RE: New Member

[Guest guest]

,

Welcome to the group. I am also a relatively new member of the group.

Since I have 5 sons I understand about your uncertainty as to whether your

fatigue is PSC related or family related. I also seem to forget things

but like you I always have so many people and schedules to juggle that I just

keep moving and don't let it bother me.

What kind of info did you want about the ERCP? I had one in Nov. and

another one in Dec. I don't remember much of anything about the procedure

itself - Vercid is a wonderful drug! Recovery took me 1-2 days depending on

how much medication they used.

Where are you from? Have you listed yourself on the database yet? It

was a wealth of information for me when I found this group.

Barby - KS

[Guest guest]

Barby,

Thank you for the nice welcome!!! I was just really wondering how I

would feel after the ERCP and the possible difficulties that could happen. I

have read so much in the last couple of weeks and there seems to be a great

difference in peoples beliefs about the ERCP. I was just wanting to hear from

so real people what happened to them and how others felt about it. I was not

even concerned about it, until I started reading about it, my doctor seems to

feel it is no big deal and needs to be done in order to find out exactly what

stage I am in.

I am 31 and live in Eureka, Missouri, which is about 30 miles west of

st.louis. It looks like you live in Kansas not far from myself. I am so glad

to hear that you seem to be doing just fine taking care of your family and

yourself. What stage are you in? I am worried once the PSC progresses farther

I will have a hard time talking care of my family, that is my main concern at

this point, not knowing exactly what will happen to me and when. The weather

here is beautiful, I am going to bring my boys to the park. I hope you have a

wonderful day!!!

[Guest guest]

Hello ,

I have been diagnosed for 5 years and still don't have much in the way

of symptoms. I get an ache in my left side sometimes when lying down and

I get tired easily. I also get joint pains from time to time but

otherwise I'm OK.

Steve in England.

-----------------

Re123@... wrote:

>

> Hi, all!!

> I just recently joined the group. I was just diagnosed with PSC march

> 21,2000. I was diagnosed through my blood tests and a liver biopsy. I have no

> real symptoms that I am aware of. The doctor says I probably have fatigue,

> but blame it on having four boys and my own business to take care of. My

> husband however says I always forget things, but I say that is because I have

> too many people to remember things for. I am going to have a ERCP done on the

> 4th of April. I have been reading different opinions on the ERCP, I was just

> wanting to get more information on this, before I had it done. If anyone has

> any please write and tell me your opinions. I look forward to getting to know

> you all!! Have a good Day!

>

>

>

[Guest guest]

Hi and best of thoughts are with you for you ERCP.....I am the mom of a 17 yr

old son who has PSC,Crohns, AIH and Rhuematoid Arthritis...He had an ERCP and

did fairly well after it....mainly just being rather tired and a little

sore....but went back to school within 2 days....I have been having trouble

keeping up with the mail lately ...that is why I am so behind....I hope to

hear from you after you ERCP.....Thinking of you...

Luanne Ty's mom

[Guest guest]

Luanne,

HI! Thanks for the nice letter of concern. I had my ERCP yesterday,

I had to stay the night because he put one stent in and it took him over two

hours to do the procedure, he said that was just because of the way my body

is put together. He said I was in the early stages and put me on Actigall 300

mg 3x a day. Does this sound about right? My family is so relieved since I

have four sons age 10,7,7, and 10months to take care of and of course so am

I. Do you know anything about this medication and how it makes you feel? He

also said I need to be on a low fat diet, I do not know if that means for

right now or forever. I was also wondering about alcohol, I do not drink much

maybe a few times a year at the most, but to me it seems this would not be

good because of the liver, but my doctor never said anything about it. I was

just curious and thought you might know an answer to some of these questions.

I feel you must be a very strong person, it would be so hard to have a child

have to go through all of this, but I read your posts and you seem so caring

and dedicated ty is blessed to have you as a mother, my prayers are with you!

[Guest guest]

Hi and welcome...

My son who is 17 has been treated with a couple...some did a ok job for a

short time and then had to switch to others.....He has been on cyclosporin

for almost 2 years now and it has been one of the ones that has helped

alot....He was also on ENBREL...for 2 yrs...but needed to be switched to

something that would treat his Crohns and RA.....so he has been getting

monthly Remicade infusions...He takes URSO for the PSC and AIH....he takes

other meds also....

I hope they find the source of Jims pain and will be able to help him....It

is very frustrating to be in pain and they (the docs) just shake their heads

not knowing what is going on.....Nice that the morphine is helping but we

always want the answers...WHAT IS CAUSING THIS....After years of dealing with

this I think the doctors are as frustrated as we are at times....Keep in

touch and let us know how you and Jim are doing.....

Luanne Ty's mom

[Guest guest]

,

Glad you got thru your ERCP....Ty takes 250mg 3X a day....so it seems to be

in line with what he is taking....

Diet...Ty has to watch a lot of things because of his Crohns....but we

haven't been told to NOT eat anything ever for the PSC....As far as

drinking....It so far has not been a subject...I think he is pretty aware

that the list of meds and alcohol would not be to his benifit....so far it

has not been an issue...

Hope you are feeling well....

Talk to you again soon....

Luanne Ty's mom

[Guest guest]

,

Wow......those are pretty high readings.

What drugs do they have him taking?

I have heard of a few instances where they start a patient on the immune

supression just to get them used to it, prior to transplant surgery. Could

be that's what they are trying.

I haven't head of these drugs being used to treat liver disease (except

maybe prednisone which seems to treat just about everything).

Good luck,

Roy T.

New Member

> Hello everyone,

> My name is . My husband's name is Jim and we just found out

> about this great support group. Jim recieved a collectomy in 1991

> for ulcertive colitis and was diagnosed with PSC about 1 year ago.

> Jim is in the hospital so I will be posting messages for him and

> bringing him the info. He has been listed with

> California Pacific Medical Center for a couple of months and on

> Monday we are taking Jim to the Oregon Health Sciences University to

> be evaluated and hopefully listed there also.

>

> About a week ago Jim had a T-tube placed in a bile duct to drain some

> off but since that was put in place Jim has had pain so bad that he

> is in the hospital on a morphine drip. Hopefully this next week we

> will get some answers to why so much pain. His gasto Dr. can't find

> a cause for all of the pain. All of Jim's ducts are totally blocked

> so we are getting to a desperate stage where his billirubin is about

> 21 and alk phos is around 1200.

>

> I was wondering if any of you have been treated with

> imunosuppressants before transplant? They have had Jim on all of

> them to try and I guess slow the disease process down but none of

> them worked. Thank you,

> Kingsbury

>

>

>

> ------------------------------------------------------------------------

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>

>

>

[Guest guest]

Hello ,

My name is Jeff German and my wife Tina has UC and PSC. Her UC got so

bad that they put her on Imuran (this is an imunosuppressant) but it was to

help out with that not the PSC. Keep us posted and welcome to the group.

New Member

>Hello everyone,

>My name is . My husband's name is Jim and we just found out

>about this great support group. Jim recieved a collectomy in 1991

>for ulcertive colitis and was diagnosed with PSC about 1 year ago.

>Jim is in the hospital so I will be posting messages for him and

>bringing him the info. He has been listed with

>California Pacific Medical Center for a couple of months and on

>Monday we are taking Jim to the Oregon Health Sciences University to

>be evaluated and hopefully listed there also.

>

>About a week ago Jim had a T-tube placed in a bile duct to drain some

>off but since that was put in place Jim has had pain so bad that he

>is in the hospital on a morphine drip. Hopefully this next week we

>will get some answers to why so much pain. His gasto Dr. can't find

>a cause for all of the pain. All of Jim's ducts are totally blocked

>so we are getting to a desperate stage where his billirubin is about

>21 and alk phos is around 1200.

>

>I was wondering if any of you have been treated with

>imunosuppressants before transplant? They have had Jim on all of

>them to try and I guess slow the disease process down but none of

>them worked. Thank you,

> Kingsbury

>

>

>

>------------------------------------------------------------------------

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>outdoor gear. FREE Shipping and a 30 Day Money-Back Guarantee at

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>http://click./1/2716/5/_/24674/_/955168382/

>------------------------------------------------------------------------

>

>

[Guest guest]

,

Those numbers do seem high. Hope they do find the cause of the

pain. I'm sure they have done follow up blood test to rule out

things like pancreatitis, leaky t-tube letting bile into the

abdominal cavity - two things I can think of the might create a

problem after such a procedure. You don't say how the pain

presented - dull constant ache - sharp stabbing pain in a

specific location - hot searing pain spread across a region -

cramping pain - etc. It could help to identify a cause.

Tim

--- Jim Kingsbury wrote:

> Hello everyone,

> My name is . My husband's name is Jim and we just found

> out

> about this great support group. Jim recieved a collectomy in

> 1991

> for ulcertive colitis and was diagnosed with PSC about 1 year

> ago.

> Jim is in the hospital so I will be posting messages for him

> and

> bringing him the info. He has been listed with

> California Pacific Medical Center for a couple of months and

> on

> Monday we are taking Jim to the Oregon Health Sciences

> University to

> be evaluated and hopefully listed there also.

>

> About a week ago Jim had a T-tube placed in a bile duct to

> drain some

> off but since that was put in place Jim has had pain so bad

> that he

> is in the hospital on a morphine drip. Hopefully this next

> week we

> will get some answers to why so much pain. His gasto Dr.

> can't find

> a cause for all of the pain. All of Jim's ducts are totally

> blocked

> so we are getting to a desperate stage where his billirubin is

> about

> 21 and alk phos is around 1200.

>

> I was wondering if any of you have been treated with

> imunosuppressants before transplant? They have had Jim on all

> of

> them to try and I guess slow the disease process down but none

> of

> them worked. Thank you,

> Kingsbury

>

>

>

__________________________________________________

[Guest guest]

,

Glad you found the list. These wonderful people have been a tremendous

help to me since I signed on in March.

I also had UC and have PSC. I just finished my pre transplant evaulation

here in Kansas and actually met a man from CA who moved here to get on the

list here as the wait was too long in CA. He was on the list for 8 days and

went home a week after surgery. Maybe you should consider it.

Blessings,

Barby

married 20 years, mom of 5 sons- KS

UC - dx in 1965 (11yo), ostomy 1972, BCIR 1994

PSC- dx in 1995

assymptomatic until 1999

[Guest guest]

I think it may be accurate that waiting times in Kansas tend to be lower

than California....at least under the current rules, which seem to be

changing.

But 8 days is very unusual, most patients will have to wait much longer.

I assume that this patient transferred his waiting time from CA to KS, which

UNOS will let you do if you change centers.

Also, most people who go out of town after transplant usually stick around

in an apartment or hotel or someplace like that for maybe a month or so,

before heading home. This allows them to get follow up treatment from the

same people who did the transplant.

Thanks, Roy T.

Re: New Member

> ,

> Glad you found the list. These wonderful people have been a tremendous

> help to me since I signed on in March.

> I also had UC and have PSC. I just finished my pre transplant

evaulation

> here in Kansas and actually met a man from CA who moved here to get on the

> list here as the wait was too long in CA. He was on the list for 8 days

and

> went home a week after surgery. Maybe you should consider it.

>

> Blessings,

> Barby

>

> married 20 years, mom of 5 sons- KS

> UC - dx in 1965 (11yo), ostomy 1972, BCIR 1994

> PSC- dx in 1995

> assymptomatic until 1999

>

> ------------------------------------------------------------------------

> Get your bargains at AndysGarage.com!

> http://click./1/2579/5/_/24674/_/955229983/

> ------------------------------------------------------------------------

>

>

>

[Guest guest]

,

I had similar readings to Jim's when I was first diagnosed in 1995. They

put me on Immunosuppresants (Pred' 20 mg/day) even though I wasn't even

considered serious enough for transplant. The drugs worked wonders and

made me feel 100% better than I had for months.

I have now switched to Azathioprine because the Prednisalone caused me

to develop Osteoporosis! I also take Urso (750 mG/day).

Steve Lawson,

England.

[Guest guest]

Peg,

This is Jim, 's husband, who is the one with the psc. I am feeling

better and out of the hospital. We currently live in Bend, OR. After living

in North. California for about 2 years when I was diagnosed with PSC. I was

told in Dec. that I would need a tx. We thought it would be wise to get

evaluated in Portland, Or. as that center is much closer to our home!

Thanks,

Jim

[Guest guest]

Hi Jim,

My name is Eileen and I live in Eugene. I hope you will find this group as

informative as I have.

I just went up to OHSU for my checkup. Do you see Dr. Flora? I told him to

suggest this group to his PSC patients.

Take care, and I hope to hear from you soon.

Re: New Member

Peg,

This is Jim, 's husband, who is the one with the psc. I am feeling

better and out of the hospital. We currently live in Bend, OR. After

living

in North. California for about 2 years when I was diagnosed with PSC. I was

told in Dec. that I would need a tx. We thought it would be wise to get

evaluated in Portland, Or. as that center is much closer to our home!

Thanks,

Jim

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[Guest guest]

Eileen,

Yes, we did see Dr. Flora and found him to be very good as well as the entire

staff at OHSU and beyond. It is a very big place up there, didn't realize it

is so big. They feel I should be a 2B on the list as the psc is progressing

rapidly. We have come back to Bend, OR and this past week I have been

extremely weak, it feels like I will have to quite work. I only worked part

time last week and came home and it was all I could do was to eat and go to

bed. Dr. Rabkin said that I had lost a lot of weight and that would not be

good for a tx. They also said that if I wasn't tx'ed within two years I

would not be able to be tx'ed. So I have decided to quite work and really

concentrate on staying as healthy as possible. We will see what the future

holds!!

Thanks for replying and good to know someone in the area,

Jim Kingsbury

[Guest guest]

Jim,

I am sorry to hear of your continuing symptoms and fatigue. Are you

currently listed and if so, would you mind informing me of the process you

went through at OHSU. I am fairly asymptomatic so far (crossing fingers),

and my last appointment went really well. I don't have to see them for

another year.

Where do you work at in Bend? I work for Willamette Industries in Goshen.

Talk with you soon.

Eileen.

(PS - don't you hate that parking garage at OHSU. It's like parking in a

cave

[Guest guest]

Since hasn't been approved as a member yet, I

took the liberty to email her directly. She replied:

Hi,

Thank you, this is all new to us. Since my husband was diagnosed

I've been searching for answers. Trying to find people in the same

shoes who can help us understand this. Let me tell you a little about

my family. My name is and my husband is Phil we have four

children and live in Florida.

So far he's had different kinds of test done and regular blood

work. We are waiting for an appointment to the transplant clinic

where they will run more test and explain to us what to expect. He

has his good days and bad ones. He didn't even know that this was

going on. Phil is very outgoing person and other than a common cold

is pretty healthy. He went to the ER with some pain which turned out

to be Kidney Stones. The doctor suggested he follow up with his

family doctor. Well, that's when it all started (elevated levels).

This was last summer, since than he's had some yellowing of the eyes

and itching. It wasn't until January of this year when they went in

and did an ERCP. We went back in Feb when we got the results. He

recently for the first time got very sick and was admitted for 3

days. This is new to him since he never experience having to stay in

a hospital. I'm learning the different signs (itching, occasional

sharp pains on the right side, his eyes and always tired).

I think I've told you enough. We are learning as we go along. We've

met a couple of people who's had liver transplant, but for Hep and

not PSC. That's why I wrote to this support group. We are trying to

learn as we go along. The story of Walter Payton the football player

scared me. I look forward to hearing from others and sharing our

stories.

Thank you,

> Hi,

> My name is Peg and my husband Phil was diagnosed 12/98 and put on

the list

> at UCLA 1/2000. There are a lot of people in this group to talk to

about

> technical and emotional things - even about other things than PSC.

Please

> give us your name, your husbands and where you live to begin with

and chat away.

> Peg, Wife of Phil (57), UC 30 yrs, dx PSC 12/98, listed UCLA

1/2000, status

> 3 , live in So. Calif

>

> (no subject)

>

>

> > Hi,

> > I'm just looking for someone to talk to about this condition. My

husband was

> > diagnosed back in Feb of this year. We are still waiting for him

to go on the

> > list for his liver transplant.

> >

> > Hope to hear from someone.

> >

> > Thank you

[Guest guest]

Crystal wrote:

> Hi my name is Crystal I am 26 years old and right off the bat I have

> to tell you when I get going I use no punctuation so if you get

> confused by my post then I must apologize in advance...........

Hi Crystal,

Welcome to the group.

To be considerate of our many members who have severe vision problems, please

take the time to use appropriate punctuation.

Posts that are just one long string of words are difficult for normal vision

people to follow. They are next to impossible for low vision people to wade

through.

BTW - Thank you for breaking your post into paragraphs. Posts without

paragraphs are another thing that makes it very difficult for people to read.

--

Lyndi

Moderator

[Guest guest]

This is only my opinion, but...a person can be in tremendous pain and it will

affect your attitude or a person can be in tremendous pain and it will not

affect your attitude. The difference? What you choose to do. There are days

that the pain will get the best of you and no matter what you are grouchy, but

if you make a choice and there are days when you have to actually make the

choice. You do not have to let the pain rule your attitude. This is not an easy

thing, it is not a thing that will happen over night, nor a thing that you can

demand him to do.

It is a heart matter. He must desire to be different. He has to not want the

pain to rule his life. Pain can be a terrible task master. It will totally

rule and take over your entire life until you have no life left if you allow it

to. So in my opinion the person in pain, and I have 12 years to back me up,

must either decide to go on the best they can full well knowing there are going

to be good days and not so good days.

Smile and take the best meds they can to function the best they can and then

know on the bad days to keep their mouth shut and know that tomorrow it will

hopefully be better, if not maybe the next day. Even if it is not better it

truly does not help to make everyone around them miserable just because they are

so they just as well smile and keep on keeping on. Just my two cents worth.

Gwen

<Will he go back to normal ,once he becomes accustomed to the

pain . Please some one give me some answers...>

Crystal

[Guest guest]

Hi Crystal,

and Gwen both have 'said it well'. I can add a man's

perspective to this that hopefully may help you.

At first, when my body 'balked' and I had no idea of what I was

facing, I was able to continue doing things as usual-only with more

pain and less dexterity than usual. I'd get mad at myself,

sometimes get into a real snit- these episodes sometimes scared my

wife, sometimes had her walking on eggshells- you know the drill.

She often asked 'how can I help', 'where does it hurt', 'what did

you do this time'. To me it sounded like nagging. To her it was

just caring concern.

Over time I got the diagnosis: DDD, Spinal stenosis,

spondy 'things'. I didn't understand any of it. I thought one of

those little pills would fix it. I went on to ESI, RF ablations,

prolotherapy... nothing was working. I kept getting worse. Inside

I was falling apart. What good was I if I could no longer work?

How could I tell my wife 'I love you' when just putting my arm around

her caused gut-wrenching pain? My life was drastically different.

I finally got disability- that was devastating! It was the thing

that drove home the fact that I was no longer going to do the things

I once could. Much of the fun and pleasure of life was no longer

available to me. I wasn't handling the situation well. I still

often don't.

Trust me- males don't handle 'weakness' well. Not in themselves or

in others. We accept it and expect it in women and children. When

we (males) are not 'up to par' we count the seconds to when we will

be better, and do all kinds of strange and interesting things to

hide the current 'weakness'. We don't talk about it- not even to

our doctor! I know, it sounds dumb, self-defeating- all that. It's

just the way we are. Granted, there are exceptions. There are men

who are very careful with their health, appearance... some are very

fastidious, these are the exception.

The man you love is still there. He is in a cage called pain- and

whatever physical malfunction that causes it. It will take a LONG

time for him to find coping strategies and some level of

acceptance. In the mean time he is beating himself inside and

trying hard- desperately hard to not show anything on the outside.

My wife and I still struggle with these things. I'm slowly, very

slowly learning to talk. She is just as slowly learning to listen.

If I had my way, I would have gone off and hidden in a cave long

ago. But, my wife is like a bull terrier, she doesn't let go or

give up. We have had many rough times, emotionally. I'm sure we

will have more. This is the toughest thing either of us has had to

deal with- ever. With the help of God we will prevail. Know you

are in my prayers. I hope some of this is helpful for you, I get

the feeling I'm rambling and not making much sense.

[Guest guest]

Everybody deals with pain differently.

But it is really hard to get your head around being in

pain all the time, so it may take a while.

Uabi

--- Crystal wrote:

> My boyfriend hurt himself when he was at work

[Guest guest]

If his pain is keeping him awake at night at the

expense of restorative sleep that could affect his

mood without him choosing it as well.

Good meds are really important, also, because pain

could steal his energy... if it is, it might not leave

him enough room to be civil. (which would seem to

indicate a real failure on the part of his doctors)

And then, he may only be grieving the loss of his

perceived worth, his strength, his ability and his

youth.

When this thing started for me, it was my sister who

insisted I get something for pain, because I was

swimming in it. Although I felt I was coping and

mostly pleasant, dealing with it gave me a short fuse

and no strength for shortcomings or chit-chat.

(I was always on edge because all my focus was on

controlling the pain.)

Uabi

--- Gwen wrote:

> This is only my opinion, but...a person can be in

> tremendous pain and it will affect your attitude or

> a person can be in tremendous pain and it will not

> affect your attitude. The difference? What you

> choose to do.

[Guest guest]

Hi Christie -

I don't know if anyone has said it specifically yet, but your

boyfriend is probably also suffering from clinical depression at

this point too, as a result of dealing with the grief of facing the

changes forced on him by chronic illness, as well as the constant

pain.

Most of us have to go through at least a period of depression when

we first become chronic pain sufferers, if not battle it on a daily

basis for the rest of our lives - even if we've never had a moment

of clinical depression in our lives before our injuries.

Often depression can manifest as anger. And, for men, as has

so eloquently told us, it's often hard to talk about feelings. Your

boyfriend should be evaluated by his doctor for depression, and if

he needs medication and counseling, encourage him to get them. That

might make a big difference in his anger and attitude, as well as

his ability to cope with his physical condition and your

relationship.

Good luck...

Cheryl in AZ

[Guest guest]

Hi Connie:

I just wanted to welcome you to the group. I don't have any answers for you

at all. I wish I could help. It is difficult to get Social Security

Disability. You always get refused generally the first time out. Without a

definite diagnosis, it's going to be rather difficult to say the least.

I wish you luck and please post again.

Hugs from southern California

Ro