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RE: son with PSC and UC

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When my brother was having his worst bouts of UC, he started taking Fish Oil and a high quality Milk Thistle. This helped him in the beginning with having more solid bowel movements. Check with your doctor before taking any suppliments though. We checked with his doctor before taking these and he said they were fine, but everyone is different.

Watch the predisone for someone of his age, my brother was on it allot in his early 20's and he would get "roid rage". He is not pleasant on steroids at all. He has a temper that is unreal when he is on them for long periods of time. Something his doctor now watch, but took us several months to figure out what was tipping the scales.

in Texas

know of any herbal medicines, etc which are helpful?ThanksNaad__________________________________________________

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Naad,

There seem

to be a lot of these new college kids on the group this year. I think you will

find a lot of helpful advice and tons of support here.

I know there

are some taking fish oil, and milk thistle etc… I am sure you will hear

from them. Another good place is the pscmom group. I think that is where

someone posted yesterday about a new college student going through some stuff.

Good luck,

Mom of Noah

(8) UC 3/05; PSC 5/05; osteopenia in 1-4 lumbar vertebrae 9/05—so keep

the calcium going!!!!!

From: [mailto: ] On Behalf Of ritatorto

Sent: Tuesday, September 27, 2005

11:47 AM

To:

Subject: son with

PSC and UC

Hi, I am new to this forum. My son who turned 18 in June

was

diagnosed with both UC and PSC about a couple of

months before his 18th

birthday. I am always checking for

information and this site has been

encouraging. He is a freshman in college now

and currently on asacol,

ursa and prednisome. He also takes Calcium and

multivites. Does anyone

know of any herbal medicines, etc which are

helpful?

Thanks

Naad

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I thought we

were the only ones witnessing “roid rage”. Noah has had that! In

an 8-year-old it consisted of rolling around on the floor kicking stuff. It is

scary.

From: [mailto: ] On Behalf Of Crumbliss

Sent: Tuesday, September 27, 2005

12:03 PM

To:

Subject: Re: son

with PSC and UC

When my brother was having his worst bouts of UC, he started taking

Fish Oil and a high quality Milk Thistle. This helped him in the

beginning with having more solid bowel movements. Check with your doctor

before taking any suppliments though. We checked with his doctor before taking

these and he said they were fine, but everyone is different.

Watch the predisone for someone of his age, my brother was on it allot

in his early 20's and he would get " roid rage " . He is not

pleasant on steroids at all. He has a temper that is unreal when he is on

them for long periods of time. Something his doctor now watch, but took

us several months to figure out what was tipping the scales.

in Texas

know of any herbal medicines,

etc which are helpful?

Thanks

Naad

__________________________________________________

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Nope you are not alone. Anytime they mention needing to go on steriods, all senses go up, I have spent one too many nights in the ER because of broken hands when on steriods and he decides to punch something (thankfully only inanimate objects like walls, tables etc.) When he isn't on the steriods he is very even tempered and about the most laid back person you know (sometimes this is even irriating)....but I will take laid back to "roid rage" any day.....

Thankfully the last 3 years have given him no UC flare ups so he hasn't had to be on steriods in a long while.....

in TX Martens wrote:

I thought we were the only ones witnessing “roid rage”. Noah has had that! In an 8-year-old it consisted of rolling around on the floor kicking stuff. It is scary.

Yahoo! for Good Click here to donate to the Hurricane Katrina relief effort.

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Naad

I seem to have been having some luck with the omega 3 fatty acids (fish

oils). They are natural anti-inflammatories.

Best

jd, 45

UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3

Southern, IL

krmpotich@...

son with PSC and UC

> Hi, I am new to this forum. My son who turned 18 in June was

> diagnosed with both UC and PSC about a couple of months before his 18th

> birthday. I am always checking for information and this site has been

> encouraging. He is a freshman in college now and currently on asacol,

> ursa and prednisome. He also takes Calcium and multivites. Does anyone

> know of any herbal medicines, etc which are helpful?

> Thanks

>

> Naad

>

>

>

>

>

>

>

>

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Rita

When your mind goes here ( it is quite depressing not sure what the future

holds), remind yourself you couldn't predict the future before the disease

either! For sure the disease can play a heck of a head game, but it is easy

to slip into thinking that doesn;t help too.

Best

jd, 45

UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3

Southern, IL

krmpotich@...

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Hi JD,

I have been away from the site for a couple of days and just read

your response. Tell me, your said your PSC is stage . How did you

know the satge of development? My son's doctors haven't told us

anything yet about stages and I am afraid to ask.

Rita

> Rita

>

> When your mind goes here ( it is quite depressing not sure what the

future

> holds), remind yourself you couldn't predict the future before the

disease

> either! For sure the disease can play a heck of a head game, but it

is easy

> to slip into thinking that doesn;t help too.

>

>

> Best

> jd, 45

> UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3

> Southern, IL

> krmpotich@m...

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Rita

Any time you have a liver biopsy, a pathologist reviews the slides.

(this is one of those docs you never meet, but charges you plenty o $$$)

They compare your specimen to standardized characteristics that are

classified into 4 stages. This report is sent to you physician from the

pathologist. It will describe the current observations of the slides (very

technical terms, but with a handbook, ultimately understandable) AND a score

between 0-4. You get this in one of two ways; Ask the Hep. or get your

medical records. I strongly recommend both!! I think asking the docs. some

very pointed and intelligent questions communicates that you will not be

satisfied with just any off the cuff answers.

Having said all that it is also very important to say that some

stage 2 folks are more debilitated that other stage 4 folks, so in terms of

FUNCTIONAL limitations (how it manifests in real life) the disease is h i

g h l y variable, and like most things one test (even though this is a

gold standard test for Dx.) does not tell all.. Hope this helps.

Best

jd, 45

UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3

Southern, IL

krmpotich@...

Re: son with PSC and UC

> Hi JD,

> I have been away from the site for a couple of days and just read

> your response. Tell me, your said your PSC is stage . How did you

> know the satge of development? My son's doctors haven't told us

> anything yet about stages and I am afraid to ask.

> Rita

>

> > Rita

> >

> > When your mind goes here ( it is quite depressing not sure what the

> future

> > holds), remind yourself you couldn't predict the future before the

> disease

> > either! For sure the disease can play a heck of a head game, but it

> is easy

> > to slip into thinking that doesn;t help too.

> >

> >

> > Best

> > jd, 45

> > UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3

> > Southern, IL

> > krmpotich@m...

>

>

>

>

>

>

>

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Dear Rita,

If you go to our web site, www.pscpartners.org you can take a look at

the past newsletters. There is an excellent article on the fish oils

by Dave in issue 6. While you are there you can also sign up for

email notification of our newsletters.

Lee

> --

> >

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