Re: PSC Itching

[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]

,

Fun being the DD eh? I know that roll all too well. So glad your diet choices

have helped

your UC out so much. The doctors tried me on the Gluten Free diet back in the

early 70's.

Of course at the time there were no products in the stores that were Gluten

Free. It's a lot

easier now with some good choice out there to help you out. Hey even Pizza

Pizza has

gluten free dough.

I had aggresive dysplasia in my colon and the only choice I was given was a

total

colectomy with a j-pouch later or a sub-total colectomy (the last part of my

colon had

never been affected with UC - so I was given the choice to hang onto that). The

problem

with both of those is that you still don't have a colon (or much of one) so when

you have

to go, you have to go. Not much storage tank as the Dr. says. But now the risk

of Cancer

has been eliminated (though I do have to have what I have left checked for

changes). It

was quite the adjustment period, and big weight loss, but I think I have all of

that under

control now. It was weird not taking my UC drugs for the first time in 39

years.

So one down, one to go. I love this support group. It seems I learn new things

about PSC

almost every time I com on here. Keeps one from feeling alone in it all.

I hope your Dr. can help you out with your itching. Rifampin has been like a

miracle for

me. It itching is still there a little, but not nearly what it was.

Karyn

>

> 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]

,

Fun being the DD eh? I know that roll all too well. So glad your diet choices

have helped

your UC out so much. The doctors tried me on the Gluten Free diet back in the

early 70's.

Of course at the time there were no products in the stores that were Gluten

Free. It's a lot

easier now with some good choice out there to help you out. Hey even Pizza

Pizza has

gluten free dough.

I had aggresive dysplasia in my colon and the only choice I was given was a

total

colectomy with a j-pouch later or a sub-total colectomy (the last part of my

colon had

never been affected with UC - so I was given the choice to hang onto that). The

problem

with both of those is that you still don't have a colon (or much of one) so when

you have

to go, you have to go. Not much storage tank as the Dr. says. But now the risk

of Cancer

has been eliminated (though I do have to have what I have left checked for

changes). It

was quite the adjustment period, and big weight loss, but I think I have all of

that under

control now. It was weird not taking my UC drugs for the first time in 39

years.

So one down, one to go. I love this support group. It seems I learn new things

about PSC

almost every time I com on here. Keeps one from feeling alone in it all.

I hope your Dr. can help you out with your itching. Rifampin has been like a

miracle for

me. It itching is still there a little, but not nearly what it was.

Karyn

>

> 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]

Hey Karyn

Hmm ... not much of a choice really as far as your sub-total colectomy was

concerned. I guess you know where every public washroom is located.

I've actually learned to bake gluten-free to get my fix for sweets. Even with

the newer products available, I find that all too many still have that GF

taste/texture. I have a few friends with celiacs so we're forever comparing

notes. We recently tried the Pizza Pizza pizza for my one friend's birthday. And

the verdict was: the toppings were good. The crust seemed like it was on viagra

even once it'd cooled off in the box...

Well I met with my hep today. The colonoscopy results were good. In fact she

said that looking at my colon, there's little to suggest I even have UC [other

than when you investigate a little further]. All of the biopsies done were fine.

The ultrasound I had apparently showed a mass in my liver. That's what triggered

the CT scan request. It came back normal. Apparently, since there's a certain

amount of cell regeneration going on, that's what may have contributed to the

" mass " effect. The only unusual thing is that I have an atypically large liver

for my height/weight. There doesn't appear to be anything further that's unusual

about it [PSC aside]. So tongue firmly planted in cheek, I can tell people I

have a big organ--my doctor even said so...

I will be trying a trial of questran for itching to see how/if it works for me

and whether I like it. It certainly introduces quite the dosing schedule for it

and other meds throughout the day since you can't take it with any other meds.

[Guest guest]

Hey Karyn

Hmm ... not much of a choice really as far as your sub-total colectomy was

concerned. I guess you know where every public washroom is located.

I've actually learned to bake gluten-free to get my fix for sweets. Even with

the newer products available, I find that all too many still have that GF

taste/texture. I have a few friends with celiacs so we're forever comparing

notes. We recently tried the Pizza Pizza pizza for my one friend's birthday. And

the verdict was: the toppings were good. The crust seemed like it was on viagra

even once it'd cooled off in the box...

Well I met with my hep today. The colonoscopy results were good. In fact she

said that looking at my colon, there's little to suggest I even have UC [other

than when you investigate a little further]. All of the biopsies done were fine.

The ultrasound I had apparently showed a mass in my liver. That's what triggered

the CT scan request. It came back normal. Apparently, since there's a certain

amount of cell regeneration going on, that's what may have contributed to the

" mass " effect. The only unusual thing is that I have an atypically large liver

for my height/weight. There doesn't appear to be anything further that's unusual

about it [PSC aside]. So tongue firmly planted in cheek, I can tell people I

have a big organ--my doctor even said so...

I will be trying a trial of questran for itching to see how/if it works for me

and whether I like it. It certainly introduces quite the dosing schedule for it

and other meds throughout the day since you can't take it with any other meds.

[Guest guest]

Hey Karyn

Hmm ... not much of a choice really as far as your sub-total colectomy was

concerned. I guess you know where every public washroom is located.

I've actually learned to bake gluten-free to get my fix for sweets. Even with

the newer products available, I find that all too many still have that GF

taste/texture. I have a few friends with celiacs so we're forever comparing

notes. We recently tried the Pizza Pizza pizza for my one friend's birthday. And

the verdict was: the toppings were good. The crust seemed like it was on viagra

even once it'd cooled off in the box...

Well I met with my hep today. The colonoscopy results were good. In fact she

said that looking at my colon, there's little to suggest I even have UC [other

than when you investigate a little further]. All of the biopsies done were fine.

The ultrasound I had apparently showed a mass in my liver. That's what triggered

the CT scan request. It came back normal. Apparently, since there's a certain

amount of cell regeneration going on, that's what may have contributed to the

" mass " effect. The only unusual thing is that I have an atypically large liver

for my height/weight. There doesn't appear to be anything further that's unusual

about it [PSC aside]. So tongue firmly planted in cheek, I can tell people I

have a big organ--my doctor even said so...

I will be trying a trial of questran for itching to see how/if it works for me

and whether I like it. It certainly introduces quite the dosing schedule for it

and other meds throughout the day since you can't take it with any other meds.