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My Cholestasis Journey

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Cholestasis… pronounced kō-lə-ˈstā-səs. It just SOUNDS awful. And it is. The itching …. oh the ITCHING! And it’s worse on the palms of your hands and the bottoms of your feet. You see, you itch because of your blood, not your skin, so no amount of itching will relieve it. Oatmeal baths, lotions, and even anti-itching medications — useless and the medication can even be harmful so don’t do it. If you’ve ever experienced it you know I could go on and on about it and STILL not do it justice.

For me, it reared its ugly head about 38 weeks and hit like a freight train. I remember so vividly being up at 2 am, itching, crying, and Googling and more crying. And the more I Googled the more it seemed likely that I had this scary-sounding condition called Intrahepatic Cholestasis of Pregnancy. And sure enough, my liver levels were tested and it was confirmed.

Close up of a woman scratchingWhile Cholestasis is rare, I still run into people now and then that have had it. They say 1 or 2 out of 1,000 pregnancies will be diagnosed. Intrahepatic Cholestasis of Pregnancy (ICP) is a liver disorder and the term “cholestasis” refers to any condition that impairs the flow of bile, which is a digestive fluid, from the liver. While it can be seen as early as 8 weeks of pregnancy, it is much more common to appear in the third trimester. This is due to hormone concentrations being higher. From the site itchymoms.com it says:

Women carrying multiples, women who have had IVF treatment also appear to have a higher risk and those who have had previous liver damage or issues may be more likely to develop. The incidence of ICP also shows a striking geographical pattern, with a higher prevalence in Scandinavia and South America specifically Chile where the reported prevalence is as high as 15.6%. Mothers and sisters of patients are also at higher risk of developing the condition, proving that there is a definite genetic predisposition.

Standard protocol is to do an induction or scheduled cesarean at 36 or 37 weeks. This was a far cry from the homebirth I was planning at the time. I had also had a low-lying placenta that was completely covering my cervix until about 35/36 weeks and was on bedrest for 8 weeks during this pregnancy to boot.

Instead of automatically transferring my care, my amazing midwives recommended an herbal regimen. I started taking milk thistle and dandelion leaf religiously. I am not, by nature, a super-consistent person (just look at my pattern of when I publish blog posts) but you better bet I was meticulous with these simple herbs. I got the milk thistle in a tincture form and we bought some straight-up organic dandelion leaves at the health food store.

I couldn’t stand the taste of the leaves themselves… the more I ate the more bitter and awful they became. So we would chop up and prepare two separate smoothies for me about every other day for weeks so that I could take the tinctures with regularity, and without gagging them down.

We tested my liver levels a week later. My midwives said that if we could at least keep the levels the same and they didn’t rise, that we could continue with plans for a homebirth. Otherwise we would be transferring care and doing a medical induction at the hospital. Undesirable, but I wouldn’t have hesitated should it be necessary.

As high as 15% of pregnancies with Cholestasis that go untreated result in a stillbirth. It is a fairly irritating condition for the mother, but can be fatal to the baby. And I was well aware of that. This is not something to mess around with or treat lightly.

It also gave me a rush of terror and gratitude since I was fairly certain I had this condition when I was pregnant with my first, but the itching wasn’t as bad and I never thought to tell my OB that I was “really itchy.” I just chalked it up to being pregnant in a dry climate in the winter time. But I would itch my feet so bad in my sleep that I would bleed. I had perpetual scabs on the tops of my feet and thought I would have permanent scarring from them it was so bad. I even got to the point I was wearing socks on my hands at night to prevent me from itching. My doctor had no idea, though because in the U.S. you see your OB for only an average of 6 minutes for a prenatal. Hardly enough time for them to pick up on and ask about something like severe itching, that’s usually worse at night.

295 Days Pregnant, or 15 days "late" July 2010

295 Days Pregnant, or 15 days “late” July 2010

So back to waiting for the results… they came back and not only did they not increase, they went DOWN into “normal” levels!! It was a miracle!! We kept a really close eye on everything and I stayed extremely consistent with the herbal regimen that my midwives had me on and just continued with the original plan of staying pregnant until the baby decides to come.

With my first, I went to 42 weeks and 2 days so we knew it was a strong possibility that I would go past 42 weeks. In Colorado, where I gave birth to my first 3 children, you can have a homebirth after 42 weeks if you have an OBs “green light” as I like to call it. I saw the amazing Dr. Johnny Johnson. He said I was very healthy overall and he had no problem with me having a homebirth. I did have my membranes stripped at that appointment and had the same thing done at 42 weeks with my first son.

The woman who did the ultrasound told me that the machine didn’t measure above 9 lbs 6 oz and she was confident that my son was larger than that, but couldn’t tell how much larger. She offered for us to be induced at the hospital in case I wanted helped with that. She was very respectful and polite, and I replied that I could push out a 10 lb baby at home and that I would be just fine. They were all very supportive and sent me on my way with my stamp of approval.

I went into labor that night and gave birth that night at about 2:30 in the morning after three and a half hours labor that was virtually pain-free and what I would call perfection. Intense and powerful, but perfection nonetheless. I was 42 weeks and 3 days when I delivered and he was 9 lbs 15 oz of absolute perfection. I called the doctor’s office the next day to tell the ultrasound tech how big he was and that I did it! His birth story and video montage make me cry every time I watch it. He is just so amazing to me.

But my journey of Cholestasis didn’t end with that one pregnancy. It is very common and expected to repeat with subsequent pregnancies and I was pregnant again just 8 months after giving birth. I was, of course, highly concerned that the itching would crop up again and I would have to go through the entire process all over again. Just because it worked out one time doesn’t mean that this next time it wouldn’t have been more severe of a case.

301 days preg

301 days pregnant, or 43 weeks pregnant Jan 2012

So I started taking the milk thistle right from the first trimester. Then in the third trimester I jumped the dose and also added the dandelion leaf, both in capsule form this time. I was taking about 4-6 capsules spread out over the day, every day, in the first trimester and then about 12 per day in the third. And like before, I was highly consistent with my dosing and had a wonderful midwife again that was a hospital based CNM that monitored my progress and condition. At the different times we checked my liver levels I was normal and never was diagnosed with Cholestasis with that pregnancy. I have high-risk pregnancies due to the Cholestasis, but there is very little that is a direct risk to the labor and birth process from it, especially with my levels being in the normal range both times. This time I even went to 43 weeks at 4 days and had him at home, unassisted. His birth story is so tender to me and I’m so glad I wrote it up right away.

Please note: Do NOT attempt to self-treat or diagnosis this condition. As I said earlier, it can be very serious and may not be obvious how serious it is until it is too late. I am not one to motivate by fear, in fact I do all I can to not do anything out of fear, but I want to be very clear that this is a serious medication condition and requires care by a physician or qualified midwife to handle it.

I plan to always watch things with every pregnancy I have in the future as well but have also been trying to love and support my liver in between pregnancies. I also have come to know that Cholestasis is a condition that highly involves the gallbladder and ties in with this post of a gallbladder attack I had just last year.

What has YOUR experience been with Cholestasis? I would love to hear about it!

13 Comments

  1. Pingback: Naomi’s Peaceful, Unassisted Birth at 43 weeks and 4 Days | The Birth Pro

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  3. I also had a homebirth after a cholestasis diagnosis. Thankfully my midwife and I had just attended an awesome class on herbs in pregnancy, and were able to get some guidance from this master herbalist. We decided together on the following regimen:
    400 mg SAM-e daily (not an herb, but an over the counter supplement proven in the medical literature to have a positive affect.)
    3 quarts water with lemon
    2 apples each day (the pectin in apples, and lesser quantities in other fruits, helps to clear bile salts from the body)
    nettles, milk thistle and dandelion. I experimented with how to take these. It was hard to drink enough tea, and I don’t drink alcohol so the tinctures were hard to get down. I ended up just going with capsules. I take (yes I’m pregnant again!) about 3 grams of nettles per day (helps with my allergies too), 1.5 grams of milk thistle and 1 gram dandelions.
    Daily exercise seems to help a lot as well. With the 2 following pregnancies, I have exercised daily, and never had my blood levels give an official cholestasis diagnosis, though I am fairly certain that I am still at high risk. (My sister gets it as well, and my mom lost a baby to “unknown causes” at 35 weeks) I’m glad to hear that all went well for you, and that you are spreading the good word. Cholestasis diagnoses seem to be becoming more common, and it’s such a scary/hopeless/uncontrollable thing with only the medical world’s standard of care.

  4. I had cholestasis in 4 of my five pregnancies. My last one was somehow itch-free. I developed symptoms around 26w with #1, 2, & 4, and around 32w with #3. I had what was considered severe cholestasis, with bile acid levels above 100 at each diagnosis. My midwives/doctor immediately put me on Urso, which is the recommended medication to protect the baby, which I continued to take until delivery.

    With my first baby, I planned an unmedicated hypnobirthing hospital birth overseen by my midwives. However, because of the cholestasis and frank breech presentation, I delivered via c-sec at 37w1d. It was a good thing, too, as my placenta had begun calcification, which is, as you know, another complication of cholestasis.

    Starting with that first pregnancy, (and except my last), I took milk thistle and dandelion throughout. In my third pregnancy, under the care of a naturopath, I took a liver support herbal supplement that was a combination of several herbs. Each time, I still developed severe cholestasis. (For any other moms reading, severe means bile acid numbers greater than 40.)

    I’ve had many moms ask what I did to avoid cholestasis in my last pregnancy. Nothing. I didn’t change a thing. I don’t know why it decided to skip that particular pregnancy. I wasn’t more active. Wasn’t more careful with my diet. Wasn’t taking any special supplements. My doctor joked that maybe my body just got tired of having cholestasis.

    Thankfully, I haven’t suffered any loss as a result of cholestasis. My kids are all healthy, happy, and smart–and, like you, I’m grateful to have had great care providers who helped keep me and my babies safe.

    • Did the milk thistle and dandelion help your itching stop??

      • Patsy thank you for your comment! It did reduce it some and certainly seemed to keep it from getting worse! But it was not immediate. Hope that helps!

      • I was diagnosed with Cholestasis this week (week 20, 1st pregnancy) after three weeks of itching. It got to the point where my entire body was on fire and I was becoming lethargic, nauseous with upper right quadrant pain and dark urine. Being familiar with herbs I ground up dried dandelion root, with dried wild nettles and ground kelp. 6 hours after taking the 1st teaspoon my itching subsided by 50%. After two doses I had a day of zero itching. I stopped the regime for a day and the itching returned intensely. My blood work and doctor have confirmed the cholestasis but I am confident to stay on the herbal regime vs the medication as it is working and now using both Dandelion root and Milk Thistle with additional ground nettle powder. Does anyone have any dosing recommendations for the nettle and Milk Thistle volumes that they used? Thanks for sharing!

  5. So how much exactly of the Dandelion root and milk thistle should you take a day in the capsule form? I’m currently 11 weeks with my second after having the horrible itch/cholestasis with my first 🙂

  6. Hi.

    Got a question. My alkaline is extremely high (from the liver function test results) and I’m itching a lot. Doc thinks it’s cholestasis but the only problem is that I’m only 14 weeks pregnant ie in the first trimester. I am considering to take milk thistle capsules immediately to avoid stillbirth or other complications. But question is how many capsules per day? In this article you said you took many capsules per day? How does that work? And how safe is that? Please try to answer these questions. Thanks

    • I am not a doctor and if yours is thinking you have Cholestasis at 14 weeks that could potentially be very serious. Milk Thistle is safe to take during pregnancy but I highly recommend you stay close with your care provider with such an early onset like that. It is not something to mess with and you can get local holistic support in tandem with your current provider. Hope everything goes beautifully for you!

  7. Thank you for sharing. Just started having ICP symptoms. I am at 36.5 weeks, and have a scheduled c-section at 39 weeks anyway. I am looking into decreasing the levels and keeping baby in there as long and as healthy as possible!!!

  8. Naomi,

    Thank you so much for sharing! I feel the itchiness creeping in with this pregnancy (#2)
    I was diagnosed with baby #1 and took the prescription, since having my first daughter I have turned away from prescriptions unless all natural options have been exhausted or it’s much safer to take than the risk of self treating.
    I talked to my midwife about this development of itchiness and she also told me to get on milk thistle and dandelion root, along with liquid chlorophyll. I am going to take the recommended doses, but I wanted to know what you actually took. If it’s different I’d like to talk to my midwife about it, since you’re a success story! 🙂

    • What a journey you’ve been on Bianca! And yes follow what your midwife recommends for dosage. I do not share my dosage here as I do not want someone just following instructions off of a blog on the internet without being seen and cared for by a qualified practitioner. I followed exactly what my midwives told me to do and felt safe and comfortable with that. We also were monitoring my blood levels very closely to be sure what I was doing was not only working but, again, safe.

      Hope that helps!

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