Re: PSC Itching

[Guest guest]

That is great having the same Dr. for both. How's your UC been?

>

[Guest guest]

Hi Karyn

I think I've been very fortunate that my UC responded quickly to meds

once it was actually diagnosed. It was about 6 months of hell leading

up to the diagnosis (back in 2002) and then maybe another 2-3 months

of getting back to normal once the meds kicked in.

One of my co-worker's dad has UC really bad but no PSC. Sometimes I

have to wonder which is worse: the dynamic duo of PSC & mild UC

or " simply " really serious UC that leaves you house bound at times.

[Guest guest]

Hi Karyn

I think I've been very fortunate that my UC responded quickly to meds

once it was actually diagnosed. It was about 6 months of hell leading

up to the diagnosis (back in 2002) and then maybe another 2-3 months

of getting back to normal once the meds kicked in.

One of my co-worker's dad has UC really bad but no PSC. Sometimes I

have to wonder which is worse: the dynamic duo of PSC & mild UC

or " simply " really serious UC that leaves you house bound at times.

[Guest guest]

, I'd like to choose " none of the above " lol. You are very lucky to have

had UC for such a

short time and to have it under control. I've had UC for 39 years now (since I

was 15). I really

think the only time it wasn't a huge issue for me was while I was pregnant and

for a couple

of years after having the babies. Had to have a sub-total colectomy almost two

years ago,

I'm still recovering from that.

With the PSC... once my itching started the insanity set in. I remember reading

early on that

one of the worst symptoms would be itching... I though... how bad can that be...

HA! Caught

me by surprise for sure. Finally convinced my Hep. to put me on Rifampin and

it's like a

whole different me now. Though now the rest of the bad stuff is starting to

happen and as

everyone on here knows it's an uphill battle... good days and bad

[Guest guest]

Hi Karyn

I had DVTs in my early 20s and thought at the time that was bad

enough. In some respect it forced me to look after myself somewhat

better. I usually ended up being the DD since I could drink very

little while I was on Coumadin. Eventually, though, it became an issue

when the bleeding developed from the UC. 39 years for you? Ouch Did

the sub-total colectomy at least relieve the major symptoms of UC? Was

there even a choice on the procedure?

So I do consider myself very lucky as I still recall the time when a

simple glass of water would send me to the washroom hoping I could

make it to the toilet without having an accident. Since then I've

spent a lot of time looking at what works best food-wise for me and

settled on a gluten-free diet a couple of years ago. It's a bit of a

nuisance at times but I think that between it and the meds, the two

have helped keep my UC well under control. I'd say it's a small price

to pay for feeling well in that regard. I've also not had to go the

steroid route which is a definite plus.

As far as the itching is concerned, it's been driving me nutty the

past few months so I feel your pain. I see my hep tomorrow to discuss

the results of a CT scan on my liver as well as a few other tests so I

may request something a little more potent than the antihistamines I'm

currently taking with such limited efficacy.

[Guest guest]

Hi Karyn

I had DVTs in my early 20s and thought at the time that was bad

enough. In some respect it forced me to look after myself somewhat

better. I usually ended up being the DD since I could drink very

little while I was on Coumadin. Eventually, though, it became an issue

when the bleeding developed from the UC. 39 years for you? Ouch Did

the sub-total colectomy at least relieve the major symptoms of UC? Was

there even a choice on the procedure?

So I do consider myself very lucky as I still recall the time when a

simple glass of water would send me to the washroom hoping I could

make it to the toilet without having an accident. Since then I've

spent a lot of time looking at what works best food-wise for me and

settled on a gluten-free diet a couple of years ago. It's a bit of a

nuisance at times but I think that between it and the meds, the two

have helped keep my UC well under control. I'd say it's a small price

to pay for feeling well in that regard. I've also not had to go the

steroid route which is a definite plus.

As far as the itching is concerned, it's been driving me nutty the

past few months so I feel your pain. I see my hep tomorrow to discuss

the results of a CT scan on my liver as well as a few other tests so I

may request something a little more potent than the antihistamines I'm

currently taking with such limited efficacy.

[Guest guest]

,

I absolutely love your sense of humour. I just hope the woman or women in your

life are interested in more than your large organ. I've got a good one of my

own along that line. When first talking with the surgeon about removing my

colon, my husband said to him, how important is it to have a colon, what are

it's main functions. The surgeons response was that it was considered a social

organ ie. let's you have extra time away from your toilet when out in public

etc. I said I had alway heard that the Penis was the social organ... lucky for

me he laughed and a good patient/Dr. relationship was born. And yes, I've

known where every public washroom is located in every mall, restaurant, Air

Canada Center, good off the highway stops etc for years. I have friends say...

ewww! I just can't go in a public washroom. I say how nice of you to be able

to have a choice. There have been times when a planter along a side walk made

me wish it was darker out.

Good luck with the Questran, It works for a lot of people, didn't work for me

and the timing was always an interesting part of it all. The best way I found

to take it was with really cold water and the Questran powder shaken up in a cup

with a lid. If I was out somewhere, I'd order a bottle of cold water, drink a

bit off the top, then pour in powder and shake it up. Much better than trying

to stir that stuff.

Good news about all of your test results.

My son tries to stay away from Gluten as much as he can for psoriasis reasons,

If you have any good brownie or cookie recipes or anything interesting please

send them along. trackar@...

Karyn

[Guest guest]

,

I absolutely love your sense of humour. I just hope the woman or women in your

life are interested in more than your large organ. I've got a good one of my

own along that line. When first talking with the surgeon about removing my

colon, my husband said to him, how important is it to have a colon, what are

it's main functions. The surgeons response was that it was considered a social

organ ie. let's you have extra time away from your toilet when out in public

etc. I said I had alway heard that the Penis was the social organ... lucky for

me he laughed and a good patient/Dr. relationship was born. And yes, I've

known where every public washroom is located in every mall, restaurant, Air

Canada Center, good off the highway stops etc for years. I have friends say...

ewww! I just can't go in a public washroom. I say how nice of you to be able

to have a choice. There have been times when a planter along a side walk made

me wish it was darker out.

Good luck with the Questran, It works for a lot of people, didn't work for me

and the timing was always an interesting part of it all. The best way I found

to take it was with really cold water and the Questran powder shaken up in a cup

with a lid. If I was out somewhere, I'd order a bottle of cold water, drink a

bit off the top, then pour in powder and shake it up. Much better than trying

to stir that stuff.

Good news about all of your test results.

My son tries to stay away from Gluten as much as he can for psoriasis reasons,

If you have any good brownie or cookie recipes or anything interesting please

send them along. trackar@...

Karyn

[Guest guest]

I hear you! I have the exact same extreme bouts of itching....

Sometimes to the point of going absolutely insane.. It can sure get depressing.

It's embarrassing when your arms/legs are scarred up from scratching and people ask what happened? The "cat scratched" me excuse will only go so far!

I just have to keep reminding myself that it could always be worse, although some days that sure can be difficult.

We just have to keep the faith I suppose.

Kind regards,

Alison

To: Sent: Thursday, February 26, 2009 11:42:22 AMSubject: Re: Re: PSC Itching

My PSC itching is everywhere, in eyeballs, inner ears, in nose, mouth, face, head, armpits, feet, hands, legs, arms....and every other space and/or opening....nothing is safe from the pruitis.When my hands and feet itch, scratching relieves it in the moments when I am scratching or raking some hard sharp object over the bottom of my feet....I would describe it as a very compelling obsession to continue scratching that spot until the point that pain is introduced.. .then the pain overrides the incredible urge to continue scratching. when it wakes me during the night, I run cold water in the tub and stand in their...until my feet are numb from the cold, then I pat dry and patter back to bed to fall asleep before the next cycle of itching starts. I keep some sharp implements at myy bedside for those emergency scratches.

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