RE: Cholangitis Recovery

[Guest guest]

Genevieve - I think you'll find there is a wide range of experiences. My two cholangitis episodes both resulted in ER trips and hospital admissions. However, they were both accompanied with pancreatitis, which extended my hospital stay to 5-6 days. I did not experience all of the symptoms you're noting though. When I was discharged, I was pretty much back to normal (whatever that is).

The symptoms you're describing sound like hepatic encephalopathy (HE). I have no personal experience with it, but it sounds like what others have experienced. Did they check your ammonia level? Are you taking questran (cholestramine)? I think these are questions your physicians need to field.

According to http://www.medscape.com/viewarticle/463473_3, the link between infection and HE is poorly understood, but it is well-known that they are related. They HE resulting from infection is apparently different from that of liver failure.

Hope you feel better (and get some answers) soon.

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

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From: [mailto: ] On Behalf Of Genevieve

Hi all,

So what I want to know is.... How long does it generally take to

recover from an acute cholangitis attack

[Guest guest]

-----Original

Message-----

He hasn’t had one

of those “spike a temp” episodes since, and that’s 14 months,

now.

You may have

heard this story from me many times, if so I apologize about repeating it. We had a group member named Peg (her husband was Phil)

Phil had Cholangitis attacks (it seemed weekly) for sure, at least several

times a month. He spent much of the

time in the hospital, the attacks made him so sick we all worried about him. They finally listed him and we were

pretty sure, he would get a new liver in a fairly short time. He didn’t! Instead (almost like a light switch) he stopped

getting attacks. They didn’t

space out…..they just stopped.

We couldn’t figure out why or how. He and his wife of course didn’t

care why, just happy they did. That

was several years ago – he hasn’t had an attack since. He was removed from the “the list”

well over two years ago. Phil started

a new business and travels to China almost monthly and is still doing very well.

I feel for the woman

who quit the group this week (hi hubby!) The only reason I’m telling you

this story again, is because PSC is so darn strange that you can never tell how

or when it will make you sick or for how long or if at all. You just have to get up each day and play

the cards you’re dealt – that day. It may take a long time to get over this

attack, but the next time it might be over before you actually get seen in the

ER! Or you may never have another

attack at all. It’s totally

crazy, but it’s our PSC.

Barb in Texas - Together in the

Fight.... Whatever it Takes!

,_._,___