Jump to content
RemedySpot.com
Sign in to follow this  
Guest guest

Re: early cirhossis b4 psc symptoms?

Rate this topic

Recommended Posts

Guest guest

Hi ,

My understanding is that it is possible for PSC to progress in the background (and perhaps cause cirrhosis) without symptoms becoming evident until late in the disease. This is certainly happening to me - I was diagnosed with PSC over 10 years ago, and my disease is getting worse. Every year I have my bile ducts imaged and the strictures/narrowings get smaller, but I dont feel any different from year to year. At some point I expect to reach the tipping point, where the symptoms really kick in.

It sounds like you are booked in for an ERCP - these can be uncomfortable but are definitely worth the effort. This basically involves inserting a endoscope into the bile duct, via your large bowel, and taking some pictures. For the past 2 years I have been having an alternative test, which involves a CT scan of the bile duct, and is much less invasive. These types of tests are the only way that PSC can actually be diagnosed, and an effective way to determine disease stage. Good luck, I hope it goes well.

There is a very strong association between inflammatory bowel disease (IBD - crohn's disease and ulcerative colitis) and PSC. Approximately 75% of people with PSC will also have IBD, most often ulcerative colitis, suggesting there is some common underlying cause. Finger's crossed you are lucky and dont have one of these other diseases. I have ulcerative colitis. Thankfully treatment for IBD is pretty good, and these diseases can be managed effectively.

Does anyone else have crohn's or colitis??

Regards,

.

-----Original Message-----From: Sent: Wednesday, December 29, 2004 4:32 PMTo: sheree phelps; sam zukerman; ; norma kirkwood; judy fenton; irene tyler; graham fairless; geoff burger; don harris; damien budd; anna tonellen; alison butcher; Collie; Subject: early cirhossis b4 psc symptoms?

Hello All

I hope you had a wonderful Christmas. (Apologies Aussies if you receive this message twice)

My thoughts, prayers and well wishes to you all and those affected by the tsunami's.

I too am terribly confused by this illness. My abnormal Liver function was detected 2 years ago. Initially I had no symptoms at all except was trying to find the answer to a 3wk long headache. I had no clue I had liver problems. I have suffered from psoriasis for the last 10 years and other than that - nothing.

I'm really confused becaused it has been only in the last 3-6months that I have started suffering from jaundice, itching, diarhea - basically any PSC symptoms. Whats confusing me was that 18 months ago a liver biopsy picked up severe hepatitis and early cirhosis. My understanding is that the damage to the bile ducts eventually causes the damage to the liver.

So is it possible that the early cirhossis was caused by the PSC and that no PSC symptoms presented until now?

I saw my specialist on Christmas Eve and now have more scans/xrays scheduled - One to investigate the small bowel as the colonoscopy picked up something (not carcinoma's) - possibly Crohns. The other tests to try to identify where the major narrowings are for possibly inserting stents.

Can one feel where the narrowings are? I have developed pain like hundreds of needles in different areas since my first and very scary cholangitis attack.

Oh how I wish I could play a different game. I don't like this one much! For such a positive person I have to admit this diagnosis is taking its toll.

Hope you all have a wonderful, safe and healthy new year.

Take care

Share this post


Link to post
Share on other sites
Guest guest

PSC does lead to Cirhossis. It is my understanding that many (me too) are not symptomatic until there is quite advanced damage and disease. The liver is by design very robust and able to compensate greatly. Keep you chin up, and good luck with the test results.

Best Holiday Wishesjd, 44 and holding!UC 1973, Jpouch 2000, Pouchitis 2001, PSC 10-04ston City ILkrmpotich@...

early cirhossis b4 psc symptoms?

Hello All

I hope you had a wonderful Christmas. (Apologies Aussies if you receive this message twice)

My thoughts, prayers and well wishes to you all and those affected by the tsunami's.

I too am terribly confused by this illness. My abnormal Liver function was detected 2 years ago. Initially I had no symptoms at all except was trying to find the answer to a 3wk long headache. I had no clue I had liver problems. I have suffered from psoriasis for the last 10 years and other than that - nothing.

I'm really confused becaused it has been only in the last 3-6months that I have started suffering from jaundice, itching, diarhea - basically any PSC symptoms. Whats confusing me was that 18 months ago a liver biopsy picked up severe hepatitis and early cirhosis. My understanding is that the damage to the bile ducts eventually causes the damage to the liver.

So is it possible that the early cirhossis was caused by the PSC and that no PSC symptoms presented until now?

I saw my specialist on Christmas Eve and now have more scans/xrays scheduled - One to investigate the small bowel as the colonoscopy picked up something (not carcinoma's) - possibly Crohns. The other tests to try to identify where the major narrowings are for possibly inserting stents.

Can one feel where the narrowings are? I have developed pain like hundreds of needles in different areas since my first and very scary cholangitis attack.

Oh how I wish I could play a different game. I don't like this one much! For such a positive person I have to admit this diagnosis is taking its toll.

Hope you all have a wonderful, safe and healthy new year.

Take care

Share this post


Link to post
Share on other sites
Guest guest

Hi ,

If you remember from my earlier emails my son who is only 15 has PSC & UC. He was diagnosed with both earlier this year. So far he has had an Endoscopy & a Colonoscopy, a CT scan of his abdomen, a CT Cholangiogram, 2 MRI's of his liver & a Laparoscopic Liver Biopsy.He has regular blood tests & he is currently being managed on Ursofalk, Salofalk & Imuran. He has had several relapses of his UC whilst trialling other medications during the year being well controlled by Prednisone each time.To date has had no symptoms from his PSC. ERCP has not yet been recommended for as MRI evaluation has been sufficient for sake of comparison.

Needless to say we were very upset at the outset. However, is a well adjusted teenager who is active in sports & works hard at school. He takes his medication reliably & doesn't complain each time he has to have an examination of any kind. He isn't very keen to know all details about his chronic illness & trusts his parents to be as well- informed as possible on his behalf for the time being.

So there you have it...is the youngest member of this group ? Please let me know .

Best wishes to you all for the festive season,

Judy Fenton RE: early cirhossis b4 psc symptoms?

Hi ,

My understanding is that it is possible for PSC to progress in the background (and perhaps cause cirrhosis) without symptoms becoming evident until late in the disease. This is certainly happening to me - I was diagnosed with PSC over 10 years ago, and my disease is getting worse. Every year I have my bile ducts imaged and the strictures/narrowings get smaller, but I dont feel any different from year to year. At some point I expect to reach the tipping point, where the symptoms really kick in.

It sounds like you are booked in for an ERCP - these can be uncomfortable but are definitely worth the effort. This basically involves inserting a endoscope into the bile duct, via your large bowel, and taking some pictures. For the past 2 years I have been having an alternative test, which involves a CT scan of the bile duct, and is much less invasive. These types of tests are the only way that PSC can actually be diagnosed, and an effective way to determine disease stage. Good luck, I hope it goes well.

There is a very strong association between inflammatory bowel disease (IBD - crohn's disease and ulcerative colitis) and PSC. Approximately 75% of people with PSC will also have IBD, most often ulcerative colitis, suggesting there is some common underlying cause. Finger's crossed you are lucky and dont have one of these other diseases. I have ulcerative colitis. Thankfully treatment for IBD is pretty good, and these diseases can be managed effectively.

Does anyone else have crohn's or colitis??

Regards,

.

-----Original Message-----From: Sent: Wednesday, December 29, 2004 4:32 PMTo: sheree phelps; sam zukerman; ; norma kirkwood; judy fenton; irene tyler; graham fairless; geoff burger; don harris; damien budd; anna tonellen; alison butcher; Collie; Subject: early cirhossis b4 psc symptoms?

Hello All

I hope you had a wonderful Christmas. (Apologies Aussies if you receive this message twice)

My thoughts, prayers and well wishes to you all and those affected by the tsunami's.

I too am terribly confused by this illness. My abnormal Liver function was detected 2 years ago. Initially I had no symptoms at all except was trying to find the answer to a 3wk long headache. I had no clue I had liver problems. I have suffered from psoriasis for the last 10 years and other than that - nothing.

I'm really confused becaused it has been only in the last 3-6months that I have started suffering from jaundice, itching, diarhea - basically any PSC symptoms. Whats confusing me was that 18 months ago a liver biopsy picked up severe hepatitis and early cirhosis. My understanding is that the damage to the bile ducts eventually causes the damage to the liver.

So is it possible that the early cirhossis was caused by the PSC and that no PSC symptoms presented until now?

I saw my specialist on Christmas Eve and now have more scans/xrays scheduled - One to investigate the small bowel as the colonoscopy picked up something (not carcinoma's) - possibly Crohns. The other tests to try to identify where the major narrowings are for possibly inserting stents.

Can one feel where the narrowings are? I have developed pain like hundreds of needles in different areas since my first and very scary cholangitis attack.

Oh how I wish I could play a different game. I don't like this one much! For such a positive person I have to admit this diagnosis is taking its toll.

Hope you all have a wonderful, safe and healthy new year.

Take care

Share this post


Link to post
Share on other sites
Guest guest

Hi Graham,

You are right, of course, ERCP is via the throat. Apologies if I led anyone

astray!! I haven't had one for a long time now (I have CT scans of my bile

ducts now) so perhaps I forgot!

I had an MRCP about 18 months ago, but now have CT IVC on a yearly basis

(which I think stands for Computed Tomography Intravenous Cholangiography or

something similar) because my specialist thinks he can see the ducts more

clearly with this. It is much more pleasant than an ERCP, in any case.

Cheers,

.

early cirhossis b4 psc symptoms?

Hello

You asked if anyone else has UC or Crohn's. I have UC, diagnosed in 1982. It

has been quiescent for most of the time but has been giving me problems for

the last 9 months or so.

You mentioned that ERCP (Endoscopic Retrograde Cholangiopancreatography) is

from the large bowel. I thought ERCP was via the throat. I have had several.

See http://digestive.niddk.nih.gov/ddiseases/pubs/ercp/. I can't have an

ERCP now coz of the roux loop surgery, so have a cannula in my belly for

access. I have had a couple of MRCPs (MRI scans of the liver) - excellent

stuff. It will be great when the hospital gets one of the new scanners that

is quiet, very fast and takes many more scans in the same time (the whole

system rotates around you).

All the best everyone for 2005. Hope we all remain healthy!

Regards

Graham Fairless

Hamilton, NZ

Share this post


Link to post
Share on other sites
Guest guest

Hi Judy,

I think the answer is yes, is the youngest. He is a few years younger than I was when I was diagnosed with PSC (at age 19) and UC (at age 18), and I think a couple of the other group members were also diagnosed very early in life.

Regards,

.

-----Original Message-----From: Judy Fenton Sent: Thursday, December 30, 2004 4:57 PMTo: acollie@...; ''; 'sheree phelps'; 'sam zukerman'; ' '; 'norma kirkwood'; 'irene tyler'; 'graham fairless'; 'geoff burger'; 'don harris'; 'damien budd'; 'anna tonellen'; 'alison butcher'; Subject: Re: early cirhossis b4 psc symptoms?

Hi ,

If you remember from my earlier emails my son who is only 15 has PSC & UC. He was diagnosed with both earlier this year. So far he has had an Endoscopy & a Colonoscopy, a CT scan of his abdomen, a CT Cholangiogram, 2 MRI's of his liver & a Laparoscopic Liver Biopsy.He has regular blood tests & he is currently being managed on Ursofalk, Salofalk & Imuran. He has had several relapses of his UC whilst trialling other medications during the year being well controlled by Prednisone each time.To date has had no symptoms from his PSC. ERCP has not yet been recommended for as MRI evaluation has been sufficient for sake of comparison.

Needless to say we were very upset at the outset. However, is a well adjusted teenager who is active in sports & works hard at school. He takes his medication reliably & doesn't complain each time he has to have an examination of any kind. He isn't very keen to know all details about his chronic illness & trusts his parents to be as well- informed as possible on his behalf for the time being.

So there you have it...is the youngest member of this group ? Please let me know .

Best wishes to you all for the festive season,

Judy Fenton RE: early cirhossis b4 psc symptoms?

Hi ,

My understanding is that it is possible for PSC to progress in the background (and perhaps cause cirrhosis) without symptoms becoming evident until late in the disease. This is certainly happening to me - I was diagnosed with PSC over 10 years ago, and my disease is getting worse. Every year I have my bile ducts imaged and the strictures/narrowings get smaller, but I dont feel any different from year to year. At some point I expect to reach the tipping point, where the symptoms really kick in.

It sounds like you are booked in for an ERCP - these can be uncomfortable but are definitely worth the effort. This basically involves inserting a endoscope into the bile duct, via your large bowel, and taking some pictures. For the past 2 years I have been having an alternative test, which involves a CT scan of the bile duct, and is much less invasive. These types of tests are the only way that PSC can actually be diagnosed, and an effective way to determine disease stage. Good luck, I hope it goes well.

There is a very strong association between inflammatory bowel disease (IBD - crohn's disease and ulcerative colitis) and PSC. Approximately 75% of people with PSC will also have IBD, most often ulcerative colitis, suggesting there is some common underlying cause. Finger's crossed you are lucky and dont have one of these other diseases. I have ulcerative colitis. Thankfully treatment for IBD is pretty good, and these diseases can be managed effectively.

Does anyone else have crohn's or colitis??

Regards,

.

-----Original Message-----From: Sent: Wednesday, December 29, 2004 4:32 PMTo: sheree phelps; sam zukerman; ; norma kirkwood; judy fenton; irene tyler; graham fairless; geoff burger; don harris; damien budd; anna tonellen; alison butcher; Collie; Subject: early cirhossis b4 psc symptoms?

Hello All

I hope you had a wonderful Christmas. (Apologies Aussies if you receive this message twice)

My thoughts, prayers and well wishes to you all and those affected by the tsunami's.

I too am terribly confused by this illness. My abnormal Liver function was detected 2 years ago. Initially I had no symptoms at all except was trying to find the answer to a 3wk long headache. I had no clue I had liver problems. I have suffered from psoriasis for the last 10 years and other than that - nothing.

I'm really confused becaused it has been only in the last 3-6months that I have started suffering from jaundice, itching, diarhea - basically any PSC symptoms. Whats confusing me was that 18 months ago a liver biopsy picked up severe hepatitis and early cirhosis. My understanding is that the damage to the bile ducts eventually causes the damage to the liver.

So is it possible that the early cirhossis was caused by the PSC and that no PSC symptoms presented until now?

I saw my specialist on Christmas Eve and now have more scans/xrays scheduled - One to investigate the small bowel as the colonoscopy picked up something (not carcinoma's) - possibly Crohns. The other tests to try to identify where the major narrowings are for possibly inserting stents.

Can one feel where the narrowings are? I have developed pain like hundreds of needles in different areas since my first and very scary cholangitis attack.

Oh how I wish I could play a different game. I don't like this one much! For such a positive person I have to admit this diagnosis is taking its toll.

Hope you all have a wonderful, safe and healthy new year.

Take care

Share this post


Link to post
Share on other sites
Guest guest

,

Hello, my daughter () was diagnosed at 14 with PSC. She also

has 's disease (diagnosed at age 7) which is also an auto-

immune disorder, but not usually found with PSC. She has not had

any symptoms from PSC and is talking ursodiol for her PSC and cortef

for her 's. Her liver enzymes are having been close to

normal for the last couple of years, with the exceptions of when she

had mono. The biggest problem she seems to have is when she is ill

with other illness; it is hard to find an antibiotic that is not

processed by the liver. (She is also allergic to Ceclor, so this

also limits her doctor's choices). She is now 18 and a full time

college student. This illness hasn't impacted her life except for

routine doctor appointments and getting turned down for life

insurance and the military (she wanted to get an ROTC scholarship

and was turned down due to her illnesses).

I believe there may be a couple of people younger than in

this group.

Happy New Year

Dia

> Hi Judy,

>

> I think the answer is yes, is the youngest. He is a few

years

> younger than I was when I was diagnosed with PSC (at age 19) and

UC (at age

> 18), and I think a couple of the other group members were also

diagnosed

> very early in life.

>

> Regards,

> .

>

>

>

> Re: early cirhossis b4 psc symptoms?

>

>

> Hi ,

> If you remember from my earlier emails my son who is only

15 has PSC

> & UC. He was diagnosed with both earlier this year. So far he has

had an

> Endoscopy & a Colonoscopy, a CT scan of his abdomen, a CT

Cholangiogram, 2

> MRI's of his liver & a Laparoscopic Liver Biopsy.He has regular

blood tests

> & he is currently being managed on Ursofalk, Salofalk & Imuran. He

has had

> several relapses of his UC whilst trialling other medications

during the

> year being well controlled by Prednisone each time.To date

has had

> no symptoms from his PSC. ERCP has not yet been recommended for

as

> MRI evaluation has been sufficient for sake of comparison.

> Needless to say we were very upset at the outset. However,

is a well

> adjusted teenager who is active in sports & works hard at school.

He takes

> his medication reliably & doesn't complain each time he has to

have an

> examination of any kind. He isn't very keen to know all details

about his

> chronic illness & trusts his parents to be as well- informed as

possible on

> his behalf for the time being.

> So there you have it...is the youngest member of this

group ? Please

> let me know .

> Best wishes to you all for the festive season,

> Judy Fenton early cirhossis b4 psc symptoms?

>

>

> Hello All

> I hope you had a wonderful Christmas. (Apologies Aussies if you

receive

> this message twice)

> My thoughts, prayers and well wishes to you all and those affected

by the

> tsunami's.

>

> I too am terribly confused by this illness. My abnormal Liver

function was

> detected 2 years ago. Initially I had no symptoms at all except

was trying

> to find the answer to a 3wk long headache. I had no clue I had

liver

> problems. I have suffered from psoriasis for the last 10 years

and other

> than that - nothing.

> I'm really confused becaused it has been only in the last 3-

6months that I

> have started suffering from jaundice, itching, diarhea - basically

any PSC

> symptoms. Whats confusing me was that 18 months ago a liver

biopsy picked

> up severe hepatitis and early cirhosis. My understanding is that

the damage

> to the bile ducts eventually causes the damage to the liver.

> So is it possible that the early cirhossis was caused by the PSC

and that no

> PSC symptoms presented until now?

> I saw my specialist on Christmas Eve and now have more scans/xrays

scheduled

> - One to investigate the small bowel as the colonoscopy picked up

something

> (not carcinoma's) - possibly Crohns. The other tests to try to

identify

> where the major narrowings are for possibly inserting stents.

> Can one feel where the narrowings are? I have developed pain like

hundreds

> of needles in different areas since my first and very scary

cholangitis

> attack.

> Oh how I wish I could play a different game. I don't like this one

much!

> For such a positive person I have to admit this diagnosis is

taking its

> toll.

>

> Hope you all have a wonderful, safe and healthy new year.

>

> Take care

>

Share this post


Link to post
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
Sign in to follow this  

×
×
  • Create New...