Questions

[Guest guest]

PSC often causes a person to retain a LOT of fluid. The condition is called ascites and there are medications that can help deal with it. When it is really bad, the docs might decide to have it drained, especially from the abdomen. I had 5 liters drained in 1 day before my transplant. It is not a real effective procedure because the fluid will frequently return, but it can help. If this is the problem, you will feel that you are swollen, your ankles and feet will show it. Press your thumb into your ankle and see how long the dent remains. The longer it stays, the more fluid you are retaining.

Prednisone can also throw off your insulin levels, which can also affect weight. Talk to your doctors and if they don't help, keep talking, louder.

Please keep in mind that this advice might be totally wrong.

Take Care

MizKitSee what's free at AOL.com.

[Guest guest]

Hey all, some more question have come up in my head, was hoping you all

can answer them for me.

1) I have noticed that you all have been talking about side effects. I

haven't been told about any side effects pf PSC. Can you all please

explain to me.

2) I am having a real problem with my weight. Since getting out of the

hospital in October, I have gained 30pound, probably due to the

predisone, but I am having a problem with taking it off. What are some

suggestions from you all of what can be done. I do feel tired a lot,

and don't have the energy to exercise. When I do exercise, I get really

thirsty and out of breath easily. What can I do?

Also, does anyone know a good website to read that will explain PSC,

side effects and give me some information?

Thanks for anything that you all can do for me!!!

PSC and UC '97

[Guest guest]

,

You came to the right place for questions!

There are many possible side effects to PSC because of the functions of the

liver. My daughter hasn’t really experienced any of them, so I will let

others in the group talk to you about them.

Are you still on the steroids? My daughter

gained a lot of weight when she was on them, and lost her weight only after

getting off of them. The first time she was on them they gave her so much

energy that she was getting up at 5 in the morning and running, but still no

real weight loss. Subsequent times that she was on steroids she did not have

the energy boost but still had the weight gain; they were becoming ineffective

and we got to the point that we wouldn’t use them anymore.

Have you gone to this groups website? Group

members have put together an extensive list of literature on PSC and everything

that accompanies it. I suggest you start there.

http://www.pscpartners.org/

http://www.psc-literature.org/

LINDA

(Mom of Suzanne, 18; 1/04 UC; 3/04 PSC;

2/07 j-pouch)

From:

[mailto: ] On Behalf Of Whitfield

Sent: Monday, May 21, 2007 8:00 PM

To:

Subject: Questions

Hey all,

some more question have come up in my head, was hoping you all

can answer them for me.

1) I have noticed that you all have been talking about side effects. I

haven't been told about any side effects pf PSC. Can you all please

explain to me.

2) I am having a real problem with my weight. Since getting out of the

hospital in October, I have gained 30pound, probably due to the

predisone, but I am having a problem with taking it off. What are some

suggestions from you all of what can be done. I do feel tired a lot,

and don't have the energy to exercise. When I do exercise, I get really

thirsty and out of breath easily. What can I do?

Also, does anyone know a good website to read that will explain PSC,

side effects and give me some information?

Thanks for anything that you all can do for me!!!

PSC and UC '97

[Guest guest]

-----Original

Message-----

The condition is called ascites and there are

medications that can help deal with it. If this is the problem, you will feel that you are swollen, your

ankles and feet will show it.

Ken gets pitting edema (mainly feet & ankles), but his last

Ultra Sound didn’t show any ascites.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

_._,___

[Guest guest]

Whitfield wrote:

>

> 2) I am having a real problem with my weight. Since getting out of the

> hospital in October, I have gained 30pound, probably due to the

> predisone, but I am having a problem with taking it off. What are some

> suggestions from you all of what can be done.

, I'm one of the few on here with a weight problem (first year I was

on prednisone, I piled on nearly 100 lbs). I've found a wonderful

website called:

http://www.sparkpeople.com/

This has been a real godsend for me, and I've dropped 37 lbs. in the

last 6 months, plus I've gone from using a walker to walking by myself.

Now, instead of huffing and puffing after 50 feet (literally!), I can

last for 1/4 mile.

SparkPeople is free, and is jam-packed with helpful information --

hundreds of articles, exercise videos, and support teams (I'm team

leader for the IBD Team). It's a good, sound plan. They provide menus

or you can plan your own. The food tracker automatically counts your

calories, fat grams, carb grams and protein grams plus anything else you

want to track. I chart my blood pressure on there as well as my weight.

You can't go wrong with that website!

Regards,

Carolyn B. in SC

[Guest guest]

,

I am 50 years old and had PSC and UC for 14 years. My

biggest complaints have been fatigue, right quadrant

pain and occasional nausea. I was told early on to

keep fit for a potential transplant and to fight

fatigue. For me no exercise meant more fatigue. I

learned simply to take it one day at a time and try

and do some movement. I have developed osteopenia a

precursor to osteoporosis. Never had problems with

milk, I switched years ago to skim. I absolutely

avoid eating too much, for I have learned my system

doesn't tolerate heavy meals well. By attending the

conference in Denver it was very obvious how this

disease affects people in many different ways.

Best wishes

Phil

--- Whitfield wrote:

> Hey all, some more question have come up in my head,

> was hoping you all

> can answer them for me.

>

>

> 1) I have noticed that you all have been talking

> about side effects. I

> haven't been told about any side effects pf PSC.

> Can you all please

> explain to me.

>

> 2) I am having a real problem with my weight. Since

> getting out of the

> hospital in October, I have gained 30pound,

> probably due to the

> predisone, but I am having a problem with taking it

> off. What are some

> suggestions from you all of what can be done. I do

> feel tired a lot,

> and don't have the energy to exercise. When I do

> exercise, I get really

> thirsty and out of breath easily. What can I do?

>

>

> Also, does anyone know a good website to read that

> will explain PSC,

> side effects and give me some information?

>

>

> Thanks for anything that you all can do for me!!!

>

>

> PSC and UC '97

>

________________________________________________________________________________\

____Got a little couch potato?

Check out fun summer activities for kids.

http://search.yahoo.com/search?fr=oni_on_mail & p=summer+activities+for+kids & cs=bz

[Guest guest]

From:

NoneeNator@...

Sent: Tuesday, May 22, 2007 10:42

PM

To: llduq@...

Subject: Re: Questions

dear eric;

i have never had to take steroids, but i have gained about 30 lbs. i eat

very little and my stomach is big. some people have a lot of water inside

them and have to have it drained. i have had people say that they lose 10-20

lbs from having this tube put into them and having the fluids drained

out. you can usually tell you need this if your ankles are really

swollen.

pam

See

what's free at AOL.com.

[Guest guest]

I also have fatigue and my appiiate various all the time, somtimes I can eat but it is in small portion more times a day. Other times I dont feel like eating at all. I also take one day at a time. I am presently taking a water arbics class with other olde people and I can go slow or fast depending on how I feel. I only do this twice a week, but feel better because I feel I eared the fatigue. best wishesphil drake wrote: ,I am 50 years old and had PSC and UC for 14 years. Mybiggest

complaints have been fatigue, right quadrantpain and occasional nausea. I was told early on tokeep fit for a potential transplant and to fightfatigue. For me no exercise meant more fatigue. Ilearned simply to take it one day at a time and tryand do some movement. I have developed osteopenia aprecursor to osteoporosis. Never had problems withmilk, I switched years ago to skim. I absolutelyavoid eating too much, for I have learned my systemdoesn't tolerate heavy meals well. By attending theconference in Denver it was very obvious how thisdisease affects people in many different ways.Best wishesPhil--- Whitfield <ky_skeeter (AT) alltel (DOT) net> wrote:> Hey all, some more question have come up in my head,> was hoping you all > can answer them for me.> > > 1) I have noticed that you all have been talking>

about side effects. I > haven't been told about any side effects pf PSC. > Can you all please > explain to me.> > 2) I am having a real problem with my weight. Since> getting out of the > hospital in October, I have gained 30pound,> probably due to the > predisone, but I am having a problem with taking it> off. What are some > suggestions from you all of what can be done. I do> feel tired a lot, > and don't have the energy to exercise. When I do> exercise, I get really > thirsty and out of breath easily. What can I do?> > > Also, does anyone know a good website to read that> will explain PSC, > side effects and give me some information?> > > Thanks for anything that you all can do for me!!!> > > PSC and UC '97>

__________________________________________________________Got a little couch potato? Check out fun summer activities for kids.http://search.yahoo.com/search?fr=oni_on_mail & p=summer+activities+for+kids & cs=bz

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.