Jun 9, 2014

Cholestasis


Tomorrow, June 10, is ICP Awareness Day.
ICP stands for Intrahepatic Cholestasis of Pregnancy and is a liver disorder during pregnancy. I had it when I was pregnant with the twins and their is a good chance I have it again this pregnancy, pending lab results. I'm itchy. And uncomfortable. And with a reoccurrence rate for ICP of 70-90% (depending on which study you read) I probably have it.

Many women have ICP horror stories of doctors refusing to acknowledge itching could be a problem and never testing for cholestasis or even worse, refusing to run the test when the mom specifically requests it.

My story isn't one of those horror stories. I started itching before Christmas at 28ish weeks pregnant with the twins. The evening of January 1, 2012 I texted my OB to ask what over the counter medications I could take for itching because I was increasingly miserable and unable to sleep. She told me to come in the next day for blood work. When the lab results came back (which takes a while!) it was confirmed that I had cholestasis. I was 30 weeks along. I got started on Urso immediately and did find some relief. My OB along with my MFM were debating the appropriate time to deliver the twins given this complication when my water broke at 33 weeks. (Read about my diagnosis here. Read my full labor story here.) This pregnancy my OB has been equally wonderful and responsive. I had baseline bloodwork at 12 weeks and have had it monitored ever since. I still have to worry about the potential complications, but I know I have a great medical team taking care of Baby J and I.

Pending the results of lab work, I might be delivering in just three weeks. Eek!

 

So, what is ICP?

ICP slows down the flow of bile acids in the body until they build up in the blood stream. Having bile acids causes a ridiculous itch that is unlike any itch you have ever felt. It radiates from inside you. You want to peel back your skin to scratch internally. I heard of a woman who used a cheese grater on her own legs. I never reached that point, but I did reach a point of itchiness where her actions didn't sound crazy because pain would be preferable to the itch.

If you are itching during pregnancy, tell your doctor! Itching is the main symptom of ICP and for many women (myself included) it's worse at night. Other symptoms: dark urine, pale stool, jaundice, preterm labor, right upper quadrant pain, nausea, fatigue, loss of appetite, and mild depression.

Itching might not seem like a huge deal, but some of the repercussions from ICP are. (And when the itching is making you cry and stopping you from sleeping you'll think it's a big deal!). ICP is most commonly associated with higher rates of stillbirth (much much higher), premature labor, fetal distress, meconium passage, and maternal hemorrhaging. Of these, obviously stillbirth is the scariest. But, with management and treatment the risk is lowered to be the same as any no complication pregnancy (about 1%).

Currently, treatments consists of using a medication commonly referred to as Urso to manage bile acid levels and delivering early (no later than 37 weeks). The only full cure for cholestasis of pregnancy is delivery.

This condition is rare (1 in 1,000 pregnancies) and not a lot is known about it. Doctors don't know exactly what causes it but are researching hormones, genetics, and environmental factors. More research is needed!

The Itchy Moms at the Dallas ICP Awareness Event.
 

To support that goal, the amazing women at ICPCare started ICP Awareness Day and had events all over the country. I am lucky to live in a city that had an awareness event and our whole family met up with other Itchy Moms at Klyde Warren Park on Saturday. We had a great time sharing stories, offering support, and letting our babies play in the children's park.

It sounds silly, but the support I got from other women online who had ICP and knew how I was feeling was invaluable at a really stressful time. The chance to meet some of these women face-to-face? Priceless.

Tripp was a bit unsure at first.
 

Davy went straight in.
 

Families at the event enjoying lunch,conversation, and raffles.
 

Davy liked the playground.



Tripp warmed up to the place and was shrieking in joy.
My handsome boys!





 


For more information on ICP visit ICPCare at http://www.icpcare.org

 

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