Re: Hello from new member

[Guest guest]

Hi ,

I understand your continuing frustrations and worries about Suzanne. I hope that her doctors will be able to give you some helpful guidance at this point, even though it sounds like you have tried just about everything to get her IBD under control. Sending prayers your way.

Ricky

Hello from new member> > > > Hi all,> > I am a mother of 3 teenagers. My eldest, Amber, who will be 18 in > August was just diagnosed with PSC a couple of weeks ago. She was > diagnosed with UC in December 05.> > She has been taking Asacol for the UC which worked within about 10 > days and has been working wonderfully ever since.(4-5 months now) > She is now taking 30 mg/kg of Urso, 8 daily. > > She took the news ok, but anyone who knows teenagers knows that they > think they are invincible and she thinks she won't encounter any > serious problems till she is 50 or 60 yrs old. Having done research > and reading this forum I know that, althouhg I admire her optimism, > she will be much younger that that. Her Dr. told her that she will > be as old as her parents or older before she starts seeing any > symptoms. (we are 42 & 44), Again I admire the optimism, and as > much as I'd like to believe him, I think he's being a little > generous with the amount of years.> > Because she's feeling great right now, I think it's hard for her to > realize what she will eventually have to face. I try not to make a > big fuss about it, because these teenage years are supposed to be > fun and I want her to enjoy her life while she is still feeling > good. She is graduating from high school this spring, her grad is > coming up and I want her to make the best of these memorable times > in her life. She's a pretty responsible young lady but I still have > the urge to remind her about her meds and to make good choices when > it comes to a healthy life style. The hardest part will be not > consuming alcohol (we all remember our teenage yrs. right?), and I > sure hope she follows her Dr.'s advice. It scares me to think what > she will do to her liver if she decides "a couple of drinks won't > hurt". She plans to go to university in the fall and I hope and > pray that she stays healthy enough to get her teaching degree.> > Myself, I've cried quite a bit since we found out, but I try not to > think about it 24/7 and when I do, I try to think positive thoughts. > > It seems many of the people who post on this forum are in the US, we > are in Canada, so there are things you discuss that I really can't > relate to. Nevetheless, I'm learning things I didn't know before > and also realizing that there is so much more I have to learn.> > Sorry for the long winded post, I just wanted to let you know a > little about myself and my family.> > Kim> > > > > > > > > > > > >

[Guest guest]

Hi Kim,

Reading your post was like reading something from me. My son who

turns 19 this coming June and just completing his freshman year in

college was diagnosed last year with PSC and UC just before his 18th

birthday. I tend to be a worrier and always on about his medicines,

etc. He laughs and dances around me. He is feeling alright now but I

also worry about later. He currently commutes to college from home(we

leave in the same town as his college) but says he is moving for his

sophomore year. I feel he isn't taken me serious but I think it is

good that they have a positive attitude. Can you imagine if we all

had to worry? Easier said than done, anyway. I still worry and he

still makes fun of me and it all. What can I do?

Rita

[Guest guest]

Hi Rita,

My daughter never even talks about it and I wonder if that's good or

bad. On one hand, I want to talk to her to get to know what she

thinks about it all and on the other hand I figure why bring it up

and have her think about it all the time. As you said there is no

point in all of us worrying about it. I'm sure I'm doing enough

worrying for the whole family and as long as she's feeling fine, why

not just let her live worry free.

She is going to school, working part time, playing soccer and

planning her up coming grad so I figure she's got enough on her

plate. I have to admit though, because she doesn't talk about it I

wonder how seriously she takes it and if she will abstain from

drinking on the night of her grad. Did your son have any problems

with that at all? I really think, at her age, this is her biggest

concern. (not being able to party with her friends as she once did)

Glad to hear your son is feeling good and let's pray he feels good

for a very long time!

Kim

[Guest guest]

Kim Hi,

My son graduated from high school before his 18th birthday and since

he is still under 21 (he will turn 19 this June) he knows he is

legally not supposed to drink alcohol. Fortunately he is the sensible

one of my two older sons since his older brother would still try and

drink something even before he was 21 claiming everyone does it. At

Christmas and any special occasion which are less than five in the

house, when we open a bottle of wine, he asks to have a bit but since

that is far in between, I don't worry much about that. He is

travelling to the UK next week for month and will visit some former

school mates of his who are in colleges in the UK. There the legal

age for drinking is 18. Before he leaves he will be talked to and

since he has in the past been very good at not letting anyone

influence his decisions, I hope to count on that. Kids are very

different. With all this happening, I know that if it had been my

eldest child with this condition, I would be having heart attacks by

now because he would ignore every sensible suggestion, not take his

medication, etc.

I understand what you mean by wondering if they understand the

condition well enogh to take care of themselves if they won't talk

about it, etc. We have been informed that my son's PSC is an overlap

with autoimmune hepatitis. When I talk sometimes, he goes " I have

autoimmune hepatitis, not PSC " when he knows very well that is not

what the doctor said. Sometimes he tell me he is not dying, is he, so

what is my worry. I guess at this stage, all we can pray for it that

even if they seem not to take it serious, they would take their

medicines and try and lead a healthy life style. It is hard, I can

assure you.

Where is your daughter planning on attending high school? Is it in

the same town where you live or she will be away from home?

Rita

>

> Hi Rita,

>

> My daughter never even talks about it and I wonder if that's good or

> bad. On one hand, I want to talk to her to get to know what she

> thinks about it all and on the other hand I figure why bring it up

> and have her think about it all the time. As you said there is no

> point in all of us worrying about it. I'm sure I'm doing enough

> worrying for the whole family and as long as she's feeling fine, why

> not just let her live worry free.

>

> She is going to school, working part time, playing soccer and

> planning her up coming grad so I figure she's got enough on her

> plate. I have to admit though, because she doesn't talk about it I

> wonder how seriously she takes it and if she will abstain from

> drinking on the night of her grad. Did your son have any problems

> with that at all? I really think, at her age, this is her biggest

> concern. (not being able to party with her friends as she once did)

>

> Glad to hear your son is feeling good and let's pray he feels good

> for a very long time!

>

> Kim

>

[Guest guest]

Rita,

She'll be attending the University of Ottawa, which is where we

live. Thank God she wasn't planning on going away, I don't think I

could have handled it.

Although she is pretty responsible, she is one of the kids who

started drinking before the legal age, so she's already had a taste

of it.

Well there's not much I can really do but remind her of the

consequnces and hope she makes the right decisions. I can't follow

her around everywhere. What I've done to support her, is that I've

cut way back on drinking myself. Not that I was a big boozer ,

but I'm being extra careful now and especially if I'm ever

considered as a live donor, I want to make sure my liver is healty.

As for her eating habits, I still cook her 3 meals a day so I know

she's getting the proper nutrition. My husband say's I'm spoiling

her, I say " too bad " !

Have a great day!

Kim

Ottawa, Ontario, Canada

> >

> > Hi Rita,

> >

> > My daughter never even talks about it and I wonder if that's

good or

> > bad. On one hand, I want to talk to her to get to know what she

> > thinks about it all and on the other hand I figure why bring it

up

> > and have her think about it all the time. As you said there is

no

> > point in all of us worrying about it. I'm sure I'm doing enough

> > worrying for the whole family and as long as she's feeling fine,

why

> > not just let her live worry free.

> >

> > She is going to school, working part time, playing soccer and

> > planning her up coming grad so I figure she's got enough on her

> > plate. I have to admit though, because she doesn't talk about

it I

> > wonder how seriously she takes it and if she will abstain from

> > drinking on the night of her grad. Did your son have any

problems

> > with that at all? I really think, at her age, this is her

biggest

> > concern. (not being able to party with her friends as she once

did)

> >

> > Glad to hear your son is feeling good and let's pray he feels

good

> > for a very long time!

> >

> > Kim

> >

>

[Guest guest]

-Kim,

I realise I am spoiling my son also but feel that is what I need to do

to ensure he eats. He has always been a lousy eater and in high

school would go the whole day with just a bowl of cereal in his

stomach because 1) the lunch line was too long in school, 2) he had

other things to do, etc. any excuse not to eat. Sometimes I believe

his eating habits contributed to the PSc and UC because his stomach

acids were always out of wack. On numerous occasions we told him he

would get an ulcer never knowing we would have something like this.

To make sure he eats lunch while on campus, I pack him lunch

(sandwich, boost drink, some snacks) for campus anyday I know he will

be on campus for most of the day. He would not bother to buy food if I

didn't do that. I have told him that I am spoiling him and he even

comes to complain about the sandwich being soggy. Now he says he will

be moving to a rented place next year, I am trying to sort how to get

him to eat. Make sandwiches for the week for him to pick up over the

weekend or what? We hadly eat out so at home he gets to eat home

cooked food. So I have to cook for him to pick up also. Says he needs

to move out to have the college experience even if for just one year.

I think they enjoy us spoiling them and take advantage of it.

By the way we live in Florida.

Rita

[Guest guest]

Marti,

Do we overdo it by asking them daily? My son told me that one of

these days he would blow up if I ask him about his meds. I was away

for a week recently and he told me he was more punctual with the meds

when I wasn't there than when I am around. My husband asks him about

his meds once in two weeks or even longer (which upsets me sometimes).

I ask if we overdo it because if they live somewhere else, are we

going to call everyday to check? I can see myself doing that or

stressing myself because I am unable to do that often.

Rita

[Guest guest]

One of the guys at 's tx office we met says he says a pictur of a hot girl on the back of his door. He wrote the words coming out of her mouth "did you take your meds today?" I know I ask all the time cause before the tx he was very lax on taking what he was supposed to take. It drives carazy but what I told him is when I see in his actions he is responsible enough to take them without a reminder I will quit. As a child they do not automaticly get into the child afety seat and buckle up. You do it cause you love them and want to keep them safe. Eventually they do it themselves. and I are very close and I told him I love him too much for him to be stupid. We have come to far for him to die and the only way that is going to happen is if I kill him. MartiRita wrote: Marti,Do we

overdo it by asking them daily? My son told me that one ofthese days he would blow up if I ask him about his meds. I was awayfor a week recently and he told me he was more punctual with the medswhen I wasn't there than when I am around. My husband asks him abouthis meds once in two weeks or even longer (which upsets me sometimes).I ask if we overdo it because if they live somewhere else, are wegoing to call everyday to check? I can see myself doing that orstressing myself because I am unable to do that often.Rita

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

One more thought about the surgery. Would I do it again? In a heart beat. Lost a constant low grade fever too!

Bestjd, 45 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3Southern, IL

Hello from new member> > > > Hi all,> > I am a mother of 3 teenagers. My eldest, Amber, who will be 18 in > August was just diagnosed with PSC a couple of weeks ago. She was > diagnosed with UC in December 05.> > She has been taking Asacol for the UC which worked within about 10 > days and has been working wonderfully ever since.(4-5 months now) > She is now taking 30 mg/kg of Urso, 8 daily. > > She took the news ok, but anyone who knows teenagers knows that they > think they are invincible and she thinks she won't encounter any > serious problems till she is 50 or 60 yrs old. Having done research > and reading this forum I know that, althouhg I admire her optimism, > she will be much younger that that. Her Dr. told her that she will > be as old as her parents or older before she starts seeing any > symptoms. (we are 42 & 44), Again I admire the optimism, and as > much as I'd like to believe him, I think he's being a little > generous with the amount of years.> > Because she's feeling great right now, I think it's hard for her to > realize what she will eventually have to face. I try not to make a > big fuss about it, because these teenage years are supposed to be > fun and I want her to enjoy her life while she is still feeling > good. She is graduating from high school this spring, her grad is > coming up and I want her to make the best of these memorable times > in her life. She's a pretty responsible young lady but I still have > the urge to remind her about her meds and to make good choices when > it comes to a healthy life style. The hardest part will be not > consuming alcohol (we all remember our teenage yrs. right?), and I > sure hope she follows her Dr.'s advice. It scares me to think what > she will do to her liver if she decides "a couple of drinks won't > hurt". She plans to go to university in the fall and I hope and > pray that she stays healthy enough to get her teaching degree.> > Myself, I've cried quite a bit since we found out, but I try not to > think about it 24/7 and when I do, I try to think positive thoughts. > > It seems many of the people who post on this forum are in the US, we > are in Canada, so there are things you discuss that I really can't > relate to. Nevetheless, I'm learning things I didn't know before > and also realizing that there is so much more I have to learn.> > Sorry for the long winded post, I just wanted to let you know a > little about myself and my family.> > Kim> > > > > > > > > > > > >