Re: wife (new member) to husband diagnosed with PSC looking for understanding

[Guest guest]

Dear ;

Welcome to the group .... as we are apt to say, sorry that your

husband's diagnosis brings you here, but glad that you found us.

Please feel free to ask any questions.

The symptoms you are describing sound like " cholangitis " :

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

" Infection or inflammation of the gallbladder (cholecystitis) or the

ducts (cholangitis) that drain bile from the gallbladder to the small

intestine. "

SIGNS & SYMPTOMS

- Cramping pain in the upper right of the abdomen. Pain may also

occur in the chest (imitating a heart attack), in the upper back or

the right shoulder. These symptoms frequently follow a meal rich in

fats.

- 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).

** If your husband develops a high fever and chills, please take him

to the emergency room immediately. The slow passage of bile can

result in a predisposition to bacterial infection of the biliary

tree. The infection ascends into the hepatic ducts, causing serious

infection!

http://www.emedicine.com/emerg/topic96.htm

The doctors can administer antibiotics to control the infection.

I am sorry to sound these alarm bells, but I think that it's

important that we (the care-givers) inform each other (especially

newcomers) about potential problems that can arise, and what signs to

look for.

Best regards,

Dave

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

[Guest guest]

&

Welcome. You'll find a lot of perspectives on this site with an unusual amount of good info and cheer. If the doc is vague everytime, I would be wondering if the Doc is qualified to be taking the lead in this disease? Most physicains either never heard of it, or if they are more informed may have heard of it, but never seen it. The best minds tend to be in the population centers of the US. Best of luck figuring this out together.

All the Bestjd, 44UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3ston City, ILkrmpotich@...

wife (new member) to husband diagnosed with PSC looking for understanding

My name is , I just joined the group today and my husband, , was diagnosed with PSC at the age of 19 (he's now 26). We were just married last July and have a beautiful son together who's now 1. I didn't know my now husband when he was diagnosed and do not know a lot about the disease. I am hoping to gain a better understanding of what my husband is going through and what we may be going through as a family later in life.

With all this happening and this being so new to my life with him, I am reaching for some kind of understanding and support so I can be there for him as much as I can. We won't know anything more until more tests next week, if we find anything out at all. We seem to get such vauge answers every time he is seen by the doctor, and it's very scary. I feel like the only time we are going to get something done or have any of our questions anwered is if he ends up in the hospital again.

- -

[Guest guest]

Welcome to the group!

I was diagnosed at 22, and since then have married, and had two

beautiful kids (2 and 6 years old). My first bout of symptoms was

similar to your husbands... abdominal pain, jaundice and nausea, and it

did indeed turn out to gallstones. I finally passed the gallstone that

was causing the problem and the jaundice resolved and I got my appetite

back. A year later I had my gallbladder out to prevent a reoccurrence.

Since then I haven't had any jaundice to speak of until this last week

(i'm 35 now, so that makes it umm... 13 years!) This week my bilirubin

jumped up and I turned yellow again. :-( Not sure yet what's causing it!

Anyhow, like mentioned it's also possible that it could be

bacterial cholangitis, which is generally treated with an antibiotic

like Cipro. I think that it's less common to have severe pain with

bacterial cholangitis (although not at all unheard of... I've not had it

so I'm not an expert), and quite common to have a fever with it.

So to me the combination of frequent pain (which I also had) leading up

to a episode of jaundice and nausea etc. but without a fever, sounds

like a gallstone to me. Or at least it fits the pattern I went through

when I was dealing with gallstones. Of course I'm not the doctor so I

don't really know! Just letting you know what my experience has been.

You did the right thing by going to the doctor. Hope they can figure

out what's going on and take care of it!

athan

[Guest guest]

I posted earlier today that this disease is like climbing a real scary highdive that you did not ask to be on. Information is key. Keep a notebook so when you go to drs you have questions written down. Write down the answers so you don't have your head spinning and forget what was told to you. PSC if you haven't had the pleasure to learn yet is an unpredictable disease. It can take 2 or 40 years to get "bad". Along the way there are exacerbations and flareups that drive you crazy. Divide your notebook into sections. One area must be insurance. Know what your insurance covers. Get it in writing!!! Many Drs feel bad when they tell you that you have PSC. They think it is a death sentence. There are new drugs all the time and everyone's course is different. Enjoy your life and try to relax. If your husband was a diabetic you would not let it be the center of your world. Our son was diagnosed at 11. He was in and out of the hospital alot mostly due to unexplained pain. The last 6

months was real bad with variceal bleeding and life support. 3/23/05 I donated 72% of my liver to him at Lahey Clinic in Mass and I can't slow him down now. Tonight he is out with his friends and is trying out for a play. He will go back to college this fall and rejoin a temporarily interrupted life.

Marti

Marti

Connors wrote:

My name is , I just joined the group today and my husband, , was diagnosed with PSC at the age of 19 (he's now 26). We were just married last July and have a beautiful son together who's now 1. I didn't know my now husband when he was diagnosed and do not know a lot about the disease. I am hoping to gain a better understanding of what my husband is going through and what we may be going through as a family later in life.

I have been with for 3 1/2 years, and since then he has had no problems, until recently.

's doctors thought everything looked great at his last check up about 6 months ago, although last week he became ill. It started with him feeling a pain in his upper abdomen (which happens quite often) and then he vomited through the night. The next day the whites of his eyes looked yellow (he had jaudice once before when he had his original surgery at age 19). We of course went to the doctor to have blood work done. Two of his test were high (My husband doen't remember which ones) and the doctor wants him to go next week to drink some kind of dye and see if he was passing gal stones. He thinks this may be causing the yellowing of his skin and eyes.

With all this happening and this being so new to my life with him, I am reaching for some kind of understanding and support so I can be there for him as much as I can. We won't know anything more until more tests next week, if we find anything out at all. We seem to get such vauge answers every time he is seen by the doctor, and it's very scary. I feel like the only time we are going to get something done or have any of our questions anwered is if he ends up in the hospital again.

Thanks for listening and I like I said before, this is all so new to me, so forgive me if I don't know the correct terminology for things I may post. Hopefully through this group I will learn more each day!

- -

__________________________________________________

[Guest guest]

Hi . My husband was diagnosed with PSC 4 years ago. We

noticed that he was yellow and we went to the doctor. His bilirubin

was 5 (normal for an adult is less than 1). The doctor sent us to a

specialist and they diagnosed the PSC. At the time of diagnosis,

they told us that the damage to his bile ducts was beyond doing any

type of treatment. After 2 years, they said that he would need a

liver transplant. He was on the waiting list for 2 1/2 years (he was

pretty healthy during that time, he would have recurring bouts of

cholangitis and would be hospitalized and put on antibiotics, it

would clear up and we would go home). The doctor finally ended up

putting him on antibiotics daily, that lasted for quite a while.

Then last September, he had a flare-up. They put him in the hospital

and found that a gall stone had blocked the duct to the gall

bladder. His gall bladder was ballooning. Because of the damage to

his liver, they would not remove the gall bladder. They inserted a

drain in his gall bladder and told him that he would have to wear it

until transplant. We came home from the hospital on Friday. His MELD

score had jumped from 18 to 26. The doctor told him that he was in

the prime scoring range for transplant. On Sunday night the hospital

called and told us that they had a liver for him. He received his

new liver on Sept. 20, 2005 and has done wonderful! The only slight

problem he had was a small infection in the skin layer of the

incision 5 days after surgery. We had to pack that for 2 weeks.

I have several pieces of advice for you:

First: read all that you can about the disease process. There is a

tremendous amount of information on the internet. Also, if there is

a support group at the hospital near you, the people there can lend

a great deal of support.

Second: Do not always take what the doctors in the emergency room

tell you as gospel. The GI doctors are not always up on what is

appropriate for patients awaiting transplant. I have had to ask for

the doctor to call liver transplant on numerous occasions.

Third: Have a bag packed. Cholangitis can hit suddenly. My husband

has been fine at supper and have a 101 temp by 10:00 p.m.

Hope this helps.

>

[Guest guest]

> Dear ;

>

> Welcome to the group .... as we are apt to say, sorry that your

> husband's diagnosis brings you here, but glad that you found us.

> Please feel free to ask any questions.

>

> The symptoms you are describing sound like " cholangitis " :

>

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

>

> " Infection or inflammation of the gallbladder (cholecystitis) or

the

> ducts (cholangitis) that drain bile from the gallbladder to the

small

> intestine. "

>

> SIGNS & SYMPTOMS

>

> - Cramping pain in the upper right of the abdomen. Pain may also

> occur in the chest (imitating a heart attack), in the upper back

or

> the right shoulder. These symptoms frequently follow a meal rich

in

> fats.

>

> - 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).

>

> ** If your husband develops a high fever and chills, please take

him

> to the emergency room immediately. The slow passage of bile can

> result in a predisposition to bacterial infection of the biliary

> tree. The infection ascends into the hepatic ducts, causing

serious

> infection!

>

> http://www.emedicine.com/emerg/topic96.htm

>

> The doctors can administer antibiotics to control the infection.

>

> I am sorry to sound these alarm bells, but I think that it's

> important that we (the care-givers) inform each other (especially

> newcomers) about potential problems that can arise, and what signs

to

> look for.

>

> Best regards,

>

> Dave

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

[Guest guest]

Dave, you are right in sounding these alarms. Our Hepatologist would

make us come to the emergency room if my husband's temperature got to

101, regardless of the reason. He said that they wanted to check him

out if he was running a temp.

[Guest guest]

I first of all want to thank all of the response that I've got from

my first posting. Just even knowing there's support out there for

PSC is a breath of fresh air for both my husband and I. When my

husband read the symtoms of cholongitis, he could definatly relate.

I apologize for not stating that my husband does have is gallblatter

out. He got it taken out when he was 19 (that's when he was

diagnosed with PSC) and had a bypass done.

Our doctor did say he could still pass gall stones with his gall

blatter out, and that's what they think is happening right now. We

will find out more when he goes back to the doctor this week. He is

fuctioning OK without a fever, yet he is very tired and is still a

tinge of yellow (especially in the whites of his eyes).

I again want to thank everyone for all the support. What a great

group to a part of.

All the best to everyone,

(wife of , PSC 1999)

[Guest guest]

Hi ,

My name is Evonne and I'm 39 married and have two kids 8 and 9, I

was told I have PSC last Jan and Chron's & UC back in July last

year. When I was 26 back in 1995, I got my gall bladder taken out

and the surgeon said my liver looked very pale and large. I was told

I had a Bile Duct Abnormality. The weird thing is I was sent home

with out any thing done. I just had my son and I didn't want to see

another dr. since they missed dx my for 6 month and I was just happy

I was feeling better. My doctor now said I had PSC then. I get the

same symptoms your husband gets. The itching is what drove my crazy

but the doctor gave me new meds that finally work! It sounds like

your husband and I have a lot in common health wise so if you need

to ask any questions I can try to get some answers for you. My dr.

was a speaker at the last conference. Dr Everson,Dr Trotter. Well, I

just wanted to let you know this is a very helpful group although

I'm very new to it too. I'll keep your husband in my prayers.

Evonne Bible

> Connors <kristenmconnors@y...> wrote:

> My name is , I just joined the group today and my husband,

, was diagnosed with PSC at the age of 19 (he's now 26). We

were just married last July and have a beautiful son together who's

now 1. I didn't know my now husband when he was diagnosed and do not

know a lot about the disease. I am hoping to gain a better

understanding of what my husband is going through and what we may be

going through as a family later in life.

>

> I have been with for 3 1/2 years, and since then he has had

no problems, until recently.

> 's doctors thought everything looked great at his last check

up about 6 months ago, although last week he became ill. It started

with him feeling a pain in his upper abdomen (which happens quite

often) and then he vomited through the night. The next day the

whites of his eyes looked yellow (he had jaudice once before when he

had his original surgery at age 19). We of course went to the doctor

to have blood work done. Two of his test were high (My husband

doen't remember which ones) and the doctor wants him to go next week

to drink some kind of dye and see if he was passing gal stones. He

thinks this may be causing the yellowing of his skin and eyes.

>

> With all this happening and this being so new to my life with him,

I am reaching for some kind of understanding and support so I can be

there for him as much as I can. We won't know anything more until

more tests next week, if we find anything out at all. We seem to get

such vauge answers every time he is seen by the doctor, and it's

very scary. I feel like the only time we are going to get something

done or have any of our questions anwered is if he ends up in the

hospital again.

>

> Thanks for listening and I like I said before, this is all so new

to me, so forgive me if I don't know the correct terminology for

things I may post. Hopefully through this group I will learn more

each day!

>

> - -

>

> __________________________________________________

>