Introductions

[Guest guest]

Hello, my name is and I am new to this group. My daughter (15 yrs old) has been diagnosed with UC and PSC within the last 6 months. I must admit I have gone through many different emotions, bouncing back in forth from being overwhelmed to sad to confused etc. We were so excited recently when the doctor scheduled our next appointment for two months in the future. Unfortunately we did not make it past two weeks until she started having rectal bleeding again (from the UC). I have always been able to figure things out, and have thought of myself as a fairly intelligent person, however this all feels like a guessing game to me. Any words of wisdom to keep from drowning?

LINDA

[Guest guest]

Hi!

Hang in there. Things will change from day to day and moment to moment.

Just have faith that there is a great healer watching over us. The Docs

will do their best. It can seem overwhelming. Cheer up you will find

some solutions.

Mr. Itch (Rob)

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[Guest guest]

I feel for you as we are pretty much in the same place. I am

concentrating on getting my son to eat right now and I am trying to

stay calm. Today was a hard day because I looked at him and I could see

his illness in his face. He is so thin and pale. I am hoping that the

asacol and urso help him. Please stay in touch with this group as I

know just reading their post everyday makes me feel better.

Lee

> Hello, my name is and I am new to this group. My daughter (15

> yrs old) has been diagnosed with UC and PSC within the last 6 months.

> I must admit I have gone through many different emotions, bouncing

> back in forth from being overwhelmed to sad to confused etc. We were

> so excited recently when the doctor scheduled our next appointment for

> two months in the future. Unfortunately we did not make it past two

> weeks until she started having rectal bleeding again (from the UC). I

> have always been able to figure things out, and have thought of myself

> as a fairly intelligent person, however this all feels like a guessing

> game to me. Any words of wisdom to keep from drowning?

>

> LINDA

>

>

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[Guest guest]

Hello ;

Welcome to the group. It is very sad to hear of another teen affected

by this disease, and to know that another parent is going through

this difficult time. If it is any consolation, my wife Judy and I

also experienced the same emotions when our son was diagnosed.

Everyone has their own coping mechanisms ... I have found it

particularly helpful to read as much as I can. There's a huge amount

of research being done on inflammatory bowel diseases and autoimmune

diseases, and it is quite a challenge to keep up with it all. I wake

up every morning and think ... " today I will find another few pieces

of the PSC puzzle ... some of these pieces may come in handy in the

future " . Try to keep your spirits up, and think positive, and be

thankful for every day of wellness.

I do hope that your daughter's UC can soon be brought under control.

Is your daughter on medications, such as asacol and/or ursodiol? Our

son has responded very well to these medications, and his recent

colonscopy (1 year after initial diagnosis) has shown that his UC is

now pretty quiescent. We are thinking about giving him " probiotics "

based on what we have heard from other members of the support group,

and from what we have read in the literature.

Best regards,

Dave

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

PRIMARY SCLEROSING CHOLANGITIS LITERATURE

http://home.insightbb.com/~rhodesdavid/