ICP Warrior
I am an ICP Warrior. Two times over.
What does that mean? I had Intrahepatic Cholestasis of Pregnancy (or simply, cholestasis) twice. ICP is a rare liver disorder (1 in 1000 pregnancies in the United States) where bile production is slowed down or stopped, causing bile salts to develop in the bloodstream. One of the most common symptoms of ICP is intense itching.
Intense doesn't begin to describe just how miserable the itching is, at least for me.
Imagine you have bug bites all over your body, and I mean every square inch. The itchiest kind. Then turn your skin inside out. That should give you a small idea of how bad it was.
No, this itch cannot be helped with Benadryl (though it can help with sleeping for some). No, lotion will not help because it is not dry skin. Unless that lotion has menthol and/or lidocaine in it, then it will give some temporary relief. My favorite remedy was the Aloe Vera sunburn relief gel that has lidocaine and menthol in it.
And no, I could not just stop scratching. I couldn't help it! Okay, I could stop long enough to slap the itching spots and stomp my bare feet on the cold kitchen floor, or smack my hands on the dashboard in my car.
The itching was much worse at night, so I didn't sleep. With Kate, it was really only about two weeks (which was bad enough). With Livia...I had nine weeks of itching. Nine sleepless, miserable weeks. I was given Atarax to help me sleep, but it didn't help. It got me to sleep, but when I woke up in the middle of the night, the itching just got worse, AND I was drowsy to boot.
To give you an idea of just how bad the itching was, I will share some pictures of my battle wounds. Warning: if you're squeamish, you might not want to look.
I also had a lot of bruises because cholestasis can interfere with Vitamin K absorption.
I was induced at 37 weeks with both Kate and Livia. Other than a bit of jaundice (because of early delivery), Kate had no complications. Livia ended up spending 48 hours in the NICU because of breathing issues--her lungs hadn't been QUITE ready when she was born. But 48 hours in the NICU was better than possibly losing her if we had waited longer to induce.
Both are completely happy and healthy :)
But here is the scary part:
Everything I went through was with proper treatment. I never had to fight my healthcare providers for diagnosis or proper treatment. Early induction was a given--I didn't have to fight for that either.
There are many women who have to fight their providers about SOMETHING related to cholestasis, whether it be diagnosis, treatment, and sometimes even early induction. Or else their doctors tell them that itching is normal and they are crazy (this happened to a college friend of mine who I helped get diagnosed).
I am grateful every day that I never had to fight for diagnosis, treatment, or induction. I even remember telling the midwife who ordered my tests with Livia about some providers not taking this seriously, and she was shocked. "We take cholestasis VERY seriously at this practice!" she exclaimed.
"Laura, you talk about this too much."
Yes, I do talk about this a lot. The reason I am so passionate about spreading awareness is because there are still healthcare providers who are ignorant about this--saying nothing of the general public. People have a general idea of what preeclampsia and gestational diabetes are, but when you say you have intense itching...they sometimes start asking, "Is it your blood pressure?" or "Do you have to go on bed rest?"
Another reason I am passionate about this is because my particular case of cholestasis is the result of genetics. I am a third generation Itchy Mom, but the first in my family to be diagnosed and treated. We got the dominant form of the gene, which means I have passed this down to Kate and Livia. It is my hope and prayer that by the time they reach childbearing age, more will be known about cholestasis and even more can be done for it.
June is ICP Awareness Month. This year, our theme is ICP Warriors. We are warriors because battled cholestasis and somehow survived. Many are warriors because they fought for proper diagnosis and treatment. We are all warriors because we are fighting to save more babies.
For more information, check out icpcare.org
What does that mean? I had Intrahepatic Cholestasis of Pregnancy (or simply, cholestasis) twice. ICP is a rare liver disorder (1 in 1000 pregnancies in the United States) where bile production is slowed down or stopped, causing bile salts to develop in the bloodstream. One of the most common symptoms of ICP is intense itching.
Intense doesn't begin to describe just how miserable the itching is, at least for me.
Imagine you have bug bites all over your body, and I mean every square inch. The itchiest kind. Then turn your skin inside out. That should give you a small idea of how bad it was.
No, this itch cannot be helped with Benadryl (though it can help with sleeping for some). No, lotion will not help because it is not dry skin. Unless that lotion has menthol and/or lidocaine in it, then it will give some temporary relief. My favorite remedy was the Aloe Vera sunburn relief gel that has lidocaine and menthol in it.
And no, I could not just stop scratching. I couldn't help it! Okay, I could stop long enough to slap the itching spots and stomp my bare feet on the cold kitchen floor, or smack my hands on the dashboard in my car.
The itching was much worse at night, so I didn't sleep. With Kate, it was really only about two weeks (which was bad enough). With Livia...I had nine weeks of itching. Nine sleepless, miserable weeks. I was given Atarax to help me sleep, but it didn't help. It got me to sleep, but when I woke up in the middle of the night, the itching just got worse, AND I was drowsy to boot.
To give you an idea of just how bad the itching was, I will share some pictures of my battle wounds. Warning: if you're squeamish, you might not want to look.
I also had a lot of bruises because cholestasis can interfere with Vitamin K absorption.
I was induced at 37 weeks with both Kate and Livia. Other than a bit of jaundice (because of early delivery), Kate had no complications. Livia ended up spending 48 hours in the NICU because of breathing issues--her lungs hadn't been QUITE ready when she was born. But 48 hours in the NICU was better than possibly losing her if we had waited longer to induce.
 |
| Kate on the day she was born |
 |
| Livia being monitored in the Nursery. |
But here is the scary part:
Everything I went through was with proper treatment. I never had to fight my healthcare providers for diagnosis or proper treatment. Early induction was a given--I didn't have to fight for that either.
There are many women who have to fight their providers about SOMETHING related to cholestasis, whether it be diagnosis, treatment, and sometimes even early induction. Or else their doctors tell them that itching is normal and they are crazy (this happened to a college friend of mine who I helped get diagnosed).
I am grateful every day that I never had to fight for diagnosis, treatment, or induction. I even remember telling the midwife who ordered my tests with Livia about some providers not taking this seriously, and she was shocked. "We take cholestasis VERY seriously at this practice!" she exclaimed.
"Laura, you talk about this too much."
Yes, I do talk about this a lot. The reason I am so passionate about spreading awareness is because there are still healthcare providers who are ignorant about this--saying nothing of the general public. People have a general idea of what preeclampsia and gestational diabetes are, but when you say you have intense itching...they sometimes start asking, "Is it your blood pressure?" or "Do you have to go on bed rest?"
Another reason I am passionate about this is because my particular case of cholestasis is the result of genetics. I am a third generation Itchy Mom, but the first in my family to be diagnosed and treated. We got the dominant form of the gene, which means I have passed this down to Kate and Livia. It is my hope and prayer that by the time they reach childbearing age, more will be known about cholestasis and even more can be done for it.
 |
| They are worth every last itch |
For more information, check out icpcare.org
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