Drainage.: Hi everyone, just thought I'd... - PBC Foundation

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Drainage.

Bookworm7 profile image
11 Replies

Hi everyone, just thought I'd share my experience. I went in to St James on Thursday for my third Nasal Biliary Drainage, had general anaesthetic so knew nothing about it which believe me is the best way. I am pleased to say that it is draining really well and I am itch free. Not sure how long it will last but I am savouring every minute.

I am on the transplant list as my itch is constant and life changing so this bit of respite is heavenly.

Hope you all have a good week.

Debbie. Xxx

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Bookworm7 profile image
Bookworm7
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11 Replies
butterflyEi profile image
butterflyEi

Hi Bookworm7

from a fellow "itcher" may I wish you all the best to remain itch free and hope your wait on the transplant list is not long.

x

Bookworm7 profile image
Bookworm7 in reply to butterflyEi

Thank you Butterfly it means a lot to know you know exactly what I go through, its so difficult explaining to none sufferers that we itch isn't it (if only we could just scratch it). Take care and I hope you are not too itchy today.

Debbie.

butterflyEi profile image
butterflyEi in reply to Bookworm7

hi again Bookworm7

know what you mean, I tried to explain fatigue to a friend, she said at our age we all get a bit tired! I have not bothered to explain the "itch" :-) I feel so lucky to have found this page on Health Unlocked there are so many lovely understanding people. Not too bad at the moment but later !!!

:-)

Ktltel profile image
Ktltel

That's wonderful! Keeping you in my prayers. Hoping all falls into place for you soon.

Stella

Angel_b profile image
Angel_b

Best wishes Debbie.

katim profile image
katim

Dear Scratty, I'm glad for you! I'm living in Romania...where people don't know too much about this disease...I was diagnosed in 2015 with PBC :( Can you tell me in few words about your itching? How hard is, how intensive, where and on which area is located? I'm very scared about it... I'm confused.. I can't choose when is a normal itch and when is a simptom of PBC....

Also, can someone to tell me about values of analyzes? I have the following results: ALP 334, AST 94, ALT 79, GGT 213, total bilirubin 1.4.....these are the most important, isn't it?

I wish you all the best and thank you very much!

Sorry if my English is not correct, everytime :)

Bookworm7 profile image
Bookworm7 in reply to katim

Hi Karim, its really hard to describe but it is definitely nothing like a normal itch, its inside the body and can not be satisfied with a scratch intact if I touch my skin it makes it worse. It's the bile we produce that causes it. The only thing that works for me is ice packs from the freezer.

I have it on my arms hands feet and sometimes neck and face, I've tried every lotion and potion but nothing works for me apart from the drainage hence why I am now on the transplant list.

Your English is very good, take care and I hope you get some answers soon.

Debbie.

katim profile image
katim in reply to Bookworm7

Thanks a lot for your replay! Are you not using Cholestyramine? For me, it's working...I took 1 bag by 4 g per day and now I reduced by 1 bag/ 4 g at every three days...I don;t know if by me is similar with you (I'm stage 4 by Fibromax, unfortunately...) but I have itching maybe 10-15 times per day but for a short period (1-2 minutes), especially on internal face of thighs and some times on scalp (head)... Well, this is... I wish you good luck for your transplant, God bless you!

Bookworm7 profile image
Bookworm7 in reply to katim

It doesn't work for me, I was on it for quite a few months but got no relief. Xx

katim profile image
katim in reply to Bookworm7

I'm sorry...take care of you!

Belliver profile image
Belliver

Best of luck to you Scratty!

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