Re: Pain and nausea, causes unknown!!

[Guest guest]

Cheryl, you could not have said it better. Thank you for the advise. Wishing you all the best to and hopefully some relief.

At Your Service,

Stevie Lynn Gedgaudas-OStos

[Guest guest]

Probiotics replace the good

bacteria in the gut that your antibiotics kill off. While they are usually the

same kind of bacteria found in live culture yogurt, there’s a lot more of them

in probiotic capsules.

Nita

> Does it

help? What does it do? No one could insult me as I will take any advise to help

my son feel better.

[Guest guest]

Probiotics replace the good

bacteria in the gut that your antibiotics kill off. While they are usually the

same kind of bacteria found in live culture yogurt, there’s a lot more of them

in probiotic capsules.

Nita

> Does it

help? What does it do? No one could insult me as I will take any advise to help

my son feel better.

[Guest guest]

Hi, all. I'm so sorry to hear about the troubles some of you have been having

with pain and nausea. I have major problems with nausea, so I can empathize. I

also have problems with abdominal pain and my joints. I sort of feel like I

have a severe flu all the time and everything just aches horribly. Is anyone

else finding that?

I don't know of anything that can help with the joints/aching, but for nausea

maybe I can help. I haven't had a lot that worked for me, but here are some

suggestions that have worked wonders for others: Promethazine, crystalized

ginger (you can find it at health food stores like Trader Joes or on-line),

ginger tea, scopolamide patch, sometimes lollipops help and there are some made

just for nausea. They're marketed mainly to pregnant women, but anyone can use

them. One other thing that's been recommended is to not eat large meals but

instead very tiny ones 6 times a day. Also, they don't advise drinking with a

meal as sometimes that can cause issues. They want me to make sure I'm

hydrated, but if I can eat a meal without drinking, the nutritionists/GIs would

like me to do that. (It's really hard though for some reason).

I don't know how severe the nausea/pain is that some of you are experiencing,

but for what it's worth, I'd probably have a GI check it out if at all possible.

It took them over a year to find, but the doctors finally discovered that I have

something called Gastroparesis which explained the nausea/stomach pain in my

case. The doctors use a stomach emptying test to determine if a patient does

have this. They basically make you eat some radioactive eggs and toast with

butter and then do scans every few hours (over 24 in my case) to see how the

food is progressing through your system. I will state that none of my GI docs

have ever seen a Gastroparesis patient with PSC and none of my PSC docs have

ever seen a PSC patient with Gastroparesis. So, the odds are slim that that

could be what's causing the problems you all are dealing with, but I thought it

was worth a mention.

Hope this helps!

Sandi in VA

[Guest guest]

Hi, all. I'm so sorry to hear about the troubles some of you have been having

with pain and nausea. I have major problems with nausea, so I can empathize. I

also have problems with abdominal pain and my joints. I sort of feel like I

have a severe flu all the time and everything just aches horribly. Is anyone

else finding that?

I don't know of anything that can help with the joints/aching, but for nausea

maybe I can help. I haven't had a lot that worked for me, but here are some

suggestions that have worked wonders for others: Promethazine, crystalized

ginger (you can find it at health food stores like Trader Joes or on-line),

ginger tea, scopolamide patch, sometimes lollipops help and there are some made

just for nausea. They're marketed mainly to pregnant women, but anyone can use

them. One other thing that's been recommended is to not eat large meals but

instead very tiny ones 6 times a day. Also, they don't advise drinking with a

meal as sometimes that can cause issues. They want me to make sure I'm

hydrated, but if I can eat a meal without drinking, the nutritionists/GIs would

like me to do that. (It's really hard though for some reason).

I don't know how severe the nausea/pain is that some of you are experiencing,

but for what it's worth, I'd probably have a GI check it out if at all possible.

It took them over a year to find, but the doctors finally discovered that I have

something called Gastroparesis which explained the nausea/stomach pain in my

case. The doctors use a stomach emptying test to determine if a patient does

have this. They basically make you eat some radioactive eggs and toast with

butter and then do scans every few hours (over 24 in my case) to see how the

food is progressing through your system. I will state that none of my GI docs

have ever seen a Gastroparesis patient with PSC and none of my PSC docs have

ever seen a PSC patient with Gastroparesis. So, the odds are slim that that

could be what's causing the problems you all are dealing with, but I thought it

was worth a mention.

Hope this helps!

Sandi in VA

[Guest guest]

Stevie - I have asked my lovely wife Becky to jump in as she has the details but I would say to talk to your GI doc on the probiotic issue. Some good bacteria (pro-biotics) are targeted to certain "bad" bacteria in the gut. Plus they can help with overall digestive and overall health.We have found the Jordan Rubin books to be helpful, specifically one called "The Maker's Diet" for our son and family. It helps with understanding the importance of quality food to our health and health problems and will change your paradigm on what is 'food'. The specific probiotic we are using for our son (who has UC and PSC) and our daughter who has Celiac I will let my wife explain.Best,Sent from my Verizon Wireless BlackBerryFrom: Stevie Gedgaudas Date: Fri, 20 Feb 2009 11:46:11 -0600To: < >Subject: Re: Pain and nausea, causes unknown!! Probiotics? Dr. never mentioned those> Does it help? What does it do? No one could insult me as I will take any advise to help my son feel better. As far as nutrition, we are talking to our counselor on Monday and nutrition guidance is on the agenda for Tyler that day. At Your Service, Stevie Lynn Gedgaudas OStos sgedgaud (AT) applevac (DOT) comdvardell2 (AT) gmail (DOT) com dvardell2 (AT) gmail (DOT) com Sent by: 02/20/2009 11:32 AMPlease respond to To cc SubjectRe: Pain and nausea, causes unknown!! Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son. Best,Sent from my Verizon Wireless BlackBerryFrom: Stevie Gedgaudas Date: Fri, 20 Feb 2009 10:54:25 -0600 To: < > Subject: Re: Pain and nausea, causes unknown!!I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening... At Your Service, Stevie Lynn Gedgaudas-OStos Customer Care Senior Supervisor sgedgaud (AT) applevac (DOT) comamifox73 (AT) yahoo (DOT) com amifox73 (AT) yahoo (DOT) com Sent by: 02/20/2009 10:13 AM Please respond to To cc Subject Re: Pain and nausea, causes unknown!! How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the timeSent from my BlackBerry Smartphone provided by AlltelFrom: " joseph.gwynn " Date: Fri, 20 Feb 2009 15:55:00 -0000 To: < > Subject: Pain and nausea, causes unknown!!My daughter had been experiencing a lot of pain and nausea especially after eating (even though she eats like a bird). Then one day last week she woke up in pain and it never subsided even after taking a whole lot of pain killers (which usually take the edge off). After about 7 hours it subsided. To cut a long story short, a few days later she had the same thing, and it would not go away. We took her to hospital where they did a CT scan and ultra sound, her TIPS was fine, and they could see nothing that should be causing all the pain??? They did an ERCP and thought there may be some sort of blockage, but they just removed some sludge and a small stone not enough to be causing it???? So, where do we go from here???? They will release her from hospital with no diagnosis, and no idea how to treat this pain??? Has any one else out there experienced this, and if so what was causing it and how did you treat it They put a patch on her arm yesterday to try and help with the nausea?? Any advice, suggestions will be welcome. Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

[Guest guest]

Stevie - I have asked my lovely wife Becky to jump in as she has the details but I would say to talk to your GI doc on the probiotic issue. Some good bacteria (pro-biotics) are targeted to certain "bad" bacteria in the gut. Plus they can help with overall digestive and overall health.We have found the Jordan Rubin books to be helpful, specifically one called "The Maker's Diet" for our son and family. It helps with understanding the importance of quality food to our health and health problems and will change your paradigm on what is 'food'. The specific probiotic we are using for our son (who has UC and PSC) and our daughter who has Celiac I will let my wife explain.Best,Sent from my Verizon Wireless BlackBerryFrom: Stevie Gedgaudas Date: Fri, 20 Feb 2009 11:46:11 -0600To: < >Subject: Re: Pain and nausea, causes unknown!! Probiotics? Dr. never mentioned those> Does it help? What does it do? No one could insult me as I will take any advise to help my son feel better. As far as nutrition, we are talking to our counselor on Monday and nutrition guidance is on the agenda for Tyler that day. At Your Service, Stevie Lynn Gedgaudas OStos sgedgaud (AT) applevac (DOT) comdvardell2 (AT) gmail (DOT) com dvardell2 (AT) gmail (DOT) com Sent by: 02/20/2009 11:32 AMPlease respond to To cc SubjectRe: Pain and nausea, causes unknown!! Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son. Best,Sent from my Verizon Wireless BlackBerryFrom: Stevie Gedgaudas Date: Fri, 20 Feb 2009 10:54:25 -0600 To: < > Subject: Re: Pain and nausea, causes unknown!!I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening... At Your Service, Stevie Lynn Gedgaudas-OStos Customer Care Senior Supervisor sgedgaud (AT) applevac (DOT) comamifox73 (AT) yahoo (DOT) com amifox73 (AT) yahoo (DOT) com Sent by: 02/20/2009 10:13 AM Please respond to To cc Subject Re: Pain and nausea, causes unknown!! How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the timeSent from my BlackBerry Smartphone provided by AlltelFrom: " joseph.gwynn " Date: Fri, 20 Feb 2009 15:55:00 -0000 To: < > Subject: Pain and nausea, causes unknown!!My daughter had been experiencing a lot of pain and nausea especially after eating (even though she eats like a bird). Then one day last week she woke up in pain and it never subsided even after taking a whole lot of pain killers (which usually take the edge off). After about 7 hours it subsided. To cut a long story short, a few days later she had the same thing, and it would not go away. We took her to hospital where they did a CT scan and ultra sound, her TIPS was fine, and they could see nothing that should be causing all the pain??? They did an ERCP and thought there may be some sort of blockage, but they just removed some sludge and a small stone not enough to be causing it???? So, where do we go from here???? They will release her from hospital with no diagnosis, and no idea how to treat this pain??? Has any one else out there experienced this, and if so what was causing it and how did you treat it They put a patch on her arm yesterday to try and help with the nausea?? Any advice, suggestions will be welcome. Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

[Guest guest]

Stevie - I have asked my lovely wife Becky to jump in as she has the details but I would say to talk to your GI doc on the probiotic issue. Some good bacteria (pro-biotics) are targeted to certain "bad" bacteria in the gut. Plus they can help with overall digestive and overall health.We have found the Jordan Rubin books to be helpful, specifically one called "The Maker's Diet" for our son and family. It helps with understanding the importance of quality food to our health and health problems and will change your paradigm on what is 'food'. The specific probiotic we are using for our son (who has UC and PSC) and our daughter who has Celiac I will let my wife explain.Best,Sent from my Verizon Wireless BlackBerryFrom: Stevie Gedgaudas Date: Fri, 20 Feb 2009 11:46:11 -0600To: < >Subject: Re: Pain and nausea, causes unknown!! Probiotics? Dr. never mentioned those> Does it help? What does it do? No one could insult me as I will take any advise to help my son feel better. As far as nutrition, we are talking to our counselor on Monday and nutrition guidance is on the agenda for Tyler that day. At Your Service, Stevie Lynn Gedgaudas OStos sgedgaud (AT) applevac (DOT) comdvardell2 (AT) gmail (DOT) com dvardell2 (AT) gmail (DOT) com Sent by: 02/20/2009 11:32 AMPlease respond to To cc SubjectRe: Pain and nausea, causes unknown!! Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son. Best,Sent from my Verizon Wireless BlackBerryFrom: Stevie Gedgaudas Date: Fri, 20 Feb 2009 10:54:25 -0600 To: < > Subject: Re: Pain and nausea, causes unknown!!I feel for you all. My son age 10 has nausea all the time and abdominal pain. His GGT recently is 189 and I believe under 60 is normal. Our doctor says because the rest of the LFTs are within normal range even though his Sed rate is 60, that no action is needed. But, he is suffering. Plus, his poor feet and joints are sore and week , he walks so slow and is so clutsy. But, I'm told this is not the PSC.... He is on Urso which has helped but something is not right at this time and no one can seem to ease his discomfort.. I need suggestions too!!! thanks all for listening... At Your Service, Stevie Lynn Gedgaudas-OStos Customer Care Senior Supervisor sgedgaud (AT) applevac (DOT) comamifox73 (AT) yahoo (DOT) com amifox73 (AT) yahoo (DOT) com Sent by: 02/20/2009 10:13 AM Please respond to To cc Subject Re: Pain and nausea, causes unknown!! How enlarged is her liver? My son went thru a lot of this but his liver and spleen were HUGE. So they were putting so much pressure on his stomach it wouldn't work properly and he had lots of pain all the timeSent from my BlackBerry Smartphone provided by AlltelFrom: " joseph.gwynn " Date: Fri, 20 Feb 2009 15:55:00 -0000 To: < > Subject: Pain and nausea, causes unknown!!My daughter had been experiencing a lot of pain and nausea especially after eating (even though she eats like a bird). Then one day last week she woke up in pain and it never subsided even after taking a whole lot of pain killers (which usually take the edge off). After about 7 hours it subsided. To cut a long story short, a few days later she had the same thing, and it would not go away. We took her to hospital where they did a CT scan and ultra sound, her TIPS was fine, and they could see nothing that should be causing all the pain??? They did an ERCP and thought there may be some sort of blockage, but they just removed some sludge and a small stone not enough to be causing it???? So, where do we go from here???? They will release her from hospital with no diagnosis, and no idea how to treat this pain??? Has any one else out there experienced this, and if so what was causing it and how did you treat it They put a patch on her arm yesterday to try and help with the nausea?? Any advice, suggestions will be welcome. Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

[Guest guest]

>Everyone else has really good tips such as probiotics--my GI told me

to find them in organic yogurt, like Stonyfield's, which actually

tastes really good. Definitely see your GI as well to run tests and

bloodwork. For nausea, I eat ginger candies, you can find them by the

bag at any mom and pop fruit store; ginger ale may also help.

Peppermints help, too.

Sikeea

> Probiotics replace the good bacteria in the gut that your antibiotics

kill

> off. While they are usually the same kind of bacteria found in live

culture

> yogurt, there's a lot more of them in probiotic capsules.

>

>

>

> Nita

>

> > Does it help? What does it do? No one could insult me as I will

take any

> advise to help my son feel better.

>

[Guest guest]

>Everyone else has really good tips such as probiotics--my GI told me

to find them in organic yogurt, like Stonyfield's, which actually

tastes really good. Definitely see your GI as well to run tests and

bloodwork. For nausea, I eat ginger candies, you can find them by the

bag at any mom and pop fruit store; ginger ale may also help.

Peppermints help, too.

Sikeea

> Probiotics replace the good bacteria in the gut that your antibiotics

kill

> off. While they are usually the same kind of bacteria found in live

culture

> yogurt, there's a lot more of them in probiotic capsules.

>

>

>

> Nita

>

> > Does it help? What does it do? No one could insult me as I will

take any

> advise to help my son feel better.

>

[Guest guest]

>Everyone else has really good tips such as probiotics--my GI told me

to find them in organic yogurt, like Stonyfield's, which actually

tastes really good. Definitely see your GI as well to run tests and

bloodwork. For nausea, I eat ginger candies, you can find them by the

bag at any mom and pop fruit store; ginger ale may also help.

Peppermints help, too.

Sikeea

> Probiotics replace the good bacteria in the gut that your antibiotics

kill

> off. While they are usually the same kind of bacteria found in live

culture

> yogurt, there's a lot more of them in probiotic capsules.

>

>

>

> Nita

>

> > Does it help? What does it do? No one could insult me as I will

take any

> advise to help my son feel better.

>

[Guest guest]

Hi my name is Casey dx with psc 06, I have deen dealing with something the same as your daughter. Is the pain in middle of her chest about two inches from the center on the right side.

Pain and nausea, causes unknown!!My daughter had been experiencing a lot of pain and nausea especially after eating (even though she eats like a bird). Then one day last week she woke up in pain and it never subsided even after taking a whole lot of pain killers (which usually take the edge off). After about 7 hours it subsided. To cut a long story short, a few days later she had the same thing, and it would not go away. We took her to hospital where they did a CT scan and ultra sound, her TIPS was fine, and they could see nothing that should be causing all the pain??? They did an ERCP and thought there may be some sort of blockage, but they just removed some sludge and a small stone not enough to be causing it???? So, where do we go from here???? They will release her from hospital with no diagnosis, and no idea how to treat this pain??? Has any one else out there experienced this, and if so what was causing it and how did you treat it They put a patch on her arm yesterday to try and help with the nausea?? Any advice, suggestions will be welcome. Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

[Guest guest]

This may sound weird but is the pain more toward the left or right

side of her chest? If it is toward the left it sounds very similar

to some of what I expeience when I get costal chondriatis (proabaly

spelled wrong) It took a really long time to figure this out but

this is when the cartlege between your ribs swells and becomes

irritated. When the lower rib catlege is involved for me and I eat

the pressure from my stomach on my ribs would cause pain and the

presure from the swelling would make me nauseaus.

When the upper ribs are involved it feels like a heart attack!!

Don't know if this is what is going on but I thought I would through

it out there

>

> > Hi, My name is Enid Cresson. I was diagnosed in August, 2008

with

> > PSC. I have been ill with a low grade fever and extreme fatigue

since

> > June, 2005. At the time I received my diagnosis, I was also

diagnosed

> > with Graves disease. All the doctors I have seen have not been

very

> > helpful in explaining things to me or being able to address my

> > fatigue. I'd like to find out if anyone has been able to treat

there

> > fatigue with success. Also my PSC has started mostly in the Bilary

> > Tree on the left side and don't know if the progression will go

to my

> > liver sooner than if it had started in the CBD. Lately, my

cholestrol

> > has become high and would like to know if that is because of the

> > disease in the ducts or the liver. I'm quite thin and can't

believe

> > that my cholesterol is high. Thanks.

> >

> >

> >

>

>

>

> --

> Ian Cribb P.Eng.

>

>

> I've read some of the blog posts (thanks so much for the addresses

everyone) and it's helped a bunch to know a bit more about what's

coming my way. I now have the tatoos on my chest for radiation

therapy to be pointed at and I'm actually just waiting to go in for

my first treatment Monday morning. I'll be doing 5FU chemo pills 2x a

day (I think) and those will be starting Monday too. Does anyone here

have any suggestions for things I can do to keep my spirits (and my

energy level!) up for the 6 weeks I'll be doing this before

exploratory surgery to find out if it worked well?

>

> Love and light to you all,

>

> -leo

>

>

>

>

> Stevie - sorry to hear your son is having those issues. We have a

son (almost 8) with some similar things. At the risk of sounding

insulting: have you all looked at dietary things like reducing sugar,

high fats, sodium and adding a pro-biotic? This seems to be helping

our son.

>

> Best,

> Sent from my Verizon Wireless BlackBerry

>

> Pain and nausea, causes

unknown!!

>

>

>

>

>

> My daughter had been experiencing a lot of pain and nausea

especially

> after eating (even though she eats like a bird). Then one day

last

> week she woke up in pain and it never subsided even after taking

a

> whole lot of pain killers (which usually take the edge off).

After

> about 7 hours it

subsided.

>

> To cut a long story short, a few days later she had the same

thing,

> and it would not go away. We took her to hospital where they did a

CT

> scan and ultra sound, her TIPS was fine, and they could see

nothing

> that should be causing all the

pain???

>

> They did an ERCP and thought there may be some sort of blockage,

but

> they just removed some sludge and a small stone not enough to

be

> causing it???? So, where do we go from here???? They will release

her

> from hospital with no diagnosis, and no idea how to treat this

pain???

> Has any one else out there experienced this, and if so what

was

> causing it and how did you treat it They put a patch on her

arm

> yesterday to try and help with the nausea?? Any advice,

suggestions

> will be

welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

[Guest guest]

This may sound weird but is the pain more toward the left or right

side of her chest? If it is toward the left it sounds very similar

to some of what I expeience when I get costal chondriatis (proabaly

spelled wrong) It took a really long time to figure this out but

this is when the cartlege between your ribs swells and becomes

irritated. When the lower rib catlege is involved for me and I eat

the pressure from my stomach on my ribs would cause pain and the

presure from the swelling would make me nauseaus.

When the upper ribs are involved it feels like a heart attack!!

Don't know if this is what is going on but I thought I would through

it out there

>

> > Hi, My name is Enid Cresson. I was diagnosed in August, 2008

with

> > PSC. I have been ill with a low grade fever and extreme fatigue

since

> > June, 2005. At the time I received my diagnosis, I was also

diagnosed

> > with Graves disease. All the doctors I have seen have not been

very

> > helpful in explaining things to me or being able to address my

> > fatigue. I'd like to find out if anyone has been able to treat

there

> > fatigue with success. Also my PSC has started mostly in the Bilary

> > Tree on the left side and don't know if the progression will go

to my

> > liver sooner than if it had started in the CBD. Lately, my

cholestrol

> > has become high and would like to know if that is because of the

> > disease in the ducts or the liver. I'm quite thin and can't

believe

> > that my cholesterol is high. Thanks.

> >

> >

> >

>

>

>

> --

> Ian Cribb P.Eng.

>

>

> I've read some of the blog posts (thanks so much for the addresses

everyone) and it's helped a bunch to know a bit more about what's

coming my way. I now have the tatoos on my chest for radiation

therapy to be pointed at and I'm actually just waiting to go in for

my first treatment Monday morning. I'll be doing 5FU chemo pills 2x a

day (I think) and those will be starting Monday too. Does anyone here

have any suggestions for things I can do to keep my spirits (and my

energy level!) up for the 6 weeks I'll be doing this before

exploratory surgery to find out if it worked well?

>

> Love and light to you all,

>

> -leo

>

>

>

>

> Stevie - sorry to hear your son is having those issues. We have a

son (almost 8) with some similar things. At the risk of sounding

insulting: have you all looked at dietary things like reducing sugar,

high fats, sodium and adding a pro-biotic? This seems to be helping

our son.

>

> Best,

> Sent from my Verizon Wireless BlackBerry

>

> Pain and nausea, causes

unknown!!

>

>

>

>

>

> My daughter had been experiencing a lot of pain and nausea

especially

> after eating (even though she eats like a bird). Then one day

last

> week she woke up in pain and it never subsided even after taking

a

> whole lot of pain killers (which usually take the edge off).

After

> about 7 hours it

subsided.

>

> To cut a long story short, a few days later she had the same

thing,

> and it would not go away. We took her to hospital where they did a

CT

> scan and ultra sound, her TIPS was fine, and they could see

nothing

> that should be causing all the

pain???

>

> They did an ERCP and thought there may be some sort of blockage,

but

> they just removed some sludge and a small stone not enough to

be

> causing it???? So, where do we go from here???? They will release

her

> from hospital with no diagnosis, and no idea how to treat this

pain???

> Has any one else out there experienced this, and if so what

was

> causing it and how did you treat it They put a patch on her

arm

> yesterday to try and help with the nausea?? Any advice,

suggestions

> will be

welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

[Guest guest]

This may sound weird but is the pain more toward the left or right

side of her chest? If it is toward the left it sounds very similar

to some of what I expeience when I get costal chondriatis (proabaly

spelled wrong) It took a really long time to figure this out but

this is when the cartlege between your ribs swells and becomes

irritated. When the lower rib catlege is involved for me and I eat

the pressure from my stomach on my ribs would cause pain and the

presure from the swelling would make me nauseaus.

When the upper ribs are involved it feels like a heart attack!!

Don't know if this is what is going on but I thought I would through

it out there

>

> > Hi, My name is Enid Cresson. I was diagnosed in August, 2008

with

> > PSC. I have been ill with a low grade fever and extreme fatigue

since

> > June, 2005. At the time I received my diagnosis, I was also

diagnosed

> > with Graves disease. All the doctors I have seen have not been

very

> > helpful in explaining things to me or being able to address my

> > fatigue. I'd like to find out if anyone has been able to treat

there

> > fatigue with success. Also my PSC has started mostly in the Bilary

> > Tree on the left side and don't know if the progression will go

to my

> > liver sooner than if it had started in the CBD. Lately, my

cholestrol

> > has become high and would like to know if that is because of the

> > disease in the ducts or the liver. I'm quite thin and can't

believe

> > that my cholesterol is high. Thanks.

> >

> >

> >

>

>

>

> --

> Ian Cribb P.Eng.

>

>

> I've read some of the blog posts (thanks so much for the addresses

everyone) and it's helped a bunch to know a bit more about what's

coming my way. I now have the tatoos on my chest for radiation

therapy to be pointed at and I'm actually just waiting to go in for

my first treatment Monday morning. I'll be doing 5FU chemo pills 2x a

day (I think) and those will be starting Monday too. Does anyone here

have any suggestions for things I can do to keep my spirits (and my

energy level!) up for the 6 weeks I'll be doing this before

exploratory surgery to find out if it worked well?

>

> Love and light to you all,

>

> -leo

>

>

>

>

> Stevie - sorry to hear your son is having those issues. We have a

son (almost 8) with some similar things. At the risk of sounding

insulting: have you all looked at dietary things like reducing sugar,

high fats, sodium and adding a pro-biotic? This seems to be helping

our son.

>

> Best,

> Sent from my Verizon Wireless BlackBerry

>

> Pain and nausea, causes

unknown!!

>

>

>

>

>

> My daughter had been experiencing a lot of pain and nausea

especially

> after eating (even though she eats like a bird). Then one day

last

> week she woke up in pain and it never subsided even after taking

a

> whole lot of pain killers (which usually take the edge off).

After

> about 7 hours it

subsided.

>

> To cut a long story short, a few days later she had the same

thing,

> and it would not go away. We took her to hospital where they did a

CT

> scan and ultra sound, her TIPS was fine, and they could see

nothing

> that should be causing all the

pain???

>

> They did an ERCP and thought there may be some sort of blockage,

but

> they just removed some sludge and a small stone not enough to

be

> causing it???? So, where do we go from here???? They will release

her

> from hospital with no diagnosis, and no idea how to treat this

pain???

> Has any one else out there experienced this, and if so what

was

> causing it and how did you treat it They put a patch on her

arm

> yesterday to try and help with the nausea?? Any advice,

suggestions

> will be

welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

[Guest guest]

Hey, just wondering is the pain on the ribs or under the ribs? Cheryl

Re: Pain and nausea, causes unknown!!

> Hi my name is Casey dx with psc 06, I have deen dealing with something the

same as your daughter. Is the pain in middle of her chest about two inches

from the center on the right side.

>

>

> > Has any one else out there experienced this, and if so what was

> causing it and how did you treat it They put a patch on her arm

> yesterday to try and help with the nausea?? Any advice, suggestions

> will be welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

>

>

>

[Guest guest]

Hey, just wondering is the pain on the ribs or under the ribs? Cheryl

Re: Pain and nausea, causes unknown!!

> Hi my name is Casey dx with psc 06, I have deen dealing with something the

same as your daughter. Is the pain in middle of her chest about two inches

from the center on the right side.

>

>

> > Has any one else out there experienced this, and if so what was

> causing it and how did you treat it They put a patch on her arm

> yesterday to try and help with the nausea?? Any advice, suggestions

> will be welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

>

>

>

[Guest guest]

Hey, just wondering is the pain on the ribs or under the ribs? Cheryl

Re: Pain and nausea, causes unknown!!

> Hi my name is Casey dx with psc 06, I have deen dealing with something the

same as your daughter. Is the pain in middle of her chest about two inches

from the center on the right side.

>

>

> > Has any one else out there experienced this, and if so what was

> causing it and how did you treat it They put a patch on her arm

> yesterday to try and help with the nausea?? Any advice, suggestions

> will be welcome.

>

> Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006)

>

>

>

>

[Guest guest]

costal chondritis can be either side of the sternum and all aroud the ribs at

its worst. It most often involves the sternum itself. It is extremely painful as

well and it can flare up and go away. Hope that helps. Cheryl

Re: Pain and nausea, causes unknown!!

> This may sound weird but is the pain more toward the left or right

> side of her chest? If it is toward the left it sounds very similar

> to some of what I expeience when I get costal chondriatis (proabaly

[Guest guest]

costal chondritis can be either side of the sternum and all aroud the ribs at

its worst. It most often involves the sternum itself. It is extremely painful as

well and it can flare up and go away. Hope that helps. Cheryl

Re: Pain and nausea, causes unknown!!

> This may sound weird but is the pain more toward the left or right

> side of her chest? If it is toward the left it sounds very similar

> to some of what I expeience when I get costal chondriatis (proabaly

[Guest guest]

costal chondritis can be either side of the sternum and all aroud the ribs at

its worst. It most often involves the sternum itself. It is extremely painful as

well and it can flare up and go away. Hope that helps. Cheryl

Re: Pain and nausea, causes unknown!!

> This may sound weird but is the pain more toward the left or right

> side of her chest? If it is toward the left it sounds very similar

> to some of what I expeience when I get costal chondriatis (proabaly

[Guest guest]

After many tests that showed nothing and trying many pain medications (including narcotics), there is nothing anyone can do for me. I just have to live with the pain, which I do with varying degrees of success.

[Guest guest]

Oh my goodness, I just had that happen to me over the holidays. I was laying on the couch and when I got up, I had the most excruciating pain I had ever felt in my life. I thought I was having a heart attack, but after a long visit to the ER, the Dr explained that it was just inflammation in the cartilage. I have never heard of anyone else suffering from this until now. Its good to know I'm not alone ) SerbrinaSent via BlackBerry by AT&TFrom: "mdwblaze" Date: Sat, 21 Feb 2009 16:52:25 -0000To: < >Subject: Re: Pain and nausea, causes unknown!! This may sound weird but is the pain more toward the left or right side of her chest? If it is toward the left it sounds very similar to some of what I expeience when I get costal chondriatis (proabaly spelled wrong) It took a really long time to figure this out but this is when the cartlege between your ribs swells and becomes irritated. When the lower rib catlege is involved for me and I eat the pressure from my stomach on my ribs would cause pain and the presure from the swelling would make me nauseaus. When the upper ribs are involved it feels like a heart attack!! Don't know if this is what is going on but I thought I would through it out there > > > Hi, My name is Enid Cresson. I was diagnosed in August, 2008 with > > PSC. I have been ill with a low grade fever and extreme fatigue since > > June, 2005. At the time I received my diagnosis, I was also diagnosed > > with Graves disease. All the doctors I have seen have not been very > > helpful in explaining things to me or being able to address my > > fatigue. I'd like to find out if anyone has been able to treat there > > fatigue with success. Also my PSC has started mostly in the Bilary > > Tree on the left side and don't know if the progression will go to my > > liver sooner than if it had started in the CBD. Lately, my cholestrol > > has become high and would like to know if that is because of the > > disease in the ducts or the liver. I'm quite thin and can't believe > > that my cholesterol is high. Thanks. > > > > > > > > > > -- > Ian Cribb P.Eng. > > > I've read some of the blog posts (thanks so much for the addresses everyone) and it's helped a bunch to know a bit more about what's coming my way. I now have the tatoos on my chest for radiation therapy to be pointed at and I'm actually just waiting to go in for my first treatment Monday morning. I'll be doing 5FU chemo pills 2x a day (I think) and those will be starting Monday too. Does anyone here have any suggestions for things I can do to keep my spirits (and my energy level!) up for the 6 weeks I'll be doing this before exploratory surgery to find out if it worked well? > > Love and light to you all, > > -leo > > > > > Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son. > > Best, > Sent from my Verizon Wireless BlackBerry > > Pain and nausea, causes unknown!! > > > > > > My daughter had been experiencing a lot of pain and nausea especially > after eating (even though she eats like a bird). Then one day last > week she woke up in pain and it never subsided even after taking a > whole lot of pain killers (which usually take the edge off). After > about 7 hours it subsided. > > To cut a long story short, a few days later she had the same thing, > and it would not go away. We took her to hospital where they did a CT > scan and ultra sound, her TIPS was fine, and they could see nothing > that should be causing all the pain??? > > They did an ERCP and thought there may be some sort of blockage, but > they just removed some sludge and a small stone not enough to be > causing it???? So, where do we go from here???? They will release her > from hospital with no diagnosis, and no idea how to treat this pain??? > Has any one else out there experienced this, and if so what was > causing it and how did you treat it They put a patch on her arm > yesterday to try and help with the nausea?? Any advice, suggestions > will be welcome. > > Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006) >

[Guest guest]

Oh my goodness, I just had that happen to me over the holidays. I was laying on the couch and when I got up, I had the most excruciating pain I had ever felt in my life. I thought I was having a heart attack, but after a long visit to the ER, the Dr explained that it was just inflammation in the cartilage. I have never heard of anyone else suffering from this until now. Its good to know I'm not alone ) SerbrinaSent via BlackBerry by AT&TFrom: "mdwblaze" Date: Sat, 21 Feb 2009 16:52:25 -0000To: < >Subject: Re: Pain and nausea, causes unknown!! This may sound weird but is the pain more toward the left or right side of her chest? If it is toward the left it sounds very similar to some of what I expeience when I get costal chondriatis (proabaly spelled wrong) It took a really long time to figure this out but this is when the cartlege between your ribs swells and becomes irritated. When the lower rib catlege is involved for me and I eat the pressure from my stomach on my ribs would cause pain and the presure from the swelling would make me nauseaus. When the upper ribs are involved it feels like a heart attack!! Don't know if this is what is going on but I thought I would through it out there > > > Hi, My name is Enid Cresson. I was diagnosed in August, 2008 with > > PSC. I have been ill with a low grade fever and extreme fatigue since > > June, 2005. At the time I received my diagnosis, I was also diagnosed > > with Graves disease. All the doctors I have seen have not been very > > helpful in explaining things to me or being able to address my > > fatigue. I'd like to find out if anyone has been able to treat there > > fatigue with success. Also my PSC has started mostly in the Bilary > > Tree on the left side and don't know if the progression will go to my > > liver sooner than if it had started in the CBD. Lately, my cholestrol > > has become high and would like to know if that is because of the > > disease in the ducts or the liver. I'm quite thin and can't believe > > that my cholesterol is high. Thanks. > > > > > > > > > > -- > Ian Cribb P.Eng. > > > I've read some of the blog posts (thanks so much for the addresses everyone) and it's helped a bunch to know a bit more about what's coming my way. I now have the tatoos on my chest for radiation therapy to be pointed at and I'm actually just waiting to go in for my first treatment Monday morning. I'll be doing 5FU chemo pills 2x a day (I think) and those will be starting Monday too. Does anyone here have any suggestions for things I can do to keep my spirits (and my energy level!) up for the 6 weeks I'll be doing this before exploratory surgery to find out if it worked well? > > Love and light to you all, > > -leo > > > > > Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son. > > Best, > Sent from my Verizon Wireless BlackBerry > > Pain and nausea, causes unknown!! > > > > > > My daughter had been experiencing a lot of pain and nausea especially > after eating (even though she eats like a bird). Then one day last > week she woke up in pain and it never subsided even after taking a > whole lot of pain killers (which usually take the edge off). After > about 7 hours it subsided. > > To cut a long story short, a few days later she had the same thing, > and it would not go away. We took her to hospital where they did a CT > scan and ultra sound, her TIPS was fine, and they could see nothing > that should be causing all the pain??? > > They did an ERCP and thought there may be some sort of blockage, but > they just removed some sludge and a small stone not enough to be > causing it???? So, where do we go from here???? They will release her > from hospital with no diagnosis, and no idea how to treat this pain??? > Has any one else out there experienced this, and if so what was > causing it and how did you treat it They put a patch on her arm > yesterday to try and help with the nausea?? Any advice, suggestions > will be welcome. > > Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006) >

[Guest guest]

Oh my goodness, I just had that happen to me over the holidays. I was laying on the couch and when I got up, I had the most excruciating pain I had ever felt in my life. I thought I was having a heart attack, but after a long visit to the ER, the Dr explained that it was just inflammation in the cartilage. I have never heard of anyone else suffering from this until now. Its good to know I'm not alone ) SerbrinaSent via BlackBerry by AT&TFrom: "mdwblaze" Date: Sat, 21 Feb 2009 16:52:25 -0000To: < >Subject: Re: Pain and nausea, causes unknown!! This may sound weird but is the pain more toward the left or right side of her chest? If it is toward the left it sounds very similar to some of what I expeience when I get costal chondriatis (proabaly spelled wrong) It took a really long time to figure this out but this is when the cartlege between your ribs swells and becomes irritated. When the lower rib catlege is involved for me and I eat the pressure from my stomach on my ribs would cause pain and the presure from the swelling would make me nauseaus. When the upper ribs are involved it feels like a heart attack!! Don't know if this is what is going on but I thought I would through it out there > > > Hi, My name is Enid Cresson. I was diagnosed in August, 2008 with > > PSC. I have been ill with a low grade fever and extreme fatigue since > > June, 2005. At the time I received my diagnosis, I was also diagnosed > > with Graves disease. All the doctors I have seen have not been very > > helpful in explaining things to me or being able to address my > > fatigue. I'd like to find out if anyone has been able to treat there > > fatigue with success. Also my PSC has started mostly in the Bilary > > Tree on the left side and don't know if the progression will go to my > > liver sooner than if it had started in the CBD. Lately, my cholestrol > > has become high and would like to know if that is because of the > > disease in the ducts or the liver. I'm quite thin and can't believe > > that my cholesterol is high. Thanks. > > > > > > > > > > -- > Ian Cribb P.Eng. > > > I've read some of the blog posts (thanks so much for the addresses everyone) and it's helped a bunch to know a bit more about what's coming my way. I now have the tatoos on my chest for radiation therapy to be pointed at and I'm actually just waiting to go in for my first treatment Monday morning. I'll be doing 5FU chemo pills 2x a day (I think) and those will be starting Monday too. Does anyone here have any suggestions for things I can do to keep my spirits (and my energy level!) up for the 6 weeks I'll be doing this before exploratory surgery to find out if it worked well? > > Love and light to you all, > > -leo > > > > > Stevie - sorry to hear your son is having those issues. We have a son (almost 8) with some similar things. At the risk of sounding insulting: have you all looked at dietary things like reducing sugar, high fats, sodium and adding a pro-biotic? This seems to be helping our son. > > Best, > Sent from my Verizon Wireless BlackBerry > > Pain and nausea, causes unknown!! > > > > > > My daughter had been experiencing a lot of pain and nausea especially > after eating (even though she eats like a bird). Then one day last > week she woke up in pain and it never subsided even after taking a > whole lot of pain killers (which usually take the edge off). After > about 7 hours it subsided. > > To cut a long story short, a few days later she had the same thing, > and it would not go away. We took her to hospital where they did a CT > scan and ultra sound, her TIPS was fine, and they could see nothing > that should be causing all the pain??? > > They did an ERCP and thought there may be some sort of blockage, but > they just removed some sludge and a small stone not enough to be > causing it???? So, where do we go from here???? They will release her > from hospital with no diagnosis, and no idea how to treat this pain??? > Has any one else out there experienced this, and if so what was > causing it and how did you treat it They put a patch on her arm > yesterday to try and help with the nausea?? Any advice, suggestions > will be welcome. > > Gwynn Mom of Cheryl vasculitis (2005) PSC & UC (2006) >