RE: Itching and other weird symptoms

[Guest guest]

Greg

Thanks for the input. I guess what I'm trying to get at is if the itching

itself comes and goes and if the itching location " moves around " as well.

I've always had fairly sensitive skin, but could tolerate a long-sleeved

wool sweater over a cotton short-sleeved shirt. This year, I've worn wool a

couple times and it drove me insane.

What are the common itchy sites, or are they as individual as everything

else with PSC? Does the itchiness tend to come and go, or is it persistent

once it starts? Should I trade in all my wool for cotton and Polartec? Bear

in mind I live on the Mass/NH border. This has a lot more to do with

practical issues (like staying warm this winter without scratching the top

layer of skin off) than a worsening of my condition.

Colleen

[Guest guest]

In a message dated 10/30/2000 6:05:11 PM Central Standard Time,

dbuggs@... writes:

<< colonectomy/illeostomy Nov '97...anybody know

how to abbreviate this one??? >>

You could just say ileostomy. That would make it shorter. I always called

it a total proctocolectomy with ileostomy which is longer.

What part of the country are you in?

Barby

married 21 years, mom of 5 sons- KS

UC - dx in 1965 (11yo), ostomy 1972, BCIR (continent ostomy)1994

PSC- dx in 1999

nordgren1@...

[Guest guest]

Greg wrote:

I can only explain the sensation with a feeling that it came from inside and

not

something on the skin. Did you try using lotion?

Hi Greg,

Thanks, the feeling that it is coming from inside describes how my soles

feel -- and it usually happens right around bedtime. The same for my legs --

it drives me to distraction.

As for lotion -- I faithfully slather myself after every shower and have

" cooled off " my showers as well. If I put any more lotion on, though, I'd

shoot across the room like a watermelon seed!

Besides the half marathon, have you continued running/exercising? I had

hoped to run the MC Marathon this past fall, but family health issues and

long job hours side-tracked me. I am hoping that my PSC will progress slowly

enough that I can continue to be active and outdoorsy. My boyfriend and I

spent a week this summer hiking all over Maine. It was really wonderful and

I hate to think that was our first and last trip.

Colleen

[Guest guest]

Colleen,

My itching and most others who I talked to, was all over and it did not need

to be initiated with a sweater or anything else. I would itch on the top of

my head and the bottom of my feet and everywhere in between. It would come

and go and really did not seem to be in the same place twice. I can only

explain the sensation with a feeling that it came from inside and not

something on the skin. I felt like the itch was a deeper sensation that just

" dry skin " . Thats about the best I can do to explain it. By the way, it

seemed to be worse later in the day than in beginning and was not a constant

irritation. Sometimes I did not itch at all.

Did you try using lotion? I have no idea if this helps, but it may be worth

a try to separate skin issues from possible PSC itching.

Hope this helps.

Greg

RE: Itching and other weird symptoms

> Greg

> Thanks for the input. I guess what I'm trying to get at is if the itching

> itself comes and goes and if the itching location " moves around " as well.

> I've always had fairly sensitive skin, but could tolerate a long-sleeved

> wool sweater over a cotton short-sleeved shirt. This year, I've worn wool

a

> couple times and it drove me insane.

>

> What are the common itchy sites, or are they as individual as everything

> else with PSC? Does the itchiness tend to come and go, or is it persistent

> once it starts? Should I trade in all my wool for cotton and Polartec?

Bear

> in mind I live on the Mass/NH border. This has a lot more to do with

> practical issues (like staying warm this winter without scratching the top

> layer of skin off) than a worsening of my condition.

>

> Colleen

>

>

>

>

[Guest guest]

Colleen,

My itching and most others who I talked to, was all over and it did not need

to be initiated with a sweater or anything else. I would itch on the top of

my head and the bottom of my feet and everywhere in between. It would come

and go and really did not seem to be in the same place twice. I can only

explain the sensation with a feeling that it came from inside and not

something on the skin. I felt like the itch was a deeper sensation that just

" dry skin " . Thats about the best I can do to explain it. By the way, it

seemed to be worse later in the day than in beginning and was not a constant

irritation. Sometimes I did not itch at all.

Did you try using lotion? I have no idea if this helps, but it may be worth

a try to separate skin issues from possible PSC itching.

Hope this helps.

Greg

RE: Itching and other weird symptoms

> Greg

> Thanks for the input. I guess what I'm trying to get at is if the itching

> itself comes and goes and if the itching location " moves around " as well.

> I've always had fairly sensitive skin, but could tolerate a long-sleeved

> wool sweater over a cotton short-sleeved shirt. This year, I've worn wool

a

> couple times and it drove me insane.

>

> What are the common itchy sites, or are they as individual as everything

> else with PSC? Does the itchiness tend to come and go, or is it persistent

> once it starts? Should I trade in all my wool for cotton and Polartec?

Bear

> in mind I live on the Mass/NH border. This has a lot more to do with

> practical issues (like staying warm this winter without scratching the top

> layer of skin off) than a worsening of my condition.

>

> Colleen

>

>

>

>

[Guest guest]

Colleen,

My itching and most others who I talked to, was all over and it did not need

to be initiated with a sweater or anything else. I would itch on the top of

my head and the bottom of my feet and everywhere in between. It would come

and go and really did not seem to be in the same place twice. I can only

explain the sensation with a feeling that it came from inside and not

something on the skin. I felt like the itch was a deeper sensation that just

" dry skin " . Thats about the best I can do to explain it. By the way, it

seemed to be worse later in the day than in beginning and was not a constant

irritation. Sometimes I did not itch at all.

Did you try using lotion? I have no idea if this helps, but it may be worth

a try to separate skin issues from possible PSC itching.

Hope this helps.

Greg

RE: Itching and other weird symptoms

> Greg

> Thanks for the input. I guess what I'm trying to get at is if the itching

> itself comes and goes and if the itching location " moves around " as well.

> I've always had fairly sensitive skin, but could tolerate a long-sleeved

> wool sweater over a cotton short-sleeved shirt. This year, I've worn wool

a

> couple times and it drove me insane.

>

> What are the common itchy sites, or are they as individual as everything

> else with PSC? Does the itchiness tend to come and go, or is it persistent

> once it starts? Should I trade in all my wool for cotton and Polartec?

Bear

> in mind I live on the Mass/NH border. This has a lot more to do with

> practical issues (like staying warm this winter without scratching the top

> layer of skin off) than a worsening of my condition.

>

> Colleen

>

>

>

>

[Guest guest]

Coleen:

Itching was the worst part for me. It didn't help my marriage either, my wife complained that I scratched all night long she said I'd be shoring and scratching at the same time. It also is not the least bit restful sleep when you are scratching while you body and mind try to rest. At one point I think I was only getting about two hours of real sleep the rest was simply laying there with my eyes closed scratching.

As for the Acetone, you'll want to stop any type of exposure that makes you liver work harder, from fumes you breath to cleaners that are absorbed through the skip stop it!

As a teenager I unknowlingly used Trichlorethelene to clean tractor parts with a bucket and brush with bare hands. Although never confirmed by any of my doctors, I'm convinced that led me down a path that led to my liver transplant in July or '98.

Take care of yourself. You do need to be more aware of your surroundings now that you know you have a liver problem.

Sincerely,

Dave Buggs

uc dx May '93, psc dx Aug '80 colonectomy/illeostomy Nov '97...anybody know how to abbreviate this one???

[Guest guest]

Hey Colleen,

When I ran the MC Marathon, my liver was in pretty bad shape. The right lobe

was completly gone. But I stil ran the race and did not do to bad (time

wise). We are blessed with a lot more liver than we really need. So you can

lose a lot of your liver before it takes a huge toll on your lifestyle.

Even after I was diagnosed with PSC, the dr's put a Transhepatic

Decompression Catheter (sp?) in my liver so that some of the bile could

drain into my intestines. All I had to do each day was flush the line out

with saline. But I continued to run everyday, at the urging of my dr, and I

ran five miles up Pilot Mountain (near Winston-Salem, NC) the morning of my

call for the transplant. As far as I am concerned, keeping fit as you can is

the most important part of fighting this disease. Only my opinion.

I still run about five miles each day and I could run a marathon if I wanted

to and my wife would let me. HA! She thinks that the volvulus was a result

of the half marathon I ran, but the docs don't agree with her. She has a

reason for her concern since the docs were not sure my intestines would

return after the volvulus surgery and as you know, you can't live without

some intestines (small or large, I can;t remember). I don't run the marathon

because it would upset her and thats too big a price to pay. I am happy just

being able to go out and run each day and hike in the mountains regurally.

We love the outdoors and have an RV that we use often for camping.. I have

found literally nothing that I can't do in moderation. I just have to get a

little more rest than I did before the disease and txp.

Hope this helps.

Greg

RE: Itching and other weird symptoms

> Greg wrote:

>

> I can only explain the sensation with a feeling that it came from inside

and

> not

> something on the skin. Did you try using lotion?

>

> Hi Greg,

>

> Thanks, the feeling that it is coming from inside describes how my soles

> feel -- and it usually happens right around bedtime. The same for my

legs --

> it drives me to distraction.

>

> As for lotion -- I faithfully slather myself after every shower and have

> " cooled off " my showers as well. If I put any more lotion on, though, I'd

> shoot across the room like a watermelon seed!

>

> Besides the half marathon, have you continued running/exercising? I had

> hoped to run the MC Marathon this past fall, but family health issues and

> long job hours side-tracked me. I am hoping that my PSC will progress

slowly

> enough that I can continue to be active and outdoorsy. My boyfriend and I

> spent a week this summer hiking all over Maine. It was really wonderful

and

> I hate to think that was our first and last trip.

>

> Colleen

>

>

>

>