Re: A New Reluctant Member

[Guest guest]

,

We can all understand your not wanting to be in this group but rest assured it is a great group of people. They will be willing to help any way they can. It looks like your doctor is on top of things as far as the Urso dosage. I'm taking 1500mg which for me at 120 lbs is considered the upper range. It isn't a cure but sure helps keep the bile moving and in my case helped drop the liver function tests back into a normal range for the first time in 4 years.

Many in this group are taking milk thistle and will jump in with help. Sometimes on the weekend it is a little slow so please be patient. I don't know about the aloe juice but I'm sure one of this group has information on it.

Feel free to share a little more about yourself if you want- where you live, what doc you are seeing, if you are married, etc.

Blessings,

Barby

UC - age 11, ileostomy - age 17 (1972), continent ostomy - 1994

PSC - 1995

married 23 years, 5 sons ages 11-22

KS - tornado (1983) and house fire (2002) survivor

[Guest guest]

Hi Barby,

I am 39 and live in Los Angeles and am single, although I do have a girlfriend.

(she's

been great about all this.) I was first diagnosed with Crohn's at 30, but my

symptoms

were mild until I had a major flare up at 35. At the time my liver tests were

also out

of wack, but as I was on Predisone for the Crohn's and the liver test normaled

out, it

was thought to be autoimmune hepetits. Then this spring I kept getting high

fevers

(about 102-103) with the chills and nausea. At first I thought it was another

Crohn's

flare up, but the liver results were again high. The doctor then thought maybe

i had

gallstones, but the ultrasound showed nothing. Then PSC was suspected. The

fever

and nausea and adominal pain forced me into the hospital. I finally got an ERCP

and

my ducts were inflammed, but fortunately no scarring as of yet. I also had a

liver

biopsy, but again I am fortunate in that there is no damage as of now.

Currently, my

liver tests are normal and I feel great other than slight nausea and continual

fatique.

My doctor, Carey Strom of Cedars in Los Angeles, has me coming in once a month.

At this point, he doesn't seem too worried. I asked about the possibility of a

transplant and he scoffed at the idea, saying that was way, way down the road.

All in

all, I feel pretty fortunate. Thanks for the encouragement. It really helps.

> ,

> We can all understand your not wanting to be in this group but rest

> assured it is a great group of people. They will be willing to help any way

they

> can. It looks like your doctor is on top of things as far as the Urso

dosage.

> I'm taking 1500mg which for me at 120 lbs is considered the upper range.

> It isn't a cure but sure helps keep the bile moving and in my case helped drop

> the liver function tests back into a normal range for the first time in 4

> years.

> Many in this group are taking milk thistle and will jump in with help.

> Sometimes on the weekend it is a little slow so please be patient. I don't

> know about the aloe juice but I'm sure one of this group has information on

it.

> Feel free to share a little more about yourself if you want- where you

> live, what doc you are seeing, if you are married, etc.

> Blessings,

> Barby

>

> UC - age 11, ileostomy - age 17 (1972), continent ostomy - 1994

> PSC - 1995

> married 23 years, 5 sons ages 11-22

> KS - tornado (1983) and house fire (2002) survivor

[Guest guest]

,

Reluctance is something we all understand, but you came to the right?wrong

place. Not glad to have you here ,but this is the right place for support and

facts on PSC. I had it for 25+ yrs before tx so maybe by the time you get there

research will have made us obsolete. Tim L

--

Tim Long UC / PSC 25+ yrs TX 8/2/02

married 36 yrs, 2 daughters & 2 grandkids

> Hi Everyone,

>

> I just found out this summer I have PSC. Fortunately, other than cholangitis

> that

> hospitalized me in June, I'm fairly symptom free. I really appreciate

> everyone's

> openess and honesty. It's a huge help. The doctor has me on 1800mg of URSO,

> 3600 of Asicol and 50mg of 6mp. Some friends suggest milk thistle and/or aloa

> juice. Does anyone have any comment of this? I'm 39 and also have Crohn's.

>

>

>

>

>

>

>

>

[Guest guest]

,

No one really wants to meet the requirements of being a member of our group, but we all quite like actually belonging to this group. Yes, I know that is an an oxymoron (contradiction of terms). What I mean is that this is a great bunch of people. I'm always sorry to hear that someone else has found the need to be here, but glad that they have found their way to us.

We have people in all stages of the disease with all different manifestations. We have people who post several times daily and those who rarely if ever post but read every post sent. We can usually answer most questions. You will quickly find out that we have some very knowledgeable people here; we even have our very own doctor, Aubrey.

Cheryl Berg, Idaho 44 Married 25 years, 4 children, 2 grchildrenPSC 01, UC 00, Fibromyalgia, hypothyroid,hiatal hernia, ulcer, disability (retired English teacher)

A New Reluctant Member

Hi Everyone,I just found out this summer I have PSC. Fortunately, other than cholangitis that hospitalized me in June, I'm fairly symptom free. I really appreciate everyone's openess and honesty. It's a huge help. The doctor has me on 1800mg of URSO, 3600 of Asicol and 50mg of 6mp. Some friends suggest milk thistle and/or aloa juice. Does anyone have any comment of this? I'm 39 and also have Crohn's.