New to the group

[Guest guest]

Judy,

Welcome to the group. I am sure will find this group of people very loving

and caring individuals. I have have been in the group for over a year now and

I am still gather new information. I too had by GB out and was dx with PSC in

Jan 96. Look forward to chatting with you.

Larry UC-95 / PSC-96

[Guest guest]

In a message dated 12/28/99 6:19:51 PM Eastern Standard Time,

OneAVIDman@... writes:

<< Judy,

Welcome to the group. I am sure will find this group of people very loving

and caring individuals. I have have been in the group for over a year now

and

I am still gather new information. I too had by GB out and was dx with PSC

in

Jan 96. Look forward to chatting with you.

Larry UC-95 / PSC-96 >>

Larry:

Thanks for the warm welcome. I have been so impressed by the friendliness of

the group. You all seem like a group of really great people who are always

looking out for each other. I have learned alot already and when I finally

have my appointment with the specialist on January 14th I will be familiar

with what he is talking about. I can't deny it though, I am really hoping

that there has been some kind of mistake made and he will say I don't really

have PSC, but I guess that is normal. Maybe there would be more of us

PSC'ers if more people got their gall bladders out!

Judy

[Guest guest]

Hi Judy,

Welcome to the group! I too hope they tell you that you don't really have

PSC, but if you do, you have come to the right place for support and

information. My husband, Jim was diagnosed last year, and I have found this

group to be invaluable in helping me cope. I am sure you will too. My

husband also had his gallbladder out prior to diagnosis. Unfortunately, this

was not the solution to his problems, and eventually PSC was diagnosed. He

is however, symptom free and doing fine, with his daily dose of Actigall the

only reminder right now of the disease. We will deal with it when the time

comes, and I am grateful I will have this group to turn to for support.

Liz

[Guest guest]

In a message dated 12/28/99 7:02:03 PM Eastern Standard Time,

Rnurse987@... writes:

<< Hi Judy,

Welcome to the group! I too hope they tell you that you don't really have

PSC, but if you do, you have come to the right place for support and

information. My husband, Jim was diagnosed last year, and I have found this

group to be invaluable in helping me cope. I am sure you will too. My

husband also had his gallbladder out prior to diagnosis. Unfortunately,

this

was not the solution to his problems, and eventually PSC was diagnosed. He

is however, symptom free and doing fine, with his daily dose of Actigall the

only reminder right now of the disease. We will deal with it when the time

comes, and I am grateful I will have this group to turn to for support.

Liz

>>

Thanks Liz for writing. I had my gall bladder out as you know on Nov 22nd.

Every since then I have had to deal with bloated stomach, reflux, gas pains,

constipation. I take Gas X and Tagament. The bloated stomach seems to have

eased up, but now all of a sudden I don't have constipation. Every time I

eat, I get bent over in gas pains and in about 1/2 hour after that I get

diarreah. It seems kind of strange to me that this has popped up 5 weeks

after my surgery and was never a problem before that. Is this common to have

after gall bladder surgery? Is it a symptom of PSP? I didn't want to take

an immodium or anything to stop the diarreah because I am always so

constipated that it is actually a relief not to have to deal with it (I know

that sounds really dumb, but there is nothing worse to me than to go a day

without going). I feel worse.

Judy

[Guest guest]

Judy,

You need to get checked for Ulcerative Colitis which frequently goes along with

PSC. Phil had UC for 30 years before the PSC was diagnosed but some people get

it afterwards. If you vacilate between constipation and diarreha you might have

UBS (Irritable Bowel Syndrome) It can come and go and give you cramps that are

as

bad as labor pains. I've had it and go in and out of it periodically. I find

that staying away from fried and spicy stuff, lots of water, acidophilus and

enough bulk foods really helps. The doctor gave me levebid but I don't see that

it helps much, watching my diet and taking acidophilus seems to be the best to

control it.

Peg (wife of Phil - dx PSC 12/98).

Jnieman@... wrote:

> In a message dated 12/28/99 7:02:03 PM Eastern Standard Time,

> Rnurse987@... writes:

>

> << Hi Judy,

>

> Welcome to the group! I too hope they tell you that you don't really have

> PSC, but if you do, you have come to the right place for support and

> information. My husband, Jim was diagnosed last year, and I have found this

> group to be invaluable in helping me cope. I am sure you will too. My

> husband also had his gallbladder out prior to diagnosis. Unfortunately,

> this

> was not the solution to his problems, and eventually PSC was diagnosed. He

> is however, symptom free and doing fine, with his daily dose of Actigall the

> only reminder right now of the disease. We will deal with it when the time

> comes, and I am grateful I will have this group to turn to for support.

>

> Liz

> >>

> Thanks Liz for writing. I had my gall bladder out as you know on Nov 22nd.

> Every since then I have had to deal with bloated stomach, reflux, gas pains,

> constipation. I take Gas X and Tagament. The bloated stomach seems to have

> eased up, but now all of a sudden I don't have constipation. Every time I

> eat, I get bent over in gas pains and in about 1/2 hour after that I get

> diarreah. It seems kind of strange to me that this has popped up 5 weeks

> after my surgery and was never a problem before that. Is this common to have

> after gall bladder surgery? Is it a symptom of PSP? I didn't want to take

> an immodium or anything to stop the diarreah because I am always so

> constipated that it is actually a relief not to have to deal with it (I know

> that sounds really dumb, but there is nothing worse to me than to go a day

> without going). I feel worse.

> Judy

>

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[Guest guest]

Judy,

With my IBS I would get terrible cramps and solid stool that ended in diarreha.

When I started taking acidophilus, drinking 8 glasses of purified water,

elimiated sugar, yeast, fried & spicy foods and caffine. It was completely under

control. Now I'm drinking caffine, eathing everything wrong and because of the

1

or 2 diet cokes a day, not drinking all my water, I am a mess again. Plus I've

gained a lot of weight. After the holidays, I swear I'm getting back on track.

I don't understand why I let myself get off track other than I'm not good at

temptation and when we go square dancing there are always treats there and I

love

sweets so. I wish I had Phil's self control course with this disease it's more

important for him but the insignificant ailments can be just as dabilitating and

one of us being sick is enough. So my New Years resolution is to get back on

track and resist-resist-resist.

Peg

Jnieman@... wrote:

> In a message dated 12/28/1999 11:49:51 PM Eastern Standard Time,

> palfeld@... writes:

>

> << udy,

> You need to get checked for Ulcerative Colitis which frequently goes along

> with

> PSC. Phil had UC for 30 years before the PSC was diagnosed but some people

> get

> it afterwards. If you vacilate between constipation and diarrhea you might

> have

> UBS (Irritable Bowel Syndrome) It can come and go and give you cramps that

> are as

> bad as labor pains. I've had it and go in and out of it periodically. I

> find

> that staying away from fried and spicy stuff, lots of water, acidophilus

> and

> enough bulk foods really helps. The doctor gave me levebid but I don't see

> that

> it helps much, watching my diet and taking acidophilus seems to be the best

> to

> control it.

> Peg (wife of Phil - dx PSC 12/98).

> >>

> Peg:

> You are right I do have IBS, but rarely have diarrhea with it, it is usually

> the constipation and this incident seems really strange to me. Since I just

> had the GB out a few weeks ago I have a feeling there is some connection. I

> try to stay away from greasy and spicy foods and pretty much get stomach

> distress with everything but bland foods.

> I have since read the Gallbladder message board and see that some people have

> these symptoms for a year afterwards. Just what I need!!

> Thanks for your concern.

> Judy

>

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[Guest guest]

Hello,

My name is Simone and I am 27 years old. I´m Brazilian and I apologize for my

English, because it isn’t good. But this group have motivated I improve my

English.

I was diagnosed with Still’s Disease since last year (September) and until now

I have been treated.  I had only one outbreak  characterized by systemic

symptoms (fever around two months, rush and itch in the body,  pain in the

articulations, and alterations in the laboratory variables. I was hospitalized

for 20 days and it was terrible for me and my family. I didn’t response to

AINE therapy, but presented good response to steroid treatment.  Now, passed 11

months, I am taking prednisone (15 mg/day); methotrexate (15 mg/week); sodium

alendronate (70 mg/week); D vitamin, omeprazole, domperidone and folic acid.

Since I started the steroid treatment, I haven’t had any signs of disease and

I have had a good evolution.  Now I work normally and my life is good and I’m

happy with my response to the treatment.

I follow the treatment in the university hospital in Brazil. I really think that

exchange information about this disease is very important to patient and its

family, and can improve the life’s quality.

I confess that I have worried me about the stories reported in this group,

because some are very sad… and I know how is difficult to be sick. In other

hand, I am happy to meet people very solidary and willing to help others living

with this disease. 

Thanks for the help! I wish health to all.

Hugs