Re: I'm on Urso, but...(update, still need advice)

[Guest guest]

>I really want to thank you and the other 2 people who actually wrote

back, thanks for " listening " . I can really also relate to the post

about feeling angry sometimes, especially right now. I have taken

yesterday and today off work because I am so fatigued I can't do

anything. Also, decreased appetite and foul taste in my mouth and foul,

upset-feeling stomach. Kind of like before I was diagnosed. I am still

waiting for my labs (do drs ever really call back?) and can't get an

appointment with my GI till next Thursday. I need to see someone now.

But I have spent most of the day calling other GI's in my city and they

are either not accepting new patients or are booked till at least the

end of this month. I've been feeling this way for at least 2 weeks. I

need to care for myself, but am also afraid of taking too much time

from work. My boss is being fair, but anyone's understanding can only

be stretched so thin. How do all of you deal with stuff like this?

Please help.

> Hi! I'm so sorry to hear you're feeling worse. I have a lot of the

symptoms that you're talking about. I'm not sure what form of Urso

you're on, but when I was on Ursodiol, I was continually in pain,

vomiting and nauseous. They switched me to Urso Forte and that

definitely made a difference. As to whether what's happening to you is

PSC related or not, I can't give you an answer. You may want to ask

your doctor about the possibility of something else going on if you're

not sure. At the very least, it might give you piece of mind.

>

> Hope you're feeling better soon!

>

> Sandi in VA

>

[Guest guest]

>I really want to thank you and the other 2 people who actually wrote

back, thanks for " listening " . I can really also relate to the post

about feeling angry sometimes, especially right now. I have taken

yesterday and today off work because I am so fatigued I can't do

anything. Also, decreased appetite and foul taste in my mouth and foul,

upset-feeling stomach. Kind of like before I was diagnosed. I am still

waiting for my labs (do drs ever really call back?) and can't get an

appointment with my GI till next Thursday. I need to see someone now.

But I have spent most of the day calling other GI's in my city and they

are either not accepting new patients or are booked till at least the

end of this month. I've been feeling this way for at least 2 weeks. I

need to care for myself, but am also afraid of taking too much time

from work. My boss is being fair, but anyone's understanding can only

be stretched so thin. How do all of you deal with stuff like this?

Please help.

> Hi! I'm so sorry to hear you're feeling worse. I have a lot of the

symptoms that you're talking about. I'm not sure what form of Urso

you're on, but when I was on Ursodiol, I was continually in pain,

vomiting and nauseous. They switched me to Urso Forte and that

definitely made a difference. As to whether what's happening to you is

PSC related or not, I can't give you an answer. You may want to ask

your doctor about the possibility of something else going on if you're

not sure. At the very least, it might give you piece of mind.

>

> Hope you're feeling better soon!

>

> Sandi in VA

>

[Guest guest]

>I really want to thank you and the other 2 people who actually wrote

back, thanks for " listening " . I can really also relate to the post

about feeling angry sometimes, especially right now. I have taken

yesterday and today off work because I am so fatigued I can't do

anything. Also, decreased appetite and foul taste in my mouth and foul,

upset-feeling stomach. Kind of like before I was diagnosed. I am still

waiting for my labs (do drs ever really call back?) and can't get an

appointment with my GI till next Thursday. I need to see someone now.

But I have spent most of the day calling other GI's in my city and they

are either not accepting new patients or are booked till at least the

end of this month. I've been feeling this way for at least 2 weeks. I

need to care for myself, but am also afraid of taking too much time

from work. My boss is being fair, but anyone's understanding can only

be stretched so thin. How do all of you deal with stuff like this?

Please help.

> Hi! I'm so sorry to hear you're feeling worse. I have a lot of the

symptoms that you're talking about. I'm not sure what form of Urso

you're on, but when I was on Ursodiol, I was continually in pain,

vomiting and nauseous. They switched me to Urso Forte and that

definitely made a difference. As to whether what's happening to you is

PSC related or not, I can't give you an answer. You may want to ask

your doctor about the possibility of something else going on if you're

not sure. At the very least, it might give you piece of mind.

>

> Hope you're feeling better soon!

>

> Sandi in VA

>

[Guest guest]

I have the same feeling. I do understand your troubles. For me I was fortunate. i just got a new job. So I took a few days off. Before i start my new one.I have been so tired. I am nervous going back to work. I hope my new job understands. Good luck too you.

Sending love , laughter, good energy!

Namaste',

Subject: Re: I'm on Urso, but...(update, still need advice)To: Date: Thursday, February 5, 2009, 1:19 PM

>I really want to thank you and the other 2 people who actually wrote back, thanks for "listening". I can really also relate to the post about feeling angry sometimes, especially right now. I have taken yesterday and today off work because I am so fatigued I can't do anything. Also, decreased appetite and foul taste in my mouth and foul, upset-feeling stomach. Kind of like before I was diagnosed. I am still waiting for my labs (do drs ever really call back?) and can't get an appointment with my GI till next Thursday. I need to see someone now. But I have spent most of the day calling other GI's in my city and they are either not accepting new patients or are booked till at least the end of this month. I've been feeling this way for at least

2 weeks. I need to care for myself, but am also afraid of taking too much time from work. My boss is being fair, but anyone's understanding can only be stretched so thin. How do all of you deal with stuff like this? Please help.> Hi! I'm so sorry to hear you're feeling worse. I have a lot of the symptoms that you're talking about. I'm not sure what form of Urso you're on, but when I was on Ursodiol, I was continually in pain, vomiting and nauseous. They switched me to Urso Forte and that definitely made a difference. As to whether what's happening to you is PSC related or not, I can't give you an answer. You may want to ask your doctor about the possibility of something else going on if you're not sure. At the very least, it might give you piece of mind.> > Hope you're feeling better soon!> > Sandi in VA>

[Guest guest]

I have the same feeling. I do understand your troubles. For me I was fortunate. i just got a new job. So I took a few days off. Before i start my new one.I have been so tired. I am nervous going back to work. I hope my new job understands. Good luck too you.

Sending love , laughter, good energy!

Namaste',

Subject: Re: I'm on Urso, but...(update, still need advice)To: Date: Thursday, February 5, 2009, 1:19 PM

>I really want to thank you and the other 2 people who actually wrote back, thanks for "listening". I can really also relate to the post about feeling angry sometimes, especially right now. I have taken yesterday and today off work because I am so fatigued I can't do anything. Also, decreased appetite and foul taste in my mouth and foul, upset-feeling stomach. Kind of like before I was diagnosed. I am still waiting for my labs (do drs ever really call back?) and can't get an appointment with my GI till next Thursday. I need to see someone now. But I have spent most of the day calling other GI's in my city and they are either not accepting new patients or are booked till at least the end of this month. I've been feeling this way for at least

2 weeks. I need to care for myself, but am also afraid of taking too much time from work. My boss is being fair, but anyone's understanding can only be stretched so thin. How do all of you deal with stuff like this? Please help.> Hi! I'm so sorry to hear you're feeling worse. I have a lot of the symptoms that you're talking about. I'm not sure what form of Urso you're on, but when I was on Ursodiol, I was continually in pain, vomiting and nauseous. They switched me to Urso Forte and that definitely made a difference. As to whether what's happening to you is PSC related or not, I can't give you an answer. You may want to ask your doctor about the possibility of something else going on if you're not sure. At the very least, it might give you piece of mind.> > Hope you're feeling better soon!> > Sandi in VA>

[Guest guest]

Hi Sikeea,

In that kind of situation, I'd go to the emergency room. If you are having a bad reaction to the Urso, waiting could be dangerous. If you can't see the doctor, you can't get help anywhere but an emergency room. They can call in the specialists, and have several times for me.

Nita

Re: I'm on Urso, but...(update, still need advice)

I need to see someone now. But I have spent most of the day calling other GI's in my city and they are either not accepting new patients or are booked till at least the end of this month. >

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help you stay fit.

..

[Guest guest]

Hi Sikeea,

In that kind of situation, I'd go to the emergency room. If you are having a bad reaction to the Urso, waiting could be dangerous. If you can't see the doctor, you can't get help anywhere but an emergency room. They can call in the specialists, and have several times for me.

Nita

Re: I'm on Urso, but...(update, still need advice)

I need to see someone now. But I have spent most of the day calling other GI's in my city and they are either not accepting new patients or are booked till at least the end of this month. >

Recent Activity

18

New MembersVisit Your Group

New business?

Get new customers.

List your web site

in Yahoo! Search.

Yahoo! Groups

Dogs Owners Group

Join Do More For Dogs

pet community

Everyday Wellness

on Yahoo! Groups

Find groups that will

help you stay fit.

..

[Guest guest]

> >I really want to thank you and the other 2 people who actually

wrote

> back, thanks for " listening " . I can really also relate to the post

> about feeling angry sometimes, especially right now. I have taken

> yesterday and today off work because I am so fatigued I can't do

> anything. Also, decreased appetite and foul taste in my mouth and

foul,

> upset-feeling stomach. Kind of like before I was diagnosed. I am

still

> waiting for my labs (do drs ever really call back?) and can't get

an

> appointment with my GI till next Thursday. I need to see someone

now.

> But I have spent most of the day calling other GI's in my city and

they

> are either not accepting new patients or are booked till at least

the

> end of this month. I've been feeling this way for at least 2 weeks.

I

> need to care for myself, but am also afraid of taking too much time

> from work. My boss is being fair, but anyone's understanding can

only

> be stretched so thin. How do all of you deal with stuff like this?

> Please help.

>

> > Hi! I'm so sorry to hear you're feeling worse. I have a lot of

the

> symptoms that you're talking about. I'm not sure what form of Urso

> you're on, but when I was on Ursodiol, I was continually in pain,

> vomiting and nauseous. They switched me to Urso Forte and that

> definitely made a difference. As to whether what's happening to you

is

> PSC related or not, I can't give you an answer. You may want to ask

> your doctor about the possibility of something else going on if

you're

> not sure. At the very least, it might give you piece of mind.

> >

> > Hope you're feeling better soon!

> >

> > Sandi in VA

> >

>

[Guest guest]

> >I really want to thank you and the other 2 people who actually

wrote

> back, thanks for " listening " . I can really also relate to the post

> about feeling angry sometimes, especially right now. I have taken

> yesterday and today off work because I am so fatigued I can't do

> anything. Also, decreased appetite and foul taste in my mouth and

foul,

> upset-feeling stomach. Kind of like before I was diagnosed. I am

still

> waiting for my labs (do drs ever really call back?) and can't get

an

> appointment with my GI till next Thursday. I need to see someone

now.

> But I have spent most of the day calling other GI's in my city and

they

> are either not accepting new patients or are booked till at least

the

> end of this month. I've been feeling this way for at least 2 weeks.

I

> need to care for myself, but am also afraid of taking too much time

> from work. My boss is being fair, but anyone's understanding can

only

> be stretched so thin. How do all of you deal with stuff like this?

> Please help.

>

> > Hi! I'm so sorry to hear you're feeling worse. I have a lot of

the

> symptoms that you're talking about. I'm not sure what form of Urso

> you're on, but when I was on Ursodiol, I was continually in pain,

> vomiting and nauseous. They switched me to Urso Forte and that

> definitely made a difference. As to whether what's happening to you

is

> PSC related or not, I can't give you an answer. You may want to ask

> your doctor about the possibility of something else going on if

you're

> not sure. At the very least, it might give you piece of mind.

> >

> > Hope you're feeling better soon!

> >

> > Sandi in VA

> >

>

[Guest guest]

I was thinking the same thing, but the ER hasn't ever really done

anything for me. Luckily, I have one nearby, but they are perplexed by

the condition, assume it is something else. I wait hours to be seen and

then I get a saline IV and blood labs done, and sent home with an order

to call my GI. But, if I have to, I will go, better than nothing at

all. Or sit in at my GI's office, refusing to leave till I've been

seen :-) Sceptical that it's a bad reaction to Urso, just that maybe I

need a different dosage, and likely more tests done to see what the

progression is like. It's only been a few years, so I'm surprised to be

feeling this way now. But, that's the mystery of PSC, I guess. Gonna

have to drag myself to work tomorrow with, like, 17 cans of Pepsi to

have energy :-) At least it'll be Friday!! Thanks for listening to my

rants, everybody. I am so angry and frustrated, but at least I know I'm

not alone. That does help.

[Guest guest]

I was thinking the same thing, but the ER hasn't ever really done

anything for me. Luckily, I have one nearby, but they are perplexed by

the condition, assume it is something else. I wait hours to be seen and

then I get a saline IV and blood labs done, and sent home with an order

to call my GI. But, if I have to, I will go, better than nothing at

all. Or sit in at my GI's office, refusing to leave till I've been

seen :-) Sceptical that it's a bad reaction to Urso, just that maybe I

need a different dosage, and likely more tests done to see what the

progression is like. It's only been a few years, so I'm surprised to be

feeling this way now. But, that's the mystery of PSC, I guess. Gonna

have to drag myself to work tomorrow with, like, 17 cans of Pepsi to

have energy :-) At least it'll be Friday!! Thanks for listening to my

rants, everybody. I am so angry and frustrated, but at least I know I'm

not alone. That does help.

[Guest guest]

I was thinking the same thing, but the ER hasn't ever really done

anything for me. Luckily, I have one nearby, but they are perplexed by

the condition, assume it is something else. I wait hours to be seen and

then I get a saline IV and blood labs done, and sent home with an order

to call my GI. But, if I have to, I will go, better than nothing at

all. Or sit in at my GI's office, refusing to leave till I've been

seen :-) Sceptical that it's a bad reaction to Urso, just that maybe I

need a different dosage, and likely more tests done to see what the

progression is like. It's only been a few years, so I'm surprised to be

feeling this way now. But, that's the mystery of PSC, I guess. Gonna

have to drag myself to work tomorrow with, like, 17 cans of Pepsi to

have energy :-) At least it'll be Friday!! Thanks for listening to my

rants, everybody. I am so angry and frustrated, but at least I know I'm

not alone. That does help.

[Guest guest]

Sikeea,

If you have a sheet saying wath medications you are on and what medical conditions you have it should make thing easlier for you when/if you go to an ER. If you have it typed up you won't have to spell it out for them and they can access infomation on the disease on the internet.

Ian (52) PSC 89

I was thinking the same thing, but the ER hasn't ever really done anything for me. Luckily, I have one nearby, but they are perplexed by the condition, assume it is something else. I wait hours to be seen and

then I get a saline IV and blood labs done, and sent home with an order to call my GI. But, if I have to, I will go, better than nothing at all. Or sit in at my GI's office, refusing to leave till I've been

seen :-) Sceptical that it's a bad reaction to Urso, just that maybe I need a different dosage, and likely more tests done to see what the progression is like. It's only been a few years, so I'm surprised to be

feeling this way now. But, that's the mystery of PSC, I guess. Gonna have to drag myself to work tomorrow with, like, 17 cans of Pepsi to have energy :-) At least it'll be Friday!! Thanks for listening to my

rants, everybody. I am so angry and frustrated, but at least I know I'm not alone. That does help.

-- Ian Cribb P.Eng. (6...

[Guest guest]

Sikeea,

If you have a sheet saying wath medications you are on and what medical conditions you have it should make thing easlier for you when/if you go to an ER. If you have it typed up you won't have to spell it out for them and they can access infomation on the disease on the internet.

Ian (52) PSC 89

I was thinking the same thing, but the ER hasn't ever really done anything for me. Luckily, I have one nearby, but they are perplexed by the condition, assume it is something else. I wait hours to be seen and

then I get a saline IV and blood labs done, and sent home with an order to call my GI. But, if I have to, I will go, better than nothing at all. Or sit in at my GI's office, refusing to leave till I've been

seen :-) Sceptical that it's a bad reaction to Urso, just that maybe I need a different dosage, and likely more tests done to see what the progression is like. It's only been a few years, so I'm surprised to be

feeling this way now. But, that's the mystery of PSC, I guess. Gonna have to drag myself to work tomorrow with, like, 17 cans of Pepsi to have energy :-) At least it'll be Friday!! Thanks for listening to my

rants, everybody. I am so angry and frustrated, but at least I know I'm not alone. That does help.

-- Ian Cribb P.Eng. (6...

[Guest guest]

And… If you tell them that you think you may be having either a reaction

to the meds or a much deteriorated condition AND you can’t get in to see

anyone, AND you are scared…

From:

[mailto: ] On Behalf Of Ian Cribb

Sent: Thursday, February 05, 2009 5:48 PM

To:

Subject: Re: Re: I'm on Urso, but...(update, still need

advice)

Sikeea,

If you have a sheet saying wath medications you are on and

what medical conditions you have it should make thing easlier for you when/if

you go to an ER. If you have it typed up you won't have to spell it out for

them and they can access infomation on the disease on the internet.

Ian (52) PSC 89

[Guest guest]

And… If you tell them that you think you may be having either a reaction

to the meds or a much deteriorated condition AND you can’t get in to see

anyone, AND you are scared…

From:

[mailto: ] On Behalf Of Ian Cribb

Sent: Thursday, February 05, 2009 5:48 PM

To:

Subject: Re: Re: I'm on Urso, but...(update, still need

advice)

Sikeea,

If you have a sheet saying wath medications you are on and

what medical conditions you have it should make thing easlier for you when/if

you go to an ER. If you have it typed up you won't have to spell it out for

them and they can access infomation on the disease on the internet.

Ian (52) PSC 89

[Guest guest]

And… If you tell them that you think you may be having either a reaction

to the meds or a much deteriorated condition AND you can’t get in to see

anyone, AND you are scared…

From:

[mailto: ] On Behalf Of Ian Cribb

Sent: Thursday, February 05, 2009 5:48 PM

To:

Subject: Re: Re: I'm on Urso, but...(update, still need

advice)

Sikeea,

If you have a sheet saying wath medications you are on and

what medical conditions you have it should make thing easlier for you when/if

you go to an ER. If you have it typed up you won't have to spell it out for

them and they can access infomation on the disease on the internet.

Ian (52) PSC 89

[Guest guest]

Sandi,

I totally understand what you are going through.. I hope you are able to get feeling better soon. The worst thing about it is we look and seem normal for the most part so sometimes it seems as though people just can't understand how sick we are and that we have absolutely NO energy! I have been feeling really crappy the last 2 weeks, but am better now. (Minus the not being able to sleep at night.) It seems sometimes I feel so bloated but have no appetite and haven't ate anything and that weird taste in the mouth also and severe fatigue - barely able to make it through the day at work. Seem to be up all night, then when the alarm clock goes off, I have barely slept. I am lucky in that I am able to come into work a bit later (between 8:30 and 9:00 a.m. but even then, that is early when you have been tossing and turning all night.) You know how it goes...

I am new to this group but have had PSC for over 10 years, was diagnosed with colitis when I was 5, then PSC at 16.... Very odd. Have come close twice to having a transplant but somehow miraculously got better. It is nice to be able to share stories and experiences with others this terrible disease. I am hear to listen and support. I hope you get feeling better soon.

Kind regards,

Alison

To: Sent: Thursday, February 5, 2009 2:35:42 PMSubject: Re: I'm on Urso, but...(update, still need advice)

> >I really want to thank you and the other 2 people who actually wrote > back, thanks for "listening". I can really also relate to the post > about feeling angry sometimes, especially right now. I have taken > yesterday and today off work because I am so fatigued I can't do > anything. Also, decreased appetite and foul taste in my mouth and foul, > upset-feeling stomach. Kind of like before I was diagnosed. I am still > waiting for my labs (do drs ever really call back?) and can't get an > appointment with my GI till next

Thursday. I need to see someone now. > But I have spent most of the day calling other GI's in my city and they > are either not accepting new patients or are booked till at least the > end of this month. I've been feeling this way for at least 2 weeks. I > need to care for myself, but am also afraid of taking too much time > from work. My boss is being fair, but anyone's understanding can only > be stretched so thin. How do all of you deal with stuff like this? > Please help.> > > Hi! I'm so sorry to hear you're feeling worse. I have a lot of the > symptoms that you're talking about. I'm not sure what form of Urso > you're on, but when I was on Ursodiol, I was continually in pain, > vomiting and nauseous. They switched me to Urso Forte and that > definitely made a difference. As to whether what's happening to you is > PSC

related or not, I can't give you an answer. You may want to ask > your doctor about the possibility of something else going on if you're > not sure. At the very least, it might give you piece of mind.> > > > Hope you're feeling better soon!> > > > Sandi in VA> >>

[Guest guest]

Sandi,

I totally understand what you are going through.. I hope you are able to get feeling better soon. The worst thing about it is we look and seem normal for the most part so sometimes it seems as though people just can't understand how sick we are and that we have absolutely NO energy! I have been feeling really crappy the last 2 weeks, but am better now. (Minus the not being able to sleep at night.) It seems sometimes I feel so bloated but have no appetite and haven't ate anything and that weird taste in the mouth also and severe fatigue - barely able to make it through the day at work. Seem to be up all night, then when the alarm clock goes off, I have barely slept. I am lucky in that I am able to come into work a bit later (between 8:30 and 9:00 a.m. but even then, that is early when you have been tossing and turning all night.) You know how it goes...

I am new to this group but have had PSC for over 10 years, was diagnosed with colitis when I was 5, then PSC at 16.... Very odd. Have come close twice to having a transplant but somehow miraculously got better. It is nice to be able to share stories and experiences with others this terrible disease. I am hear to listen and support. I hope you get feeling better soon.

Kind regards,

Alison

To: Sent: Thursday, February 5, 2009 2:35:42 PMSubject: Re: I'm on Urso, but...(update, still need advice)

> >I really want to thank you and the other 2 people who actually wrote > back, thanks for "listening". I can really also relate to the post > about feeling angry sometimes, especially right now. I have taken > yesterday and today off work because I am so fatigued I can't do > anything. Also, decreased appetite and foul taste in my mouth and foul, > upset-feeling stomach. Kind of like before I was diagnosed. I am still > waiting for my labs (do drs ever really call back?) and can't get an > appointment with my GI till next

Thursday. I need to see someone now. > But I have spent most of the day calling other GI's in my city and they > are either not accepting new patients or are booked till at least the > end of this month. I've been feeling this way for at least 2 weeks. I > need to care for myself, but am also afraid of taking too much time > from work. My boss is being fair, but anyone's understanding can only > be stretched so thin. How do all of you deal with stuff like this? > Please help.> > > Hi! I'm so sorry to hear you're feeling worse. I have a lot of the > symptoms that you're talking about. I'm not sure what form of Urso > you're on, but when I was on Ursodiol, I was continually in pain, > vomiting and nauseous. They switched me to Urso Forte and that > definitely made a difference. As to whether what's happening to you is > PSC

related or not, I can't give you an answer. You may want to ask > your doctor about the possibility of something else going on if you're > not sure. At the very least, it might give you piece of mind.> > > > Hope you're feeling better soon!> > > > Sandi in VA> >>

[Guest guest]

Sandi,

I totally understand what you are going through.. I hope you are able to get feeling better soon. The worst thing about it is we look and seem normal for the most part so sometimes it seems as though people just can't understand how sick we are and that we have absolutely NO energy! I have been feeling really crappy the last 2 weeks, but am better now. (Minus the not being able to sleep at night.) It seems sometimes I feel so bloated but have no appetite and haven't ate anything and that weird taste in the mouth also and severe fatigue - barely able to make it through the day at work. Seem to be up all night, then when the alarm clock goes off, I have barely slept. I am lucky in that I am able to come into work a bit later (between 8:30 and 9:00 a.m. but even then, that is early when you have been tossing and turning all night.) You know how it goes...

I am new to this group but have had PSC for over 10 years, was diagnosed with colitis when I was 5, then PSC at 16.... Very odd. Have come close twice to having a transplant but somehow miraculously got better. It is nice to be able to share stories and experiences with others this terrible disease. I am hear to listen and support. I hope you get feeling better soon.

Kind regards,

Alison

To: Sent: Thursday, February 5, 2009 2:35:42 PMSubject: Re: I'm on Urso, but...(update, still need advice)

> >I really want to thank you and the other 2 people who actually wrote > back, thanks for "listening". I can really also relate to the post > about feeling angry sometimes, especially right now. I have taken > yesterday and today off work because I am so fatigued I can't do > anything. Also, decreased appetite and foul taste in my mouth and foul, > upset-feeling stomach. Kind of like before I was diagnosed. I am still > waiting for my labs (do drs ever really call back?) and can't get an > appointment with my GI till next

Thursday. I need to see someone now. > But I have spent most of the day calling other GI's in my city and they > are either not accepting new patients or are booked till at least the > end of this month. I've been feeling this way for at least 2 weeks. I > need to care for myself, but am also afraid of taking too much time > from work. My boss is being fair, but anyone's understanding can only > be stretched so thin. How do all of you deal with stuff like this? > Please help.> > > Hi! I'm so sorry to hear you're feeling worse. I have a lot of the > symptoms that you're talking about. I'm not sure what form of Urso > you're on, but when I was on Ursodiol, I was continually in pain, > vomiting and nauseous. They switched me to Urso Forte and that > definitely made a difference. As to whether what's happening to you is > PSC

related or not, I can't give you an answer. You may want to ask > your doctor about the possibility of something else going on if you're > not sure. At the very least, it might give you piece of mind.> > > > Hope you're feeling better soon!> > > > Sandi in VA> >>

[Guest guest]

AlisonI too am new to the group. I was diagnosed with UC in 2001 and PSC in 2004. I am listed on the transplant list but my MELD is an 8. Even after I've done tons of research, I still don't understand so much about this disease. Why do some people get sick quicker than others? How long am I going to wait to get a transplant? And how sick am I really going to get? I feel so lucky that I have found a group of people that understand what I'm going through.Serbrina Sent via BlackBerry by AT&TFrom: Alison Date: Thu, 5 Feb 2009 21:45:56 -0800 (PST)To: < >Subject: Re: Re: I'm on Urso, but...(update, still need advice) Sandi,I totally understand what you are going through.. I hope you are able to get feeling better soon. The worst thing about it is we look and seem normal for the most part so sometimes it seems as though people just can't understand how sick we are and that we have absolutely NO energy! I have been feeling really crappy the last 2 weeks, but am better now. (Minus the not being able to sleep at night.) It seems sometimes I feel so bloated but have no appetite and haven't ate anything and that weird taste in the mouth also and severe fatigue - barely able to make it through the day at work. Seem to be up all night, then when the alarm clock goes off, I have barely slept. I am lucky in that I am able to come into work a bit later (between 8:30 and 9:00 a.m. but even then, that is early when you have been tossing and turning all night.) You know how it goes... I am new to this group but have had PSC for over 10 years, was diagnosed with colitis when I was 5, then PSC at 16.... Very odd. Have come close twice to having a transplant but somehow miraculously got better. It is nice to be able to share stories and experiences with others this terrible disease. I am hear to listen and support. I hope you get feeling better soon.Kind regards,AlisonFrom: sikeea_graham <sikeea_graham (AT) yahoo (DOT) com>To: Sent: Thursday, February 5, 2009 2:35:42 PMSubject: Re: I'm on Urso, but...(update, still need advice)> >I really want to thank you and the other 2 people who actually wrote > back, thanks for "listening". I can really also relate to the post > about feeling angry sometimes, especially right now. I have taken > yesterday and today off work because I am so fatigued I can't do > anything. Also, decreased appetite and foul taste in my mouth and foul, > upset-feeling stomach. Kind of like before I was diagnosed. I am still > waiting for my labs (do drs ever really call back?) and can't get an > appointment with my GI till next Thursday. I need to see someone now. > But I have spent most of the day calling other GI's in my city and they > are either not accepting new patients or are booked till at least the > end of this month. I've been feeling this way for at least 2 weeks. I > need to care for myself, but am also afraid of taking too much time > from work. My boss is being fair, but anyone's understanding can only > be stretched so thin. How do all of you deal with stuff like this? > Please help.> > > Hi! I'm so sorry to hear you're feeling worse. I have a lot of the > symptoms that you're talking about. I'm not sure what form of Urso > you're on, but when I was on Ursodiol, I was continually in pain, > vomiting and nauseous. They switched me to Urso Forte and that > definitely made a difference. As to whether what's happening to you is > PSC related or not, I can't give you an answer. You may want to ask > your doctor about the possibility of something else going on if you're > not sure. At the very least, it might give you piece of mind.> > > > Hope you're feeling better soon!> > > > Sandi in VA> >>

[Guest guest]

AlisonI too am new to the group. I was diagnosed with UC in 2001 and PSC in 2004. I am listed on the transplant list but my MELD is an 8. Even after I've done tons of research, I still don't understand so much about this disease. Why do some people get sick quicker than others? How long am I going to wait to get a transplant? And how sick am I really going to get? I feel so lucky that I have found a group of people that understand what I'm going through.Serbrina Sent via BlackBerry by AT&TFrom: Alison Date: Thu, 5 Feb 2009 21:45:56 -0800 (PST)To: < >Subject: Re: Re: I'm on Urso, but...(update, still need advice) Sandi,I totally understand what you are going through.. I hope you are able to get feeling better soon. The worst thing about it is we look and seem normal for the most part so sometimes it seems as though people just can't understand how sick we are and that we have absolutely NO energy! I have been feeling really crappy the last 2 weeks, but am better now. (Minus the not being able to sleep at night.) It seems sometimes I feel so bloated but have no appetite and haven't ate anything and that weird taste in the mouth also and severe fatigue - barely able to make it through the day at work. Seem to be up all night, then when the alarm clock goes off, I have barely slept. I am lucky in that I am able to come into work a bit later (between 8:30 and 9:00 a.m. but even then, that is early when you have been tossing and turning all night.) You know how it goes... I am new to this group but have had PSC for over 10 years, was diagnosed with colitis when I was 5, then PSC at 16.... Very odd. Have come close twice to having a transplant but somehow miraculously got better. It is nice to be able to share stories and experiences with others this terrible disease. I am hear to listen and support. I hope you get feeling better soon.Kind regards,AlisonFrom: sikeea_graham <sikeea_graham (AT) yahoo (DOT) com>To: Sent: Thursday, February 5, 2009 2:35:42 PMSubject: Re: I'm on Urso, but...(update, still need advice)> >I really want to thank you and the other 2 people who actually wrote > back, thanks for "listening". I can really also relate to the post > about feeling angry sometimes, especially right now. I have taken > yesterday and today off work because I am so fatigued I can't do > anything. Also, decreased appetite and foul taste in my mouth and foul, > upset-feeling stomach. Kind of like before I was diagnosed. I am still > waiting for my labs (do drs ever really call back?) and can't get an > appointment with my GI till next Thursday. I need to see someone now. > But I have spent most of the day calling other GI's in my city and they > are either not accepting new patients or are booked till at least the > end of this month. I've been feeling this way for at least 2 weeks. I > need to care for myself, but am also afraid of taking too much time > from work. My boss is being fair, but anyone's understanding can only > be stretched so thin. How do all of you deal with stuff like this? > Please help.> > > Hi! I'm so sorry to hear you're feeling worse. I have a lot of the > symptoms that you're talking about. I'm not sure what form of Urso > you're on, but when I was on Ursodiol, I was continually in pain, > vomiting and nauseous. They switched me to Urso Forte and that > definitely made a difference. As to whether what's happening to you is > PSC related or not, I can't give you an answer. You may want to ask > your doctor about the possibility of something else going on if you're > not sure. At the very least, it might give you piece of mind.> > > > Hope you're feeling better soon!> > > > Sandi in VA> >>

[Guest guest]

Hmm...Yahoo seems to be a bit wonky and is attributing a message to me I didn't

actually write! Even though it says I sent the message, it looks like it

actually came from Sikeea Graham. Thanks for everybody's support though!

Sandi in VA

>

> Subject: Re: I'm on Urso, but...(update, still need advice)

> To:

> Date: Thursday, February 5, 2009, 9:19 PM

>

> >I really want to thank you and the other 2 people who

> actually wrote

> back, thanks for " listening " . I can really also

> relate to the post

> about feeling angry sometimes, especially right now.

[Guest guest]

Hmm...Yahoo seems to be a bit wonky and is attributing a message to me I didn't

actually write! Even though it says I sent the message, it looks like it

actually came from Sikeea Graham. Thanks for everybody's support though!

Sandi in VA

>

> Subject: Re: I'm on Urso, but...(update, still need advice)

> To:

> Date: Thursday, February 5, 2009, 9:19 PM

>

> >I really want to thank you and the other 2 people who

> actually wrote

> back, thanks for " listening " . I can really also

> relate to the post

> about feeling angry sometimes, especially right now.

[Guest guest]

Sikeea,

Hi! You're absolutely welcome for the " listening. " Anytime you need me (or

anyone else on this board), please know that we're here for you. It sounds like

you're going through a rough time. I can completely empathize with your comment

about waiting forever for the doctors to call back. The only advice I can give

you is to keep on them. Even if you have to call daily, don't be afraid to do

it. Your health is important and you/we need to be vigilant about it. Do you

know if any of the GIs you're calling have a cancellation/waitlist that you

could place yourself on? I'm so sorry you're having to deal with this! Going

to the doctor is never pleasant and it's just ridiculous and ironic that we find

ourselves begging for somebody to see us at times. I hope you find somebody

great soon!

As to your job situation, how is your relationship with your boss? Is he/she

somebody you could sit down with and have an open/honest conversation? Maybe it

would be possible to arrange some work at home hours or a split shift that would

allow you to nap during the middle of the day. If you can think of some ideas

that might work for you, you may want to try presenting them to your boss and

see what happens from there.

Also, I know this is a touchy subject for some, but if you are feeling

overwhelmed, talking to an impartial third party like a therapist may help.

Sometimes just saying things out loud takes away their power to stress you and

having an objective ear can sometimes lend new perspective. It's a personal

choice, but I thought I'd mention it for what it's worth!

Hope things go your way very soon!

Sandi in VA