Help.

[Guest guest]

We learned about your website through a publication put out by the American

Liver Foundation. My husband has been extremely ill with a rare un-diagnosed

liver disease for 11 months now. Currently he has three tubes placed

intrahepatically. One directly in the CBD and one in his hepatic duct. The

other was placed with CT guidance into the dome of his liver. It all began

when he became extremely jaundice. LFT's showed a bilirubin level of 9.3, and

an alkaline phosphatase level of 1,032. The did a CT which showed a blockage.

Then they did an ERCP and placed a stent. As a result of the ERCP he got a

raging case of pancreatitis secondary to the procedure. He was put on TPN and

subsequently contracted a pseudomonas infection in his blood. He spiked a fever

of 105 and was considered septic.

The doctors said that he had cholangitis, an inflammation of the bile ducts and

that pressure was building in his liver because the bile was unable to exit and

was becoming infected. They took him off to the OR. After 3 hours the doctor

told me that he bled out the majority of his blood due to his PT being

compromised by the liver. He was unable to do an exploratory to determine the

cause of his blockage. He labeled his diagnoses as cholangiolytic hepatitis and

that his chances were very poor.

Since then he has had a gastrojejunostomy, due to a blockage in the duodenum,

and now has a feeding jejunostomy. Nitely, I place all the bile that exits his

body via the bile bags back into the jejunostomy along with a high protein, high

fat supplement. He has managed to gain 20 pounds since January but continues to

get recurrent abscesses in the liver. I flush and aspirate all tubes twice a

day to insure proper drainage. They won't commit to a diagnosis. They say it's

too risky to do a liver biopsy. His blood was drawn on the 30th and his

alkaphosphatase was 1,304, and bilirubin was 1.9. His WBC's were 18.5. He has

some pleural effusion on the left side that they want to tap this week. I asked

the doctor if he thought he might have PSC , his response was I don't think so.

What can we do.

They say that their goal is to hook up a loop of his small bowel to his liver.

Will this solve all the problems with the abscesses? He recently was taken to

Prescott, Az for a MRCP. According to the report there was alot of dilatation,

fibrosis, and possible space occuping lesions. They say if it were

cholangiocarcinoma he would'nt be here right now. We are going crazy. He is a

Veteran, so the VA Hospital is where we have been going. If you can think of

any thing to help with his diagnosis we would sincerely appreciate it.

Thank you,

a and Tony

Mesa, Az

[Guest guest]

Hi Palua,

Where do you live? The reason I ask, if you have other

medical centers you could go to and get a second opinion. Like someone said

cholangiolytic hepatitis is just big words for sick liver. I would try to

find a university hospital that has a gastro-dept. or even a tx center, both

should be able to give you much better answers than you are getting now.

Please keep us posted and we will try to help as much as we can.

Jeff - husband of Tina (UC, PSC

since 98)

Help.

>We learned about your website through a publication put out by the American

Liver Foundation. My husband has been extremely ill with a rare

un-diagnosed liver disease for 11 months now. Currently he has three tubes

placed intrahepatically. One directly in the CBD and one in his hepatic

duct. The other was placed with CT guidance into the dome of his liver.

It all began when he became extremely jaundice. LFT's showed a bilirubin

level of 9.3, and an alkaline phosphatase level of 1,032. The did a CT which

showed a blockage. Then they did an ERCP and placed a stent. As a result

of the ERCP he got a raging case of pancreatitis secondary to the procedure.

He was put on TPN and subsequently contracted a pseudomonas infection in his

blood. He spiked a fever of 105 and was considered septic.

>The doctors said that he had cholangitis, an inflammation of the bile ducts

and that pressure was building in his liver because the bile was unable to

exit and was becoming infected. They took him off to the OR. After 3 hours

the doctor told me that he bled out the majority of his blood due to his PT

being compromised by the liver. He was unable to do an exploratory to

determine the cause of his blockage. He labeled his diagnoses as

cholangiolytic hepatitis and that his chances were very poor.

>Since then he has had a gastrojejunostomy, due to a blockage in the

duodenum, and now has a feeding jejunostomy. Nitely, I place all the bile

that exits his body via the bile bags back into the jejunostomy along with a

high protein, high fat supplement. He has managed to gain 20 pounds since

January but continues to get recurrent abscesses in the liver. I flush and

aspirate all tubes twice a day to insure proper drainage. They won't commit

to a diagnosis. They say it's too risky to do a liver biopsy. His blood

was drawn on the 30th and his alkaphosphatase was 1,304, and bilirubin was

1.9. His WBC's were 18.5. He has some pleural effusion on the left side

that they want to tap this week. I asked the doctor if he thought he might

have PSC , his response was I don't think so. What can we do.

>They say that their goal is to hook up a loop of his small bowel to his

liver. Will this solve all the problems with the abscesses? He recently

was taken to Prescott, Az for a MRCP. According to the report there was

alot of dilatation, fibrosis, and possible space occuping lesions. They say

if it were cholangiocarcinoma he would'nt be here right now. We are going

crazy. He is a Veteran, so the VA Hospital is where we have been going. If

you can think of any thing to help with his diagnosis we would sincerely

appreciate it.

>

>Thank you,

>a and Tony

>Mesa, Az

>

>

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