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Sorry I have not personally been on so long. I know that some of you

(maybe all) have been getting my caringbridge updates and I

appreciate the continued support. I had brain surgery 18 days ago to

fix my Chiari Malformation. Prior to surgery and for the past year my

LFTs have been wonderful and my hepa agreed that I did not have to

take the URSO. MY alk phos was running about 85 and AST and ALT were

normal as well. Hepa said to start URSO if I started getting itchy.

Prior to my surgery they drew levels and my alk phos was 89. Last

week while I was in the hospital I started itching. It was 12 days

post op and the nurses insisted it was the morphine but I knew

better. They checked my LFTs after I asked repeatedly and my alk

phos was 'fine' the doctor said. Later I asked the nurse and it was

171. Not too bad I know and it's probably from all the stress and

stuff.

Can the pain medications be hurting my liver? I HAVE to take them

and I take the least amount of tylenol as possible. The pain is

slowly but surely getting better. My PCP started me on URSO 300mg 5x

a day.

I remember someone saying that they were allowed to take all their

URSO once a day. Is this true? My hepa is out of town until March

2nd. I have been taking 1 in the morning and 2 with lunch and 2 with

supper. I have to take it with food and those are the only times I

eat. Do you think this is okay?

The itching is helped a little with te URSO but ot much and benedryl

and all that only knocks me out. What other effective treatments do

you have for itching? I have not had this symptom in over a year. I

hope it's just because of the constant use of pain meds and not a

sign of deterorating liver problems. At my last check up in November

things were fine except my hepatic protal vein was more dialated and

my spleen was more enlarged. But blood work was fine

Thanks

PSC 8/07 (stage 1)

Chiari Malformation 9/08

Chiari surgery 2/3/09

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Check with your surgery team if URSO is going to have any ill effects on your surgery, if not add a reduced dose and check with your Hep when he gets back if he is okay with your pain medicines.

Ian

Sorry I have not personally been on so long. I know that some of you (maybe all) have been getting my caringbridge updates and I appreciate the continued support. I had brain surgery 18 days ago to fix my Chiari Malformation. Prior to surgery and for the past year my

LFTs have been wonderful and my hepa agreed that I did not have to take the URSO. MY alk phos was running about 85 and AST and ALT were normal as well. Hepa said to start URSO if I started getting itchy.Prior to my surgery they drew levels and my alk phos was 89. Last

week while I was in the hospital I started itching. It was 12 days post op and the nurses insisted it was the morphine but I knew better. They checked my LFTs after I asked repeatedly and my alk phos was 'fine' the doctor said. Later I asked the nurse and it was

171. Not too bad I know and it's probably from all the stress and stuff.Can the pain medications be hurting my liver? I HAVE to take them and I take the least amount of tylenol as possible. The pain is

slowly but surely getting better. My PCP started me on URSO 300mg 5x a day. I remember someone saying that they were allowed to take all their URSO once a day. Is this true? My hepa is out of town until March

2nd. I have been taking 1 in the morning and 2 with lunch and 2 with supper. I have to take it with food and those are the only times I eat. Do you think this is okay?The itching is helped a little with te URSO but ot much and benedryl

and all that only knocks me out. What other effective treatments do you have for itching? I have not had this symptom in over a year. I hope it's just because of the constant use of pain meds and not a sign of deterorating liver problems. At my last check up in November

things were fine except my hepatic protal vein was more dialated and my spleen was more enlarged. But blood work was fineThanksPSC 8/07 (stage 1)Chiari Malformation 9/08Chiari surgery 2/3/09

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

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,

Check with your surgery team if URSO is going to have any ill effects on your surgery, if not add a reduced dose and check with your Hep when he gets back if he is okay with your pain medicines.

Ian

Sorry I have not personally been on so long. I know that some of you (maybe all) have been getting my caringbridge updates and I appreciate the continued support. I had brain surgery 18 days ago to fix my Chiari Malformation. Prior to surgery and for the past year my

LFTs have been wonderful and my hepa agreed that I did not have to take the URSO. MY alk phos was running about 85 and AST and ALT were normal as well. Hepa said to start URSO if I started getting itchy.Prior to my surgery they drew levels and my alk phos was 89. Last

week while I was in the hospital I started itching. It was 12 days post op and the nurses insisted it was the morphine but I knew better. They checked my LFTs after I asked repeatedly and my alk phos was 'fine' the doctor said. Later I asked the nurse and it was

171. Not too bad I know and it's probably from all the stress and stuff.Can the pain medications be hurting my liver? I HAVE to take them and I take the least amount of tylenol as possible. The pain is

slowly but surely getting better. My PCP started me on URSO 300mg 5x a day. I remember someone saying that they were allowed to take all their URSO once a day. Is this true? My hepa is out of town until March

2nd. I have been taking 1 in the morning and 2 with lunch and 2 with supper. I have to take it with food and those are the only times I eat. Do you think this is okay?The itching is helped a little with te URSO but ot much and benedryl

and all that only knocks me out. What other effective treatments do you have for itching? I have not had this symptom in over a year. I hope it's just because of the constant use of pain meds and not a sign of deterorating liver problems. At my last check up in November

things were fine except my hepatic protal vein was more dialated and my spleen was more enlarged. But blood work was fineThanksPSC 8/07 (stage 1)Chiari Malformation 9/08Chiari surgery 2/3/09

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

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,

Hang in there, pal! I'm so sorry things aren't much easier yet like you were

hoping, but I'm sure good things are headed your way. :)

A lot of pain meds do go through your liver to process, but not all. I'm not

sure what ones you're on to know if they do process there or not (and even if I

knew the names of the meds, I probably still wouldn't know!) Your local

hospital (where you had the surgery or where you go back home) should have a

hepatologist on call who can answer your questions. You may have to call back

more than once, but somebody should be able to get back to you way before your

hep returns. Your hep also should have left somebody to pick up things in

his/her absence. Did he/she happen to leave you that information?

Sending you big hugs!

Sandi in VA

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,

Hang in there, pal! I'm so sorry things aren't much easier yet like you were

hoping, but I'm sure good things are headed your way. :)

A lot of pain meds do go through your liver to process, but not all. I'm not

sure what ones you're on to know if they do process there or not (and even if I

knew the names of the meds, I probably still wouldn't know!) Your local

hospital (where you had the surgery or where you go back home) should have a

hepatologist on call who can answer your questions. You may have to call back

more than once, but somebody should be able to get back to you way before your

hep returns. Your hep also should have left somebody to pick up things in

his/her absence. Did he/she happen to leave you that information?

Sending you big hugs!

Sandi in VA

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,

Hang in there, pal! I'm so sorry things aren't much easier yet like you were

hoping, but I'm sure good things are headed your way. :)

A lot of pain meds do go through your liver to process, but not all. I'm not

sure what ones you're on to know if they do process there or not (and even if I

knew the names of the meds, I probably still wouldn't know!) Your local

hospital (where you had the surgery or where you go back home) should have a

hepatologist on call who can answer your questions. You may have to call back

more than once, but somebody should be able to get back to you way before your

hep returns. Your hep also should have left somebody to pick up things in

his/her absence. Did he/she happen to leave you that information?

Sending you big hugs!

Sandi in VA

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