Looks like its back again!

[Guest guest]

Hi Folks,

I think I am getting cholangitis yet again (I have had 5 episodes so far this year alone.) Just coming up to Easter too. The RUQ pain is getting worse as the day progresses and I guess it'll have to be a visit to the Drs tomorrow or Saturday (if they are not available tomorrow that is). I hope you are all doing well.

Happy Easter,

Barbara (UK)

[Guest guest]

I think I am getting cholangitis yet again

I'm sorry to hear this. Just last weekend it reared its ugly head at my house also. Last time I saw my doc he wrote a prescription for the antibiotic and gave me 2 refills. I sure appreciated that on Saturday when I could just call in the refill. Ask your doctor if he will do that for you. Could you just call him on the phone and tell him your situation instead of going to his office? If you have had so many attacks this year alone surely he can be assured that you know the symptoms without him seeing you every time. Hope you get some help soon.

Blessings,

Barby

married 22 years, mom of 5 sons (ages 10-21) KS

UC - dx in 1965 (11yo), total proctocolectomy with ileoostomy 1972, BCIR (continent ileoostomy)1994

PSC- dx in 1999

nordgren1@...

[Guest guest]

I think I am getting cholangitis yet again

I'm sorry to hear this. Just last weekend it reared its ugly head at my house also. Last time I saw my doc he wrote a prescription for the antibiotic and gave me 2 refills. I sure appreciated that on Saturday when I could just call in the refill. Ask your doctor if he will do that for you. Could you just call him on the phone and tell him your situation instead of going to his office? If you have had so many attacks this year alone surely he can be assured that you know the symptoms without him seeing you every time. Hope you get some help soon.

Blessings,

Barby

married 22 years, mom of 5 sons (ages 10-21) KS

UC - dx in 1965 (11yo), total proctocolectomy with ileoostomy 1972, BCIR (continent ileoostomy)1994

PSC- dx in 1999

nordgren1@...

[Guest guest]

I think I am getting cholangitis yet again

I'm sorry to hear this. Just last weekend it reared its ugly head at my house also. Last time I saw my doc he wrote a prescription for the antibiotic and gave me 2 refills. I sure appreciated that on Saturday when I could just call in the refill. Ask your doctor if he will do that for you. Could you just call him on the phone and tell him your situation instead of going to his office? If you have had so many attacks this year alone surely he can be assured that you know the symptoms without him seeing you every time. Hope you get some help soon.

Blessings,

Barby

married 22 years, mom of 5 sons (ages 10-21) KS

UC - dx in 1965 (11yo), total proctocolectomy with ileoostomy 1972, BCIR (continent ileoostomy)1994

PSC- dx in 1999

nordgren1@...

[Guest guest]

Barb,

I am terribly sorry to hear that you are sick again! Five times in 3 months is more than a person should have to endure. Where are you in terms of transplantation? Seems to me that have cholangitis so many times you'd be ready.

Take care and happy Easter!

[Guest guest]

Barb,

I am terribly sorry to hear that you are sick again! Five times in 3 months is more than a person should have to endure. Where are you in terms of transplantation? Seems to me that have cholangitis so many times you'd be ready.

Take care and happy Easter!

[Guest guest]

Barb,

I am terribly sorry to hear that you are sick again! Five times in 3 months is more than a person should have to endure. Where are you in terms of transplantation? Seems to me that have cholangitis so many times you'd be ready.

Take care and happy Easter!

[Guest guest]

Barbara, I am sorry to hear about this latest

attack...I sure hope your doctor is available over the

holiday...if not, don't hesitate to nip it in the bud

by going to the ER room. Better to tough out the ER

wait than to wait at home in discomfort. I will be

praying for you.

=====

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

__________________________________________________

[Guest guest]

Barbara, I am sorry to hear about this latest

attack...I sure hope your doctor is available over the

holiday...if not, don't hesitate to nip it in the bud

by going to the ER room. Better to tough out the ER

wait than to wait at home in discomfort. I will be

praying for you.

=====

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

__________________________________________________

[Guest guest]

Barbara,

Sorry to hear you are not feeling well. Our prayers are with you.

Feel better

Joanne (todd's mom, 16, dx PSC 12/01 crohns 1/02)

[Guest guest]

Barbara,

Sorry to hear you are not feeling well. Our prayers are with you.

Feel better

Joanne (todd's mom, 16, dx PSC 12/01 crohns 1/02)

[Guest guest]

Barbara,

I second on that one. A few days can really

make a difference on how quickly you recover from each

infection. Infact waiting around could cause it to go

into sepsis that can be very bad even deadly.

Phil had an ERCP last April where they removed some

sludge and a stone. They explained that a stone could

be in the duct bouncing around and when it got stuck

he would get an infection. When he was first

diagnosed he had 4 infections in 3 months, then he

went a year, then 9 months and now it's almost a year

since the procedure they did to clean out and dialate

his main duct. The thing is that since they did this

last procedure he doesn't even have the fatigue that

he had before.

His series of 4 infections in 3 months is what got him

listed (that was in 1999 and list 2000 when the

listing process was different).

We don't fool around. If the doctor is available we

go there first but if it's late at night or the

weekend we go straight to the ER and every time he's

been admitted for IV Cipro treatment. When he gets in

right away he feels better by the next morning and

goes home in a couple of days. We are fortunate that

we are able to go in, tell them to call the GI team

and he gets admitted (course he has always had a temp

of almost 101 or more) and they run tests in the ER

that usually show the increase in bili. We just had

one time that the nurse in the ER gave us a hard time

but we stood firm that we were NOT going to wait at

Urgent care with all those SICK people coughing on

him.

Sorry that you are having to go through this so much

it is a downer for sure.

Peg

if not, don't hesitate to nip it in the

> bud

> by going to the ER room. Better to tough out the ER

> wait than to wait at home in discomfort. I will be

> praying for you.

>

__________________________________________________

[Guest guest]

Barbara,

I second on that one. A few days can really

make a difference on how quickly you recover from each

infection. Infact waiting around could cause it to go

into sepsis that can be very bad even deadly.

Phil had an ERCP last April where they removed some

sludge and a stone. They explained that a stone could

be in the duct bouncing around and when it got stuck

he would get an infection. When he was first

diagnosed he had 4 infections in 3 months, then he

went a year, then 9 months and now it's almost a year

since the procedure they did to clean out and dialate

his main duct. The thing is that since they did this

last procedure he doesn't even have the fatigue that

he had before.

His series of 4 infections in 3 months is what got him

listed (that was in 1999 and list 2000 when the

listing process was different).

We don't fool around. If the doctor is available we

go there first but if it's late at night or the

weekend we go straight to the ER and every time he's

been admitted for IV Cipro treatment. When he gets in

right away he feels better by the next morning and

goes home in a couple of days. We are fortunate that

we are able to go in, tell them to call the GI team

and he gets admitted (course he has always had a temp

of almost 101 or more) and they run tests in the ER

that usually show the increase in bili. We just had

one time that the nurse in the ER gave us a hard time

but we stood firm that we were NOT going to wait at

Urgent care with all those SICK people coughing on

him.

Sorry that you are having to go through this so much

it is a downer for sure.

Peg

if not, don't hesitate to nip it in the

> bud

> by going to the ER room. Better to tough out the ER

> wait than to wait at home in discomfort. I will be

> praying for you.

>

__________________________________________________

[Guest guest]

Barbara,

I second on that one. A few days can really

make a difference on how quickly you recover from each

infection. Infact waiting around could cause it to go

into sepsis that can be very bad even deadly.

Phil had an ERCP last April where they removed some

sludge and a stone. They explained that a stone could

be in the duct bouncing around and when it got stuck

he would get an infection. When he was first

diagnosed he had 4 infections in 3 months, then he

went a year, then 9 months and now it's almost a year

since the procedure they did to clean out and dialate

his main duct. The thing is that since they did this

last procedure he doesn't even have the fatigue that

he had before.

His series of 4 infections in 3 months is what got him

listed (that was in 1999 and list 2000 when the

listing process was different).

We don't fool around. If the doctor is available we

go there first but if it's late at night or the

weekend we go straight to the ER and every time he's

been admitted for IV Cipro treatment. When he gets in

right away he feels better by the next morning and

goes home in a couple of days. We are fortunate that

we are able to go in, tell them to call the GI team

and he gets admitted (course he has always had a temp

of almost 101 or more) and they run tests in the ER

that usually show the increase in bili. We just had

one time that the nurse in the ER gave us a hard time

but we stood firm that we were NOT going to wait at

Urgent care with all those SICK people coughing on

him.

Sorry that you are having to go through this so much

it is a downer for sure.

Peg

if not, don't hesitate to nip it in the

> bud

> by going to the ER room. Better to tough out the ER

> wait than to wait at home in discomfort. I will be

> praying for you.

>

__________________________________________________

[Guest guest]

Could you just call him on the phone and tell him your situation instead of going to his office? If you have had so many attacks this year alone surely he can be assured that you know the symptoms without him seeing you every time. Hope you get some help soon.

Hi Barby,

I'm on antibiotics continuously since last summer when I kept getting cholangitis. They work for a while and then the infection seems to get back in again and thats what's happened now. I'm running a slight fever and needing pethidine for pain so tomorrow morning I'll ring my family dr and get sorted. I have to confess I'm getting rather tired of all this but when I went to the hospital last week for my regular check up I, was told yet again that since my livers still working a bit I can't go on the transplant list. :~(

Thanks for your support.

Barbara (UK)

[Guest guest]

Could you just call him on the phone and tell him your situation instead of going to his office? If you have had so many attacks this year alone surely he can be assured that you know the symptoms without him seeing you every time. Hope you get some help soon.

Hi Barby,

I'm on antibiotics continuously since last summer when I kept getting cholangitis. They work for a while and then the infection seems to get back in again and thats what's happened now. I'm running a slight fever and needing pethidine for pain so tomorrow morning I'll ring my family dr and get sorted. I have to confess I'm getting rather tired of all this but when I went to the hospital last week for my regular check up I, was told yet again that since my livers still working a bit I can't go on the transplant list. :~(

Thanks for your support.

Barbara (UK)

[Guest guest]

Could you just call him on the phone and tell him your situation instead of going to his office? If you have had so many attacks this year alone surely he can be assured that you know the symptoms without him seeing you every time. Hope you get some help soon.

Hi Barby,

I'm on antibiotics continuously since last summer when I kept getting cholangitis. They work for a while and then the infection seems to get back in again and thats what's happened now. I'm running a slight fever and needing pethidine for pain so tomorrow morning I'll ring my family dr and get sorted. I have to confess I'm getting rather tired of all this but when I went to the hospital last week for my regular check up I, was told yet again that since my livers still working a bit I can't go on the transplant list. :~(

Thanks for your support.

Barbara (UK)

[Guest guest]

A few days can really

make a difference on how quickly you recover from each

infection. In fact waiting around could cause it to go

into sepsis that can be very bad even deadly.

You are right there hopefully I'll get sorted tomorrow.

God bless,

Barbara (UK)

[Guest guest]

A few days can really

make a difference on how quickly you recover from each

infection. In fact waiting around could cause it to go

into sepsis that can be very bad even deadly.

You are right there hopefully I'll get sorted tomorrow.

God bless,

Barbara (UK)

[Guest guest]

Where are you in terms of transplantation? Seems to me that have cholangitis so many times you'd be ready.

Hi ,

My dr seems very anti transplant at the moment in spite of all the infections I've had plus fluid retention and itching. At the hospital last Friday my usual dr wasn't there so I saw one of the juniors which isn't much good as they'll never make any decisions. I shall not let it rest though but in the meantime my family dr is very good and he'll give me a different antibiotic tomorrow. I'm on antibiotics continuously but that only helps for a short time before they have to be changed. These days cipro and that family have no effect at all and its getting difficult finding something that will.

Anyway enough of my grumbling I hope you have a happy Easter and you feel better yourself.

Love Barbara (UK)

[Guest guest]

Where are you in terms of transplantation? Seems to me that have cholangitis so many times you'd be ready.

Hi ,

My dr seems very anti transplant at the moment in spite of all the infections I've had plus fluid retention and itching. At the hospital last Friday my usual dr wasn't there so I saw one of the juniors which isn't much good as they'll never make any decisions. I shall not let it rest though but in the meantime my family dr is very good and he'll give me a different antibiotic tomorrow. I'm on antibiotics continuously but that only helps for a short time before they have to be changed. These days cipro and that family have no effect at all and its getting difficult finding something that will.

Anyway enough of my grumbling I hope you have a happy Easter and you feel better yourself.

Love Barbara (UK)

[Guest guest]

Barb,

That just doesn't sound like an acceptable place for a PSCer to be in! Continual infections, but few antibiotics that work? I wonder what it is going to take to get you dr. to be PRO transplant!! I'll be praying for you as well as the doctor. I don't think many would disagree with me that transplantation is looking like a good option for you!

Take care and HAPPY EASTER to you too!

Love,

Mel-

[Guest guest]

That just doesn't sound like an acceptable place for a PSCer to be in! Continual infections, but few antibiotics that work? I wonder what it is going to take to get you dr. to be PRO transplant!! I'll be praying for you as well as the doctor. I don't think many would disagree with me that transplantation is looking like a good option for you!

Hi ,

Thank you for your best wishes may you have a happy Easter too. My twin sister is staying with me for a few days and she has again said how much she would like to give me some of her liver. As she is an identical twin and fit and active I can't understand the problem. It is certainly depressing. I'm on 2 antibiotics now so hopefully I'll be feeling better soon.

Love Barbara (UK)

[Guest guest]

Don't do the usual British thing of 'grin and bear it' (like I probably would), and don't let those doctors fob you off.

Hi Helen

I certainly won't. I'm pretty fed up with it and I don't seem to get any where with the hospital. I see my GP on Friday and make sure he is up to date. By then hopefully he'll have had a letter from the hospital so we can discuss it further.

Love Barbara (UK)

[Guest guest]

Barbara,

I was so sorry to see that you are having a rough time at the

moment. I hope that today (Tuesday) you are feeling much better,

and that it didn't spoil the Easter holiday completely. What

wonderful weather we've been having here in the UK over the weekend.

Hope you've given those doctors a hard time and they're going to do

something to help you. Six cholangitis attacks in 3 months just

doesn't bear thinking about, let alone going through. Poor you.

Don't do the usual British thing of 'grin and bear it' (like I

probably would), and don't let those doctors fob you off.

Please take care.

Helen

> Hi Folks,

> I think I am getting cholangitis yet again (I have had 5 episodes

so far this

> year alone.) Just coming up to Easter too. The RUQ pain is getting

worse as

> the day progresses and I guess it'll have to be a visit to the Drs

tomorrow

> or Saturday (if they are not available tomorrow that is).

> I hope you are all doing well.

> Happy Easter,

> Barbara (UK)