hello - I am new and need some advice

[Guest guest]

I posted here a couple of years ago when I was first diagnosed with

PSC. Everyone was so very nice and i was really impressed with the

support.

Some history - I've had a j-pouch for 9 years which is a constant

battle having pouchitis regularly. I believe I have had PSC for 5-7

years, diagnosed in 2001. I live in somewhat of a rural area and am

concerned if there is an emergency, what I would do. I am writing

today since I am a little nervous. I have had a dull pain in my right

upper quandrant all day. I have had, in the past, sharp occasional

pains but nothing that has lasted this long. It is not excruciating

but has me really concerned. Could this be the beginning of a

bacterial infection? I know my duct is very narrow in a small area

(MRCP) and if I am in an emergency situation where I needed a stent, I

would have to be helicopter to UCLA. Could the time element be a

problem? This may not happen but I think I need to be prepared. Any

comments would be very appreciated.

Donna

[Guest guest]

Dear Donna;

I'm sorry to hear about your recent pains. It's possible that you

might have the beginning of a cholangitis attack, since the upper

right quadrant pain is frequently associated with cholangitis. Here's

an article on cholangitis from MDAdvice.com:

http://www.mdadvice.com/library/symp/illness85.html

Some of the other symptoms of cholangitis include:

- Tenderness in the upper abdomen.

- Nausea and vomiting.

- Belching.

- Slight fever. If high fever and chills occur, a bacterial infection

is present.

- Jaundice (yellow skin or eyes) (sometimes).

- Pale stools (sometimes).

- Skin itching (sometimes).

According to this article, symptoms of some mild attacks subside

spontaneously in 1 to 4 days, if no complications develop. However,

if you get fever and chills this will require antibiotics as soon as

possible. I would definitely recommend calling your doctor to get

his/her advice.

I do hope that it is only a mild attack that spontaneously subsides.

But it's good that you are developing a plan to be prepared in case

it doesn't resolve.

Best regards, and take care,

Dave

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

Donna,

I know the desperate feeling that you're describing. I was on a

business trip to MT a few years ago, and I had a cholangitis attack

in my hotel room. Luckily, my doctor back East called in my Rx for

antibiotics the next morning and I was able to get started right

away. Being in pain where medical facilities are in doubt is very

scary and probably makes you think about the pain more and feel worse

about it.

I'm not sure I have an answer to your question. If I were you, I'd

want a doctor whom I could call at all hours to seek a professional

opinion so that I could determine what to do next. If you had an

infection, a standard emergency room - working on the orders of your

doctor miles away - could provide adequate antibiotics to cover the

infection. Is there one of those within reasonable driving distance?

If you needed transport to UCLA because the situation didn't clear at

the local hospital or more intervention was necessary, perhaps that

could be worked out after this first plan was exhausted?

Just ideas. I don't know your situation exactly, though I am familiar

with worrying about new pain. At the least, I'd call the doc and seek

reassurance. (In my experience, blocked ducts can cause sharp and

brief pains or long and dull pains without there being an infection,

but I've also had infections that started just as you described.)

BTW, I've never known a stent to be placed as an " emergency " therapy.

I hope your pain improves quickly!

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, MELD 17

[Guest guest]

>

> Donna,

> I know the desperate feeling that you're describing. I was on a

> business trip to MT a few years ago, and I had a cholangitis attack

> in my hotel room. Luckily, my doctor back East called in my Rx for

> antibiotics the next morning and I was able to get started right

> away. Being in pain where medical facilities are in doubt is very

> scary and probably makes you think about the pain more and feel worse

> about it.

>

> I'm not sure I have an answer to your question. If I were you, I'd

> want a doctor whom I could call at all hours to seek a professional

> opinion so that I could determine what to do next. If you had an

> infection, a standard emergency room - working on the orders of your

> doctor miles away - could provide adequate antibiotics to cover the

> infection. Is there one of those within reasonable driving distance?

> If you needed transport to UCLA because the situation didn't clear at

> the local hospital or more intervention was necessary, perhaps that

> could be worked out after this first plan was exhausted?

>

> Just ideas. I don't know your situation exactly, though I am familiar

> with worrying about new pain. At the least, I'd call the doc and seek

> reassurance. (In my experience, blocked ducts can cause sharp and

> brief pains or long and dull pains without there being an infection,

> but I've also had infections that started just as you described.)

> BTW, I've never known a stent to be placed as an " emergency " therapy.

>

> I hope your pain improves quickly!

> Deb in VA

> PSC 1998, UC 1999, Listed Ltx 2001, MELD 17

I am wanting to reply to this and am not sure if this is how it works.

Here goes - Thank you so much for your advice. It so nice to talk to

people who are in the same boat as you are, especially when they have

felt the same pains. I thought that the stent placement was done in

an emergency situation but now I know differently. The pain is

exactly like you said, sometimes sharp and that's it or like

yesterday, a dull constant ache. Today it is an off and on dull ache

so I guess that is better. I tried to get into the dr next week but

she is out of town. I might have misrepresented this area. We do

have hospitals and good doctors but no one specializes in livers so I

do not fully trust them in an emergency situation.

Deb, I am curious as to why you would not have a supply of antibiotics

with you just in case?? I have Cipro for my pouchitis and was tempted

to take one but am not sure I should be doctoring myself.

How long have you had PSC?

[Guest guest]

>

> Dear Donna;

>

> I'm sorry to hear about your recent pains. It's possible that you

> might have the beginning of a cholangitis attack, since the upper

> right quadrant pain is frequently associated with cholangitis. Here's

> an article on cholangitis from MDAdvice.com:

>

> http://www.mdadvice.com/library/symp/illness85.html

>

> Some of the other symptoms of cholangitis include:

>

> - Tenderness in the upper abdomen.

>

> - Nausea and vomiting.

>

> - Belching.

>

> - Slight fever. If high fever and chills occur, a bacterial infection

> is present.

>

> - Jaundice (yellow skin or eyes) (sometimes).

>

> - Pale stools (sometimes).

>

> - Skin itching (sometimes).

>

> According to this article, symptoms of some mild attacks subside

> spontaneously in 1 to 4 days, if no complications develop. However,

> if you get fever and chills this will require antibiotics as soon as

> possible. I would definitely recommend calling your doctor to get

> his/her advice.

>

> I do hope that it is only a mild attack that spontaneously subsides.

> But it's good that you are developing a plan to be prepared in case

> it doesn't resolve.

>

> Best regards, and take care,

>

> Dave

> (father of (19); PSC 07/03; UC 08/03)

Dave,

I wrote back to you and thought I sent it but perhaps not. If there

is a somewhat duplicate response, excuse me.

Thanks for being here and helping me understand a little more than I

do. My pain was had subsided this morning but late this afternoon it

starting up again. More than discomfort, it is fear of what this will

lead to. I have had my trips to ER many times with my j-pouch and

then after a liver biopsy so I know what severe pain is like. Also it

is verifying that I have this terrible disease. Without a symptom, it

is on the back burner and I do not worry about it toomuch. I have

come Cipro and am wondering if I should take that as a precaution.

Since I was feeling better today I did not call my family dr. I am

however trying to get into my GI at UCLA. I think it is time for a

plan just in case.

My heart goes out to you and your family regarding your son. He is so

young to have to be dealing with the sort of disease.

[Guest guest]

Dear Donna;

Some members of this group do take Cipro when they are experiencing a

cholangitis attack. But as noted on the following web page there are

other antibiotics that can be used to treat different bacteria. This

web page encourages the selection of the appropriate antibiotic in

careful consultation with your primary physician based on history and

clinical presentation:

Cholangitis (eMedicine)

http://www.emedicine.com/MED/topic2665.htm

" Possible antibiotic treatments include penicillin derivatives (eg,

piperacillin) or a second- or third-generation cephalosporin (eg,

ceftazidime) for gram-negative coverage, ampicillin for gram-positive

coverage, and metronidazole for anaerobic coverage. Some researchers

have reported use of fluoroquinolones (eg, ciprofloxacin,

levofloxacin) as effective therapy. "

" The selection and dosing of appropriate antibiotics and other

medications listed below or from another source must be performed by

the patient's primary physician and gastroenterologist based on

history and clinical presentation. "

" Ciprofloxacin (Cipro) -- has activity against Pseudomonas species,

streptococci, MRSA, Staphylococcus epidermidis, and most gram-

negative organisms but no activity against anaerobes. "

As mentioned by others, fevers and chills are a signal of bacterial

infection, and you should not hesitate to seek help to get on the

appropriate antibotic(s) as soon as possible. Taking Cipro would

certainly be better than taking nothing if you find yourself

experiencing fever and chills without ready access to a hospital.

Take care,

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)