Welcome to ICP Care 501c3 nonprofit charity a resource for those affected by Intrahepatic Cholestasis of Pregnancy (ICP). Our mission is to connect, support, educate and empower those affected by (ICP). Visit our website for additional information www.icpcare.org
ICP Care is determined to help pregnant people who experience Intrahepatic Cholestasis of Pregnancy to deliver healthy babies. ICP Care’s mission is to provide patient support and education, raise public awareness, support the advancement of research and improve health care practices.
We do this by raising awareness of the condition, distributing educational materials for patients and medical professionals, and creating a supportive community for friends and families of anyone affected by ICP. We hope that, one day, all medical professionals and staff will know the proper protocol for treating Intrahepatic Cholestasis of Pregnancy, resulting in less suffering and healthier ICP babies.
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Thank you ❤
I live in Georgia as well not too far from loganville and I have ICP but I got diagnosed at 20 weeks
I was recently diagnosed at 30 weeks and I got my test results within one day after the labs
Thank you for spreading awareness for ICP! I wanted one more baby but I have two and through because of this. I could have lost my kids but I was sent out to have them early with induction. I hated the itching and taking the ursodial. The ursodial didn't really help because I was still itchy. I had it worse with my last born because of ICP and Pre-eclampsia of pregnancy. I'm so sorry for this but thank you again for spreading awareness.
Me and my wife going through this right now thank you all for sharing.
I had icp soooo bad, worst case Dr's had ever seen,so bad they blew it off as not being cholestasis because it was head to toe,face to bottoms of my feet, I was covered. It was horrible! They ended up not actually catching it until I was 39 weeks even though I had gone in at 37 weeks to be seen for this and when they did my Labs at 39 weeks as soon as they got my labs back they set me up to be induced the next day. I am so thankful my daughter was born healthy . I tried getting them to test me multiple times and they didn't believe me. When I went back a 3rd time my husband came with me, he told them this is not normal and that I was awake all night ripping my skin apart and that it wasn't just stretching skin. With my first pregnancy I had PUPPP rash, also head to toe itchy, only not harmful to baby. I haven't met anyone else who had cholestasis as bad as I did. Many just have it on hands and feet and sometimes their belly. I feel like cholestasis is not talked about enough, I didn't see any videos about it back when I had it 8 years ago. I was terrified of a still birth the whole time and I was so angry at the doctors for not believing me when I told them what I had wasn't normal. Your story is so sad, I'm sorry this happened! I was soo scared I would get it again with my 3rd pregnancy and I was seeing a high risk doctor as well to keep an eye on me and baby to be sure I didn't get it again because it's actually more likely once youve had it before and knowing I had PUPPP the first time I felt like I was doomed to get some sort of dash or itching disease with every pregnancy. But I absolutely agree, so many doctors just don't know what ICP is, I stumped a lot of doctors before they figured it out and it took them weeks. I could of easily been in the same situation. I consider myself lucky everyday to of had a healthy baby.
I noticed itchiness at 33 weeks pregnant and I thought "it's gotta be either bacterial or something wrong with my blood" (it was so insatiable!!). So I told my doc and they got me tested and diagnosed. I am so glad that I got diagnosed early. My OB has my back and we made a plan today to induce labor at 37 weeks. I'm so glad that we didn't go with a midwife. My OB is so on top of things- incredibly capable. I'm new to this community but I am so glad that it exists because its so few of us who experience it. Stillbirth is so scary. Thanks Emily for sharing your story. It means a lot to me.
I’m over 35 and I’m 32 weeks pregnant. I just started noticing a lot of itching of my hands and feet today so hoping it’s nothing but wanting to get tested to be sure. This is my third. Last one was a homebirth and have been planning another.
What was the result?
@@Scarlett_84 no cholystasis! I was allergic to echinacea I took in an attempt to get over a head cold. I had my home birth May 18th 💕
I’ve been itching like crazy this weekend. Waiting to hear back from my midwife tomorrow. I’m so nervous.
I’m so sorry for your loss! I was diagnosed with icp at 9weeks and I’ve been trying to find someone who has had a similar experience but still haven’t found anyone who had icp this early. If anyone has any insight for me I would love to hear it! This is also my first pregnancy.
Thank you for sharing. You are not alone. Please join our support group to connect with other Cholestasis of Pregnancy Moms and members of our community. icpcare.org/icp-community/support-groups/
Hey, what's the update? How are you doing? What is happening with your bile acid levels? Sorry if this is um.... invasive.
I am diagnosed this at 16 week..I am really scared now.
@@pranali17how are you?
Omg...I'm so sorry for your loss. I'm currently pregnant 36 weeks and they are monitoring me for this..
Thank you for sharing.
@@icpcareI ended up getting preemclamsia and cholestesis. They induced me with the balloon. They gave me pitocin and magnesium and then did an emergency C-section. The baby also pooped inside me.
@@Neutrallover08how many weeks are you? And they did not try to do epidural to deliver the baby normally? Please let me know your experience
@@Random-gw1skOn Dec 13, I went to a routine and was told I had to be induced due to preemclamsia. They did the balloon to induce me. No epidural until 30 minutes before emergency csection. They gave me magnesium.
Thank you for sharing with us! I'm so sorry that you lost your baby girl. My daughter just developed this condition. We are praying for God to protect our first grandchild. I'm glad God blessed you with more children. God bless you!
Thank you for this video! So sorry for your loss. My daughter has this and we are very worried.
Emily is a dear friend of mine, and we both were expecting our first child, both daughters, at the same time. Hearing about her losing her daughter when I was days away from hopefully bringing my own daughter home, was something I will never forget. Each year that my daughter has a birthday, it is a painful reminder of how hers isn't here to celebrate one too. I'm grateful for the knowledge Emily has now and the courage she has to share her story! We will never forget Addison 💜
Also to add to be wary of hormonal based birth control in the future. That’s what my obgyn has brought up
Thank you for your comment. Please read our After Pregnancy page here regarding birth control icpcare.org/intrahepatic-cholestasis-pregnancy/after-pregnancy-intrahepatic-cholestasis/
So helpful!
I was brushed aside when I kept going in about all of my symptoms. I went into premature labour at 31 weeks and had my baby. Spent 5 weeks in the NICU. I don't know why they couldn't just give me a blood test. Push hard girls when you know something isn't right.
Thank you for sharing your experience.
Ihad icp With my son I had to have a c-section at 37weeks and I’m pregnant again and think i have it again 😕 I been itchy for 3days now
Thank you for sharing. Cholestasis of Pregnancy has as high as 90% recurrence rate.icpcare.org/
I have cholestasis. I caught it myself. My doctor was not listening to me and didnt even want to test my bile acid levels. I went to ER. Forced them to do the test! It took them 7 days to the results. I have cholestasis and im going to be giving birth in couple of days.
Thank you for sharing your experience. Great job at being an advocate for you and your baby.
I'm 31 weeks pregnant and fully disturbed with it. It started in my second trimester. My bile acid was 155 .
How did everything go? My bikes are pretty high too and I am not even that for along the pregnancy :(
@@mahajones5583 gave birth early. Second day of 35th week. My baby was weak but she's fine now
@@mahajones5583 my condition was really bad bile acid 155 and in lfts all of my points were too high. I had cholestasis of pregnancy. I had to take silymarin 200 mg 2 times a day and urso 3 times a day. Still Itching was really bad. Sweets made my itching worsen
@@mahajones5583 I'm here if you want to ask anything
@ism7863 Thank you for sharing.
I got cholestasis really early, at the end of my 1st trimester (20th pregnany). And just delivered my stillborn 20 week old son. I got ursodial and baby asprin pretty early. Nicholas still died.💔 I last heard his heartbeat on Tuesday a little over a week ago and found out he had passed 1 week ago.
Deeply sorry for your loss.
We are deeply sorry to know of your son Nicholas's passing away.
My wife have it , i am scared i will lose my son
How many day... itching stop after delivery
For me it stopped right after I delivered
In my case..it take 6 months after delivery
10 days before I deliver a baby boy in 31 week..bt itching still continues...
I m suffering with same ... problem dear...
Thanks for sharing. I lost my son too in Aug this year. I was on medication and bile acid values came down but I still lost him in week 33. ICP is cruel.
Deeply sorry for your loss. We are here to support you.
Hi Please tell about the use of Rifampicin with Ursodiol for Cholestasis of pregnancy.
Thank you for your comment. Please review our treatments page icpcare.org/intrahepatic-cholestasis-pregnancy/treatment/
So so sorry 😞 im experiencing the fear of possible stillbirth now, waiting on my bile levels to come back I'm 36 weeks 5 days & hoping i can be induced this coming week bc I'm just freaking out
Thank you for sharing. You are not alone. ICP Care has resources and support groups.
I started week 13… 😞
25 weeks here 🙏🏼
14 week here. How did things turn out for you? I am so scared for my baby. I rather be the one being harmed & not have to share the agony.
@@nm6857 You are not alone. We have support groups here is the link in case you are not a part of our group yet facebook.com/groups/ICPCare/. Here are helpful self helps for the itching. icpcare.org/managing-symptoms/
This is so sad. I’m so sorry you had to go through that and lose your little one.
Nice initiative.. my wife started feeling itching around week 22... itching bit severe on days moves.. when we consulted doctor no proper response..so we Googled and came to know the blood work to be done and tested liver and bile acid test..seems initial bile acid level shows 11 (which is beyond the normal range of 0-10), sgpt sgot levels are also high.we worried and consulted doctor and started medication now...now we are in 27th week..things are moving with the positive hope..most of ICP stories says they had symptom around 30,32 34 etc..but ours syarted super early...much worrying
My itching began at week 14. Going to see a MFM soon. Everyone always comments that they began at week 30 & it seems rare to start so early :(
Thank you for sharing!
Thanks for sharing
I am already suffering with icp... watching this cause I can't sleep because of itching
I am already suffering with it, I am 34 week pregnant and really intolerable.... I am dying of itching
Thank you for sharing your experience. We are sorry your itch was intolerable. We have helpful Managing Symptoms pages icpcare.org/managing-symptoms/
In this April I also lost my baby at 36 week because ICP...I live in Hungary (Europe) and here isn't any bile acid testing....from the day of stillbirth I also fight for raising awareness about ICP. It's so hard....
Thank you for sharing your story. We are deeply sorry for your loss due to Cholestasis of Pregnancy! We are here for support and to help with your advocacy efforts.
In the first delivery, I was an ICP patient. I had backpain a month after the first delivery and had a checkup or wear and tear. I'm very thin. Can this come from ICP? My body was weak. Now the second delivary also had symptoms of ICP. Udliv 300 was eaten. Back pain occurs 76 days after 2nd delivery. What are the possible problems after ICP delivery?
Please review our After Pregnancy page here icpcare.org/intrahepatic-cholestasis-pregnancy/after-pregnancy-intrahepatic-cholestasis/
How did your itch feel like
Is it safe to do exercise with ICP?
You can review our pages here for reference icpcare.org/managing-symptoms/
Mine was not that itchy and my bile acid levels were still elevated so we had to induce right away at 37 weeks. I would say to get checked out anytime you have prickly itching whether it’s severe or not. Better to play it safe!
Did yours go away
Thank you for sharing your experience.
My wife is in her 36th week (Today 36-0) pregnancy. She has itching on her foot and palms but it is not daily and not continuous . Doctor said her bile acid test results are slightly elevated . Is this something needs to be worried . Can she wait for another 3 weeks for her labor
The recommendations for delivery can be reviewed in this link www.ajog.org/action/showPdf?pii=S0002-9378%2820%2931284-9 from SMFM. The decision should be with the healthcare provider OB depending on her levels and other factors.
My wife is in her 36th week (Today 36-0) pregnancy. She has itching on her foot and palms but it is not daily and not continuous . Doctor said her bile acid test results are slightly elevated . Is this something needs to be worried . Can she wait for another 3 weeks for her labor
Have you reviewed our helpful diagnosis and treatment flowchart icpcare.org/healthcare-provider/icp-diagnosis-treatment-flowchart/
Good info, what will be the best combination of medication to stop icp
Thank you for your comment. Please review our treatments page icpcare.org/intrahepatic-cholestasis-pregnancy/treatment/
I had cholestasis in my first pregnancy but was only told after my birth of my daughter at 37 weeks the itching became so intense that I went into emerg. My family doctor saw me and I’m not even sure if he ordered the right test. Luckily I saw my OBGYN a few days later and he knew that I needed my bile acids tested. They called him with the results and said they were negative. When he actually got the bloodwork back it was super high. Luckily I had booked myself in to induce with accupunture that day. And had my daughter the morning I was supposed to see my OBGYN. Now I’m 34 weeks pregnant and started getting symptoms at 30 weeks. Got my results back and I have it but it took 3 weeks to get the results of the bile acids! Her baby died over the weekend and it takes 3 weeks to get bloodwork back?! Luckily I see my OBGYN tomorrow and can make a better plan. I think this baby needs to come out early! Hopefully we can wait until 37-38 weeks
Thank you for sharing your story. We have made many attempts to reach out to the large labs here in the USA to help improve the turnaround time of the bile acids blood tests.
Thank you for such an informative content..I am also affected by ICP; currently at 26w..
Thank you for sharing.
My doctor put me on Cholestyramine and hasn’t even gotten my lab work back yet.
I’ll be 26 weeks tomorrow. I’m super worried and scared
@@kaylacarrier6740 Hello Kayla Be sure to connect with ICP Care support groups icpcare.org/icp-community/support-group/ Also Dr. Bonebrake responded to several questions on the Facebook Live here is the link facebook.com/ICPcare/videos/271094920809929
My wife also facing 3rd time icp , this time on 18week ,what we should to do, the itching is very intense, Although using URSO but it could not work.. Please help me someone
😥 oh, she is a warrior!
Indeed a true Cholestasis of Pregnancy warriror!
How do you feel after delivered
Thanks for sharing your story and sorry for your loss. I was diagnosed with ICP just yesterday. Before that, I’ve never heard of this condition. Thanks for spreading awareness.
We are grateful for Ariana's advocacy.
This happened to me.
I am 8 weeks pregnant with my third and around 6 weeks of pregnancy I started having the intense itching. I had not even set up an appt with my obgyn. I called the office and I said look I know Im super early in pregnancy but I am having intense body itching on my feet, hands and chest can I just get medication? I told the nurse I was just worried cause my sister developed it on her last 3 pregnancies and it feels just like her when she had it. The nurse said you can take benadryl but I will pass the msg to the doctor. The next day the doctor called me and said for piece of mind I will order the test and sure enough levels are elevated. She put me on Hydroxizine for anxiety and itchiness and said she will order more tests. The other testings come back with in limits is all she said. She still told me to take hydroxizine but 1 week went by and Now Im getting rash looking all over like if Im getting chicken pox. I call my doctor again and nurse tells me she wants to see me in clinic the next morning. I show her the rash and yeap its cholestasis Rash. She has put in a referral to fetal medicine and starts me on Urosol medication. She tells me she has never seen a case developed at 6 weeks. Now Im terrified to know what the outcomes will be. Obviously I have a long 7 months ahead of me. I dont know what to do. 😔
Oh so sad to hear that how you doing now Hope your doing well
Sabrina Sabri I am currently 3 weeks still Cholestasis in pregnancy having really close f/u and still on meds. I just found out I now have gestational diabetes so we will se. Thank you for asking
Ramona Alvarado it’s my first pregnancy these things really scares me the most I hope that you get threw it and I pray for you and your baby as well everything will be fine .
I'm having the same thing 6 weeks pregnant and the rash and itching is so bad. Thank you for sharing your experience. The info is helping me to see that this is serious and to find a good doctor. Prayers for you and hope you are still doing well. ❤
Sabrina Sabri Im 32 weeks pregnant next week I start getting NSTs twice per week. My cholestasis has been well controlled but now with gestational diabetis. If not one think its other. Thank god baby is getting bigger
it's becoming more common. It happened to me too. I really wonder what's causing it....
I think maybe the increased age women are having babies now. I had two normal pregnancies in my 20's. Then had ICP during my pregnancy in my 30's. Just a thought though.