaches-I guess it's a wonder we all get along

and don't have our claws out all the time trying to deal with our own pain.

Hope you're having a good day and will give everyone a second chance.

Liz-RN in Ohio

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Guest guest

Laurie and everyone,

I read all those pain posts, too, while the thread took a lot of

twists and turns, it seems clear that no one ever called anyone

anything, or said anything bad.

This is a great group of very supportive people. In fact, I think it

was that desire to be protective that got this thread going in the

direction it went.

First, someone said that recovery from decompression surgery could be

very painful, and gave a moving example of a particular person's

terrible suffering. Then others talked about great pain, too. Then

someone else thought that the reports of great suffering (real as they

were) might scare newbies or other pre-ops into thinking they

shouldn't take the risk of having surgery, so that person protectively

tried to comfort anyone who might be feeling apprehensive by saying

that most of the time the surgeries turn out just fine. Then a few

more people echoed that sentiment: that it's okay to have surgery,

don't be scared; it's not always unbearably painful, etc.

Along the way, people found slangy shortcuts but they were not saying

mean things about the actual people who had experienced that pain. In

fact, it seemed that they were being sympathetic by pointing out that

no one, including the first person, could be thought of as a w---.

Then someone else (who maybe missed some of the convolutions) wondered

if that comment meant that someone had in fact called the first person

the w word, but really no one had.

Now the person who might be the original story's sufferer has caught

part of the thread and mistakenly thinks someone might have said

something mean -- but they didn't.

We all know that sometimes things hurt more than at other times, and

sometimes people suffer more than others do. But always we are human

beings giving it our best try. This group obviously is here to listen,

comfort, ask, answer, share, and celebrate all the various

developments we experience. Remember, Steve recently called it,

" Walking the Chiarian Road. " It's a journey. Let's continue to hold

hands, shall we?

~Sandy

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Guest guest

Laurie and everyone,

I read all those pain posts, too, while the thread took a lot of

twists and turns, it seems clear that no one ever called anyone

anything, or said anything bad.

This is a great group of very supportive people. In fact, I think it

was that desire to be protective that got this thread going in the

direction it went.

First, someone said that recovery from decompression surgery could be

very painful, and gave a moving example of a particular person's

terrible suffering. Then others talked about great pain, too. Then

someone else thought that the reports of great suffering (real as they

were) might scare newbies or other pre-ops into thinking they

shouldn't take the risk of having surgery, so that person protectively

tried to comfort anyone who might be feeling apprehensive by saying

that most of the time the surgeries turn out just fine. Then a few

more people echoed that sentiment: that it's okay to have surgery,

don't be scared; it's not always unbearably painful, etc.

Along the way, people found slangy shortcuts but they were not saying

mean things about the actual people who had experienced that pain. In

fact, it seemed that they were being sympathetic by pointing out that

no one, including the first person, could be thought of as a w---.

Then someone else (who maybe missed some of the convolutions) wondered

if that comment meant that someone had in fact called the first person

the w word, but really no one had.

Now the person who might be the original story's sufferer has caught

part of the thread and mistakenly thinks someone might have said

something mean -- but they didn't.

We all know that sometimes things hurt more than at other times, and

sometimes people suffer more than others do. But always we are human

beings giving it our best try. This group obviously is here to listen,

comfort, ask, answer, share, and celebrate all the various

developments we experience. Remember, Steve recently called it,

" Walking the Chiarian Road. " It's a journey. Let's continue to hold

hands, shall we?

~Sandy

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Guest guest

If you are overmedicated, you can certainly be hyper post-RAI. It has

been almost a year since I had mine, and I am still hyper at times. I

have noticed it varies with my hormonal cycle, and there are foods that

still make me hyper. About the hair thinning: it can be caused by

being hyper, being hypo, RAI, and can also happen as your body adjusts

to thyroid hormone supplements. I lost about 1/3 of mine, and it has

only recently started growing back. I have a lot of hair that is 1 1/2

inches long! I don't know for sure that REALLY trying to get enough

sleep and taking vitamins helps it, but it sure won't hurt either...

The usual recomendation for labs is TSH, FT4, and if you can get it,

FT3. In a lot of areas, they still do the T3 instead.

Good luck!

-- in Fla.

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  • 2 years later...

My daughtrer (19) was diagnosed with Crohn's disease a year ago and

did not respond to initial treatments by her pediatric GI. Her

symptoms started out a few years ago with abdominal cramps/pain with

occasional bleeding with BM's. The pediatric GI initially thought

she had some polyps (without doing any tests) and told her to eat a

HIGH FIBER diet! A year or so later when the pains and bleeding were

getting worse we returned to him and he decided to do a colonoscopy.

The pics from the colonoscopy showed a few small white spots on the

intestine. We were told that was indicative of Crohn's. He took

biopsies and told us that they came back testing positive for

Crohn's. She finally ended up in the hospital for 2 weeks being given

massive doses of prednisone and finally infusions of Remicaide. She

has been coping somewhat throughout the year (freshman at college)

until recently when her pains and symptoms returned and the GI put

her BACK on prednisone and gave her MORE Remicaide. She found the

SCD diet and BTVC book while researching online and started the diet

about a month ago. She immediately started to feel SOME relief. We

have spent the Christmas holiday cooking SCD and it's been good for

the whole family - we love the recipes! In the meantime we went to

see ANOTHER GI (adult) for a second opinion and to switch from a

pediatric doc to adult doc. This doc did his own colonoscopy and

upper GI scope last week and tells us he doesn't think she has

Crohn's or has ever had it! He looked at the report from the

pediatric GI and disagrees with the original diagnosis. He seems to

think she may have a case of Irritable Bowel (?) or a protien allergy

(?). He wants her to come down of the Prednisone before making a

final diagnosis. So our question is WHAT is wrong - does she have

Crohn's or not. What else would cause her symptoms of abdominal

(extreme low right), some bleeding with soft stools, extreme joint

pain? We are so VERY confused. If one doctor can be wrong, can

two? Do we seek a THIRD opinion? My daughter refuses to go through

any more tests (colonoscopies). She has NEVER experienced extreme D

or weight loss - typical of Crohn's. The diet was helping her (I

think) until this last doctor told her to eat WHATEVER she wants, it

makes no difference! (He looked at the BTVC book and told us that

these fad's are for people that have lost all hope). Can someone

PLEASE give me some advice or encouragement - I am so confused. We

live in the southeastern part of Virginia if anyone can recommend a

good GI that will LISTEN to her (and me!)

Mandy

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Of course, I don't know if she has Crohn's, or has ever had Crohn's. I

think you and your daughter are wise to pay attention to what has worked for

her, which is the SCD. Unfortunately, sometimes doctors don't and will

never understand how SCD can help and heal, and it's up to us to trust our

own judgement and instincts and experience.

Marilyn

leaky gut, low thyroid/adrenal, SCD 3 months

CONFUSED

> My daughtrer (19) was diagnosed with Crohn's disease a year ago and

> did not respond to initial treatments by her pediatric GI. Her

> symptoms started out a few years ago with abdominal cramps/pain with

> occasional bleeding with BM's. The pediatric GI initially thought

> she had some polyps (without doing any tests) and told her to eat a

> HIGH FIBER diet! A year or so later when the pains and bleeding were

> getting worse we returned to him and he decided to do a colonoscopy.

> The pics from the colonoscopy showed a few small white spots on the

> intestine. We were told that was indicative of Crohn's. He took

> biopsies and told us that they came back testing positive for

> Crohn's. She finally ended up in the hospital for 2 weeks being given

> massive doses of prednisone and finally infusions of Remicaide. She

> has been coping somewhat throughout the year (freshman at college)

> until recently when her pains and symptoms returned and the GI put

> her BACK on prednisone and gave her MORE Remicaide. She found the

> SCD diet and BTVC book while researching online and started the diet

> about a month ago. She immediately started to feel SOME relief. We

> have spent the Christmas holiday cooking SCD and it's been good for

> the whole family - we love the recipes! In the meantime we went to

> see ANOTHER GI (adult) for a second opinion and to switch from a

> pediatric doc to adult doc. This doc did his own colonoscopy and

> upper GI scope last week and tells us he doesn't think she has

> Crohn's or has ever had it! He looked at the report from the

> pediatric GI and disagrees with the original diagnosis. He seems to

> think she may have a case of Irritable Bowel (?) or a protien allergy

> (?). He wants her to come down of the Prednisone before making a

> final diagnosis. So our question is WHAT is wrong - does she have

> Crohn's or not. What else would cause her symptoms of abdominal

> (extreme low right), some bleeding with soft stools, extreme joint

> pain? We are so VERY confused. If one doctor can be wrong, can

> two? Do we seek a THIRD opinion? My daughter refuses to go through

> any more tests (colonoscopies). She has NEVER experienced extreme D

> or weight loss - typical of Crohn's. The diet was helping her (I

> think) until this last doctor told her to eat WHATEVER she wants, it

> makes no difference! (He looked at the BTVC book and told us that

> these fad's are for people that have lost all hope). Can someone

> PLEASE give me some advice or encouragement - I am so confused. We

> live in the southeastern part of Virginia if anyone can recommend a

> good GI that will LISTEN to her (and me!)

> Mandy

>

>

>

>

>

> For information on the Specific Carbohydrate Diet, please read the book

> _Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

> websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

>

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Was she ever tested for celiac disease? It is the inability to digest

gluten found in wheat, barley and rye. Usually the way to dx is a

blood test that looks for gluten proteins in the blood. If she is

already gf from being on SCD she will not show positive now.

I think my son has ceiliac and was tesed a month ago and of course it

was nevative...he has been gf since february 2005. My daughter is

showing some of the same GI signs so we are testing her too. If she

is postive then I will assume that my son is too.

Also 8 years ago my dad started to have blood in his stool,diarehea

etc and has been to 5 GI since no one knows what his diagnosis is.

Finally they settled on non-specific ulcerative colitis. Which means

they really don't know what it is (and he refuses to try SCD :-(

Hope this helps!

andrea mother of Caden 2 3/4 years old SCD since 2-05 and Emmalynn 13

months old

>

> My daughtrer (19) was diagnosed with Crohn's disease a year ago and

> did not respond to initial treatments by her pediatric GI. Her

> symptoms started out a few years ago with abdominal cramps/pain

with

> occasional bleeding with BM's. The pediatric GI initially thought

> she had some polyps (without doing any tests) and told her to eat a

> HIGH FIBER diet! A year or so later when the pains and bleeding

were

> getting worse we returned to him and he decided to do a

colonoscopy.

> The pics from the colonoscopy showed a few small white spots on the

> intestine. We were told that was indicative of Crohn's. He took

> biopsies and told us that they came back testing positive for

> Crohn's. She finally ended up in the hospital for 2 weeks being

given

> massive doses of prednisone and finally infusions of Remicaide. She

> has been coping somewhat throughout the year (freshman at college)

> until recently when her pains and symptoms returned and the GI put

> her BACK on prednisone and gave her MORE Remicaide. She found the

> SCD diet and BTVC book while researching online and started the

diet

> about a month ago. She immediately started to feel SOME relief.

We

> have spent the Christmas holiday cooking SCD and it's been good for

> the whole family - we love the recipes! In the meantime we went to

> see ANOTHER GI (adult) for a second opinion and to switch from a

> pediatric doc to adult doc. This doc did his own colonoscopy and

> upper GI scope last week and tells us he doesn't think she has

> Crohn's or has ever had it! He looked at the report from the

> pediatric GI and disagrees with the original diagnosis. He seems

to

> think she may have a case of Irritable Bowel (?) or a protien

allergy

> (?). He wants her to come down of the Prednisone before making a

> final diagnosis. So our question is WHAT is wrong - does she have

> Crohn's or not. What else would cause her symptoms of abdominal

> (extreme low right), some bleeding with soft stools, extreme joint

> pain? We are so VERY confused. If one doctor can be wrong, can

> two? Do we seek a THIRD opinion? My daughter refuses to go

through

> any more tests (colonoscopies). She has NEVER experienced extreme

D

> or weight loss - typical of Crohn's. The diet was helping her (I

> think) until this last doctor told her to eat WHATEVER she wants,

it

> makes no difference! (He looked at the BTVC book and told us that

> these fad's are for people that have lost all hope). Can someone

> PLEASE give me some advice or encouragement - I am so confused. We

> live in the southeastern part of Virginia if anyone can recommend a

> good GI that will LISTEN to her (and me!)

> Mandy

>

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