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Obstetric cholestasis - am actually quite scared now....(bit of an essay)

(24 Posts)
sicutlilium Sat 11-May-13 21:03:10

Hi OP - hope all went well. If there are any continuing issues you would like to discuss, do contact the ICP Support helpline.

Thank you for that post sicut. Off to read the attachment now

sicutlilium Fri 29-Mar-13 12:04:58

It is very difficult to hear stories about stillbirth when you are pregnant, even if the intentions are well-meaning. Through my involvement with ICP Support (formerly OC Support) which was a support group for 20 years before it became a charity last year, I know more than anecdotally that, sadly, the condition is associated with an increased risk of stillbirth and ICP stillbirths do still happen. The latest research suggests that this risk can be reduced with active management such as the OP is getting. The latest research paper can be found on the ICP Support website here: www.icpsupport.org/pdf/12_year_study.pdf
The people who run the ICP Support helpline are very knowledgeable and the line is open as usual over Easter:
Easter Support Line: 07817 441726, 10:00 a.m. – 7:00 p.m. Good Friday to Easter Monday.
Email: supportline@icpsupport.org

BlueButtons Tue 26-Mar-13 18:09:58

I so needed that pillow 3 weeks ago, I'm the same, freeeezing feet any other time but with the oc hot, swollen and throbbing, drove me nuts. I hope I remember that if there's a no 2!

I've just been offered a sweep but caught off guard and not prepared so I declined. All doctors and midwives seem to be chilled out about the whole thing, it's funny how we all get hyped up over the odd horror story, and yes, usually from somebody who knew somebody and not someone you actually know!

ilikemysleep Tue 26-Mar-13 16:45:48

I had OC in my last two pregnancies, in one it wasn't diagnosed because they checked liver function not bile salts (but symptoms were identical to diagnosed case with net pregnancy) and DS was born exactly at 40 weeks healthy and happy, with DD I had it from 34 weeks and was due to be induced at 37+4 but went into labour after a sweep at 37 weeks exactly. I think they went earlier than 38 weeks because my bile salts were rising despite meds. I was also a fruitcake having heard a 'friend of a friend' story about a stillbirth at 36 weeks from OC but both my OC babies were none the worse for it, and the specialist midwife said it was 'a long long time' since they'd lost an OC baby, and this is one of the largest maternity hospitals in the country where they see lots of OC pregnancies.
I did buy something called a 'chillow pillow' from amazon at the end and used to wrap my feet in it (it's a gel filled pillow you fill up with cold water) - it absolutely amazes me now because I absolutely HATE having cold feet and am a strict bedsocks and slippers girl! However it did bring me some relief at the end of pregnancy - I used to put it in the bed under my feet or lie my head and neck on it.
www.amazon.co.uk/Chillow-Plus/dp/B0056FPASG/ref=pd_sim_sbs_kh_2

BlueButtons Tue 26-Mar-13 14:35:53

I'm exactly the same with the ctg, even if bubs is wriggling away while they are attaching it!! And constantly waking up in a panic convinced the worst has happened, it's just completely irrational fear! Totally understand you feeling lonely, I've only told close family about the condition and induction as I couldn't bear the questions and sympathetic head tilts! Going to be a surprise to everyone that he/she arrives early!

Hope you manage to relax a bit, I'm more terrified of the induction now, I haven't noticed the itching as much!

Bluebuttons, I sometimes wake in the night convinced that baby isn't moving, but put it down to sleep deprivation..... When I go for monitoring if they don't find baby's heartbeat within five seconds of putting the straps around my belly I almost start crying. And i am usually a calm, collected person grin

Thanks for replies, was just feeling a bit lonely in my suffering last night as ds and DH snored away angry I am being induced at exactly 38 weeks, am currently 35 plus 3, so not long to go really. Am going to the foetal health unit twice a week for monitoring, and taking my tablets and my bile acids have come down considerably so I feel it's all under control. Just so tired with this cold weather making me sniffly, feeling constantly bunged up, and a load of jobs still need to be done around the house and in prep for baby.

Am quite scientific in my thinking so have read around the condition a lot, and have discussed it to death with the doctors and midwives. I don't think there is much else that can be done, it's just one of these things that we have to live with for a while. I wanted to put my feet in a bowl of cold water last night I just did not have the energy too. Not long to go now....

I have a nurse practitioner appt later so might ask for some aqueous cream with menthol then.

BlueButtons Tue 26-Mar-13 12:29:25

I have oc and know exactly how you feel, it doesn't matter how many positive stories you hear if you hear one of a stillbirth thats the one that sticks! My consultant explained to me that as there has been some belief that babies born later on to women with oc may be stillborn or more likely to be distressed (still v. small risk) they induce to bring the risk back down to normal, as he said stillbirth is the worst possible thing to happen in pregnancy so they do everything they can to reduce the risk.

I developed the condition at 34 weeks and have been monitored once or twice a week, every appointment I work myself up for but at each one baby has been very happy, I agree with others that in the case of stillbirth there may be other factors involved that don't always get told.

I've found aqueous cream with menthol has offered relief, and going to yoga, relaxing just for an hour a week has made an amazing difference.

Good luck to you, I'm booked in for induction this week, fingers crossed everything goes smoothly! Xx

ExpatAl Tue 26-Mar-13 12:21:18

I have a horrible feeling you've all come across my MIL. She is the most amazing doom hound ever. If there's a bad ending she'll know the story.

june2013 Tue 26-Mar-13 11:04:40

Unrelated but my mum's partner has had a post op infection after a heart valve replacement last Oct. Subsequently, several people my mum has spoken to have told her about people they know (friends of friends of friends I suspect) who have had to have an amputation as a result. My mum has been FREAKING out ever since. 1) I think (inconsiderate, dramatic and selfish) people can't help themselves with horror stories, 2) I think it's hard to ignore or forget because you (one) has so little control over the condition, all you can do is submit yourself to the will of science / medicine. I think that lack of control is incredibly difficult to deal with.

Two things have really helped my mum: meditation (pregnancy yoga would probably help, if you're able to do it) and reading or asking someone to tell you about the actual science (GP, medic friend, a reliable website, check cochrane library you might find something...).

Good luck x

ChairmanWow Tue 26-Mar-13 11:02:54

Glad PPs have been able to post some reassuring info. Sadly some people are extremely insensitive in discussing stillbirths and other horror stories with pregnant women, and some seem to actively enjoy it. If its any consolation I actually told a colleague to fuck off after she told me 3 horror stories in the space of a week last time I was preg. She has avoided me like the plague this time grin

Re the itching, one of my friends had OC with her (very healthy) son a couple of years ago and had oatmeal baths. She put the oatmeal in an old pillowcase and tied it round the hot tap to let the water run through it. It didn't completely get rid of the symptoms but she found she could get a bit of sleep if she did it before bed.

MightBeMad Tue 26-Mar-13 10:55:27

Oh poor you Cheese. You're only about 2 weeks from term though aren't you now (currently 35 weeks ish?). Really not long to go now. if the itching gets unbearable, maybe you could speak to your consultant about indiction from 37 weeks?

Oh my god the itching!!! It's so bad today! There's one spot under my big toe which I just can't seem to reach and it's driving me mad! And I need sleep but I can't sleep because of the itching. confused Just needed to moan. Thank you for listening smile

sicutlilium Thu 07-Mar-13 14:21:20

It's important to take into account that the recent research into the risk of stillbirth with OC/ICP involves active management i.e. weekly blood tests, the use of medication and delivery of the baby by 38 weeks. It sounds as though this is what the OP is getting.
The most recent paper that helps to support active management is:
Intrahepatic cholestasis of pregnancy and associated adverse pregnancy and fetal outcomes: a 12-year population-based cohort study E Wikstrom Shemer, HU Marschall, JF Ludvigsson, O Stephansson
The charity ICP Support has a very helpful website with lots of information about the condition: www.icpsupport.org They also run a helpline and a Facebook group which support women and their families who are affected by the condition.
The paper referred to above will be posted in the Research Papers to Download section shortly.
Good luck OP - I know myself how horrible the itching is.

Fishandjam Wed 06-Mar-13 22:50:06

I had probable OC in both my pregnancies (the medics still can't quite decide if it was that or some weird manifestation of HELLP). DS is 3 yrs
and DD is 9 mo smile. My understanding is that OC is now considered to be more of a hazard to the mother than the baby. I'm sure you'll be fine!

Thanks for replies. I had an awful night last night, the itching was on another level and I felt like hacking my feet off. Feel a bit more positive today though, remind myself everyone I look at ds that I was ok the last time so I need to take it a day at a time for the next few weeks.

weegiemum Wed 06-Mar-13 06:08:36

I didn't have OC but a similar kidney problem (was on the verge of kidney failure/dialysis with dd2, got air ambulanced out from our very remote location to a major centre with scbu).

Dd2 is now 9 years old, a very stroppy whiny 9 right now as she just got given a brace by the dentist to stop her sucking her thumb!

It's very worrying to be so ill in pregnancy, but the odds are very much for you. I do understand why you're concerned. I was induced with dd2 just before 37 weeks as they thought she was better out than in by then. I'm sure your doctors will do all they possibly can for you and baby!

Emmaw9 Wed 06-Mar-13 06:01:52

I had cholestasis too and I am holding my 13 week old baby in my arms!
Please don't panic, I don't know what would possess somebody to tell you that. I was also on urso. DS arrived naturally though (was told it increased the risk of going into early labour) at 37+3.
Just wanted to reassure you and wish you luck with what's left of your pregnancy and a healthy happy baby!

Hi mightbe, yep forgot to mention I'm on Ursofalk and vit k twice a day, so yes I do feel like the hospital are doing everything they can. Am a bit twitchy if I think I haven't felt baby move for a while which is a good thing I suppose, and your comments make sense. I know I'm being irrational but I just wish I hadn't heard that one story.....

MightBeMad Tue 05-Mar-13 21:48:52

Op I too have had cholestasis so know a bit about it! The specialists I have seen have ALL told me that the most recent thinking is that oc may not pose a stillbirth risk at all.

It is a sad fact of life that some, thankfully very few, babies in 'normal' pregnancies are stillborn late in pregnancy. Inducing all women with oc at say, 38 weeks, inevitably eliminates the stillbirth risk between 38-42 weeks gestation because the babies are no longer in utero. On that basis, the cautious approach remains to induce oc patients early but there is really no conclusive evidence that if they didn't induce early, that the oc would cause stillbirth. For one thing, it's an incredibly difficult thing to research because what mum-to-be when told that there is a unknown potential for risk to her full term baby, is likely to refuse induction and take a wait and see approach? Not many, and not enough to form the basis of a reliable study.

Please please please don't panic. You are getting good treatment. Your friends story is heartbreakingly sad for the family involved but it is just as likely (if not more?) that the baby died as a result of something unrelated to the oc.

One thing you don't mention is if you are being given medication to manage your bile salt levels. Worth a discussion with your consultant? Also don't forget if you're at all worried you can go in for additional monitoring on the labour ward at any time.

Good luck!!

Thanks rock chick. Was just checking the thread before I got into bed and i like your thinking! If my body coped with it once then it can cope again! That's my mantra for the next few days grin

Rockchick1984 Tue 05-Mar-13 21:32:07

It will be fine! Some studies have shown an increased risk of stillbirth but nothing definitive, and as you said you've had it before, so honestly trust your own body and your own experiences smile

Am 32+ weeks into my second pregnancy, and have had obstetric cholestasis diagnosed last week. Had it in my first pregnancy too so I know the score, risks etc. I have been told I will be induced at 38 weeks, same as last time. Am going into hospital twice a week for ctg monitoring, and having weekly blood tests for liver function tests etc. All standard stuff and to be honest I think it's pretty good care, on top of the normal midwife appointments I have. I felt quite well looked after and having had a positive outcome with ds1, was feeling ok about it all.

Until a couple of people I have mentioned it to have been telling me horror stories sad I saw one of DH's colleagues who is a few months pregnant. Chatting about our pregnancies, told her about the OC, and she went onto tell me how her sister lost her baby at 36 weeks last year due to OC. She had been going in for monitoring twice a week too, all was well on say visit 1 of the week, by visit 2 the baby had died sad. Not what I wanted to hear obviously but as I said I know the risks and one of them is the baby being stillborn. DH's colleague then repeated the story to DH who told me it, he didn't realise I had already heard it from her, and he asked if we should be going in for more monitoring etc? I said no that's their policy.

The problem is I now can't get the story out of my head, and am convinced I am going to lose my baby. I know it's irrational. But I had a miscarriage before this pregnancy and this pregnancy to be honest has been rubbish from day one. I have suffered with every textbook ailment and just feel crap. So I am almost convincing myself it is not going to end well.

Tell me it will be fine. I will be fine but more importantly baby will arrive safe and sound. I am being overly anxious and all will be well. I don't want to tell anyone in real life how stressed this is getting me as I know I need to stay calm and as relaxed as possible.

Sorry for the rant. Am hoping if I get these thoughts down they wont be so strong and I can get through the next 6 weeks in one piece. I feel so rubbish with sinusitis and insomnia on top of a toddler and working four days a week but this is actually taking over my thoughts sad

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