Scary Shit Series – Cholestasis

Pregnancy comes with a litany of aches, pains, and minor complications. Usually these are annoyances that come and go, but rarely become anything serious.
Until they do.
Most of us have heard of preeclampsia and have put that at the top of our “oh shit” list. Unless you’re an anxious hypochondriac with a Google problem, like me, you may not have heard of Cholestasis.
It is technically called Intrahepatic Cholestasis of Pregnancy but more often referred to as simply Cholestasis, or ICP.
ICP is a group of liver disorders that can rear their ugly heads during pregnancy. It most commonly makes its appearance in the third trimester, and like a lot of the shit we put up with to get our kids safely into this world, nobody knows exactly why it happens. What we do know is that it causes a buildup of bile acids in the bloodstream as your lazy, do-nothing liver decides to stop transporting the bile acid out of its cells.

Symptoms:

The hallmark symptom of Cholestasis is itching, usually beginning on the palms of your hands and soles of your feet. Pregnancy hormones, stretching skin, and PUPPS can also cause itching, but this is different. It is difficult to explain the intensity of this itch to someone who has not experienced it. The severity of the itch does not necessarily correlate to the severity of the disease.
One day my feet felt a little itchy. By that night, I wanted to scratch them off of my body. It spread to my hands and then to my legs and arms. I scratched until they were red and angry, and unlike most other types of itch, the scratching does not provide relief. Antihistamines and lotions also do exactly nothing. Seven years later and even a random itchy foot can make me anxious.
Other symptoms can include pale poop, which I had, but attributed to a stomach bugDark urine, right upper quadrant pain, and occasionally jaundice are other possible signs. The rest are typical pregnancy symptoms anyhow, so they are hard to distinguish without hindsight: mild depression, nausea, and fatigue.
Pay attention to all symptoms, but know that the itching will be a big flashing neon sign.

Risks

ICP is not particularly risky for the mother but can be devastating for the baby. Left untreated, the stillbirth rate is 15%. Let that sink in for a minute. There is also an increased risk for passage of meconium before birth, fetal distress, and preterm labor.
Your provider will have you come in for bloodwork to diagnose the condition. Because only a few labs in the country run this test, results may take up to a week. In some cases, it may take a few weeks after the itching begins before the lab results will show an increase in bile acids.

So what are the treatment options?

 The first thing that will likely happen is that your healthcare provider will prescribe the medication Ursodeoxycholic Acid. This should greatly reduce, or even eliminate, the itching. It is also thought to lower the risk to the baby.
You will be monitored more closely for signs of fetal distress, and will probably keep regular kick counts at home.
The stillbirth risk is highest after the 37th week, and at that point increased monitoring is not sufficient, as the stillbirth tends to happen suddenly and without warning. This is why a delivery between 36 – 37 weeks is thought to offer the best protection for your baby.
Good news! With these extra precautions in place, the risk drops to that of a normal pregnancy.

Aftermath

Everything should return to normal fairly quickly after delivery.
Once you have had an ICP pregnancy, make sure to talk to your provider before you get pregnant again. ICP has a recurrence rate of anywhere from 60 – 90% and may risk you out of a non-hospital birth. You will likely have blood tests run at the beginning of subsequent pregnancies to establish a baseline.

Takeaway

Intrahepatic Cholestasis of Pregnancy is a serious condition that, when left untreated, carries a frighteningly high risk for your baby. It is also easily treated via medication and early delivery, lowering your risk to that of a normal pregnancy. Providers have varying amounts of experience with ICP, so if you feel your concerns are being dismissed, please advocate for yourself or seek a second opinion.
ICP Care is a great website to learn more or to gather information for your provider. They also have a Facebook page and a support group where you can get support from other women who have suffered through this itch from hell.

Save

More from Rhiannon Giles

Sleep Deprivation Isn’t a Contest but Someone Get Me a Prize

  Me to my friend, “I’m so tired. I haven’t gotten more...
Read More

You May Also Like

14 Comments

  • I had ICP with my first and only pregnancy. It literally felt like fire ants were biting my whole body. It all started on my hands and feet but progressively I started to itch EVERYWHERE. I started to get symptoms during a sleepless night at the beach when I hit 32 weeks. It was the worst beach trip EVER! Luckily my doctors believed me when I told them I thought I had a problem and I got blood work done right away. I’m praying I do not get choleostasis during my next pregnancy!!

  • I’ve had ICP with two pregnancies. My first sign was severe itching on my calves. No one took me serious. I posted about it along with some gallbladder related issues. Suddenly, I had three messages in my inbox telling me to get my fractionated bile acids checked. Wouldn’t ya know, they were elevated (>10) and I was diagnosed, given meds and set up the 100 appointments that go with it.

  • My water broke with my Twins at 31 weeks & both had meconium. I had an emergency c-section and after 47 days in the NICU my boys came home safely. Because the test takes a few days we didn’t learn I had coleostastis of pregnancy until after delivery. I had mild itching in my palms & on my wrists but nothing that made me think it was serious & had seen my dr 5 days before. So the symptoms aren’t always that bad. If you’re itching at all in your 3rd trimester, call your dr, don’t wait!

  • Thank you for covering icp as a lot of ladies have no idea what it is. I started itching in my second pregnancy and researched and self diagnosed. I went to my doctor and said I have icp and had to fight to be tested. In the long run I did have it and was treated. Better safe than sorry to get it checked out. The itching usually gets worse at night. I have a healthy ten month old son after icp.

  • My first baby was stillborn without explanation at 30 weeks gestation. With my next pregnancy, at 28 weeks I had unexplained itching…later diagnosed as cholestasis. I had a happy outcome with that pregnancy and the next two children I would deliver safely, each at 37 weeks. Now that we know I had cholestasis with the other pregnancies and an unexplained fetal death with my first one, the doctors are fairly confident cholestasis played a role in my first daughter’s death. I didn’t have itching but I did have upper right quadrant pain. Glad you are bringing awareness to this condition. I always warn every pregnant person I know to never ignore itching or that upper right pain.

  • I had this very badly with my second pregnancy. The medication did not do anything to lower my bile acids or alleviate the intense itching. 9 years later I still have scars from scratching until I bled.
    Thankfully my provider reckognized the signs and symptoms of ICP and took immediate action to have us monitored very closely, inducing at 35 weeks.
    My son is now and amazing 8yo little boy.
    I have had 2 more pregnancies without itching or complications.

  • Yes – agree with the previous comment on severity of itching. I had had this is both pregnancies. The most recent not being diagnosed until over the 37 weeks which meant immediate induction. Both times I had itching but not as severe as most woman describe. I did feel sick and generally rubbish though. The itching has no correlation with the severity of the condition as I had very high levels.

  • My mother had this with 6/7 children, and had it badly. It SUCKS. Thank you so much for addressing it. When I was telling my first midwife about the family history of the problem (just in case) she had to go look it up in a textbook that was not very accurate because even she hadn’t heard of it. When my mom was dealing with it the first few times, no one knew what it was and it was left untreated. So scary.

  • Also worth noting that having this condition also puts mom at risk for a cholestasis relapse on certain birth control methods. Hormonal methods should be avoided as some pathology is blamed on hormone levels in pregnancy, making the liver more prone to those same hormones post partum.

  • Thanks for writing about this horrible condition. I thought i had a stomach bug and an allergic reaction. Alas! Cholestasis. Little guy was delivered early, had some nicu time and just turned a year. THANK YOU God.

  • I had this! The only reason I knew anything about it was an email I got from babycenter when I was 9 weeks. So thankful I remembered it. My baby was safely delivered at 37 weeks and was HUGE and now a happy 22 month old. So so so so so glad you are sharing this very very very scary complication.

  • Hi there, thanks for this post! I also had Cholestasis (and a happy outcome—my 9 month old baby boy is pulling faces at me as I type this). I just wanted to add that the itching is not always severe—but if you itch on your palms and the soles of your feet, it is *always* worth checking out. I assumed I couldn’t have Cholestasis because the itching was so mild (and remained mild), but the doctor said “If it’s your palms, it’s almost always Cholestasis.”

Leave a Reply

Your email address will not be published.