obstetric cholestasis- any tips?

[francesca1978]

hello from a newbie

i've had a little search around and found a few posts on this topic, but i was wondering if anyone had any recomendations for things to help with the itch?

it's so bad i only got about 2 hours sleep last night. i've tried having a bath with oats in, sodium bicarb, menthol in aqueous but nothing really helps... is there ANYTHING else i could try before i jump out of the window!!!

thanks
francesca x

Hi, sorry to hear that you suffer from OC. There's alot of info on this on previous threads. Try using 'Search archived messages' on the top of the screen.
Unfortunately I can't remember suggestions for relieving the itch. Prufrock, a fellow sufferer, may see your message and respond with advice.
Please make sure that you are closely monitored (blood tests, bile acid tests, etc) during your pregnancy by the Obstetric team.

No.

How many weeks are you? Are you on Urso yet? I did find it helped. I also saw a homeopath nd time around who gave me various remedies to try to counteract my sickness and support my liver. If you are in London I can recommend one.

The itching is caused by the bile acids in your blood "escaping" through your skin. So reducing blood flow to your skin by keeping cool can really help. I wore only natural fibres, slept at night on and under a linen sheet and would cover myself in a non fragranced, very liquid body lotion and then lie in front of a fan. I actually had my dh blowing gently on my feet one night before we went out and bought the fan. On really bad nights I used to sleep with my hands and feet encased in those wine bottle cooler sleeves that you freeze to make cold.

i'm 28 weeks. i started on the urso last thursday- how long before it starts taking effect? i'm up in manchester. did the homeopath help? i'm willing to try anything now.

i've been itching since about 16 weeks but it's got worse and worse. i'm glad that i've been diagnosed in a way because at least i know that it's not just in my head!

francesca x

I know what you mean. I can remember telling my midwife with 2nd baby that I though I was itching just becasue I expected to - when she pointed out that in the time I'd been talking to her I'd unconciously scratched my hand so muc I'd drawn blood.

I started on urso quite early and found it did help within a few days - but there were still some times, (particularly when I'd been admitted so was sleeping on scratchy sheets in a warm ward) when it was unbearable. What dose are you on? There has been recent (well recentish - ds is 1 now) research in Italy that showed a far highr does than previously thought could be given, and that higher doses did have a better effect. At the end I think I was on 800mg per day - every time the itching came back with a vengeance my consultant upped the pills (the hospital pharmacy got a bit annoyed because 2 weeks of my prescription wiped out their supplies)
I'm not sure how much the homeopath helped with the itching tbh. It could just as easily have been teh conventional medicine. I am a huge believer in homeopathy genearlly though, ezspecially as OC is an "internal" illness - in essence your liver doesn't cope with the hormonal changes of pregnacy so stops doing it's job preoperly, and homeopathy is all about encouraging the body to work properly itself rather than "fixing" it.

Hi there,

Hope you find something to help with the itch but more importantly are you seeing your consultant? cholestasis can be very risky for near term babies so you should be getting very closely monitored. If they consider the baby at risk they may induce you a couple of weeks early. Im not trying to scaremonger, or worry you unduly, but a friend of mine has had this problem and neither of her babies were allowed to go to term because of the risks that were involved although in her first hospital it was only picked up because a visiting consultant insisted they did something.

Oh francesac I jsut assumed you would be - yes elastamum is right, you should def, be under consultant care. Weekly LFT's and Bile Acids and CTG monitoring, Growth and Doppler scans every 2 weeks, and if available Ductous venousis scanning (where they check blood flow through babies heart). And all Jenny Chambers at eth helpline (her numbers on here loads of times ) if you ever think you are not being managed properly

Have you tried piriton? It's not a cure but can take the edge off the itching.

well when you say under the consultant....! I've not seenher just the registrar and yesterday an SHO who was more than usless!

had a horrid day yesterday.
at 2pm went to the day unit for the foetal heart monitoring- everything ok.

went for scan- everything ok.

went to see consultant..... it all goes down hill from here.......

waited almost 2 hours in boiling waiting room.

Finally get called and girl of about 10 introduces her self as SHO.

asks me why i'm here, so i go through all the oc thing.

makes me do another urine sample even though it was clear yesterday with midwife.

tries to take my BP. can't do it.

tries other arm can't do it.

Has to go and talk to someone else next door.

as you can imagine i'm now getting a little annoyed.

someone else comes to take my bp. surprise surprise it's elevated.

tell me that they want me to go up to the day unit to use the foetal heart monitor and to have a bp profile done.

i explain that i've done that already today and i can still feel the baby moving ok.

she rings day unit- they are busy. so she admits me to a ward.

go up there, still in my horrid work clothes as i thought i would be home by now.

take bp 4 times, goes back to normal.

wait an hour for doctor to discharge me.

dotor comes to ward says she wants bloods doing before she will discharge me. i had these done on tuesday but let them take them again.

three hours later another SHO comes to tell me that my lfts are high and they want to keep me in- for gods sake i could have told them that EIGHT hours ago, that's the whole bloody reason i'm here in the first place!!!!

i say i'd rather go home.
she says ok if your sure. i say i am, get my stuff and get out of there.

i then spend the next hour feeling terribly irresponsible, although i'm not sure what they thought staying over night was going to suddenly going to do for my liver!!

anyway, back to the point! i'm having twice weekly monitoring, weekly liver and bile tests, scans every other week and taking 300mg of urso twice a day. been taking urso for a week now, have noticed the itching has improved on my body but on hy hands and feet it's just as bad. Piriton do nothing for the itching but they make me a bit drowsy so i can get of to sleep.

thank you for listening to me!
francesca x

Oh francesca I can really sympathise - I went through a very similar thing.

Many SHO's donot really understand current best practice for OC. Their recommended treatment sometimes seem designed to protect them from malpractice claims rather than help you. There is NO NEED for you to be admitted at this stage - all they will do in hospital is CTG monitoring, which will only tell you that the baby is fine whilst you have the monitor strapped to you. Very reassuring, but if you are feeling lots of movement slightly unnecessary. And IMO & E the emotional stress of being in hospital was far more damaging than not being able to hear my babies heartbeat 3 times a day was.

I printed out this (all 4 sections) and puta few copies in my notes so I could give it to the less widely read SHO's. I also wrote a short summary of both pregnancies and what I wanted from this one so I could pass it over every time I saw somebody new - it saved them going through my notes every time, showed them I was an informed patient, and meant I didn't forget things, which is easy to do. E-mail me at prufrock at hotmail dot co dot uk if you want me to send it to you as an example.

I also enlisted the help of the best midwife in the MFAU to get me transferred to teh best and knidest consultant. Do try to build up a realtionship with the person you are seeing twice a week - I took mine chocolates all the time and a present when I had my last appointment (though she was so lovely she would have treated me exactly teh same without teh chocs). As a "regular customer", it shouldn't be beyond the bounds of possibility to arrange your appointemnts at a time that the consultant is free to come down to the day unit to see you for 5 minutes, rather than getting caught up in the bureocracy of the regular ante-natal clinic (I once went up there to discuss my OC with a consultant and ended up being lectured on my iron levels by an SHO who criticised my diet, ignoring the fact that I was so sick that anything but white carbs came straight back up - so No, I couldn' eat more red meat.)

Good luck. Whilst they do seem to be doing everything necessary, they could do it in a way that makes it easier on you.

thanks for that link i've printed it off and put it in my notes. went to see my gp yesterday who's signed me off work for a couple of weeks so i can get some rest.
when i go this week to the ANDU i'm going to ask if i can see my consultant. They keep telling me how serious and rare this is and that i need to be in her care and come to her clinics but i haven't seen her! I know that SHO's have to learn and everyone is new at sometime but i'd just feel better if i could discuss it with someone who at least sounded like she knew what she was talking about!!

i don't know how much help it is but i've tried to cut back on dairy and just have a glass of milk to make sure i'm getting some calcium and drinking loads of water to try and help my liver in some way, at least it makes me feel like i'm doing something.

my GP said 'if you get to 36 weeks..." my god that's only 7 weeks away!!!!! i'm not ready yet!!!

I felt like that first time as well. I really wasn't ready - decorator was still doing dd's nursery and the living room. I went into hospital for blood tests on Bakn Holiday Monday (36+5) and they told me they wanted to induce as LFT's were rising again - I persuaded them to let me go home for the afternoon and come back later. I spent the afternoon scrubbing my living room floor free of paint marks and packing my bag.

Do be prepared to deliver anytime after 36 weeks. And do be prepared for a c-section. They will probably induce you, but a relatively high percentage of first time pregnancy inductions end up in a c-section, especially when done pre-term. Mine was a fairly positive experience, but it would have been better if I'd known it was likely and had a chance to get comfortable with what was going to happen beforehand.

well another interesting day at the hospital.
baby was being very awkward and kept moving so the monitor lost the heartbeat!
after an hour, although the baby was moving well and it's heart was beating away the computer hadn't recorded enough minutes when the heartbeat was above a certain level, which it should have done because baby was wriggling around. so i was admitted to a ward again and had to wait for 4 hours before they could repeat the ctg.
after the longest 4 hours of my life, we finally went back on the monitor and the awkward little sod performed for the midwife so that we met the required targets after just 10 minutes!

if it's like this now god help us when it's born!!!

i feel a bit better about being ready though- my pram came this week and at least we've got a cot so it wont have to sleep in a drawer if it does decide to come early!! i'm also going to pack a little bag to leave in the car with some pj's and some toiletries in so that if i do get admitted again at least i wont be panicing about clean knickers!!!

Oh francesca what crap - an experienced midwife should be able to check the babies heartbeat is OK in minutes, not have to stick to guidleines on CG's - especially when the lost trace is because the baby is moving so much.
I do understand why you waited though - despite knowing that I didn't need to be in hospital I ended up there for 3 days in my 2nd pregnancy because my consultant was away and his registrar put the fear of God in me. And there is always that littel niggle that says - "if you go home against their advice, even though you know they are wrong, something happens to your baby it's your fault".

How is the itching now?

btw- did I mention that the product of my first pregnacy - who survived OC - is 3 tomorrow and shares your beautiful name.

oops - 3 today!

i had OC and plan a second baby but am very scared when i read threads like this. is it really that bad??? [scared emotion]

my itching is gettin better- i don't really itch durng the day now, just at night. i cover myself an menthol in aqueous and take some piriton, even though the piriton thing is in my head it seems to work!

my lft's have come down to 63 from 293 so they're nearly normal now but the hospital still haven't had my bile results back from birmingham, the midwife who was looking after me said she'd chase them tomorrow for me!

i'm back there on tuesday so hopefully baby will do some tricks for them in we can be in and out!!

say happy birthday from another francesca !!

what are you scared of nanny jo? once they know you've got it everything is fine. The unit where i go has seen alot of cases so i'm happy that they know what they're doing- i just don't like waiting around in hospitals!!!

No Nanny Jo - it's really not that bad. DS is definately worth it. (Although because of the OC and the terrible all day sickness I get for the first 20 weeks I'm sticking firmly at 2).

You just have to be prepared to self manage your care until you find a good midwife/consultant and find your way around the hospital system. I ddi find that hospital care for OC tends to be centred on not losing your baby (which is obv. quite a good ambition) rather than on making your pregnancy a more tolerable experience.

2nd time OC does tend to start sooner, but them you know what to do when it does, and can start on the drugs as soon as the itching starts.