Re: Severe PSC itching - foods

[Guest guest]

>Hi Deb,

Just a little embarrassed but wanted to find out if you received my

email to your address. Responded to your message a few days ago and

wanted to make sure you received it. I'm a little new at this and

not sure how all this works, but wanted to thank you again for

taking the time and sharing your experience with psc with me. It

really helps alot to know your not alone.

Sincerely,

Jan

UC 1995, PSC 1999 & re-diagnosed 3-2007

> Jan,

> Yes, I have had the same issues that you speak of - tomatoes and

> citrus fruits all made me itch more. If I ate fatty foods

(anything

> over 5-10 grams of fat), that also made things worse. When I was

pre-

> tx, I had sores from head to toe that are now little scars. I

itched

> constantly. I felt like no one would ever turn down the volume on

the

> itching. It was driving me nuts! So, I hope you'll understand that

I

> do " get it " when I say, that as horrible as it is, you do have to

eat

> as much as you can to stay healthy enough for transplant. You need

> some fat reserves for your body to handle the stress of the

surgery.

> So, even though I know you're in hell right now, you have to force

> yourself to eat. Ask if the tx team has a nutritionist that they

> could refer you to that could be a major help.

>

> In my first months after tx, I could eat whatever I wanted and I

> wouldn't itch a bit. (I had pasta with marinara sauce almost

> constantly!) That was when the immunosuppression was the highest

and

> any allergies would have been at their worst. So, I don't believe

> that it was allergy-induced itching at all. It was the PSC itch.

I'm

> nearly two-years out from tx, and I've got post-surgical duct

issues

> that are causing me to itch whenever my bilirubin jumps above 2

> (happens about once or twice a month). The same foods that were a

> problem before tx are a problem again, now. So, from my

experience,

> different foods to aggravate the PSC itch.

>

> I'm curious, if you feel uncomfortable talking about it here,

email

> me privately, do/did your hormones affect your PSC?

>

> Best wishes,

> Deb in VA

> PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Partial

Portal

> Vein thrombosis 7/2005, 13 PTC's with drain placements/

replacements

> from 9/2005-3/2006, 3 sinus surgeries 2006, 3 GI Bleeds 8/2006-

2/2007.

>

[Guest guest]

Yes, Jan, I got it and replied. I'll resend it. Sometimes Yahoo doesn't

like me . I'm glad you followed up. Take care, Deb

> Just a little embarrassed but wanted to find out if you received my

> email to your address.