I'm still kicking!

[Guest guest]

Hi everyone,

My name is Colleen and I used to post regularly here back in 2000-2002 or so,

not too

long after I was Dxed with PSC in 2000. I see some familiar names, but there are

too many

new names for me to even begin to believe.

Anyway, I kinda fell off posting for a couple reasons -- out of sight, out of

mind -- I

found I felt better if I didn't dwell on my PSC. Add to that two small children

and trying to

run a small business out of my home, and the time slips by each day.

So, here I am. For the " oldtimers " who might remember me, Jens and I are living

in

Massachusetts again. Our daughter, Anneke, is now 4 1/2 and our son Fritz

(Friedrich

Henry -- born 9/25/06) is truly the apple of his mother's eye! I started

knitting a couple

years ago, then got a spinning wheel, then started dyeing yarn and spinning

fiber and

selling it online.

I've basically gone without medication since January 2003, when I got pregnant

with

Anneke, and just wrapped up nursing Fritz -- because I need to get my own health

back

in line.

I'm coming off one of the worst winters of my life. My UC and PSC were in

full-blown flare

and I spent from November to March dragging myself around -- the itching, the

fatigue,

the racing to the bathroom, the nausea. There were plenty of days that I wished

I could

have just died, rather than suffer another minute of PSC/UC.

I had my colonoscopy on 2/1 and got a Dutch uncle lecture from my GI.I think he

is not a

big fan of Marshall Kaplan, as he asked me to go see a new guy. And as much as I

love Dr.

Kaplan, I have wondered for a while what will eventually happen when he either

retires or

passes away.

So I met with the new guy -- Dan Pratt at Mass General -- very nice man, awesome

office

staff. He listened to me for an hour, which impressed me. Because my PSC is

immuno-

responsive (I went into remission during both pregnancies) he wants to get me on

6-MP

(hence why I weaned Fritz) after getting new baselines with an MRCP and liver

biopsy.

Phew! So there is soup-to-nuts what has been going on with me! I hope to be

around a

little more, as I need to keep myself healthy so I am around to be a mom to my

kids! I

have a long road ahead of me yet, and I can't afford to just give up.

Oh -- here are my latest liver panels -- I never know what to make of these --

if anyone

has any insight, I'd love to hear it:

AST -- 407

ALK -- 1306

ALT -- 412

Total Bili -- 1.9

Direct Bili -- 1.1

Those are all elevated -- and the test methodology was ADVIA Centaur.

Anyway, we skipped baths last night, so I need to toss two kids in the tub and

do a little

scrubbing!

Oh -- one other biggie -- I turned 40 in March. Whoa, that was a nonevent!

Have a great Saturday all!

Colleen

UC dx 8/1984

PSC dx 8/2000

[Guest guest]

Colleen, welcome back! I remember you.

My itching was sporatic in the beginning and got

relentless 4 years ago. I've everything short of a

narcotic patch (which the doctor says he will try when

I am ready to give up working and driving...so

basically when hell freezes over..)

I was listed 2 years ago at a MELD of 11 and now it is

9. Just had an appt with my doc yesterday, says I

look great...wishes all his liver patients looked like

me (I think I look like crap....I see yellow and I

don't feel that well, but apparently I am able to

conceal it....even to the doctor)

Cindy Baudoux-Northrup

__________________________________________________

[Guest guest]

Colleen, welcome back! I remember you.

My itching was sporatic in the beginning and got

relentless 4 years ago. I've everything short of a

narcotic patch (which the doctor says he will try when

I am ready to give up working and driving...so

basically when hell freezes over..)

I was listed 2 years ago at a MELD of 11 and now it is

9. Just had an appt with my doc yesterday, says I

look great...wishes all his liver patients looked like

me (I think I look like crap....I see yellow and I

don't feel that well, but apparently I am able to

conceal it....even to the doctor)

Cindy Baudoux-Northrup

__________________________________________________

[Guest guest]

Colleen, welcome back! I remember you.

My itching was sporatic in the beginning and got

relentless 4 years ago. I've everything short of a

narcotic patch (which the doctor says he will try when

I am ready to give up working and driving...so

basically when hell freezes over..)

I was listed 2 years ago at a MELD of 11 and now it is

9. Just had an appt with my doc yesterday, says I

look great...wishes all his liver patients looked like

me (I think I look like crap....I see yellow and I

don't feel that well, but apparently I am able to

conceal it....even to the doctor)

Cindy Baudoux-Northrup

__________________________________________________

[Guest guest]

Imuran is probably the trade name you're thinking about (Remicade is

a biological drug also used to treat IBD, but it's a completely

different beast--not an immunosuppressant). Imuran is metabolized

into 6-mp in the body; they are basically the same thing, only the 6-

mp is one step closer to already being broken down so your body can

use it.

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

> Anyway, I also have ulcerative colitis and my original GI put me on

6-MP years ago, which

> is a short name for mercaptopurine. I believe there is another name

for it -- is it

> remicade? I can't recall, because I was on it for years and my

brain can no longer dredge

> up that kind of detail!

>

[Guest guest]

Imuran is probably the trade name you're thinking about (Remicade is

a biological drug also used to treat IBD, but it's a completely

different beast--not an immunosuppressant). Imuran is metabolized

into 6-mp in the body; they are basically the same thing, only the 6-

mp is one step closer to already being broken down so your body can

use it.

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

> Anyway, I also have ulcerative colitis and my original GI put me on

6-MP years ago, which

> is a short name for mercaptopurine. I believe there is another name

for it -- is it

> remicade? I can't recall, because I was on it for years and my

brain can no longer dredge

> up that kind of detail!

>

[Guest guest]

Imuran is probably the trade name you're thinking about (Remicade is

a biological drug also used to treat IBD, but it's a completely

different beast--not an immunosuppressant). Imuran is metabolized

into 6-mp in the body; they are basically the same thing, only the 6-

mp is one step closer to already being broken down so your body can

use it.

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

> Anyway, I also have ulcerative colitis and my original GI put me on

6-MP years ago, which

> is a short name for mercaptopurine. I believe there is another name

for it -- is it

> remicade? I can't recall, because I was on it for years and my

brain can no longer dredge

> up that kind of detail!

>

[Guest guest]

Yep! That is it! Thanks Genevieve!

Colleen

>

> > Anyway, I also have ulcerative colitis and my original GI put me on

> 6-MP years ago, which

> > is a short name for mercaptopurine. I believe there is another name

> for it -- is it

> > remicade? I can't recall, because I was on it for years and my

> brain can no longer dredge

> > up that kind of detail!

> >

>

[Guest guest]

Yep! That is it! Thanks Genevieve!

Colleen

>

> > Anyway, I also have ulcerative colitis and my original GI put me on

> 6-MP years ago, which

> > is a short name for mercaptopurine. I believe there is another name

> for it -- is it

> > remicade? I can't recall, because I was on it for years and my

> brain can no longer dredge

> > up that kind of detail!

> >

>

[Guest guest]

Yep! That is it! Thanks Genevieve!

Colleen

>

> > Anyway, I also have ulcerative colitis and my original GI put me on

> 6-MP years ago, which

> > is a short name for mercaptopurine. I believe there is another name

> for it -- is it

> > remicade? I can't recall, because I was on it for years and my

> brain can no longer dredge

> > up that kind of detail!

> >

>