Bile Drainage?

[Bookworm7]

I have been to see my specialist today and because my itch has been horrendous for the last few months and the side effects from Rifampasin were causing my ALT's to sky rocket he has suggested I go into hospital for my bile ducts draining, it entails a tube down the nose and into the liver, sounds horrific but I am willing to give anything a try. Apparently it can take up to 5 days, my question is has anyone had this procedure and if so did it get rid of the dreaded itch?

[littlemo]

Hi there have had itch since 2001 yr before was diagnosed with PBC. Have you tried Questran, the Questran Light formula is best. You get it on presciption I have tried lots of things over the counter and prescription over the years, you have my complete sympathy it is horrendous, irritating, frustrating and emabarasssing when at its worst and the night time itch is undoubtedly the worst. I now just take the Questran (went off Urso last Aug) I take one sachet before and one sachet after breakfast and one after a light supper and one in middle of night if needed and this has brought itch to tolerable, milder levels. Also someone else mentioned Aueaous cream with menthol you can get on presciption I havent tried this but intend to soon. I was also tried on low dose Naltrexone and low dose Morphine patches (Butrans) but none of those worked for me but I believe have worked for others. The bile drainage thing I have never been told about here or in Kings College where I attented last yr for transplant assessment so cannot tell you anything about that sorry. Hope you get some relief and reprieve soon.

[Bookworm7 in reply to littlemo]

Thanks for that littlemo, I have had the itch to varying degrees since 2004, I tried questron but it had no effect and the aqueous cream irritated my skin so can't use it. Sometimes feel like a lost cause.

The bile drainage thing is a relatively new procedure, the powers that be are in the process of trialling a new drug that will do the same job so that should help a lot of us in the future, (I'm on the list to help with the trials so ill keep you all posted when it happens, it could be up to six months away yet)

Must say not looking forward to a stay in hospital miles from home with a tube up my nose for a few days but if it works I'd have a tube inserted anywhere!!! (Sorry)

[Wingding]

Hi there. Out of interest, where in the world do you live? I ask because it seems treatment and understanding of this condition varies from country to country and this sounds like a potential real breakthrough. Good luck with the procedure anyway and I look forward to hearing how you get on afterwards.

[Bookworm7 in reply to Wingding]

Hi Wingding, I am originally from York but now live on the outskirts of Leeds, my GP referred me to Prof Basendine at the Freeman Hospital Newcastle she has recently retired and Prof David Jones took over from her he has a particular interest in PBC and is a breath of fresh air compared to other members of the Health care who have no idea about it. I count myself lucky as for years I have felt like I have been banging my head against a brick wall with a lot of meaningful nods and sympathy but not actually getting anywhere. I will keep you all informed about the procedure when I get the appointment, should be within the next 10 weeks.

[cowren]

Hi Scratty

I've never heard of that procedure when I have the itch its mainly on my legs !

My Dr said its varicose eczema ! And gives me aquaous cream

I some times have itchy hands

Where does everyone else have the itch just curious

Hope all goes well Xx

[Bookworm7 in reply to cowren]

Hi Cowren

My itch is on my arms top of my back my palms and pops up sometimes on my neck, the only way I get any relief is by freezing the areas with picnic ice packs, I only get about 3 hours sleep a night, it used to be worse on a night but for the last couple of months it has been pretty relentless and bubbles away most of the time now.

Thank you for your good wishes, its absolutely fantastic being able to talk to people who know exactly what I am going through.

[PamRopp]

I have AIH/PBC and a few other AI diseases. I am on AZA, and Urso, for the liver diseases. Urso has helped with the itch.....on bad days I take some benadryl, and sleep with a back scratcher !!

[Hidden]

Hi Scratty, I too am under Prof Jones at the Freeman hospital in Newcastle, I count myself very lucky as he is an expert in PBC.

[Bookworm7 in reply to Hidden]

Hi Donkey,

He is fantastic isn't he, I am so pleased my GP referred me to Newcastle even though I live in Leeds I don't mind the journey just to talk to someone who knows the ins and outs of this horrible illness.

Hope your well, Debbie.

[Hidden]

I too only manage about 3hrs sleep most nights if I start itching any time from around 10p.m. these days. Most prevalent come 11p.m. just when going to bed!!

I do get the occasional night where I manage to drop off to sleep and sleep through it but very few and far between.

I itch in various places, it seems it is a 'pick a spot' with me every day. I can itch some days on my arms the inner crook where the elbow is and others not. I also can itch behind my knees some days, not on others. My feet tend to be the place where I get the itch mostly, think once your feet are warm in bed then that is it. I also start getting the odd prickle on my thighs when I try to relax of an evening with tv after 9p.m. (the ONLY time do like to sit with tv on as it's not on any other time and then the PBC ruins it!). I also start to itch round the buttocks area in bed these days too. So it's for me unfortunately a sort of torso-leg-feet sort of thing. Don't get any itching on the head much, occasionally my ears do itch.

Urso has altered the itch somewhat since I started on it Dec 2010. It has sort of resolved it to just wholly night time. Prior to diagnose during 2010 I did itch a bit during the day though not overly. I somehow have it in my head that the itch will never go away for me now after being on urso for 2yrs. Think got the best it can do now. I also feel that due to eating during the day as we need to to survive obviously, the bile has done and still processing within the digestive system and come night time when the body starts to slow down, the residue bile components en route back to the liver cause the itch. Thus it then vanishes for me come around 5a.m.

I have tried in the past to not have anything to eat all day so no urso. Not done on more than 4 occasions in the past and not done now for about 6mths but I did notice that the following day after not eating a day, I didn't itch and didn't do so for several days after. Perhaps this settles the bile somewhat. I wouldn't recommend though as I found that I could lose half a stone in weight (and these days I only pan out around 8 stones 10 pounds), that was just not eating for a day!

[Silvers]

I suffered from the awful itch for about 16 months and nothing the GP / specialist gave me worked. Urso made it worse and I was on about 20 tablets a day. I decided to do a big detox and eat foods that are low in histamine. I have meat once a week and have chicken and wild salmon and also veggie dishes like asparagus soup, vegetable soup, vegetable curry and I am glad to say that I am hardly getting any itching.............. bliss!!

[Hidden in reply to Silvers]

I like fish myself. Yes we have salmon too, usually Scottish being in England though a time or two I've had Alaskan. Think only wild salmon I've had is in a tin but that's not a bad thing as the bones are in it so that's calcium too!

I did read an article recently on 10 things that a dietician would recommend one to eat but wouldn't eat themselves (!) and fish was mentioned. Shark was one that wasn't actually recommended due to there being the possibility of high levels of mercury in it. Salmon was actually the best fish mentioned.

[Silvers in reply to Hidden]

Peridot

Try and get the wild Alaskan Salmon, my dietician said not to eat salmon from fish farms as they are fed rubbish stuff. x

[Elsaval]

Yes I have heard about the tube in the liver to drain bile. I live in Nebraska and the University of Nebraska Medical Center is a research hospital and performs liver transplants. Last week I met a nurse from UNMC who told me about this procedure. She worked in the interventional radiology department. She told me that a stent is placed in the liver to drain the bile. She told me that PBC is a now a very treatable condition. The procedure works the same as in heart conditions when a stent is placed in a blocked artery in the heart. I am very hopeful about the future treatments for PBC. I'm am so lucky to live in Omaha so close to this hospital.

[littlemo in reply to Elsaval]

This is why I love this site to hear of possible treatments would never know about otherwise and also great thanks to the world wide web! I did meet a gentleman last year in Kings who said he had a drain put in to drain off bile as he was very itchy as bilirubin was very high he said thats y they did it. He had primary liver cancer. It would be fab if something as simple as a stent could prolong our liver life and possibly help improve our condition. Keep us posted on how you get on Scratty and anyone else who has this done. Ta. Bfn.

[Juamcc in reply to Elsaval]

Thanks for the information about University of Nebraska perhaps I can get in mine gastroenterology Dr to call and ask for more information about PBC heaven knows I needed it

[Elsaval]

Dr McCashland at UNMC has written articles on PBC. He is my MD and so far I'm doing well on the Ursodial.

[Elsaval]

A University of Nebraska Medical Center (UNMC) nurse told me about this bile drainage procedure years ago....But I have never heard anything more about this from anyone and I have never read anything about this. I did not ask my Doctor about this so I'm not sure if it's a treatment for PBC.