*Please Read* Obstetric Cholestasis

[kmr1763]

Originally posted in normal threads but then realized the sticky was here.

I have the worst case (for me!) of pregnancy insomnia. It's caused by lots of things but always results in me being up for hours in the wee morning. Today it's the possibility of cholestasis! GAHHH!

Yesterday I started itching. Insane itching that left huge red patches all over my body. I was convinced it was dry skin so I moisturized, duh. Yesterday while dh and I were driving home I got itchy on my feet. The bottoms, the annoying place that you can scratch but it never really feels better. So I peeled off my boots right there to scratch scratch scratch. Then before bed my palms AND feet are itching, horrid, lasts half an hour? Now at two am I get woken up by the most intense hand/foot itch of my life. And now I'm awake all alone so start to research.

Pretty sure this must be cholestasis. I was out for a 4D yesterday and baby was healthy and a whopping 3 lbs 11 oz. Now I'm almost certain she will be pre-term, as my son was naturally preterm and she will most likely be induced.

I am sitting on pins and needles til I can call in the morning. Just glad the itching started today and not during a weekend when no one is there.

Kind of a rant. Anyone else have/had it? What was your experience?

My gallbladder was removed a few years ago after DS was born. Good thing it wasn't called cholecystasis LOL or I might not have clicked the link.

 

[kmr1763]

I really really really wish there was someone on here going through something similar that I could speak to!
I went in that day and got blood tested. My liver function tests were normal, although I did not ask any specifics. But the bile test will take about a week to come back. In the meantime, the doctor prescribed me meds to reduce the bile (she decided to assume it was OC and I love how seriously they took everything) and a heavy duty anti histamine. My itching has reduced quite a bit, but it is still there. I despise waiting such a long time for bloods to come back. I'm nervous that it will come back normal but still turn out to be OC. I don't want any chances taken with my LO! Anyway, hoping someone shows on the thread soon!

 

[BabsTTC]

Hi kmr,
You are not alone! I am in the process of being diagnosed with OC as well. I have had 2 liver function tests done so far and both of them are high. Cut off is 40 and my latest was 170. Good news is that at least its not 400 or 500 - otherwise they would have sent me for ECS. I am still waiting on the Bile acids and should get them either today or tomoroow. I have already had 1 grown scan last week (babe is 4 lbs) and 1 NST. I have 2 NST's scheduled every week along with blood work.
I started itching about 2 weeks back as well. It started slow and withing 2 days was intolerable. I already had a scheduled appointment with my OB and mentioned it to her. Immediately she sent me for blood test and growth/movement scan. Thank god baby is doing well. My doc has asked me to keep a very close watch on the baby's movement and for now the plan is to induce week 37.
My itching has been a bit better last 2 days. Even though its so cold, I am wearing only cotton t-shirt with cotton pj's. No blankets- only a pure cotton sheet on me in the night. Coldish baths. Each time I feel like itching I either numb the area with ice pack or put cream on it. I try to avoid itching as much as possible- bz once I start its never ending and the pain from scratching starts after that. Drinking load and load of water to try and flush out some of the bile acid from your system. I am taking ibprofen for now to help me sleep. Doc is till waiting for the bile acids before giving me the Ursol for OC. The issue with Ursol is that they don't really know how it might impact the baby. So my ob does not prescribe it unless the # are indeed high.
Good luck to you. Hope your bile acids results come soon. Babies born week 37 do very well. So its totally worth it compared to the risk of still birth.

 

[kmr1763]

I wonder if I should be nervous about taking this bile reduction med! But it felt rely nice to be taken so seriously, and I guess she thought it was better for baby to start treating straight away? Hmmmm, I hate that I have to wait til the end of the week to get the results! I'm skipping tonight with the itch meds because I have felt so tired since I started taking it.

I wonder if my liver function tests were normal what that means for bile tests? Of maybe it means nothing? Grrr!

 

[kmr1763]

After thinking about the meds, I stopped taking. I got paranoid about medicating without test results. Now it's been nearly two weeks (two weeks tomorrow) and my blood test results STILL have not come in. I'm very upset, I know that's beyond standard. I called the ob nurse today and she told me it could take three to four weeks. I'm really just angry. She is putting me off. The ordering dr told me about a week. I'm not sure what the delay us, but I take the health of my baby VERY seriously, and it's disturbing when the people who are caring for you don't feel the same. Now I had my 32 week appointment tomorrow. For some reason they called my husband's phone, and the clueless guy cancelled my appointment thinking it was his.

I feel like crying right now. I had every intention of going in tomorrow and demanding answers. Now I'm going to have to stress and hope that tomorrow morning my appointment time is still available so I can get seen tomorrow.

AHHHHHHH!

 

[futuremama88]

After thinking about the meds, I stopped taking. I got paranoid about medicating without test results. Now it's been nearly two weeks (two weeks tomorrow) and my blood test results STILL have not come in. I'm very upset, I know that's beyond standard. I called the ob nurse today and she told me it could take three to four weeks. I'm really just angry. She is putting me off. The ordering dr told me about a week. I'm not sure what the delay us, but I take the health of my baby VERY seriously, and it's disturbing when the people who are caring for you don't feel the same. Now I had my 32 week appointment tomorrow. For some reason they called my husband's phone, and the clueless guy cancelled my appointment thinking it was his.

I feel like crying right now. I had every intention of going in tomorrow and demanding answers. Now I'm going to have to stress and hope that tomorrow morning my appointment time is still available so I can get seen tomorrow.

AHHHHHHH!

I would keep taking the meds just to be on the safe side if I were you, and I say this being a very med-wary woman myself. I had cholestasis in my last pregnancy and it hasn't shown in this pregnancy as of right now, and I may even talk to midwife about possibly taking urso as a preventative measure. Is it ursodiol you're on? It's really good stuff, it really helped me last time.

 

[kmr1763]

Ummm the stuff says colestid? It's a powder I have to dissolve in water and drink. I will have to look it up and see if it's a genetic version of the one you said.

My appointment was postponed til Monday, so here we go another weekend of not knowing one way or the other. I might call triage and see. I was thinking about taking it. The itching went away a day or two after I started drinking the stuff, and now that I've stopped, I itch but not as badly.

Thanks for your input! I need someone to talk to who has been through all of this!

 

[Angelique]

Hey ladies, I just wanted to give a little input here, I suffered HORRIBLY with OC my last pregnancy, and I'm terrified it's gonna hit me again this time, a couple things I found that helped... Lotion with peppermint essential oil in it... Its extremely cooling and sooths a lot. I had it in the summer, but I can only imagine what it's like to not want the blankets to touch me, but being cold during winter. I hated being hot and sweaty, I showered 3+ times a day to keep my skin cool and used the peppermint lotion a lot. I got to the point I was sitting in the bathroom alternating soaking my feet in an ice bath, and scratching them with a fork. I shed a lot of tears, and I have scars from making myself bleed from itching, even in my sleep.

But I wanted to tell you, I took the meds, and delivered at 37 weeks, and still delivered a healthy 7 pound boy, who luckily suffered no effects if this horrible condition.... Also if anyone has questions or just wants someone to talk to who's been there, feel free to message me.

I now have a phobia of itching of any kind... Pregnant or not, it freaks me out! I wish everyone the best! Just know when your little ones get here, it really does go away! The minute they handed my baby to me, I said I'd do it all again... .

 

[futuremama88]

Ummm the stuff says colestid? It's a powder I have to dissolve in water and drink. I will have to look it up and see if it's a genetic version of the one you said.

My appointment was postponed til Monday, so here we go another weekend of not knowing one way or the other. I might call triage and see. I was thinking about taking it. The itching went away a day or two after I started drinking the stuff, and now that I've stopped, I itch but not as badly.

Thanks for your input! I need someone to talk to who has been through all of this!

You should keep taking it IMO. If it is helping with the itching it is likely also bringing your bile levels down, so it will help protect your baby. Wishing you all the best

 

[kmr1763]

So I went to my appointment this morning and results were still not in. I was so fed up! Luckily, I saw the same dr. who had ordered the test and she told me she would try to figure out the hold-up. She asked me to go get more done so we could get a handle on the next results. I told her I'd stopped taking the medicine because I was paranoid, and how sweet she was! (if you have ever been to a military hospital, you know you score when you get an awesome provider!) she basically told me to do what I was comfortable with, at this point it was a guessing game for both of us. She sent me for bloods and a couple vaccines.

So I sit there waiting for flu shot and she called me back to tell me my numbers were because and definitely high... 37? And so to take meds but plan is to induce at 37 weeks. Go back in two weeks and then every week after that. So I feel good. I'm glad we know this is the issue and we can act appropriately. The waiting was driving me insane, I hated not knowing whether my baby was in danger, if keeping her in there was riskier, etc. Ugh! So as sucky as it is to get this dx, it's a relief too, because now we know what needs to happen. THANKS ladies for the support, and advice! The. Past two and a half weeks have made me insane!

 

[sojourn]

I am worried about this now. I have been very mildly itchy all over my body. The palms of my hands and the soles of my feet itch for sure and it gets worse (but is still not unbearable) at night. It seems like OC itching is unbearable, could it still be the same thing if it's just quite mild?

My regular OB appointment is on Thursday. Is it OK to wait until then to talk to the doctor? The nurse at my OB practice SUCKS! Any time I've called to ask questions she is incredibly dismissive and condescending. I truly hate dealing with her.

I could understand if my questions were ridiculous, but they've been like "Hey, I have a fever of 102 and I've been vomiting and having diarrhea for the last 8 hours and my baby isn't moving. Should I go to the ER, or are there measures I should take at home?"

I am already 37 weeks, my baby is kicking away as usual.

 

[kmr1763]

I called my triage nurse and they had me come in, and when I got to the doctor, they treated me very seriously. I personally would call
ASAP for two reasons. First is because you're already 37 weeks, and induction if you have cholestasis is generally between 37 and 38 weeks. Second, because the main test, the bile salts or whatever it's called, can take awhile to come back. Ladies on here say a week or so. Mine took over two.
Is there a primary doctor you could call to get the test run? Try to avoid dealing with your nurse til Thursday?

 

[sparklycat]

Just saw my doctor, will be induced at 39 weeks for cholestasis - this seems quite late compared to what people say on here? x

 

[kmr1763]

Just saw my doctor, will be induced at 39 weeks for cholestasis - this seems quite late compared to what people say on here? x

I think different doctors do different things... They go based on their own experiences. That being said, the norm to me has seemed around 37/38. My doctor wants to induce at 37, but I get more blood results tomorrow and want to see if we can wait til 37.4 or 38... What were your levels? Maybe they are not too high and they feel it's safer to leave baby cook just a bit longer?

 

[sojourn]

I called my triage nurse and they had me come in, and when I got to the doctor, they treated me very seriously. I personally would call
ASAP for two reasons. First is because you're already 37 weeks, and induction if you have cholestasis is generally between 37 and 38 weeks. Second, because the main test, the bile salts or whatever it's called, can take awhile to come back. Ladies on here say a week or so. Mine took over two.
Is there a primary doctor you could call to get the test run? Try to avoid dealing with your nurse til Thursday?

I called about the itching this morning. I got "All pregnant women itch. Your body is growing. Take some benedryl and you'll be fine"

The only way to talk to a doctor is to be face-to-face for an appointment. When my husband called because I was having my second asthma attack in the middle of the night and we wanted to know if I should keep using my inhaler, or go in for a breathing treatment. She said "All pregnant women snore. Have her take some Unisom and get some rest"

When I called for the food poisoning and reduced fetal movement I got "All pregnant women vomit. Take some pepto-bismol"

The woman is a complete moron.

Guess I'll be waiting until Thursday. I've done some more research and I am not really alarmed. With the extremely late onset, it is unlikely that they would induce me unless my numbers are extremely high. I also checked with my husband's lab and their experimental maternal/fetal medicine department has the tests on hand, so it will come back quickly (the reason it takes a long time to come back is because it's not a routine thing, so the lab has to order the test before they can test your sample).

 

[sparklycat]

Am getting so fed up now!! Another sleepless night last night with itching worse than it's been for a while. I've been googling and all the medical journals/advice I can find say that induction should be 37/38 weeks and any longer is dangerous with risk of still birth. I'm in the hospital on Sat for monitoring and I'm going to push them as to why it's 39. The doctor that I saw last week who said that it would be 39 didn't know what he was talking about and kept having to go and check with another doctor, plus he looked severely hung over or coming to the end of a long shift and really spaced out. GRRR.

x

 

[kmr1763]

I'm sorry you are dealing with that sparkly! I definitely would request a second opinion! But if they change nothing, just be extra careful about watching baby. If you notice decreased movement or changes from the norm, go straight in!

 

[Tashiee]

Hey Ladies,

Just wondering do you always have dark urine with OC? I am currently 30 weeks, and initially started with bad night itching if my feet a few nights ago then hands and feet and now seems to be all over. Definitely worse at night - not sure if its just cause im not as busy. But im starting to not sleep properly. I have my ob appointment tomorrow so will be asking about OC, and insiting about testing if he doesn't decide to do this regardless.
I have not noticed a change in urine colour though, so not sure if that makes the itching more likely to be something else?

Thanks

 

[qwerty310]

Hey Ladies,

Just wondering do you always have dark urine with OC? I am currently 30 weeks, and initially started with bad night itching if my feet a few nights ago then hands and feet and now seems to be all over. Definitely worse at night - not sure if its just cause im not as busy. But im starting to not sleep properly. I have my ob appointment tomorrow so will be asking about OC, and insiting about testing if he doesn't decide to do this regardless.
I have not noticed a change in urine colour though, so not sure if that makes the itching more likely to be something else?

Thanks

Hi Tashiee,

I noticed sudden onset of severe itching on my palms and soles of my feet a few days ago as well as even darker urine than normal (almost orange for FMU!). I wasn't drinking enough water at night though because I was trying to pee less...

Got tested yesterday for OC - will update you when I get back results in a few days. I hope that you don't develop this. So much changes in our bodies its hard to know!

AFM will likely be induced immediately if blood test comes back positive at all elevated which seems to be the protocol at my hospital after 37 weeks but I will try really hard to see if there's something we can do to keep him in even a few days longer for his development if it's not really high. I'll update here - this forum was helpful to me in recognizing these weird symptoms!

 

[Tashiee]

Saw my Ob today, and he has sent me for blood tests which I will do tomorrow since I need to be fasted. He looked a bit concerned but said we wont worry until we need to based on the tests. Fingers crossed its nothing, baby is already small so needs maximum cooking time plus I am not ready in 6-7 weeks haha