Re: Saying Hi

[Guest guest]

Hi there, it looks as though we may have similar experiences. I am 28

and was diagnosed with UC in 2000 and PSC in 2002. I have had to

successful pregnancys which I believe may have slowed my PSC and UC

progression. I live in upstate NY and see a DR at Mass General for my

PSC. I to have just begun to itch within the last six months but I

have always had dry skin/excema problems so it's hard to tell if the

itching has to do just with the PSC. I am looking forward to attending

the conference next year in FL. I hear ya as far as the pills fo,

between the Asacol for UC, Actigall for PSC, Rifampin for itching,

Synthroid for thyroid problems and a few happy pills a day, I could

take up to 30 pills in one day. I to think when I was young I had to

cut the Tylenol in half to take it.

Where are you from?

Betsy

UC 01 PSC 02

>

> Many of you probably know my Mom Reggie. Well I have finally joined

> the group after going to the PSC Conference which was excellent by

> the way. For those of you who don't know me, this is my PSC story.

> I am 29 and was diagnosed with PSC and UC in 1997 so this is my 10

>

[Guest guest]

Hi Jecy,

It was great to meet you, after years of hearing about you from your

parents. (Don't worry...it was all very good information!) I'm so glad that

you had a great experience at the conference, and that you'll rejoin us

again in ville next year. Thanks for your positive message!

Ricky

PSC 2003

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>Reply-To:

>To:

>Subject: Saying Hi

>Date: Tue, 17 Apr 2007 23:39:26 -0000

>

>Many of you probably know my Mom Reggie. Well I have finally joined

>the group after going to the PSC Conference which was excellent by

>the way. For those of you who don't know me, this is my PSC story.

> I am 29 and was diagnosed with PSC and UC in 1997 so this is my 10

>year anniversary. Originally I was only diagnosed with UC but that

>was because I was very anemic. It was my freshman year of college

>and I am the stubborn sort who always thought that everything was

>fine. So there I am 18 and ready for the full range of college

>experiences when I am told that I have a liver disease. Well

>needless to say that was a bit of a downer. But through talking to

>my friends and being open and honest with them and having a strong

>family I have done very well. Only within the past year have I

>started to itch, and have a little bit of fatigue. But look if you

>are young and have PSC your life isn't over. It just helps to define

>who you are. I go to bars and no one cares that I only have a soda

>or water. I've had girlfriends who are understanding of the

>intestinal problems that I face.

>I know that if you are young it is a real pain to be taking pills

>every day well no matter what age you are, but you get used to it and

>personally the sooner I got into the habit the better it was. And

>having your parents ask every night how many bowel movements you have

>had and if your stool is bloody, is embarrassing. When I was 18 I

>didn't even want to tell my parents what I had done that day let

>alone how many times I had pinched a loaf. But even if you don't

>tell them when you are doing fine, when you aren't, and we all know

>when we are not doing well, it is important to listen to your body

>and tell your parents that you need to speak with your hepatologist

>or GI doc. I found that the PSC conference helped because I could

>see other people who have PSC. And hey if you need someone to talk

>to I am here.

>For me a positive attitude and openness is what helps, but everyone

>needs to find their own way. And hey the next conference is in

>ville, Fl (I think) and the beach is close so you have to come

>to that conference.

>Jecy

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