Re: Newbie sharing her story and looking for info

May 28, 2006

,

I started having cholangitis attacks in 1994. I wasn't diagnosed until

1998. I didn't have any antibiotics for all those years unless I

happened to be on them for another reason...I feel exceedingly lucky

that I made it through that time because I've since read the abysmal

statistics on untreated cholangitis attacks leading to sepsis...I'd

push for antibiotics as soon as you start an attack.

HTH,

Deb in VA

May 28, 2006

,

I started having cholangitis attacks in 1994. I wasn't diagnosed until

1998. I didn't have any antibiotics for all those years unless I

happened to be on them for another reason...I feel exceedingly lucky

that I made it through that time because I've since read the abysmal

statistics on untreated cholangitis attacks leading to sepsis...I'd

push for antibiotics as soon as you start an attack.

HTH,

Deb in VA

May 28, 2006

,

I started having cholangitis attacks in 1994. I wasn't diagnosed until

1998. I didn't have any antibiotics for all those years unless I

happened to be on them for another reason...I feel exceedingly lucky

that I made it through that time because I've since read the abysmal

statistics on untreated cholangitis attacks leading to sepsis...I'd

push for antibiotics as soon as you start an attack.

HTH,

Deb in VA

May 28, 2006

Deb,

Your help has been tremendous so far, even if it's not what I want to hear.

Interesting now about the sepsis. From spring of 2004 until maybe January this

year,

I noticed no symptoms whatsoever. No attacks. No thyroid issues. Perfectly

fine.

Still didn't drink alcohol for fear of bringing on an attack, but I felt good.

Two weeks

postpartum in early September, I had a very high fever. It didn't feel like an

attack, it

felt more like I might have been dealing with a clogged milk duct. Anyway, I

didn't

have any pain, just the fever. But the fever was - no exaggeration - 104.7.

And I had

been taking fever reducers. My OBGYN put me on an antibiotic, but I had to

follow up

with my family doc. She put me on two different antibiotics, and she considered

hospitalizing me because she was afraid of sepsis. I believe my liver levels

were fine

for that time, but they did find bilirubin in my urine. Blood was pretty clean,

though.

The fever responded to the antibiotics, and nothing else was said or done about

it.

So here's where I am now...

I won't have an appointment with the liver specialist until June 8. I am fully

expecting

an attack this upcoming week because I should be starting my period about June

7. I

have no diagnosis yet. My question is, as long as these are mild episodes, am I

okay

just surviving it by myself? Or would my family doc be able to provide me with

an

antibiotic specifically for these occasions? These last four months the attacks

have

been very mild. I haven't felt the need to take an antacid, and the fever has

been

under 100. Certainly not ER conditions. Should I call my family doc on Tuesday

and

see if there's any way she can see me and prescribe an antibiotic? How much

damage

is being done when it's untreated, even if it's not a severe attack?

I can't begin to thank you for all of your info. So far, you seem to mirror

what I am

experiencing. Unfortunately for you, I think these questions are just going to

be the

tip of the iceberg. You can imagine the list that I'm building when it comes to

thinking about the ERCP, drugs, transplants... lord.

>

> ,

> I started having cholangitis attacks in 1994. I wasn't diagnosed until

> 1998. I didn't have any antibiotics for all those years unless I

> happened to be on them for another reason...I feel exceedingly lucky

> that I made it through that time because I've since read the abysmal

> statistics on untreated cholangitis attacks leading to sepsis...I'd

> push for antibiotics as soon as you start an attack.

>

> HTH,

> Deb in VA

>

May 28, 2006

Deb,

Your help has been tremendous so far, even if it's not what I want to hear.

Interesting now about the sepsis. From spring of 2004 until maybe January this

year,

I noticed no symptoms whatsoever. No attacks. No thyroid issues. Perfectly

fine.

Still didn't drink alcohol for fear of bringing on an attack, but I felt good.

Two weeks

postpartum in early September, I had a very high fever. It didn't feel like an

attack, it

felt more like I might have been dealing with a clogged milk duct. Anyway, I

didn't

have any pain, just the fever. But the fever was - no exaggeration - 104.7.

And I had

been taking fever reducers. My OBGYN put me on an antibiotic, but I had to

follow up

with my family doc. She put me on two different antibiotics, and she considered

hospitalizing me because she was afraid of sepsis. I believe my liver levels

were fine

for that time, but they did find bilirubin in my urine. Blood was pretty clean,

though.

The fever responded to the antibiotics, and nothing else was said or done about

it.

So here's where I am now...

I won't have an appointment with the liver specialist until June 8. I am fully

expecting

an attack this upcoming week because I should be starting my period about June

7. I

have no diagnosis yet. My question is, as long as these are mild episodes, am I

okay

just surviving it by myself? Or would my family doc be able to provide me with

an

antibiotic specifically for these occasions? These last four months the attacks

have

been very mild. I haven't felt the need to take an antacid, and the fever has

been

under 100. Certainly not ER conditions. Should I call my family doc on Tuesday

and

see if there's any way she can see me and prescribe an antibiotic? How much

damage

is being done when it's untreated, even if it's not a severe attack?

I can't begin to thank you for all of your info. So far, you seem to mirror

what I am

experiencing. Unfortunately for you, I think these questions are just going to

be the

tip of the iceberg. You can imagine the list that I'm building when it comes to

thinking about the ERCP, drugs, transplants... lord.

>

> ,

> I started having cholangitis attacks in 1994. I wasn't diagnosed until

> 1998. I didn't have any antibiotics for all those years unless I

> happened to be on them for another reason...I feel exceedingly lucky

> that I made it through that time because I've since read the abysmal

> statistics on untreated cholangitis attacks leading to sepsis...I'd

> push for antibiotics as soon as you start an attack.

>

> HTH,

> Deb in VA

>

May 29, 2006

Expecially with the vomiting, I would want to rule out pancreatitis -

it often goes undiagnosed...and I had an extreme case (necotizing

pancreatitis) and survived it and now have it chronically --- anyhow

for anyone dealing with it, I found that digestive enzymes WITH

prilosec really help, the idea is to support the pancreas so it

doesn't have to work so hard .. I get back pain across my rib cage,

nausea (I don't often vomit, but know that's a symptom) ... and

fatty foods are a culprit (also fatty foods make the gallbladder

have to work - to break down the fats - so if bile ducts are

clogged, I suppose that could cause pain too??? Layman's

explanation, not DR)... anyhow, hot baths also really help the pain

as does heating pad across the back...I've been hospitalized for

this and its REALLY painful when not in control ... had to be on

morphine, etc for months and other pain killers for years...which by

the way, I found a FANTASTIC alternative/holistic doctor at the New

Life Health Center in Jamaica Plain, MA (outside Boston) who took

away the pain within days and really helped my overall disgestive

systom ... I was down to 95 pounds and few red blood platlets...he

was successfully treating people with all kinds of digestive

diseases as well as cancers...I highly recommend him, AND, you can

call and he's honest about what he feels he can help and what

not ... (Dr. Lee) does accupunture, herbal rememedies, holds daily

mini seminars on your health ... great place to heal...He brought me

back from the brink of death, honestly... I haven't yet asked him to

treat my PSC, but may do that at some point ... I'm thinking he may

be able to help with the fatigue...as I said, he really saved my

life.

> ,

> > My initial experience with cholangitis attacks was similar to

yours,

> ...

>

> Tim -

> What confounds and confuses me is that my son, and it seems some

> others too, have similar abdominal pain, but different. For years,

> has had what we thought was " extreme " GERD, reflux. Sometimes

> his abdominal pain is substernal chest pain, sometimes vomiting,

> sometimes pain across his entire rib cage. In the past six months

it

> is much worse and more frequent. In past Ranitidine helped

(unless he

> ate really fatty food - then he would just vomit). Now he requires

> daily Prilosec and still has intermittent symptoms. At times is on

> twice daily Prilosec. His GI thinks it is esophageal spasm.

>

> Maybe it is that now I know he has PSC, so I am convinced that PSC

has

> something to do with it! His symptoms now are often worse at

night.

> Sometimes he is just nauseous for a day, or two, or three - yuck!

>

> I wish we could do some complex statistical analysis of everyone's

> upper GI symtpoms (I know the colitis adds complexity) to see if

any

> patterns emerge or to at least see the range of symtpoms. Be

> interesting to see what works for different people too.

>

> Joanne

> (, Ca; mom of , 15, UC/PSC 2-06; " GERD " 2002; JRA 1999)

>

May 29, 2006

,

I would see what your family doctor thinks. Tell him/her the situation

and how you believe that these might be cholangitis attacks based on

what you've read and how the specialist is pursuing your diagnosis. (I

wouldn't necessarily mention anything about your period - I've found

that depending on the doc, that can limit your credibility - sad to

say, I know.) See what he/she says. At the very least, I'd keep a

thermometer handy and monitor your symptoms closely once one started

to see if you were getting sick enough to consider the ER. I would

hate to tell you not to worry about it and then have this be the time

that something dire happened...

I hope this helps. When you get into making tough decisions like that,

it is hard to say one way or another without being a doctor myself.

Hang in there...

Deb in VA

May 29, 2006