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cholestasis, anyone?

post #1 of 24
Thread Starter 
Hi All,

I'm just over 31w with twins, and was dx with a mild case of cholestasis this week. Basically, this means problems with my liver functoning. The cure is delivery.

While at the docs they said they would monitor the babies via a non-stress test twice weekly (checks their HB and movement rates from external monitor). Since then I've gone online and made some discoveries...so I have more questions for my peri now.

Much of the online info indicates delivering early to avoid stillbirth....but there must be more to it. For example, my first research on "itching" indicated it was from high levels of estrogen - so I decreased soy in my diet. When I tried soy again, the intense itching returned. Experiment over - soy is OUT. Perhaps there are other things I can do to minmize the impact of this problem....and I don't mean calamine lotion to disguise a symptom.

Has anyone here had this? If so, what was your experience?
Really, I'm looking for any info from a mom's POV.

Thanks!
post #2 of 24
My only experience has been cholestasis due to gallstones. I read that that is different than the pregnancy induced type.

Would a low fat diet help at all or is it just totally a result of the pregnancy hormones?
post #3 of 24
No experience myself, but one of my good friend's is pg with her 3rd and this is her 2nd time dealing with cholestasis. I'm worried for her. They are inducing her at 36 weeks since the rate of still birth goes way up after that point (this is what she tells me).

post #4 of 24
Hi AnnJay,

What a coincidence! I was just at the peri this morning and complained of itching. The doc didn't think it was "bad enough" to be cholestasis, but she did mention that as a possibility.

My skin is generally sensitive, and lately I've been taking hot showers because they feel really good, especially for my hips. But it seems to be drying my skin out and no matter how much oil/lotion I put on, hours later I'm itchy again.

I also had a NST this morning and the tech said it was fine. The test seems very subjective, though, IMHO.

Let me know what you find out, ok? I'm also doing the web search on this, and kinda freaking myself out.
post #5 of 24
Thread Starter 
Hey Leslie,

I found a web site called itchy moms with info, and they have a yahoo group. Apprently there have been lots of still births associated with cholestasis, yet the other web sites seem to downplay that aspect. Perhaps it depends on the degree of the condition?

Apparently, it is purely hormonal as delivery removes the disease. However, there have been cases where women have also had gall bladder problems. Follow up after L&D required.

As for your itching, the amount of itching does not correlate with the level of bile acids in the blood. So just b/c your itching is not extensive doesn't mean you don't have the condition. Don't mean to scare you.

Let me know when you get your results, OK?

AnnJay
post #6 of 24
I was diagnosed with cholestasis with my twin pregnancy. I ended up being induced at 34w4d because baby A had virtually no amniotic fluid. My symptoms had been getting worse and worse despite medications, and both my OB (who was relatively cavalier about ICP in the beginning) and I had a bad feeling about it. I was feeling decreased fetal movement and hadn't slept in over a week because of the incessant itching, so he sent me for a biophysical profile which showed the lack of amniotic fluid (I had been getting biweekly NSTs up until this point). I still shudder to think of what might have happened if I hadn't had that BPP and been induced - I read too many horror stories about ICP and stillbirth.

FWIW, I had a lovely vaginal delivery and my babies were only in the NICU for 4 days.

Here's a link to the cholestasis thread in the pregnancy forum - lots of good info there:

http://www.mothering.com/discussions...ht=cholestasis

Also http://www.itchymoms.com/ is a great resource. You can find the link to the yahoo group referenced above on that website.

Hope your case isn't too bad - that was the most miserable I have ever been in my life! Best of luck to you.
post #7 of 24
I was diagnosed with cholestasis in my third trimester with the twins. Mine was a horrendous case; at one point I was threatening suicide over the phone to my doc, if she couldn't think of something that would help the itching.

Definitely check out http://www.itchymoms.com/ if you haven't already; there's a lot of support over there. The site also discusses herbal supplements that can be used to strengthen the liver function. I didn't try any of those, so I can't comment on that.

I wound up taking Actigall for two months, which improved my bile acid test results and also helped the itching a bit. We wound up consenting to nonstress tests weekly during the last 6 weeks. We also wound up delivering a bit early; I was fairly well convinced based on the research I'd done that cholestasis was good reason to consider early delivery. I had a scheduled section at 37 weeks. We might have induced, but I was a VBAC case plus DS was still transverse. My babies were 5 1/2 and 6 1/2 pounds and healthy.

Cholestasis is also a good reason to consent to the babies' being given Vitamin K after delivery. Some mamas also receive it themselves before delivery.

I'm told a very low fat diet can help a lot, both with the symptoms and with potential harm to the babies.

Good luck! Cholestasis is one of those things that a lot of women are still having trouble getting OBs to take seriously.
post #8 of 24
AnnJay,

I have had a lot of itching, and my midwife told me to ask my OB about cholestasis. The first thing he said was "don't look at itchymoms.com!" He doesn't think I have it, but may run the tests at my next appointment. Also, the most recent e-mail from my midwife said " you should know that the latest study on What You Don't Have looked at 496 women with it, and a matched group without, and the outcomes were the same (ie: great) for both groups. It just needs to be watched, that's all." So even though the internet info out there is very scary (I did way too much Googling), please don't panic.
post #9 of 24
Thanks for all the info!

AnnJay, my peri didn't run the test. She wants me to come in next week for a NST and the week after for u/s.

I've totally freaked myself out with the websites. My urine isn't dark but my poops have been kinda pale--I just figured it was from what i was eating.

I'm considering going to the health food store tomorrow to get some dandelion root & milk thistle. Has anyone considered self-treatment? The sites also suggest low-fat and admittedly I've been on the higher fat side (2% milk, cheese, ice cream, peanut butter, meat).

I've stopped the hot showers and am slathered in oils and lotion. If I don't feel better mid-week, I'm going to rattle the cage at my doc's office.

I wish there was an "itchy" smilie!
post #10 of 24
Do you have a rash? I had horrible, horrible itching when I was pregnant, and definitely went to itchymoms.com and freaked out. It turned out that I had PUPPP (which has a really long and gross-sounding name), and it's really uncomfortable, but not at all harmful. I'm sure if you've been diagnosed, then that's that, but just a thought. If you have a rash at all, it may be pupp instead.

As far as helping with the itching, the only thing that helped me was ice packs and Sarna lotion (you can get it at the pharmacy; it's with the medicated lotions). The ice packs were really the best. I hope that helps, and I hope that you don't have to deliver early, and as awful as it is, I hope you have PUPPP instead of cholestasis!
post #11 of 24
No rash here, so I don't think I have PUPP.

My itching has reduced somewhat. I've switched to a lower-fat diet (tho still eating nuts, dairy, meat!). Taking tepid showers (which really sucks) and keeping well moisturized. Humidifier 24/7.

I did pick up dandelion root and milk thistle and have been taking small amounts since Sunday.

I was worried yesterday that I wasn't feeling one of the babies move, so I called the doc's office. They had me come in right away for an NST. I felt so relieved hearing the heartbeats! Baby A had the hiccups for 10 minutes, so we had to wait that out. [Baby A is now tucked behind B, and that's why I wasn't feeling him/her.] Then they had 'beautiful' patterns, according to the tech. I felt so much better. We go back for another NST on Friday.

AnnJay & uccellina -- any updates on your itching??
post #12 of 24
Thread Starter 
Hi Leslie,

I asked for another test to be run, and found out more info. Normal levels are under 35 or so, and my first test was a 42, my next a 49. Doc said they get concerned with levels over 100, so I really do have a mild case. Nonetheless, I am scheduled for 2x weekly NSTs and I'm going to request the test every 2w.

The docs did offer me meds to stop the itching - but I don't want to take them. I'd rather deal with the itching - at least until it gets to the point where I'm suicidal or something, and I"m nowhere near there right now! So in my case, this really is just something to keep an eye on - and I'm hoping that I can still make it to 36w or later.

Leslie, you should ask for the test again just to be on the safe side.

AnnJay
32w2d twins
post #13 of 24
I did!

thanks for your note, AnnJay -- I saw the doctor today and asked for the blood test. They rotate docs at the practice I go to and today's doc took the situation much more seriously. We'll have to wait another week for the results, but at least then we'll know.

I did take a little milk thistle and dandelion root this week, but no where near the recommended dosages. The itching has become more intermittent, but it did wake me up again last night.

Funny, the doc said I should take an adult dose of Benadryl at night -- same thing the other doc said last week. I told him I didn't want to just mask the symptoms. He nodded and said, 'but that's the point! You need to get some sleep. We know it isn't going to 'cure' the itching, but you need to feel better.' I really liked that explanation! I have to run out tonight to buy some...

Keep me posted, ok?
post #14 of 24
ok, the Benadryl is definitely not working. It made me sleepy, yes, but didn't do a thing for the itching. The only benefit seems to be that I'm up again at 2:30 a.m. and the servers are not busy at MDC!

AnnJay -- do you remember what meds were recommended to you for the itching? Just curious. I'll probably call the office tomorrow.
post #15 of 24
Thread Starter 
Hi Leslie,

Benadryl was suggested.
There are some other meds referred to on the Yahoo Group ItchyMoms.com that are used for bad cases to help the liver. Since mine is a mild case, I'm really trying to not take any meds. Last night was hard to sleep, but I keep practicing mind-over-matter with the itching. I figure it will come in handy for approaching childbirth! (or do we say children-birth with twins?)

Oh - also suggested was applying ice and cold baths. That doesn't interest me!

AnnJay
post #16 of 24
When I called in to say the Benadryl pills weren't working, one of the docs recommended the following: Benadryl cream and a 1% hydrocortisone cream, both over the counter.

Dh picked them up from the store, I mixed them 50/50 as described and presto! relief!! The first day I put it on all over my arms, legs and back. By the second and subsequent days I could focus on "hot spots". I don't put it on my belly...kinda freaked out about putting any steroid cream that close to the babies.

Now that I have some remedy for the itching, the BH cx have really picked up. I'm telling you, if it's not one thing, it's another! Pre-labor, here we come!!
post #17 of 24
ok, so I finally got the test results and while the nurse didn't say that I have cholestasis, she did say that I have elevated bile salts. I'm going in this afternoon (right now) and will talk to the doc. I asked for numbers and the nurse gave me two salts, one colic acid, normal is 3.1 or under and I'm at 19.1. The other I can't pronounce but normal is 9.9 or under and I'm 30.6.

They're prescribing Actigal to decrease bile acids. I have to check the itchymoms site - I don't remember this one. And NSTs 2x/week, which is what I'm going in for right now.

I feel validated (finally!) that the itching is not just in my mind, but I'm really upset that it took almost three weeks to get the test, get the results, and get some action.
post #18 of 24
Actigall (orsodiol, generic) is the standard Rx for cholestasis. They're doing the right thing. Are you being followed with NSTs or biophysical profiles?
post #19 of 24
thanks, jackson's mama -- yes, I will now have NSTs 2x/week. I had a biophysical profile on Friday and may (?) have another.

It's confirmed: I have cholestasis. I talked to the doc this afternoon, ironically the one who suggested Benadryl and moisturizer the first week I reported that I was terribly itchy. She apologized, which I appreciated. Apparently my bile salts are "significantly" elevated. My NST today was fine, though I am contracting more -- still just BH.

The practice is discussing my 'case' on Monday and will have recommendations for dh and me to consider next Tuesday. I'll be 35 weeks then. Today the doc said they may suggest an amnio test for lung development, and then either inducing labor or scheduling a c-section by 37 weeks. We'll see.

I thought twins were ok by 36 weeks -- is lung development still a concern? I suppose we'll be able to ask next week. Anyone else have to deal with these 'choices'?
post #20 of 24
I delivered my twins at 37 weeks because of cholestasis. They were just fine. DS had a little trouble breathing the first three hours, but was fine thereafter, and DD had no lung trouble at all.
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