Re: PSC Complications-response

[Guest guest]

,

Your reaction and feelings regarding this disease and your other

medical conditions are understandable. We have all been there and I

appreciate the multitude of doctor appointments. However, I would

say that the best way to " defeat " this disease is to take it straight

on and not hide your head in the sand. This will result in you being

better informed and more " in control. " You will receive pro-active

treatment rather than re-active treatment and you will be a

contributing partner and quarterback in the management of your care.

In my opionion there is just no other way to live with this disease.

Those that choose not to face the reality of their illness only do

themselves disservice in the long run. PSC should not define your

life but you should be active enough in your care so that you can

define how it affects your life.

This is how I have approached my diagnosis from day 1 and it has

served me well. Hopefully that is not too harsh but I think how you

manage your disease is one of the most important factors in long term

outcome.

in Seattle

UC 1991 PSC 2001

>

> You are right. People in the medical profession (and their

families) are the worst about seeking care. I think it is because

you see so much of the other side of the medicine (how busy everybody

is / how annoyed they get sometimes with the non-serious stuff). You

also realize how many tests, how much time and how much money could

be involved in checking into a problem.

>

[Guest guest]

:

No, that is not harsh at all. It is true and I know that. I did contact my

physician's office and I will probably break down and call my specialist. My

specialist told me in the beginning that I couldn't hide my head in the sand and

I didn't think I was because I was in his office doing something about it. I

take the meds and I go to my appointments. However, sometimes we do things not

realizing that is what we are doing. Thanks for the heads up.

You were told about PSC in 2001 also. How has your condition gone?

>>> kingpolo@... 01/27/06 11:06 AM >>>

Your reaction and feelings regarding this disease and your other

medical conditions are understandable. We have all been there and I

appreciate the multitude of doctor appointments. However, I would

say that the best way to " defeat " this disease is to take it straight

on and not hide your head in the sand.

>

> You are right. People in the medical profession (and their

families) are the worst about seeking care. I think it is because

you see so much of the other side of the medicine (how busy everybody

is / how annoyed they get sometimes with the non-serious stuff). You

also realize how many tests, how much time and how much money could

be involved in checking into a problem.

>

[Guest guest]

My history and progression is not as exciting as some others but

interesting nonetheless.

I was diagnosed with Stage 3 PSC/Possible Early Stage 4 and like many

others after having blood tests for life insurance, ERCP, and

Biopsy. My wife was about 5 months pregnant with our first child at

the time. During the course of the next 12 months I certainly could

relate to the feeling of numerous being overwhelemed by numerous

doctor appointments. During that time I experienced my first UC

flare in 10 years which I was able to treat without steroids, went

through numerous (6-7) ERCP's for stenting due to recurring

cholangitis/dominent strictures, was diagnosed with Type II Diabetes,

Hypothyroidism, and watched my cholesterol go from normal to way

above normal. All these are auto-immune/liver related in my mind.

After that first 12 months I enrolled in the high dose Urso study and

have continued to pursue treatment and have found good control for

the other conditions except cholesterol which I am still working on.

After the stenting was complete I had a good 12-18 month period of no

problems. 2005 brought more episodes of cholangitis on a 6-8

recurring cycle which were treated with antibiotics. An ERCP in the

summer of 2005 due to the recurring cholangitis revealed good

drainage of the ducts so more stenting was not needed. Apparently the

infections occur further up in the liver where stenting is not

possible. I have contiued to lead a normal life since diagnosis

including the birth of my second daughter in Feb. 2004. I am getting

tired of the annual colonoscopies but other than that have no

complaints.

That's my story and I am sticking to it.

in Seattle

>

> :

> No, that is not harsh at all. It is true and I know that. I did

contact my physician's office and I will probably break down and call

my specialist. My specialist told me in the beginning that I

couldn't hide my head in the sand and I didn't think I was because I

was in his office doing something about it. I take the meds and I go

to my appointments. However, sometimes we do things not realizing

that is what we are doing. Thanks for the heads up.

> You were told about PSC in 2001 also. How has your condition gone?

>