RE: Normal PSC aches and pains...

[Guest guest]

Hi melissa, OH the frustration! I can so feel your pain. I just HATE when Dr's blow you off and tell you "oh, it's nothing, youre disease isn't even that bad" excuse me, but do they even have any idea what it is like to live with a chronic, life threatening, painful, disabling disease. It just makes me so angry. Hang in there, I hope you get some relief soon. Sands UC 2002, PSC 11/07jmhette2 wrote: So I had my endoscopy on Tuesday and it was normal. The GI that did the EGD said that it sounds like it could be pancreatitis or normal aches and pains of psc. Well???I saw my hepatologist and he just seemed to be annoyed with me being there. He said that he isn't quite sure what's causing it and that I'm only in the early stages with little scarring so I have nothing to worry about. I know that's good news but that doesn't solve my problem. I guess I just have to deal with the fact that I'll be taking pain pills for the rest of my life. I saw the PA before I saw him and she said that my "finger and hand issues are most likely raynauds but theres really no big issue with it, just keep you hands warm and I'll write it in your chart."They gave me some medicine called donnatal and said to come back in 6 months. I looked it up, donnatal is for irritable colon. Well....the pain

happens right away when I eat so I'm thinking it has more to do with my stomach and stuff. Oh well. I'm glad that I'm not bad but I feel like it was a waste of time and that I'm a complete idiot for going up there. The GI that did the EGD seemed convinced of my pain by not my hepa. Ugh...psc, pbc, raynauds?

[Guest guest]

Hi melissa, OH the frustration! I can so feel your pain. I just HATE when Dr's blow you off and tell you "oh, it's nothing, youre disease isn't even that bad" excuse me, but do they even have any idea what it is like to live with a chronic, life threatening, painful, disabling disease. It just makes me so angry. Hang in there, I hope you get some relief soon. Sands UC 2002, PSC 11/07jmhette2 wrote: So I had my endoscopy on Tuesday and it was normal. The GI that did the EGD said that it sounds like it could be pancreatitis or normal aches and pains of psc. Well???I saw my hepatologist and he just seemed to be annoyed with me being there. He said that he isn't quite sure what's causing it and that I'm only in the early stages with little scarring so I have nothing to worry about. I know that's good news but that doesn't solve my problem. I guess I just have to deal with the fact that I'll be taking pain pills for the rest of my life. I saw the PA before I saw him and she said that my "finger and hand issues are most likely raynauds but theres really no big issue with it, just keep you hands warm and I'll write it in your chart."They gave me some medicine called donnatal and said to come back in 6 months. I looked it up, donnatal is for irritable colon. Well....the pain

happens right away when I eat so I'm thinking it has more to do with my stomach and stuff. Oh well. I'm glad that I'm not bad but I feel like it was a waste of time and that I'm a complete idiot for going up there. The GI that did the EGD seemed convinced of my pain by not my hepa. Ugh...psc, pbc, raynauds?

[Guest guest]

Hi melissa, OH the frustration! I can so feel your pain. I just HATE when Dr's blow you off and tell you "oh, it's nothing, youre disease isn't even that bad" excuse me, but do they even have any idea what it is like to live with a chronic, life threatening, painful, disabling disease. It just makes me so angry. Hang in there, I hope you get some relief soon. Sands UC 2002, PSC 11/07jmhette2 wrote: So I had my endoscopy on Tuesday and it was normal. The GI that did the EGD said that it sounds like it could be pancreatitis or normal aches and pains of psc. Well???I saw my hepatologist and he just seemed to be annoyed with me being there. He said that he isn't quite sure what's causing it and that I'm only in the early stages with little scarring so I have nothing to worry about. I know that's good news but that doesn't solve my problem. I guess I just have to deal with the fact that I'll be taking pain pills for the rest of my life. I saw the PA before I saw him and she said that my "finger and hand issues are most likely raynauds but theres really no big issue with it, just keep you hands warm and I'll write it in your chart."They gave me some medicine called donnatal and said to come back in 6 months. I looked it up, donnatal is for irritable colon. Well....the pain

happens right away when I eat so I'm thinking it has more to do with my stomach and stuff. Oh well. I'm glad that I'm not bad but I feel like it was a waste of time and that I'm a complete idiot for going up there. The GI that did the EGD seemed convinced of my pain by not my hepa. Ugh...psc, pbc, raynauds?

[Guest guest]

We heard this in the beginning too when we were seeing a different team of Dr.s'. PSC does not hurt, it must be his colitis. We knew differently as this was differing then Colitis cramps. Tyler (age 9) was suffering. He had soo much discomfort in his righ upper quadrant, that he would cry and sit it the bathtub with the hose running on his tummy two to three times a day. He would lay with the heat pad on his tummy. He missed soo much school and was suffering. Then we saw a new team of Dr.'s at Childrens Hospital and as soon as they put him on Urso, the pain subsided. they recognized the symptoms. Do not let anyone tell you that you are mistaken. You know your body. See another Dr..that can at least validate your concerns....Perhaps there is a blockage or something ... Good luck and hang in there.

Stevie Gedgaudas-Ostos

Sands

Sands

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03/13/2008 12:06 PM

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Re: Normal PSC aches and pains...

Hi melissa,

OH the frustration! I can so feel your pain. I just HATE when Dr's blow you off and tell you " oh, it's nothing, youre disease isn't even that bad " excuse me, but do they even have any idea what it is like to live with a chronic, life threatening, painful, disabling disease.

It just makes me so angry.

Hang in there, I hope you get some relief soon.

Sands

UC 2002, PSC 11/07

jmhette2 wrote:

So I had my endoscopy on Tuesday and it was normal. The GI that did

the EGD said that it sounds like it could be pancreatitis or normal

aches and pains of psc. Well???

I saw my hepatologist and he just seemed to be annoyed with me being

there. He said that he isn't quite sure what's causing it and that

I'm only in the early stages with little scarring so I have nothing

to worry about. I know that's good news but that doesn't solve my

problem.

I guess I just have to deal with the fact that I'll be taking pain

pills for the rest of my life.

I saw the PA before I saw him and she said that my " finger and hand

issues are most likely raynauds but theres really no big issue with

it, just keep you hands warm and I'll write it in your chart. "

They gave me some medicine called donnatal and said to come back in

6 months. I looked it up, donnatal is for irritable colon.

Well....the pain happens right away when I eat so I'm thinking it

has more to do with my stomach and stuff.

Oh well. I'm glad that I'm not bad but I feel like it was a waste

of time and that I'm a complete idiot for going up there. The GI

that did the EGD seemed convinced of my pain by not my hepa.

Ugh...

psc, pbc, raynauds?

[Guest guest]

We heard this in the beginning too when we were seeing a different team of Dr.s'. PSC does not hurt, it must be his colitis. We knew differently as this was differing then Colitis cramps. Tyler (age 9) was suffering. He had soo much discomfort in his righ upper quadrant, that he would cry and sit it the bathtub with the hose running on his tummy two to three times a day. He would lay with the heat pad on his tummy. He missed soo much school and was suffering. Then we saw a new team of Dr.'s at Childrens Hospital and as soon as they put him on Urso, the pain subsided. they recognized the symptoms. Do not let anyone tell you that you are mistaken. You know your body. See another Dr..that can at least validate your concerns....Perhaps there is a blockage or something ... Good luck and hang in there.

Stevie Gedgaudas-Ostos

Sands

Sands

Sent by:

03/13/2008 12:06 PM

Please respond to

To

cc

Subject

Re: Normal PSC aches and pains...

Hi melissa,

OH the frustration! I can so feel your pain. I just HATE when Dr's blow you off and tell you " oh, it's nothing, youre disease isn't even that bad " excuse me, but do they even have any idea what it is like to live with a chronic, life threatening, painful, disabling disease.

It just makes me so angry.

Hang in there, I hope you get some relief soon.

Sands

UC 2002, PSC 11/07

jmhette2 wrote:

So I had my endoscopy on Tuesday and it was normal. The GI that did

the EGD said that it sounds like it could be pancreatitis or normal

aches and pains of psc. Well???

I saw my hepatologist and he just seemed to be annoyed with me being

there. He said that he isn't quite sure what's causing it and that

I'm only in the early stages with little scarring so I have nothing

to worry about. I know that's good news but that doesn't solve my

problem.

I guess I just have to deal with the fact that I'll be taking pain

pills for the rest of my life.

I saw the PA before I saw him and she said that my " finger and hand

issues are most likely raynauds but theres really no big issue with

it, just keep you hands warm and I'll write it in your chart. "

They gave me some medicine called donnatal and said to come back in

6 months. I looked it up, donnatal is for irritable colon.

Well....the pain happens right away when I eat so I'm thinking it

has more to do with my stomach and stuff.

Oh well. I'm glad that I'm not bad but I feel like it was a waste

of time and that I'm a complete idiot for going up there. The GI

that did the EGD seemed convinced of my pain by not my hepa.

Ugh...

psc, pbc, raynauds?

[Guest guest]

We heard this in the beginning too when we were seeing a different team of Dr.s'. PSC does not hurt, it must be his colitis. We knew differently as this was differing then Colitis cramps. Tyler (age 9) was suffering. He had soo much discomfort in his righ upper quadrant, that he would cry and sit it the bathtub with the hose running on his tummy two to three times a day. He would lay with the heat pad on his tummy. He missed soo much school and was suffering. Then we saw a new team of Dr.'s at Childrens Hospital and as soon as they put him on Urso, the pain subsided. they recognized the symptoms. Do not let anyone tell you that you are mistaken. You know your body. See another Dr..that can at least validate your concerns....Perhaps there is a blockage or something ... Good luck and hang in there.

Stevie Gedgaudas-Ostos

Sands

Sands

Sent by:

03/13/2008 12:06 PM

Please respond to

To

cc

Subject

Re: Normal PSC aches and pains...

Hi melissa,

OH the frustration! I can so feel your pain. I just HATE when Dr's blow you off and tell you " oh, it's nothing, youre disease isn't even that bad " excuse me, but do they even have any idea what it is like to live with a chronic, life threatening, painful, disabling disease.

It just makes me so angry.

Hang in there, I hope you get some relief soon.

Sands

UC 2002, PSC 11/07

jmhette2 wrote:

So I had my endoscopy on Tuesday and it was normal. The GI that did

the EGD said that it sounds like it could be pancreatitis or normal

aches and pains of psc. Well???

I saw my hepatologist and he just seemed to be annoyed with me being

there. He said that he isn't quite sure what's causing it and that

I'm only in the early stages with little scarring so I have nothing

to worry about. I know that's good news but that doesn't solve my

problem.

I guess I just have to deal with the fact that I'll be taking pain

pills for the rest of my life.

I saw the PA before I saw him and she said that my " finger and hand

issues are most likely raynauds but theres really no big issue with

it, just keep you hands warm and I'll write it in your chart. "

They gave me some medicine called donnatal and said to come back in

6 months. I looked it up, donnatal is for irritable colon.

Well....the pain happens right away when I eat so I'm thinking it

has more to do with my stomach and stuff.

Oh well. I'm glad that I'm not bad but I feel like it was a waste

of time and that I'm a complete idiot for going up there. The GI

that did the EGD seemed convinced of my pain by not my hepa.

Ugh...

psc, pbc, raynauds?

[Guest guest]

I feel its time for a new DR...not one that blows you off or your wasting his time... I agree with Steve.. everybody has different aches and pains just check out our web site...When i lived in Texas I went to the university hosp in Lubbock...I saw a liver Dr there he didn't have my file that was sent to him 2 month earlier from MICHIGAN...DR ask me why do I think I have PSC U/C what a joke he was rude.....he asked why i was on Cipro...urso...He said stop taking them you don't need them..I refused to pay him....So I loaded all my stuff back up and went back to Michigan..All my same Dr's took me back YES... so don't give up I hope you don't have PSC...I write everything down on my pain.. I have to take my

temp everyday and my weight.. yes my hands and whole body gets chills and not from the cold temps we have.......that is how i know I'm getting sick again....I am going to get drained Monday 17...I am holding alot of fluid i have gained 12lbs in 9 days... TAKE CARE Jeanne psc u/c stage 4jmhette2 wrote: So I had my endoscopy on Tuesday and it was

normal. The GI that did the EGD said that it sounds like it could be pancreatitis or normal aches and pains of psc. Well???I saw my hepatologist and he just seemed to be annoyed with me being there. He said that he isn't quite sure what's causing it and that I'm only in the early stages with little scarring so I have nothing to worry about. I know that's good news but that doesn't solve my problem. I guess I just have to deal with the fact that I'll be taking pain pills for the rest of my life. I saw the PA before I saw him and she said that my "finger and hand issues are most likely raynauds but theres really no big issue with it, just keep you hands warm and I'll write it in your chart."They gave me some medicine called donnatal and said to come back in 6 months. I looked it up, donnatal is for irritable colon. Well....the pain happens right away when I eat so I'm thinking it has more to do

with my stomach and stuff. Oh well. I'm glad that I'm not bad but I feel like it was a waste of time and that I'm a complete idiot for going up there. The GI that did the EGD seemed convinced of my pain by not my hepa. Ugh...psc, pbc, raynauds? Jeanne

[Guest guest]

I feel its time for a new DR...not one that blows you off or your wasting his time... I agree with Steve.. everybody has different aches and pains just check out our web site...When i lived in Texas I went to the university hosp in Lubbock...I saw a liver Dr there he didn't have my file that was sent to him 2 month earlier from MICHIGAN...DR ask me why do I think I have PSC U/C what a joke he was rude.....he asked why i was on Cipro...urso...He said stop taking them you don't need them..I refused to pay him....So I loaded all my stuff back up and went back to Michigan..All my same Dr's took me back YES... so don't give up I hope you don't have PSC...I write everything down on my pain.. I have to take my

temp everyday and my weight.. yes my hands and whole body gets chills and not from the cold temps we have.......that is how i know I'm getting sick again....I am going to get drained Monday 17...I am holding alot of fluid i have gained 12lbs in 9 days... TAKE CARE Jeanne psc u/c stage 4jmhette2 wrote: So I had my endoscopy on Tuesday and it was

normal. The GI that did the EGD said that it sounds like it could be pancreatitis or normal aches and pains of psc. Well???I saw my hepatologist and he just seemed to be annoyed with me being there. He said that he isn't quite sure what's causing it and that I'm only in the early stages with little scarring so I have nothing to worry about. I know that's good news but that doesn't solve my problem. I guess I just have to deal with the fact that I'll be taking pain pills for the rest of my life. I saw the PA before I saw him and she said that my "finger and hand issues are most likely raynauds but theres really no big issue with it, just keep you hands warm and I'll write it in your chart."They gave me some medicine called donnatal and said to come back in 6 months. I looked it up, donnatal is for irritable colon. Well....the pain happens right away when I eat so I'm thinking it has more to do

with my stomach and stuff. Oh well. I'm glad that I'm not bad but I feel like it was a waste of time and that I'm a complete idiot for going up there. The GI that did the EGD seemed convinced of my pain by not my hepa. Ugh...psc, pbc, raynauds? Jeanne

[Guest guest]

I feel its time for a new DR...not one that blows you off or your wasting his time... I agree with Steve.. everybody has different aches and pains just check out our web site...When i lived in Texas I went to the university hosp in Lubbock...I saw a liver Dr there he didn't have my file that was sent to him 2 month earlier from MICHIGAN...DR ask me why do I think I have PSC U/C what a joke he was rude.....he asked why i was on Cipro...urso...He said stop taking them you don't need them..I refused to pay him....So I loaded all my stuff back up and went back to Michigan..All my same Dr's took me back YES... so don't give up I hope you don't have PSC...I write everything down on my pain.. I have to take my

temp everyday and my weight.. yes my hands and whole body gets chills and not from the cold temps we have.......that is how i know I'm getting sick again....I am going to get drained Monday 17...I am holding alot of fluid i have gained 12lbs in 9 days... TAKE CARE Jeanne psc u/c stage 4jmhette2 wrote: So I had my endoscopy on Tuesday and it was

normal. The GI that did the EGD said that it sounds like it could be pancreatitis or normal aches and pains of psc. Well???I saw my hepatologist and he just seemed to be annoyed with me being there. He said that he isn't quite sure what's causing it and that I'm only in the early stages with little scarring so I have nothing to worry about. I know that's good news but that doesn't solve my problem. I guess I just have to deal with the fact that I'll be taking pain pills for the rest of my life. I saw the PA before I saw him and she said that my "finger and hand issues are most likely raynauds but theres really no big issue with it, just keep you hands warm and I'll write it in your chart."They gave me some medicine called donnatal and said to come back in 6 months. I looked it up, donnatal is for irritable colon. Well....the pain happens right away when I eat so I'm thinking it has more to do

with my stomach and stuff. Oh well. I'm glad that I'm not bad but I feel like it was a waste of time and that I'm a complete idiot for going up there. The GI that did the EGD seemed convinced of my pain by not my hepa. Ugh...psc, pbc, raynauds? Jeanne

[Guest guest]

, 17, has had abdominal pain since about age 11 or 12. Early on we found a gallbladder that was not functioning worth beans - contracted. The young teen realized that he couldn't eat pizza, cake, donut, hamburger (in truth he could eat it, but likely pain, vomiting afterwards). We tried Prilosec, ranitidine.... and for several years he took Prilosec, but had symptoms - sometimes crying and curled up in agony. Had elevated LFT, but with Juv Rheumatoid Arthritis, may be that was because of the NSAIDS???

Age 15 - got really sick with UC, really elevated LFT's, and severe, excruciating abdominal pain (plus 18 pound weight loss - from 130 pounds, ht 5 10). The upper Endoscopy showed gastritis. Switching from Prilosec to Nexium made a huge difference, although it took months to calm down (and during that time, it took a long, slow taper of Prednisone to calm the colitis).

Two + years later - intermittent abdominal pain, sometimes requiring extra dose Nexium. He is much more aware of what foods increase discomfort. He knows stress causes significant GI affects. I am amazed how diligent he is with meds now to help control UC/PSC/gastritis. But he refuses URSO - increased abdominal pain and huge pills - and I'm not forcing the issue, as he is taking so much responsibility and he is aware of all aspects of URSO - including potential value. It's just a battle I'm not willing to force at this time.

The reason I tell this long story is that the docs don't equate the abdominal discomfort with whatever exactly causes it - and I don't know either... just know that Nexium has made a huge difference for him (and Prilosec, prevacid and aciphex were not as helpful). For others, one of the PPI's (Prilosec, prevacid, etc) might work better than another - it tends to be an individual thing for some, despite the fact that "they are all essentially the same".

Joanne H

(, Ca., mom of 17, UC/PSC 2-06; JRA 1998)

So I had my endoscopy on Tuesday and it was normal. The GI that did the EGD said that it sounds like it could be pancreatitis or normal aches and pains of psc. Well???I saw my hepatologist and he just seemed to be annoyed with me being there. He said that he isn't quite sure what's causing it and that Well....the pain happens right away when I eat so I'm thinking it has more to do with my stomach and stuff. Oh well. I'm glad that I'm not bad but I feel like it was a waste of time and that I'm a complete idiot for going up there. The GI that did the EGD seemed convinced of my pain by not my hepa. Ugh...psc, pbc, raynauds?