ICP Awareness Day: My Story

Today, June 10th, is Intrahepatic Cholestasis of Pregnancy (ICP) Awareness Day (also known as Cholestasis of Pregnancy, or Obstetric Cholestasis). For those of you who aren’t aware, ICP is a very rare complication of pregnancy that usually presents in the 3rd trimester, characterized by widespread, severe itching that is often more intense at night—the only “cure” is giving birth, and symptoms often resolve shortly thereafter. But without proper intervention and treatment, some babies don’t make it that far.

Basically, the liver isn’t processing Bile Acids well, which causes an increased presence of those Bile Acids in the blood, hence the itching. It is often so intense that women experience insomnia, or resort to scratching their skin off to the point of bruising, bleeding, or even scarring. Although itching is the primary side effect, the implications for the baby are very dangerous: there is a significantly higher risk of stillbirth, especially in late gestation (after 38 weeks). Intervention, treatment, and early delivery  can make all the difference.

Because many doctors dismiss the itching as a “normal” pregnancy symptom, diagnosis can be a painful, arduous process. Personally, I was told repeatedly that the itching was probably my  “hormones” or my “skin stretching.” Fortunately, I was persistent and my doctor gave me a simple blood test to test for the presence of Bile Acids and elevated liver enzymes. She was “shocked” that the test confirmed my diagnosis at only 16 weeks, and told me that she’s never had a patient with ICP prior to 35 weeks (not comforting! But cases have been confirmed as early as 8 weeks). At 44, my Bile Acid (BA) levels were 4x the normal limit. But please note: the itching can be present for many weeks before blood tests show any elevation, so levels in the normal range do not necessarily mean a woman isn’t suffering from ICP. Some women aren’t even diagnosed until after they give birth! It is very important to get on the proper medication (Ursodiol)  in order to protect the baby from the Bile Acids and increased risk of stillbirth. Also, it’s important to note that there’s a higher incidence amongst women pregnant with multiples, who are of Hispanic or Scandinavian descent, or who already have compromised livers. The recurrence  rate in subsequent pregnancies is as high as 80%.

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My severe bruising. ICP can cause a Vitamin K deficiency that can lead to hemorrhage after birth.

For me, and probably most women, it was a very scary diagnosis. I felt like I couldn’t be excited anymore: not only could we lose the baby, but it meant I was looking at enduring 5 more MONTHS of the itching [insert expletives here]. Due to the unusually extended duration of Baby Boy’s exposure to ICP (a full 20 weeks), I’m being induced at 36 weeks, but induction before 38 weeks is standard practice. Now, I did not have ICP during my first pregnancy, and let me tell you: there is a HUGE difference between “normal” itching and ICP itching. Before I scratch, I literally have to look at my skin to make sure that I’m not being bitten by a fire ant or mosquito. It’s BAD. I have scratched myself with everything from a hairbrush or comb, to utensils, keys, dog bones, etc. Are those painful? Sometimes, yes. But honestly, the pain feels better than the itch. Anti-histamines don’t work, because the itching is caused internally (not in the skin), so there’s really not a lot that can be done for relief. If you are diagnosed with this, you’ll likely hear, “There’s NOTHING they can do for you?” Nope. Not really. They can protect the baby with the medication Ursodiol (Actigall), but for many women it doesn’t help with the itching.

I scratched my skin off.

 

Anyhow, my doc has been consulting with a Maternal Fetal Medicine specialist at the high-risk Perinatal Clinic here in Madison, WI. Currently, Baby Boy is being monitored by bi-weekly heart tone visits and monthly growth scan ultrasounds in addition to my regular check-ups. Starting at 32 weeks, I’ll have Non-Stress Tests (NST’s) 2x per week, a weekly fluid-check ultrasound, and 1 regular check-up. That’s 4+ visits a week! I’m gonna be a busy girl. For medication, I am on a treatment plan of 600mg of Ursodiol 2x/day, but it hasn’t helped get my BA levels (or my itching) under control. Now my Bile Acids are 5x normal, as of 25 weeks, and the specialists are “stumped” (again, not pleasant to hear). I’ll keep everyone posted on that. I’m also taking 2 Ambien per night to get ANY sleep, and I really hate taking anything unnecessary so you know I’m desperate.

Here on my blog, I have really tried not to mention my diagnosis of ICP lately, or how much it has affected my life for the past 10 weeks. Honestly, it has consumed my days. I am constantly uncomfortable, and during the past week the itching has spread to my face. I just want to claw myself! And I really don’t want to talk about it. It’s unpleasant and depressing, and the thought of 10 more weeks makes me sick—so I try to stay positive on here. The ICP Care/Itchy Moms Facebook Group has seriously been a godsend, and I don’t have enough positive things to say about that group of ladies. The moderators are SO knowledgeable, and the women are kind, sympathetic, and more than willing to offer advice. If you, or any woman you know has ICP, I can’t recommend that group enough. Their website ICP Care.org has tons of resources (links to scholarly articles, etc) that you can bring to your doctor or midwife if you are fighting for a diagnosis.

For any woman experiencing ICP, I highly recommend Sarna lotion (I found it at Walgreens) or the Gold Bond Anti-itch lotion in the green bottle. It smells a little strong, but it makes my skin so cold I can barely feel the itch. I also have a nighttime routine of a hot bath, followed by air-drying under our ceiling fan. I also enjoy cool showers (start warm & gradually move to cool/cold). If the soles of your feet or palms are the primary itchy spots, I’ve heard that ice-packs feel amazing. Anecdotally, I find that a low-fat diet helps—probably because it places less stress on the liver. And be sure to stay hydrated, ICP can cause appetite loss & you might not feel like eating or drinking. I was hospitalized for dehydration at 25 weeks, and it began causing contractions & pre-term labor, which fortunately never progressed.

So that’s my experience with ICP as of now. I have 10 weeks left. It’s a horrible, uncomfortable, scary, and sometimes deadly diagnosis. My biggest advice for any woman is: KNOW YOUR BODY. This level of itching is not normal. “Normal” pregnancy itching does not disturb your sleep or make you scratch yourself bloody. If you’re “googling” it, it’s probably ICP. And BE PERSISTENT about your care and treatment. Doctors can be incredibly ignorant about ICP, and they have multiple patients—if you think you have ICP, you are the best advocate for you & your baby. If you are a friend or family member of someone who is currently enduring an ICP pregnancy, she is not exaggerating—YES, it is truly that awful. So do her a favor and buy her a bottle of lotion—that stuff gets expensive.

UPDATE: I was induced with our son, Bennett Alexander, on August 5th, 2013 at 34 weeks + 2 days (here is how the timeline went). He was born the next day at a very healthy 5 lbs 10 oz, breathing on his own and regulating his own body temperature. I had a steroid shot for lung development for 2 consecutive days leading up to my induction. He had difficulty eating, so he was in the NICU 3 weeks. I even did his newborn photos while he was there, and took some pics of his room. He was stable, but being separated from my newborn was the longest 3 weeks of my life (I vented in this post). If you can make it to 37 weeks, DO IT. I was just so miserable I genuinely couldn’t endure another day. But Bennett is a thriving, happy 6-month-old now! As for the itching, it was 65% better within 1 day of delivery. I was still glad that I brought my Sarna lotion to the hospital, though. I would say it took 2 months to completely resolve (for me), but it was much better (80%) after the first week. I’ve also been experiencing “Cyclical Itching,” caused by hormones during my lady-cycle, around the time of ovulation and a few days leading up to Shark Week (aka: my period). It sucks, but the itching is nowhere near as bad as during pregnancy. It is suggested that women who have experienced ICP do NOT use hormonal forms of birth control, I’ve previously used the Paragard IUD (non-hormonal), and thought it was great. Best of luck to any ladies out there currently enduring this condition. I truly know how horrible it is, please feel free to email me and definitely check out that Facebook Group for Itchy Moms/ICP Care.

Angie @ Pint of Goals - June 10, 2013 - 10:25 am

Thanks for writing about this condition and your experience! I can’t imagine how difficult it must be to be uncomfortable (at a loss for the right word) physically and mentally. Did you post this to the ICP’s Facebook page too? When I was dealing with my non-hernia, varicose vein issue, all I wanted was to read about other women’s experiences with it. Your post will definitely help ladies out there!

Kate Pinkston - June 10, 2013 - 10:27 am

Great entry, Nicole! I am SO impressed with how calm and positive you’ve been through all of this. You’re amazing!!

Annie - June 10, 2013 - 11:15 am

Great post! I too went to doctors in Madison – which specialists/doctors are you seeing specifically? The clinic I went to said I was one of the few ICP cases they had (so rare that my 2nd baby was the only case they had since my 1st baby). So glad you are getting the monitoring you need, because it CAN be really scary. I was right there at 4+ visits per week as well, but as mommas we do what it takes to make sure our babies are safe! Good luck!

Annie - June 10, 2013 - 11:20 am

Oh, and I used to scratch myself with the following:
a pumice stone
a pedicure brush
I would rub the bottoms of my feet on the carpet or concrete (ouch!) The concrete was the final straw in realizing something was really, really wrong & that it wasn’t a ‘normal’ kind of itch. I was diagnosed with baby #1 at 36 weeks 2 days and was emergency induced the next day. Talk about scary!

Betty - June 10, 2013 - 12:27 pm

What a great post! I can totally relate! I endured 2 pregnancy’s with ICP. Back then, (26/24 years ago), the doctors only knew that the itching came from a liver dysfunction, but
‘it’ never had a name. It is actually a hereditary disease. My mother had the same, my sister, cousins and aunts all had the same thing with their pregnancy’s.
It really is great to have a day of awareness for this condition and I hope many people hear about it. I linked to your blog on my fb page.

Nicole | Life So Lovely - June 10, 2013 - 12:46 pm

Thanks Annie! I’m seeing Dr. Stewart at the Meriter Perinatal Clinic. I’m very grateful I was taken seriously from the beginning (mostly), but I wish they could give me more relief!

Nicole | Life So Lovely - June 10, 2013 - 12:57 pm

Annie, I’ve used concrete too! I actually gave myself a burn on my ankle from scratching so hard/fast/long that my skin came off. Sometimes the pain is better than the itch.

Nicole | Life So Lovely - June 10, 2013 - 12:58 pm

Thanks so much! Hopefully we can raise awareness and help some more women out there! Mine isn’t hereditary, but I have a chronic liver condition that predisposed me to it (apparently). Thank GOODNESS we only wanted 2 kids. ;)

Andrea McConnel - March 14, 2014 - 3:12 am

Thank you for your insightful and well balanced blog entry! It’s such a fine line explaining to people how scary this condition is and how mentally draining you feel, when you look physically ok from the outside! I too have just been diagnosed early at 18 weeks and there is such limited info about early ICP diagnosis!
Thank you thank you, I’ve shared your insights with family and friends so they can getter understand what ICP means beyond the scientific ;)

Nicole | Life So Lovely - March 16, 2014 - 9:36 am

So happy I could help in any way! It’s such a difficult diagnosis, and so physically unbearable even though you look “fine.” I can honestly say I know what you’re going through, and I’m sorry you have to deal with it. Stock up on the Sarna and don’t be afraid to ask for Ambien so you can sleep. It’s important to get the rest you need. And Sarna is seriously great, I hope you get some relief. I see you joined the Facebook group, those ladies are wonderful and will answer any questions you have!

julia - January 11, 2015 - 7:28 pm

Thank you for writing this! I am 34 weeks and the past week I have been very itchy each night. I really hope it isnt icp,but will push for liver testing at my appointment this week.

Nicole | Life So Lovely - January 14, 2015 - 9:49 am

Definitely push for testing Julia, the labs take awhile to process! I also HIGHLY recommend checking out the ICP care page on Facebook if you haven’t already, very knowledgeable ladies!

Vicky - June 11, 2015 - 11:34 am

Thank you so much for your candid description of what you went through. I am at 17 weeks and I’ve been itchy for the past 3 weeks. It seems to be getting worse. It’s mostly my ankles but also a few other places. I’ve been scratching my skin to the point of bleeding almost every night. I googled it to see what if any medication I’m allowed to take while pregnant, and that’s when I stumbled onto the description of ICP. I also have no appetite, and I’ve been losing weight, and that was mentioned as a possible symptom of ICP as well. I met with my midwife last night, and she ordered the blood tests for me. Luckily she has seen this condition before, so she took me seriously right away. I really hope I don’t have ICP, but if it turns out that I do have it, I hope it’s not too early for the tests to show it. I hear the sooner you can take the medication, the better it will be for your baby.

Nicole | Life So Lovely - June 12, 2015 - 6:43 pm

My heart hurts just hearing that! Seriously, get on the ICP Facebook group if you haven’t already. It’s a great place to vent, as well as ask questions. Be sure to ask for Ambien if your sleeping becomes too broken…I was always a lot less itchy (and less stressed!) when I was well-rested.