Everyone always seems to get that "pregnancy itch". The one that drives you crazy. It comes with dry skin and itching often as your belly stretches for your baby and your bodies hormones change throughout pregnancy. Well...... sometimes that itch isn't just a normal "pregnancy itch".
Intraheptic Cholestasis of Pregnancy also known as ICP is a condition that is not known to many. Most Drs and healthcare professionals are unaware of it or know about it but not much. It effects roughly 1-1000 pregnancies and is very high risk. If you are diagnosed with ICP it is usually in your third trimester and late enough in that trimester that your baby will be on the way within days of the diagnosis. 80% of women who are diagnosed with ICP are in their third trimester, 10% in the second and 10% in the first. It usually only presents with an itch, sometimes mild and other times severe. Usually on your hands and feet but not always, it can also be whole body, arms, legs or in places you didn't even know could itch. Many women get told "oh it's just a pregnancy itch take Benadryl or put cream on it" or they get misdiagnosed with PUPPS. ICP is a rare condition that is genetically determined for you. The key to safe ICP pregnancy is the proper treatment. Medication, Monitoring, and Early delivery.
So here is the beginning of my story.
At about 14 weeks pregnant with my beautiful second rainbow baby I started having this weird and very intense itch that was just on my legs, from my knees down. I would scratch my legs so bad they would rash and hurt. But it wasn't consistent sometimes it went away. I never thought anything of it until one night around 18 weeks pregnant I was having a bath and it this itch was so bad I didn't know what to do with myself. So being in an amazing group of Doulas I reached out for some support and one of my fellow Doula friends informed me of ICP. SO I did some research.............. ALOT OF RESEARCH....... Once I started I couldn't stop. The next day I called my midwife and told her what was going on and she (with no prompting from me) said "I'm going to send you to an OB to be checked for Cholestasis". BAM! My heart sank like a ship. I wanted to vomit. She then said, "it’s much to early and I don't think you would have it but just in case". So over the Christmas holiday it was filled with many appointments and blood tests etc. The OB ruled out other options first because he to thought your way to early on for ICP so I shouldn't be that. Once he ruled out 3 other possibilities and my itch went from my legs to my WHOLE ENTIRE body within a matter of 3 days he immediately put me the medication called URSO that is for Cholestasis and did blood tests. Usually these blood test take weeks to come back and by then you've usually had your baby, around here they rarely do the blood tests when you have the symptoms because they take so long to get back and by that time the risk to your baby is much to high and women are in their third trimester. BUT.... I was only now 20 weeks at this point. Anyway my blood test (someone was looking over me) came back with in 48 hours and BAM there it was I tested positive for ICP my Bile Acid levels were elevated. I felt over the few weeks before the actual tests got done and the results came in that the diagnosis was coming ALL the signs pointed toward it but when the actual diagnosis got made man was that a different feeling. I was beside myself. SCARED SHITLESS to say the least.
My OB had asked me at an earlier appointment about my pregnancy and birth with my son and with the complications that happened at 39 weeks with him he made the connection that I likely went undiagnosed with ICP in my pregnancy with my first son and this is why I stopped producing amniotic fluid well before 39 weeks when I had non left and was emergently induced and looking back had a mild but not alarming itch through that pregnancy.
After the diagnosis came and really sank in life changed. For me anyway. I now felt like a risk to my baby everyday. My body has a genetic dysfunction that has caused me to have ICP and now I'm a risk to my baby everyday. The mental game this plays on you is EXHAUSTING. Keeping positive is hard when all you can think about are the risks. And not only was I diagnosed at 20 weeks I had another 20 weeks to think about it. To dwell in it. To worry about it. Turns out I only had 16 weeks because the baby has to come early but still 16 WEEKS is a long time to be afraid your going to lose your baby at a higher risk than normal for so many complications. Like that’s a normal pregnancy worry and now my chances are higher like give me a break. I just lost a baby; I couldn't even get my head around that possibility being higher. UGH.
So my journey over the last 2 months has been a steep ride. Ups and downs. I feel good, I feel bad. Im ok and then I'm not.
Here is the truth.
+ The medication your on the is what protects your baby **this is its main function. TO PROTECT YOUR BABY** is amazing for that reason and I am thankful their is something that is protecting my baby because clearly I am unable. Some people say "oh good the meds will take away you itch" ugh like seriously thats the least of my worries. In some women it takes away or helps with the symptom is itching BUT it does not help everyone, sometimes it makes it worse or does nothing for you. BUT it is helping protect your baby and that’s what matters. I am thankful that the medication has helped me and taken the itch from unreal to bearable and just irritating. But I am most thankful that it is protecting my baby.
+ The itch can be unbearable, so severe that you can think, eat or sleep through it. You think labour is bad. This itch is indescribable and there is nothing like it. Once you've had this itch you know. You have a 60-90% chance of having ICP in subsequent pregnancies and your symptoms can show WAY before your Bile Acids rise high enough for diagnosis. But once you've had this itch you know.
+ The other symptoms that can be associated with ICP like pale stool, dark urine, fatigue and Right Upper Quadrant pain happen but again not to everyone. I have all of these things. The RUQ pain is the worst. It is so painful and uncomfortable that sometimes it hard to function, but I do because I have a son that needs me and a hubby I love and want to be there for. Sometimes its hard to breathe, you can't sit or stand because it hurts like hell.
+ Fatigue is a struggle. Sometimes I can't even keep my eyes open but I have to. It can be a symptom of ICP but it is also a symptom of the medication your on. The meds can make you feel weird, tiered and have a VERY upset stomach. Pooping is like one end of the spectrum to the other you either can't for the life of you or you shit so much you loose 10 lbs. and both of those options hurt like non other. A few times I've actually though I could be in labour but when it was over it all went away.
+ The mental game is rough. You are scared beyond this world all the time. You never know what’s going to happen or could happen. All you do is worry. Your risks for stillbirth, meconium standing, preeclampsia, haemorrhaging, preterm labour and more are so much higher and even though they keep you under close watch sometimes that’s not enough to keep you stable. But again I do my best because I need to be ok for my family, for my baby. I have never cherished the movement of my baby so much. The things we take for granted sometimes..... This is my last baby, my last pregnancy and sometimes its hard to enjoy through all the stress and sometimes I feel robbed of that joy because I am one of the "weird ones" as people call me that loves being pregnant. This time around is a whole new ball game.
+ When people say to you "oh just take Benadryl or put cream on it", "oh good the meds will take away the itch then", "are you sure it isn't PUPPS or just an itch", "everything will be just fine", "at least .... at least..... at least...." those things don't help. They drive you bonkers because almost always the Benadryl and anything topical does NOTHING for you, you have bile acids in your blood stream which react with a different chemical in your body that creates the one that makes you itchy and for the most part if the URSO doesn't help nothing does. I wish people would just ask questions about it so I can tell them about it. And they didn't just assume they get it.
+ Having your baby come early seems scary to many people. But for me its not. It’s scary to have my baby inside me. Sometimes I feel like the harm I’m causing inside is so much worse than the support he can have on the outside. Ugh. It’s such a torn and awful feeling. Like which is the lesser evil here. Why do we have to be put in this position to choose? #lifeanteasy
+ Appointments. You have so many appointments you feel like your part of the furniture in the DR office and or hospital. Awesome that they are taking care of you but still a shitty feeling to have.
+ MOST PEOPLE HAVE NO IDEA WHAT YOU’RE GOING THROUGH OR WHAT ICP EVEN IS.
Thank god I was able to find and amazing support group on social media of moms around the world who are also going through this. Because lets be honest NO ONE gets it but someone who is going through it and that’s the same for any condition or situation in life.
ICP is a rare diagnosis on its own and to have it before your third trimester is unheard of in this area and in most. My OB informed my at my appointment Thursday and so did my midwife that they have never in the 37+ YEARS of either of them practicing seen anyone with ICP this early or prior to 34-39 weeks when they are just taking the baby right away because of the risks. Yup that statement makes you feel good... NOT. Makes you even more scared than before. But I am extremely thankful that they are both very supportive and listen to everything I now know about it and the recommendations made by the ICP Care organization (www.icpcare.org) and the research thats been done on treatment and delivery for the diagnosis.
+ Making a plan for treatment gives you peace in some capacity. Allows you to have some kind of control during the process. But not really. I found myself so lost in everything that in the begging of our pregnancy we didn't want to know the gender of our baby. By the time we went for our 5th ultrasound at 22 weeks I was so mentally drained that all I wanted was some control or connection back so we decided to find out that we are expecting baby BOY! #momofboys and I am SO GLAD we did. That has been the main thing that has given me peace and connection through this pregnancy. Knowing that we will be bringing a beautiful baby boy into the world much earlier than expected. #myitchybaby
Everyday is a struggle. Whether its pain, discomfort, itching or being scared but WE ARE STRONG MAMAS and we can get through it. Even with all the added crazy I am thankful everyday that my baby boy is ok and even though I am apposing to be a risk to him, he is doing great to this point and I feel like he will be just fine in there until he decides or we decided he needs to come out! But that still doesn't stop the worry or the fear.
There is a saying "you just mom it" some days I feel like this is so true. I don't know how we do it but we do, we aren't really given a choice to not to, so we just mom it. Our instincts just kick in and we make it, we do it, we live it and we rock it. But we should never be afraid to reach out for support when we need it! We might be awesome but we are only human and we have a breaking point just like everyone else. So reach out, ask for support, lean on someone and it will get better, it will end and it will all be worth it.
This is just my journey so far. Every mom who has ICP experiences it differently.
Guidelines for diagnosis are different everywhere, most Drs and health care professionals have no idea what ICP is or know little about it and its a struggle for some women to advocate for themselves and their babies, everyone symptoms present different and medication effects everyone differently. Some women with ICP suffer loss, pain or mental struggles (and so much more) but the thing we have in common is we all have ICP and it is a serious condition that is very unknown.
Symptoms of ICP:
The most commonly reported symptom of Intrahepatic Cholestasis of Pregnancy is moderate to severe itching, and in many cases it is the only symptom reported. The itching can vary greatly from one affected woman to another, and it is important the remember that there really is no such thing as typical Intrahepatic Cholestasis of Pregnancy. Some presentations are more common than others, however.
While most women only report itching as a symptom in their ICP pregnancy, there are other symptoms which may occur.
Right Upper Quadrant Pain (RUQ pain)
Intrahepatic Cholestasis of Pregnancy sometimes causes pain in the area of the liver. The liver itself does not have nerve endings that sense pain, but the gall bladder, bile ducts, and a capsule surrounding the liver can sense pain. This pain is most commonly felt under the ribs on the right side. Less commonly the pain can be felt radiating to a spot in the back beneath the tip of the right shoulder blade. RUQ pain is not commonly reported because it is often mistaken for pain from the baby pushing against the ribs. This pain can vary. Some women feel a dull throbbing pain, others a sharp stabbing pain. For some women the pain has been described as debilitating, however it is important to remember that most women with ICP will not feel pain in the area around their livers. RUQ pain can be caused by many things other than Intrahepatic Cholestasis of Pregnancy, and it should always be discussed with your doctor.
There are many biochemical changes which take place in the body during Intrahepatic Cholestasis of Pregnancy. These sometimes cause the urine to become dark. Dark urine may range in color from apple juice-colored to dark brown. This can happen even when water intake is adequate.
Under normal circumstances, bile gives the stool its distinctive color. In some ICP pregnancies, the flow of bile is so thoroughly disrupted that stool appears pale gray, or clay-colored.
Nausea/lack of appetite
Some women with Intrahepatic Cholestasis of Pregnancy find it difficult to eat due to a severe loss of appetite. It can be difficult or even impossible to force down enough food to maintain adequate weight gain. Some women even lose weight despite their best efforts. Others have nausea and/or vomiting.
While it is normal to feel tired during pregnancy, fatigue related to Intrahepatic Cholestasis of Pregnancy can be extreme due to the important role the liver plays in many metabolic processes. This fatigue can be exacerbated due to stress and lack of sleep.
It is uncommon to develop jaundice with Intrahepatic Cholestasis of Pregnancy. It is estimated that 10% or less of women affected by ICP will become jaundiced. However, if you notice a pale yellow color to the skin and/or eyes, seek medical attention.
Mild depression may develop as a result of biochemical changes in the body, hormonal changes, lack of sleep, and/or the inability to escape the itch. Please discuss any depressive thoughts or feelings with your doctor immediately.
(symptoms reference taken right from www.icpcare.org)
Symptoms of URSO:
-Diarrhea or constipation
Some women also feel very fatigued, whole body weirdness, stomach pain and more. These are just some of the symptoms that may occur but not all.
(reference for URSO symptoms taken from WebMD)
Please help me raise awareness for Intraheptic Cholestasis of Pregnancy. Fight the itch. Save a life.
If you would like to educate yourself on ICP please visit www.icpcare.org for more information and education.