Re: Severe PSC itching - foods

April 23, 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.

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