# Mothers with Obstetric Cholestasis check in!



## Plady (Nov 20, 2001)

(Mods, I'm hoping this can stay here (as opposed to Finding my Tribe) since the information we will hopefully gather is especially important for pregnant women to be aware of.)

I'd like to start off this thread with my story about Obstetric Cholestasis (also known as Intrahepatic Cholestasis of Pregnancy). From there I hope that other mothers who have had or do have this disorder will join in with a discussion of how to treat it, get respectful care and general support for each other.

My story begins with my second pregnancy. My first pregnancy had been happy and more or less comfortable. I had had some problems with high blood pressure but my first daughter was born healthy and well with a midwife at home.

When I found I was pregnant again I returned to the same midwife for my prenatal care again. We were both concerned about preeclampsia and kept a close eye on my blood pressure. Early on in the pregnancy I had problems with anemia, and slight urinary tract infections. I took care of both through diet and though the UTIs were never full-blown they were tenacious. We were all relieved to see that my blood pressure was staying nice and low, well out of the range of concern. This pregnancy was not as comfortable as my first, I assumed it was because I had a four year old to care for too and much less time for myself. I assumed the depression I felt was related to exhaustion which in turn was related to insomnia and that that was all normal. I was also slightly jaundiced, most apparent in my eyes. Why we didn't follow up on this I do not know.

By the last month of the pregnancy there was a much more sinister symptom keeping me awake at night. I was itchy. My palms were especially itchy and I would lie in bed at night rubbing them on the sheets, trying to not to scratch hard enough to make them bleed. My head and legs and belly itched too but as there was no rash I assumed that it was something normal, stretching skin maybe.

I went into labor spontaneously at 39 weeks, a week before my due date. Three days before that we had been to the midwife's clinic for an ultrasound. The midwife and the technician had glowed with confidence that our baby was ready and well. They gave me the thumbs up and told me to be ready any day.

Labor was quick and intense as it had been with my first. The midwife could not find a heartbeat when she tried to check with the Doppler. The gravity of that escaped me however, as the same thing had happened in the quick labor with my first. I was in the tub when my water broke and we all knew immediately that something was wrong. The water turned dark with meconium staining. My midwife looked alarmed but there was no time to discuss it, the baby was crowning and out. As I pushed her out of me into the water everything seemed to move in slow motion. She was not the right color, she was not moving. The midwife swept her into her arms and started mouth to mouth. She swept the tiny mouth for something caught. She rubbed the baby vigorously. She started CPR. I, still in the tub, still attached, looked on helplessly and begged my baby to take a breath. Hurriedly she cut the cord and whisked the baby to the bedroom. I kept calling out, "Breathe baby! Please breathe!" until suddenly it seemed like it had been too long and I was then praying silently to God to take her and keep her safe.

In Mexico, where I live, there is a law that states that the dead must be cremated or buried within 24 hours of death. I knew at the time that we could also have asked for an autopsy but the thought of a stranger cutting up my sweet baby for an answer which we were told was unlikely to be conclusive was more traumatic on that day than my husband and I could bear.

Four months after Wendy died I was up late, reading other mothers' accounts of their stillborn babies. Before Wendy I had no idea how large a community there is, held together online by our common and unbearable loss. That night I happened to read in one account, ". . . the main symptom was itchy hands and feet, if you have this in pregnancy, go to www.itchymoms.com right now! Do not wait!". I followed the link, hardly breathing in my fear and anticipation of what I would find.

What I found was a list of symptoms, all of which I had had during my pregnancy with Wendy. Itching, Dark Urine, Pale Stools, Depression, Jaundice, Loss of Appetite. When the first shockwave of grief and anger and horror had passed from the realization that Wendy's death could have been avoided I called a friend, another midwife who had been at Wendy's birth as my friend and doula. I told her what I had found and she sent me to the lab the next day for blood tests, a general liver panel. I had elevated levels of a number of liver enzymes. It wasn't conclusive of course, four months post-partum, but I am sure.

Since then I have read everything I can find about ICP and everything I have read reconfirms in my mind that this supposedly rare disorder is what killed my daughter. This disorder may be rare but I have found it quite alarming that other women who have the symptoms and suspect ICP find that their concerns are frequently dismissed by doctors. Why this should be so is a mystery to me. I cannot imagine what a doctor or midwife could possibly gain by ignoring their clients' fears, especially when the stakes can be so incredibly high. I hope that by sending you my story I will have some small part in raising awareness and perhaps Wendy's death can serve a part in saving someone else's.

It is now a year since Wendy's birth and I am pregnant again. I pray that this baby will grow safe and secure but I am already taking steps to strengthen my liver and if ICP returns I will not settle for half-hearted care. I am so grateful to Itchymoms.com for providing information and a community of support for all parents who find themselves on this road.

With hopes for healthy mamas and babies,
Penelope


----------



## Llyra (Jan 16, 2005)

Thank you for sharing your story. I am so very sorry for your loss. I hardly know what to say.
********************************

I can't post a long post, because my 2 year old is begging me to come "build a house," but I wanted to add myself to the check-in. I'm 36 weeks with twins, and I was diagnosed with ICP at around 30 weeks. I was very lucky that I happened to mention my itching (intense, all-over, beginning around 28 weeks) on my DDC here at MDC, and somebody pointed me to the itchymoms site. I never would have even mentioned it to my doc.

I was also lucky that my doc was familiar with ICP, took my concerns very seriously, and made a real effort to research exactly what the best management of my case would be. We're expecting to deliver my babies by planned c-section next Friday, at 37 weeks, and I'm feeling confident that all is well.


----------



## mexicomommy (Oct 24, 2005)

I too wanted to share my story. I wrote this several months ago but thought it was appropriate to keep it the way it was. It has been almost 8mo. since the death of our daughter and we are now pregnant again!
Penelope I remember seeing you on the grief forum here. Thanks for starting this post, I certainly hope it can help another mama out there and that our babies deaths will not have been in vain!
Charlsie

I will start from the begining so you can get the full story. Several months ago I became extremly sick. So sick in fact that we got blood and urine tests done. They came back and all our Dr./midwife could tell from them was that I had a virus. We were not too worried until I discovered all of my symptoms linked to an illness called Cholestsis of Pregnancy. One of the risks with this sickness is stillbirth of your baby. I became concerned because I had not felt the baby move as much as normal plus I was itching like crazy which is one of the main symptions of this illness. We had a mission team down at the time so I tried to take it easy as much as possible.

When the team left we prayed and decided that I should head to the states to monitor the baby and just make sure everything was ok. We decided this on a Sunday and I flew out by myself the next day, Monday. On Tues. I had an appointment with my OBGYN. I was admited to the hospital for testing. They looked for a heartbeat but were having trouble finding it. Then they brought in an ultrasound machine. They hooked me up and after a few seconds the technician looked at me and said, "I am so sorry there is no heartbeat." I could not believe that my sweet baby was dead. I started to cry and asked if they were sure. There was also no amniotic fluid. The worst part is that I had just felt her move the day before.

They were very kind and super concerned for me at the hospital.I called Michael and he and I cried over the phone together. He then went to work getting a flight booked for himself and the kids. They were set to arrive that same day at 4pm. I called my wonderful grandmother and she agreed to come pick me up and meet them at the airport. My cousin Annie and her son also came down, they were such a blessing! After the hospital I drove myself to my brothers. I enjoyed the time to myself. I was able to screem and cry all I wanted to.

At one point that day I saw a newborn with his mommy and it took everything in me not to burst into tears. When I saw Michael at the airport we just held each other tight and cried for a few minutes. I was so glad he was able to come so quickly! We had lots of decisions to make and we needed each others support.

We decided that we would be induced and settled on that Fri. the 16th. In between that time we made funeral arraingments and spent quality time with the kids. My worst fear was that someone would ask about my pregnancy, but thank God no one ever did.

Thursday the 15th of June we left the kids with some good friends. It was nice having someone we trused to leave them with. Then we drove to a hotel in San Antonio since we had to be at the hospital early.

When we arrived at the hospital and before they induced me we were told that I had contracted Hepatitis A and that I also had Cholestasis of Pregnancy. The Cholestasis we believe lead to the stillbirth. They then induced me and said it would probably take about 12 hours for the baby to be born since I was only 32 weeks along. We started the process and I was scared to death, I mean I have done natural childbirth with the other two but I was at home and I let it happen naturally, but I had heard so many horror stories about induceing that I was really scared. God was so good to us though, we got a wonderful Christian nurse who printed out information on Hep. A for us, reasured us and was just a true comfort. I was really feeling sorry for whoever had to help us, because no one wants to deliever a dead baby, but she never made us feel badly. The contractions started coming and with in 45 minutes I really had to concentrate through them, I told Michael and the nurse that they felt like transition contractions, but I thought that could not be so since so little time had passed.

We had decided in advance that I would take a sedative for the pain since it would not affect the baby because she was already gone. I asked for the sedative and three minutes afterwards I felt the urge to push, well I told the nurse this but did not think it was real since it had only been an hour since everything had been put into motion. Well she checked and sure enough the baby was ready to be pushed out. I barely pushed 2 times and out she came. I told Michael that through this short labor and easy pushing I really felt that God loved me, I think I had doubted it since the day I had found out our baby had died.

Baby Charlsie Grace, as we decided to call her, was truly beautiful. She was 3lb. 2oz. and 18 in. long. We named her Charlsie after my grandmother and myself. We had decided on that name even before I got pregnant with her. And Grace because it was only by HIS grace that we got through this horrible situtaion. We held her for awhile and then a wonderful lady came in to clean her up and dress her. This sweet lady suffered a loss herself and so now makes it her mission to help out with stillbirths whenever she is on duty. I was so blessed by her act of kindness. I did not think my baby woudl be treated like all the rest but she was, she was cared for, talked to, and made beautiful by this kind woman.

My brother came bearing breakfast taco's, thank you Pete dear! Hospital food really is as bad as they say it is. And my cousin Annie and her son came too. I was so happy for their presence. Michael and I spent some more time with our baby girl, and about 6 hours after she was born we said goodbye to her and went to our hotel. I was glad to be out of the hospital, but I missed our baby girl, my arms ached to hold her.

The next day we went back to Kerrville to get the kids. That Sunday we burried our little girl on top of my grandparents property in Hunt. She is under a tree in a beautiful spot. Michael carried her little white cofine and laid her in her grave, I thought it was fitting since she was daddy's little girl.

We spent the next week doing family things. It was a wonderful time to reconect and spend time together.

We still miss our little girl very much but, God has been faithful in giving us peace and grace, and I do not know how we would have gotten through this time without all of the prayers of our friends and family.
Well I know I have left some parts out and this is very very long but I want it written down for myself and for those who wish to know.
In memory of Charlsie Grace, I love you baby girl!


----------



## pianojazzgirl (Apr 6, 2006)

I'm so sorry for your losses mamas. I'm crying for you.









Thank you for sharing.


----------



## Plady (Nov 20, 2001)

Charlsie,









Llyra - I'm sending prayers for your babies to have a safe delivery.


----------



## mamaonthefarm (Oct 9, 2006)

I'm so sorry for the losses of your babies. Hugs to you.

I had cholestasis with baby #1 (baby survived it), did not have chol. with baby #2, and am 5 mos along with baby #3 (no itching as of this time). I'm doing loads of liver support stuff that I can share if folks want me to. (My chol. was less severe than other mamas' though.)

I have to run to put kids to bed but can post more later. (I also post occasionally on the itchymoms.com site)


----------



## Plady (Nov 20, 2001)

Mamaonthefarm (MotF?) - Please do share the liver support stuff.

I am starting out by taking 3 doses each of Dandelion Root, Yellow Dock and Milk Thistle tinctures. I've also got capsules of the same combination plus burdock for days when I can't stomach the tincture. I'm also trying to cut back on non-natural fats, i.e. shortening, any transfats, vegetable oils other than olive oil. I did just read that safflower oil is easier for the body to digest because it doesn't require so much bile to break it down but I haven't figured out what it is in spanish yet.


----------



## mamaonthefarm (Oct 9, 2006)

Quote:


Originally Posted by *Plady* 
Mamaonthefarm (MotF?) - Please do share the liver support stuff.

I am starting out by taking 3 doses each of Dandelion Root, Yellow Dock and Milk Thistle tinctures. I've also got capsules of the same combination plus burdock for days when I can't stomach the tincture. I'm also trying to cut back on non-natural fats, i.e. shortening, any transfats, vegetable oils other than olive oil. I did just read that safflower oil is easier for the body to digest because it doesn't require so much bile to break it down but I haven't figured out what it is in spanish yet.

Hi!
I do the same first 3 herbs that you mentioned (dr, yd. and mt.) Tinctures. One dropperful or so of each 1 or 2x / day. The biggest thing that I did was change my diet to the "traditional foods" kind of diet. See www.westonaprice.org or the book Nourishing Traditions by Sally Fallon. That way of eating seemed to turn my health around. (Changed diet to traditional foods after having cholestasis with baby #1 and didn't get chol. with 2nd baby)

Every morning, on an empty stomach, I drink juice from small lemon mixed with warm water. That can really help clean up liver.

I drink beet kefir (although have been getting lazy about making it lately so haven't drank it for a while)

Let's see... Along the lines with the www.westonaprice.org way of eating, I strictly don't touch any food that is processed. No partially hydrogenated oils, no vegetable oils except olive oil (haven't done the safflower oil at this time -- unsure still of it although I read the same study that said it is good for bile) I do eat lots of animal fats from natural sources (to get the bile flowing well) like org. butter, unprocessed full fat dairy products from naturally-raised animals, egg yolks (very important since they are full of choline which cholestasis mamas need) from natural chickens, meat from pastured animals. Lots of vegs, especially beets, onions, carrots. No sweets or high carbs whatsoever, not even fruit juice. I am also off of all gluten-foods. I keep fruit to a minimum and only eat it if I eat it with plenty of cultured cream. (The website that I mentioned above will explain why these animal fats are actually good for the body and the liver)

Let's see... I avoid aluminum cookware, minimize plastics and avoid soy unless it is cultured. (The latter 2 can contain estrogen mimickers - something cholestasis mamas don't need for our livers!) I try to get to sleep before 9pm since the body cleanses its liver around 11pm or so and needs rest around then (I read that on www.mercola.com)

Those are some of the things that seem to work for me. I know most mamas with this condition that I've read about seemed to have had it pretty bad and I can't guarantee that what I do would work for all mamas. But I hope something helps!


----------



## Llyra (Jan 16, 2005)

Quote:


Originally Posted by *Plady* 
Llyra - I'm sending prayers for your babies to have a safe delivery.









Thank you! Like I said, I owe a lot to the mamas here who made sure I took the ICP seriously. I'm looking forward to meeting my babies, but I'll tell you I'm really, really, REALLY looking forward to some relief from this godawful ITCH!


----------



## Plady (Nov 20, 2001)

Did any of you mamas with ICP ever have diarhea as a m/s issue? The past couple of days have been brutal for me and the reason I ask about an ICP relation is because it is so pale. BUt at only 9 weeks it seems very very early to be having ICP stuff happening. Any thoughts?


----------



## Equuskia (Dec 16, 2006)

Quote:


Originally Posted by *Plady* 
I did just read that safflower oil is easier for the body to digest because it doesn't require so much bile to break it down but I haven't figured out what it is in spanish yet.

In Spanish it's alazor, cártamo, or azafranillo. HTH


----------



## Plady (Nov 20, 2001)

¡Gracias!


----------



## mommietime (Nov 23, 2006)

Just bumping...

I am 36 weeks with #2. Cholestasis both times. So far I have gotten lucky (except for the itching) and carried my first one to his due date. This time I will go for the 37 week induction.

I read these stories, and I cry and get so mad that this disease is not taken more seriously by the OB community. I hope that threads like this continue to help get mamas like us help in time to save babies.


----------



## Naomi (Nov 27, 2001)

I'm so sorry for your losses.
















ICP is sometimes mis-diagnosed as PUPPP (pruritic uticarial papules and plaques of pregnancy), which also causes intense itching. I maintain a site of information for women with PUPPP (which I had during pregnancy) and occasionally I hear from someone who had this happen. I include a little bit of information on ICP there, just to try to steer women in the right direction. My understanding is that most women with ICP have itching first and either no rash, or redness from scratching -- PUPPP is very definitely an itchy rash rather than systemic itching. Also, most women with PUPPP get some relief from topical remedies, whereas most women with ICP get relief only from cold baths.

Anyway, I just wanted to add that to this thread for those looking for information about itching. If you've been diagnosed with PUPPP but are at all concerned about ICP (because topical steroids aren't helping, because you're jaundiced, because the itching really started before the rash, because a little voice inside you is telling you to worry...) talk to your doctor again and insist on the tests of liver function. Infuriatingly, lots of doctors think that itching is normal during pregnancy and thus blow off complaints even of really intense itching.

(My site on PUPPP is here: http://www.tcinternet.net/users/krit...aomi/puppp.htm -- just thought I'd add that for women who come to this page by searching for itching, but actually do need information about PUPPP rather than ICP.)


----------



## SGVaughn (Nov 17, 2006)

I havent been diagnosed with this yet and may not still but wanted to express my deepest sympathies to any woman here who loses their baby/ies at any point to anything...I cant imagine how horrible that would be

as far as being brushed off by the OB community, this happened to me today by a nurse who is often your front line person to deal with rather then a dr or midwife ...this nurse has worked in the field for over 30 years and I believe has simply gotten callous to the whole business of pregnancy

I mentioned my extreme epigastric pain and all over itching and was told likely my gallbladder was acting up and I hads dry skin but if Id like I could call my gp and see what he had to say...luckily I did
Ive had a complete blood panel taken today AND my bp has started to go up....oh and the gp called the ob's office and let them know that this WAS an obstetric problem and they will be reviewing the blood work as well
gp seems to think its cholestatis...we'll see
to anyone else who reads this thread, dont let the medical community NOT take you seriously...they have absolutely nothing to gain by ignoring you other then feeling superior...remind them of that if you have to


----------



## rstump (Jun 15, 2006)

I have a question for those who may know more about this condition.

I have severe itching but only in my arm pits & crotch area.

When I say crotch...I mean the fold between my legs and pelvis and severe itching at the bottom of my belly where it folds over my lower pelvis.

No rash...just SEVERE itching. I don't have any symptoms of a yeast infection but I did treat for one with garlic/yogurt just to be sure.

The itching is horrible. My urine is dark but I don't have any of the other symptoms.

It seems everything points to itching on the palms/soles of the feet so I don't seem to fit the profile. I am 33 wks today and now concerned after stubbling across this thread.


----------



## mommietime (Nov 23, 2006)

PLEASE please please go to a doc and get a 'serum bile acid' test. Do not let them ignore you. Dark urine IS one of the symptoms, and my itching never started on hands and feet, always lower belly. The hands and feet sure are itchy now, though!

Please check out itchymoms.com


----------



## Bennifer (Jul 26, 2005)

Mommietime, I'm in your ddc and remember seeing that you had cholestasis, something I had never heard of. Well, for the past week or more I have been up at night itching uncontrollably, mostly my lower legs and upper arms. one night my soles of my feet itched, but that hasn't been a regular thing. It's horrible. i am 36 wks tomorrow. There is no rash, although this morning I had some hives but most went away after I stopped scratching. I can't decide if it's dry skin or something more. I got a humidifier for our bedroom, and put lotion on once or twice a night but it doesn't help. i called the nurse today and she brushed it off, told me to take benedryl or use hydrocortizone, which i don't want to do. so she said to take oatmeal or baking soda baths, and that she'd leave a msg for my doc, who is gone til tomorrow. What if tomorrow is too late? What if I'm just totally overreacting? My other question is that at my 34 wk appt I suddenly measured smaller than I had been (30cm) and had an u/s, in which I was told everything was fine. however, i've been feeling lately like i'm not growing anymore. baby is still active, but i'm concerned. maybe i should call my gp? Any help would be appreciated.
I am soooo sorry for the losses you have suffered. I was crying reading this. Thank you for sharing your stories, though, in hopes that other deaths can be avoided.


----------



## Plady (Nov 20, 2001)

Bennifer, can you go in and see whichever doc is on today? I'd ask at least for the liver function tests and maybe even have them check for lung maturity. An ultrasound will not show if your baby is in any danger, I just showed my new OB the u/s taken 3 days before Wendy died and her mouth fell open because there was nothing unusual on it at all. I don't mean to scare you more but if something is telling you that all is not right don't wait to make a fuss.


----------



## forestrymom (Jul 13, 2006)

I have been keeping track of this thread, and was just about to post in my DDC about the itching I am experiencing. I have been experiencing severe itching, mostly at night, all over my body, mostly my back and the tops of both my feet and hands. My rear itches too. Our climate is really dry right now so I have been using lotion and making sure the teapot on the woodstove is full all the time, but nothing seems to help it out. I told my doctor at my first prenatal appointment 3 weeks ago and he seemed a bit puzzled but then brushed it off. I know it is really early for me to be getting symptoms, but no matter how much water I drink, my urine still seems to be dark in color. I suffered ppd with my first baby and was taking meds until we decided to ttc, and since I have been pregnant I have been feeling the symptoms again--anger, anxiety and severe moodswings.

I am exhausted, but could also attribute that to having a toddler who still wakes every 1.5 to 2 hours at night, and of course I am nauseous, but who isn't at this stage in pregnancy. I am 9.5 weeks along now.

I am hoping you will all tell me I am crazy and paranoid and that it is way to early for ICP symptoms to occur







.

Thanks, either way!
erin


----------



## Plady (Nov 20, 2001)

Hey Erin,
It does seem early but it could happen. I found that the itching always felt like bugs crawling over me, except for on my hands where it itched insanely. Maybe since it is so early you could try controlling it with liver support herbs. I've been using tinctures of milk thistle, dandelion root and yellow dock. Also drinking lots of water (which is a royal pain but seems to help) and cutting out unnatural fats (shortening, margerine, vegetable oils other than olive). I'd also ask your doc to test your liver enzymes, at least to get a baseline.
And, in a much less western medical way, the liver is traditionally where anger/resentment/upset stem from and at least for me, my last pregnancy was remarkable in that I felt angry and resentful pretty much the whole time. If you're feeling bad maybe it would be worth finding an antidepressant that is safe during pregnancy? If there are any? Or trying to find ways to regain calm cool collectedness.


----------



## forestrymom (Jul 13, 2006)

So where do I get the liver support herbs...has to be online because the nearest health foods store is over 130 miles away. Thanks!


----------



## grneyes328 (Feb 24, 2004)

I'm currently 31 weeks and I too have ICP. It started around 15 weeks with itching on the backs of my knees, and stayed somewhat localized for quite a while (maybe a month or 6 weeks.) By Christmas I was frantically itchy everywhere and I would have sworn I was losing my mind. I've been doing the low fat diet and herbs since I found out about ICP, and finally a month ago I was officially diagnosed and started on Actigall, which has seriously saved my sanity. I'll be strting 2x weekly NST's in 4 weeks, and then I'll be induced at or before 37 weeks. It's so sad reading your stories here about loss and being brushed off by the medical community and I really wish this disorder was taken more seriously.


----------



## mommietime (Nov 23, 2006)

Bennifer,
You are NOT overeacting! Cholestasis is a condition that can take your baby overnight, and if you are itching, you need to advocate for yourself and insist on a serum bile acid test. Even when you get the test, it takes 2 days to get results. The best prevention for stillbirth due to cholestasis is induction at 37 weeks.


----------



## Plady (Nov 20, 2001)

Erin,
I have gotten a lot of vitamins from Puritan's Pride. They do have milk thisttle and dandelion root and they have it in capsule form which is nice, the tinctures have been upsetting my stomach. They have a mix of stuff too but it has some ingredients I haven't read about before so I don't know if they'd be safe in pregnancy.

Good luck, I hope it turns out to be a fluke! But better to try to head it off just in case.


----------



## forestrymom (Jul 13, 2006)

Plady...thanks for the link. I will check it out.

So I am planning on switching to a midwife, but is that a bad idea of ICP is possible? I had a c-section last time and want to try for a vbac. And it def. feels like bugs crawling all over me. Its psychotic, but I can't believe the number of times I have startled thinking a spider was walking aross my skin. I really, really, really hope this is not what it is.

And your stores were all so sad. I read them at work and was bawling. I am so sorry for everyone that has lost a child, at any stage. Its just not supposed to happen, ya know?

ETA: I looked on that site and there are so many options with so many different doses...not sure which route to go with pregnancy?


----------



## Bennifer (Jul 26, 2005)

well after much deliberation, and looking at the photos of your precious Wendy, I thought, "why am I caring if I am overreacting?" I called my GP, who I love, and he had me come in immediately. He looked me over, listened to the heartbeat, checked for tenderness in my liver, looked in my eyes for any jaundice...he didn't feel there was anything to be alarmed about, but said he could order some blood tests if it would put my mind at ease. So I went straight to the hospital to have a liver panel done; now I'm wondering if that included the serum bile acid test or not. I thought from reading online that a test like that took over a week to get results, so I didn't even ask, thinking that any bloodwork would give SOME info. He thought he'd have these results by tomorrow. I'm also going to call my OB tomorrow and see what he thinks. I'm feeling better, knowing I'm at least doing something, but I'm going to just have to pray until I know more; there's not much else I can do. I also got some better soap (Dove) and lotion and my GP gave me some homeopathic remedy that might help the itching. Is there anything else I can do in the meantime? Other than just pray that my baby girl is ok?


----------



## Bennifer (Jul 26, 2005)

more itching last night. it spread to my palms, which was soooo painful. i called my ob this morning and am going in in 2 hours to see him. i'm 36 wks today. not sure what the labwork is going to say, but i almost just want them to take her today if her lungs are developed. i'm so worried that she's not going to make it if we wait a minute longer...but then worried also that without a definitive diagnosis i could be hurting her by having them take her a month early. i have our hospital bags packed just in case. please keep us in your prayers. And let me know if there is anything I should make sure I tell my OB today?


----------



## Plady (Nov 20, 2001)

Jen, I think all you can do until you get your results back is to drink a ton of water, like 5 liters a day. Also cut way back on fat consumption. You are far enough along that going to a very low fat diet shouldn't do any harm to the baby and could be a life saver. In the meantime I'll say some prayers for you and your baby to have a safe outing. ETA it's taken me too long getting this post out! Good luck today and if her lungs look good then try not to worry about early induction. The premies I've known have all thrived.









Erin - I don't think having a midwife is necessarily a bad idea as long as she knows about ICP and is willing to treat you as necessary. However, I'm pretty sure that inducing labor after a c-sec is super not recommended since it can be too intense for the uterus, so you might not be able to do a v-bac if you get to the point where you need to get baby out early.


----------



## Bennifer (Jul 26, 2005)

thanks plady. my ob appt went well. the liver panel was normal, but i insisted on getting the serum test as well and he was fine with that. he feels I don't have it, but talked to me at length about it and said if i wanted to keep being tested every week until i have the baby it's fine with him. i actually feel much better right now about all of it; not stressing. he said if something was off the liver panel would have showed hyperbilirubin levels and mine were completely normal; then i said that i believed those results could all be normal and i could still have it; he explained that if they are sooooo low/normal that at this point the baby isn't at risk anyway. please tell me that is true! in the meantime, i had the other blood draw and will wait to get those results. if the serum bile acid levels come back normal, does that mean I'm ok?? I'm 36 wks today if that makes a difference. thanks again for starting this thread. it's exactly what i needed.


----------



## Plady (Nov 20, 2001)

Hi Jen, I'm glad that so far so good with the results. However, I honestly do not know about how the results factor in to baby's safety. I wasn't diagnosed in time and it was only 4 months after the fact that I got my levels tested. Then (and now unfortuately) my bilirubin levels were higher than normal. I would recommend joing the message boards at itchymoms.com for more insight on the test results vs. safety. It is a great group of women and lots of them have experience. I'll keep you in my prayers though, you're definitely in the risky range if you do have ICP (OC).


----------



## gracejr (Jan 23, 2007)

This thread brings back so many scary memories. I am so so sorry for all of you that have experienced a loss.

I developed severe itching later in my pregnancy, and didn't really have any other signs of cholestasis. I figured it was normal, or relating to allergies, but after frightening myself to death with some internet searches, decided to mention it at my 36 week mf appt.

She wasn't convinced it was it, but decided to do bloodwork anyway. Perhaps she just didn't want to alarm me. I didn't go back until a week later, where I found out my levels were elevated. The bile wasn't imcredibly high, but my liver levels were. Two OBs were consulted with, more blood was drawn, followed by a NST, followed by being told we were going to be induced early. Having hoped for a completely natural, beginning labor at home, drug free water birth, I was pretty disappointed.

Two days later we went to a high risk OB for an ultrasound and biophysical profile. Everything looked ok there, but as we know, that doesn't guarantee anything. Went back to the midwives for another NST, and found out the induction had been scheduled for 3 days from then. Thankfully, things went reasonably well, there was no meconium when my water was broken, and I was still allowed to deliver in the tub. Kaiden was very blue when he was born, and shortly before he was delivered was starting to show signs of fetal distress. I was terrified, and couldn't help but think of all those stories I'd read.

He's now almost 7 months old, and the picture of health. Other liver issues run in my family, and while I can't wait to be able to be pregnant and have another child, I'm terrified of having cholestasis again. I was so lucky that K was alright, and my midwife was proactive enough to do a blood test.

Those of you dealing with this right now, I really hope the best for you. Check out itchymoms, boost your liver, do whatever you can to make sure that little one stays healthy.







Those of you that aren't sure, *get the bloodwork done!*


----------



## gracejr (Jan 23, 2007)

Question for those of you who have dealt with this...

My liver levels were almost back to normal when I had been rechecked after Kaiden was born. Other liver issues do run in my family though... My uncle has Alpha1, mom has an undetermined liver issue, etc.

We won't be TTC again for at least another year, but is there something I can do even now to help protect future pregnancies? Perhaps something that can give K an additional boost, since he's still bf'd?

Also... Has there been a link between newborn jaundice and cholestasis? I'm just wondering if there may be a connection. K was jaundiced for a while after he was born, and we had to stay in the hospital almost a week. I've always wondered if it could have been a result of my liver not working properly while he was in utero.


----------



## mexicomommy (Oct 24, 2005)

Gracejr,
Thanks for sharing your story. I am so glad things turned out well for you!
Charlsie


----------



## Plady (Nov 20, 2001)

Here is one site with a bunch of ICP/OC stories from the awareness campaign sponsered by Itchymoms.com from Feb. 14 this year.


----------



## Bennifer (Jul 26, 2005)

just wanted to update that i got my SBA results today and they were normal. A 3, and normal is 0-10 apparently so that's good. and they weren't fasting either, which i would think would if they were fasting they would be even lower. i'm still itching though. i'm feeling more confident I don't have this. the test was taken on the 23rd; i'm now 36 1/2 wks pregnant. Do you think I'm in the clear??


----------



## Plady (Nov 20, 2001)

Jen, is itching the only symptom you've got? Have you had any relief using topical creams or anti-histamines? If you don't have any other symptoms and the itching isn't something you experienced with your first pregnancy then maybe you're fine and just getting weird itchiness. If you have any other symptoms though I'd still be very cautious. From what I've read on itchymoms it does seem that the blood tests alone aren't completely reliable. I don't know, you've got a really hard choice to make. I'll keep sending prayers for a healthy baby your way, can't hurt right?


----------



## mainesax (Dec 21, 2006)

Hello, everyone

I read a lot on here, but do not post much, but when I ran across this thread, I knew I had to!

I'm 32 weeks with pregnancy #3. I have one daughter who is 17 months, and a pregnancy before her that we lost to miscarriage.

I had cholestasis starting around 18 weeks with my daughter. The itching was unbelievable, but the dark urine was my first symptom, which we realized in hindsight. My midwife, OB, and nurse kept telling me I was dehydrated, and to drink more water. I knew I was drinking a ton, so the next time I had 2 liters of water before I went to my appointment. Same response! So I knew something was up, but didn't know until I started itching. I looked it up online, found itchymoms, and went from there. My OB was not well-informed on it, and my midwife and nurse were completely in the dark, just told me to take some benedryl... Luckily I had educated myself and passed on my stack of articles to them! I had biweekly NSTs and fluid checks, going to weekly as it progressed. I asked about natural treatment and medications, and they only told me to take Cholestyramine - which I knew was not recommended any more. I decided to just deal with it on my own, and I'd take meds if I got to the point I couldn't stand it anymore.

I ended up making it, and insisted on an early induction. We went in at 37.5 weeks, and despite much trying on my part, ended up with a c-section a week later! It was awful, but I did my best. I was starting from nothing, and after the first two days of Pitocin, only got to 2cm. I went home for a day, came back, started over, and after another 2 days was only at 4cm! They broke my water, and things got crazy from there. My contractions were horribly strong, and one on top of another - I'm wondering if I actually was at the point of hyperstimulation. I made it 16 hours, and my nurse who had been with me most of the time begged me to take something for meds so I could sleep. Because of all the monitoring early on, I barely slept at all, and with the liquid diet and everything else, I was exhausted. I kept falling asleep standing up between contractions, and she was worried I would get hurt. I finally gave in and had an intrathecal injection, and it went downhill from there. My blood pressure dropped dramatically, I had intense itchiness on my face (OH NO - NOT MORE ITCHING!) and was dizzy and nauseous. They checked me again, and I was at 7cm. I think it was pretty good progress for me - 3 cm in 16 hours, when it had taken 4-5 days on Pit to get to 4! Anyway, I gave in to their pressing, and had the c-section. I am still beating myself up over it, but have come to uncertain terms.

I ended up with a healthy, happy, 10 lb 4 oz little girl, born at 38.5 weeks. She did have pretty bad jaundice, which they wanted to blame on 'breastfeeding jaundice' of course, but I'm sure the cholestasis didn't help things any. We went home after three days, came back in the next morning for another bilirubin test, and it was almost 20, which was the danger zone, so we were readmitted. She was on the bilibed, and I refused them giving her formula, and instead got up a half hour before she needed to eat so I could pump and feed her on the bed. I had about 12 hours where they wanted her on the bed non-stop to try to bring her bili levels down quickly. She had to have an IV, too.







We went home the next day, and she had no problems at all with breastfeeding. I think it's what saved me from depression and guilt. If bf'ing hadn't gone well, I don't know what I would have done...

Wow, sorry this has turned into a novel. I'll make the rest short.
I'm now expecting our second, and was celebrating when I made it to 28 weeks with NO signs of cholestasis. I had read that it usually starts earlier in subsequent pregnancies, so I thought I was home free. But a couple days later, I got dark urine, which I hoped was just from dehydration following a 2 day bout of norovirus. But then I started itching. I immediately called my OB's office and insisted on them ordering tests. I changed offices after my previous experience. The receptionist told me both OBs were in surgery, and the midwife wasn't in yet. I told her I would come in and wait for the midwife to arrive. So I parked myself in the waiting room. Eventually a nurse came out and took me into an exam room to get information - they knew nothing about cholestasis. So I gave her info, told her what tests I needed, and waited some more. Eventually the midwife arrived, and I went through it all with her. She ordered the tests, and I had them drawn. My LFT came back really elevated, and I still haven't heard about my bile acids. I had another appointment with one of the OBs. He was great! He's near retirement, and said he hasn't had someone with cholestasis for 15 years. He had a stack of post-its he'd taken notes on from research. I was impressed. We decided on Urso, and I am so glad I took it - it has helped SO much! He told me he would feel safe letting me go naturally as long as baby and I both looked ok, but that it was up to me. He also said that despite my previous c-section, he'd be willing to do a low-dose induction if my cervix was favorable. I haven't decided what I'm going to do. I'm taking it day by day.

I'm scared of the risks of stillbirth, knowing that many people (like some of you) have had NSTs and u/s showing baby was fine, only to lose it soon thereafter. I have a lot of soul searching to do, and I'm sure some of you can help me through this. Lots of hugs to you all, and thanks for reading my novel...

Marleina


----------



## Plady (Nov 20, 2001)

Wow Marleina,
Good luck with your decision and welcome out at MDC!









Penelope


----------



## mommietime (Nov 23, 2006)

Marleina

Welcome and








It's such a hard decision whether to oppt for early induction. We really struggled with it, but with my bile acidtest coming back at 30 (2 is really normal) my OB got nervous, and we both agreed that "she's alive today, so let's get her today". I was 36 weeks. I went to term with my first and went for the induction on my due date.

My only advice is be informed, and go with what feels right. It's just a balancing act.


----------



## jackson's mama (Apr 27, 2003)

Hi mamas,

First, so very sorry for the losses here.









I've been itching for about a week now, starting last Monday. I called my doc on Tuesday after a miserable night and he had me come in for bile acids labs on Wednesday morning. I'm still waiting for the results, but I'm so glad that he took me seriously and didn't brush me off. I'm 33 weeks w/twins which puts me at higher risk for ICP and just at the right time for it to start.

Weird thing is that sometimes I don't itch at all, and other times I itch so badly I can barely think straight! I don't really have any other symptoms so I'm not sure my labs will come back indicating ICP or not. The waiting is making me very nervous though.

I'm wondering if it would be a good idea to start some herbs now? I read somewhere that milk thistle is not OK to take during pregnancy - has anyone else heard this? Did the herbs help with itching at all? How long did it take? I might run down to my local health food store tonight if it's not going to be harmful. I don't want to be overreacting, but I can't see what else could be causing this incessant itching to come up so fast. My skin is well-hydrated, no rash, no other major changes in detergent or soap or anything.


----------



## MiamiMami (Feb 1, 2005)

First off, my heart goes out to you Mamas that have suffered a loss. I am so sorry.









I am really surprised by everything I have read in this thread. Let me tell you all my story and let me know what you think.

Pregnancy was pretty normal. I switched from a cnm/ob practice to a homebirth midwife at about 22 weeks. Blood pressure was great throughout as was blood sugar etc. I did have some weird itching which I actually posted about here on mdc at about 20 weeks. It was a weird deep, painful sort of itch. I told one of the cnm's at the first practice and she told me it was dry skin. I never even mentioned it to my hb mw as I didn't think it was important. Now my dh just reminded me how I had very itchy feet throughout. I also had very soft orange colored (sorry tmi) stools and never mentioned it to anyone. I was pretty anemic towards the end, but took an iron supplement per my midwife.

I went to 42 weeks with ds and ended up having my vbac at the hospital after transferring (60 hours of labor, phew). BP was fine throughout. I did lose a lot of blood though.

1 week postpartum I had dh rush me to the ER with my 3 year old and newborn in tow. I had sudden terrible pain in my upper chest and back. I was afraid it was a bloodclot or something. I was admitted and spent 3 days in the hospital. After an MRI and u/s they determined it was probably my gallbladder. I had an endoscopy and was told I had alot of gallstones and to follow up with my reg doctor.

Three days after being released I started having pain again and doped up on percoset to mask it. I couldn't get an appt with my primary until after New
Years, so I thought I could hold out til then. Then I started peeing brown and wasn't sure if it was the herbs I was using on my episiotomy. After 2 days of this I turned yellow and started itching and realized I had jaundice. I went back to the ER and was admitted. I apparently had pancreatitis and was on a few IV antibiotics and lots of pain meds. I had an ERCP done in which they cleared the common bile duct which was clogged with sludge and a lose stone. 2 days later I had my gall bladder out and was discharged 2 days after that.

Recovery took awhile, but I feel somewhat back to normal now.

My question is, do you think I could have had choleostasis that went undetected? If so, what is the probability of this being a problem in future pregnancies?

TIA Mamas.


----------



## Plady (Nov 20, 2001)

JM - Good luck with the test but don't let up on vigilance if they come back normal and you are still itching. From what I gather over at itchymoms.com there is a pretty wide range of results considered normal. As for milk thislte, my midwife has highly recommended I take it and both of my OB docs approved too so I don't think there is any problem. I'm also taking dandelion root and yellow dock which also passed muster with the caregivers. The timing of your itchiness is definitely suspicious. Do you have any other symptoms (pale stools, dark urine, insomnia, depression)?

MiamiMami - There does seem to be some connection to gallstones with cholestass but I'm not sure that there is any "proven" link. However, given that I would just be very aware of liver function for this pregnancy. Good luck, that experience sounded horrible!


----------



## jackson's mama (Apr 27, 2003)

Quote:


Originally Posted by *Plady* 
Do you have any other symptoms (pale stools, dark urine, insomnia, depression)?

Thanks for the reassurance that the herbs are OK to take. Does it matter if they're capsules or tincture?

I don't really have any symptoms other than the itching. I do have some insomnia but I had chalked that up to the itching being worse at night and keeping me awake. I noticed my urine was darker last week at my OB appt, which is interesting because the itching was just becoming noticable that day and I hadn't even thought to mention it yet, but I haven't seen it that dark again since then.


----------



## Plady (Nov 20, 2001)

I don't think it makes much difference ticture vs capsule. I was taking the tinctures at first and then when m/s hit I couldn't stomach them and switched to capsules. Now I could probably tolerate the tincture but the capsules are so much easier. Good luck though, I hope you suddenly remember walking through a patch of poison ivy or something.


----------



## mommietime (Nov 23, 2006)

Marleina

Did you get your serum bile acids back yet? How are you?


----------



## mainesax (Dec 21, 2006)

Julie, thanks for asking!

My bile acid came back at 29 - not horrible, but I caught it early. Now that I'm on Urso, I've had no itching (unless I go long between doses). I'm calling today to have another draw done to see if the med is bringing the numbers down.

Right now, I'm at a place where I've decided that if my numbers are under 30 and we're both doing fine, I'm going to let nature take it's course. It's been a really tough decision, but I feel good about it. From the research I've done, it's not until sba levels get above 40 that there's any increased risk to baby. So right now, that's my plan. It definitely could change, though!


----------



## jackson's mama (Apr 27, 2003)

My SBA came back today at 21. Not horrible, but definitely high.

I'm so confused now, and I need some input. I've done tons of reading on this prior to today, and went in armed with knowledge in case the SBA came back high. My doc was very proactive about getting the right labs done, but now I'm not sure of his protocol. He's ordered biweekly NSTs, and that's it. He didn't want BPPs (said I could do 1 BPP per week or 2 NSTs, he prefers NSTs). He doesn't want to start Actigall and hadn't heard of Urso - he said in his experience the Actigall doesn't help very much in terms of symptoms, but that if the itching got worse he could start me on steroids (?? I haven't read anything about steroids being part of ICP treatment) and maybe Actigall if I wanted. He doesn't want to recheck my SBA levels again, he says he goes more on symptoms than levels (actually said "I don't care about the levels"). We had already discussed induction at 37 weeks due to twins - I was planning to negotiate with him on that as we got closer, but now I guess I'll just go with it.

So does that sound like good management of ICP, or should I push for more interventions at this point? He says he's treated lots of women with ICP and has never had a negative outcome, which honestly isn't very reassuring. Negative outcomes are rare, but that doesn't mean I won't be the first, KWIM? I really like my OB a lot - I used to work for him - but I need to make sure he's handling this like he should.

BTW I started herbs today. I found a combo supplement that has Dandelion Root, Milk Thistle, Burdock and Artichoke Leaf (bought it because it only said DR and MT on the label, and read the fine print when I got home). Does anyone know if Burdock and Artichoke leaf are OK to take?

Thanks so much, mamas.


----------



## mainesax (Dec 21, 2006)

21 is elevated, and it usually only goes higher. The biweekly NSTs are a good start - AFI (amniotic fluid index) tests biweekly would be good, too, as a lower fluid level can show problems as well. It sounds like your doc isn't up to date on his research (not at all uncommon). Urso (also known as Ursodiol) is similar to Actigall, but I've heard that it tends to work better. It is generally used for treatment of gall stones, blocked ducts and primary biliary cirrhosis. It actually increases bile, but it's in a form that is not toxic to the liver. The usual dose is 13 mg to 15 mg per kilogram of body weight per day, taken in two to four divided doses with food. I'm currently on 250mg taken four times a day.

The steroids are an 'old-school' treatment - probably dextramethasone or something like that? It can reduce itching, but doesn't help the cause - i.e. it doesn't help the baby or your system, plus it has all the side-effects of steroids. If you are not on meds, I would demand SBA level checks every two weeks as well, as they can change before your symptoms show it. Carrying twins will actually make things a little simpler for you, as you won't have to fight if you want to go early - it will likely happen anyway!

It doesn't sound like good management to me. I refused meds my last time, but my levels were well monitored. The herbs are a good idea - I'd double check with a naturopath or such on dosage during pregnancy, though. You can also check on safefetus.com to look up the safety issues.

I have a lot of articles bookmarked that I can link for you if you want to pass them on to your OB. It may just be that he thinks he's doing what's right, but just isn't up-to-date on the treatments.

Keep in touch, and I hope your itching isn't too bad. Hopefully you'll just have a mild case and be just fine!


----------



## jackson's mama (Apr 27, 2003)

Thanks for your input, *Marleina*. I'd love those links if it's not to hard for you - I think I'll email them to my OB just to be on the safe side. Thanks







.


----------



## mainesax (Dec 21, 2006)

D'Anne - here are some links for you!
I have some more somewhere, but I have a fussy baby on my lap who isn't cooperating. I'll try again later!

http://www.medigraphic.com/pdfs/hepa...002/ah021f.pdf

http://www.aafp.org/afp/990215ap/829.html

http://www.pi.nhs.uk/reviews/oc/oc_management.htm

http://www.vhi.ie/hfiles/hf-563.jsp

http://www.blackwell-synergy.com/doi...1988.tb06791.x


----------



## TrishWSU (Oct 19, 2003)

I am resurrecting this thread because there is a lot of good info and I'm worried I have ICP.

I am 35 weeks, and the only symptom I have is an intense rashless itch that is definitely worse at night. It all started around 33 weeks. I went to a GP and had a full liver panel done, and everything came back normal but I'm not sure if he had the SBA done. I asked and he said they checked everything, but I thought it took about a week to get those results back and my labs only took an hour. My levels from the second blood draw (1 week in between) were actually lower than the first. Also, I have been having upper right quadrant pain and the epigastirc discomfort. My GP also had a liver and gall bladder u/s done that showed a partial obstruction in the bile duct and some "sand" in my gall bladder, but I've read that gb problems can be associated with ICP.

I started taking dandelion leaf tincture after I read about ICP and that has done wonders for my reflux issues, but nothing for the itch. I was having light loose stools but once I started taking my prenatal daily (which was also after reading about ICP) that has gone away. Also, I was having dark urine, but I have been drinking about a gallon of water a day and that has pretty much gone away. It is still colored, but not like it was. I have been using lotion and even coconut oil daily, but it does nothing for the itching.

So at this point I am really unsure if I have this or not. I am already 35 weeks. I have been going UP up to this point, other than seeing the GP for the blood tests. I just don't know if I should ask him for another test or try to find an OB who will see me (I tried a few different offices 2 weeks ago and they said they couldn't/wouldn't start seeing me because I was already "so far" along-WTF is that about?!)

Anyway, I have been going back and forth with this and I just do not know what to do! Part of me says everything will be fine and this is some kind weird pregnancy related dry skin, but then another part is freaking out that it could be this really scary condition. TIA for any advice or suggestions!


----------



## Plady (Nov 20, 2001)

Hi Trish,
Have you considered trying to find a perinatologist? You might need a referral from an OB I guess but I think, considering you've had some of the symptoms, it would be a really good idea. From everything I've been able to gather, the blood tests are nearly meaningless since bile acid levels can change dramatically in far less time that it takes to get the results.
In the meantime, I'd recommend upping your water intake to 4-6 liters a day if you haven't already, start on a real low-fat, no 'fake' fats diet, add milk thistle tincture to the dandelion, maybe try some Benefiber.
Have you gone to www.itchymoms.com yet? There is a good message board there and you could ask if anyone knows of an OB with ICP experience in your area.
I'd definitely try to get more info and be proactive if I were you. It is definitely a hassle and at 35 weeks and right at the holiday time I'm sure its the last thing you need to deal with but better safe than sorry.

Good luck!
Penelope


----------



## mainesax (Dec 21, 2006)

Sorry if my post rambles - I'm having Christmas hangover...

I second everything Penelope said. I'd really push to get another opinion, too. When was your last liver panel done? Those can be all over the place even with ICP. All your symptoms really point to it. The increased water consumption reduced my urine darkness too, and I found it helped my itching slightly.

I went through past term with my last daughter with no issues, but I was on meds, being watched closely, and had no symptoms on the medication, so felt safe. I have heard the horror stories, though.









I would hope that you could find an OB that would at least talk to you if you told them your story - maybe even if you could sign a waiver or liability or something? I think getting the SBA test done asap would be beneficial. An OB or peri may be able to put a rush on it, too. Although the SBA levels can change very quickly and it takes time to get the test back, having that knowledge of the level can be helpful. The liver function tests change in response to the bile acids, so chances are if you are having symptoms but the LFTs come back ok, the bile acids will be elevated when taken.

I guess a good question to ask yourself is: will the diagnosis change anything for you? Would you do anything differently, or just want to know?

If you think you'd go for an early induction if you had ICP, then by all means push for all the testing and such. I really believe in your gut instinct. I was really nervous about my first baby, had no meds and my levels were really high, and we went in at 37.5 weeks for her. With my second I came down with symptoms way later along, took Urso, my levels were almost normal, and I just had a good feeling about it. She was born 1 day shy of 42 weeks, just as healthy as can be. I wouldn't do anything differently.

If you don't think you'd do anything differently, maybe just keep doing what you're doing. As scary as it is, the chances of horrible tragedy from ICP is quite low. If you feel like you can deal with that, then you could just keep on top of things with the herbs, diet, water, and do faithful kick counts to check in on the babe.

It seems like you're worried, so I'm guessing you'd like to know one way or another. If you're open to meds, taking Urso might be an option. With having gallstones, you'd 'qualify' to take it anyway, and if it's ICP, it would help with your symptoms, lower the bile acids, and make you more comfortable. Checking in on itchymoms would be great, too - especially if you could find someone in your area to refer you to a friendly provider.

Lots of luck to you - I hope things come together to get you what you want.


----------



## jackson's mama (Apr 27, 2003)

Hi there,

Do you have a good relationship with your UP (I don't know what that abbreviation means







)? Can you just call and tell him/her that you've been reading about ICP and you need to make sure that you get bile acids drawn? I think you need to be direct about wanting that specific test - many health care providers don't know the serious ramifications of ICP and may not even know the appropriate tests to accurately diagnose, so you may need to speak up. Asking for another blood draw seems like it would be a LOT less hassle than trying to find another doctor, waiting for an appointment, and then going through the whole story again... and then it may not even be ICP!

From your description it *could* be ICP, but it could also NOT be ICP. I hope it's not! If it does turn out to be ICP, definitely try and get a referral to a perinatologist for the remainder of your pregnancy.

**As a side note, I wanted to update my story for this thread. I went ahead with the biweekly NSTs, and got my doctor to start me on Actigall/ursodiol (urso is the generic form of Actigall) in addition to the steroid. After 2 weeks of no improvement in my itching (and total misery and no sleep), I noticed that baby B wasn't moving as much as before - I just knew that something wasn't right. I called my OB who sent me for a BPP. Turns out that Baby A had a frighteningly low amount of amniotic fluid, so I was induced the next day and delivered the girls at 34w4d. Both had light meconium which to me, since they were only 34w4d, indicates that they were well on their way to some serious distress and problems, but they were delivered (vaginally







) healthy and beautiful. They spent 4 days in the NICU for observation of a little jaundice and came home with no problems.

As a ridiculous turn of events, I developed PUPPPs after delivery! It seemed for a while like I would never stop itching. It was a particularly rough case and took 3 different tries to wean down the prednisone before it went away. The ICP itching did resolve immediately after delivery though, and after ICP the PUPPPs rash was definitely more tolerable (at least I could sleep!). I would still not wish either on my worst enemy, but if I had to choose I'd choose PUPPPs over ICP any day.

I was ready to get my tubes tied after delivery to ensure I'd never have to go through that again. But even worse than the itching was the fear of something bad happening to my babies - and something almost did. My OB was pretty nonchalant about the ICP, telling me that he had never had an adverse outcome from ICP in his years of practice (he's all of 45 or something - gee, that's comforting and not a very smart way to manage his high risk patients). Hopefully he's changed his outlook now and manages his ICP patients a little more diligently.


----------



## TrishWSU (Oct 19, 2003)

D'Anne~UP means unassisted pregnancy. I have been doing all of my own prenatal care and plan to deliver unassisted at home.

I called my GP back today to request the SBA, but of course I got his nurse's voicemail and she didn't call back. I also have calls in with two other OB offices in town to try to get seen.

It's really frustrating not knowing for sure whether this is even an issue! If I do indeed have ICP it seems like the last 2+ weeks of the liver supporting herbs, increasing my water intake to over a gallon a day (I'll admit I was being kind of lazy and probably only getting about 40 oz of water a day prior to the itching starting) and watching my fat intake and limiting processed foods are helping. At first I was itching all day long all over, then it just got really bad at night, now the last two nights I have had much less itching. It's just after 9pm, but the only place I've felt itchy so far tonight is my belly, but that could also be from having maternity pants and a shirt over it. I think (if it is ICP) it must be at a low, manageable level for now. Like maybe my bile salt levels are probably on the lower end of elevated or the high end of normal and not yet at a crisis level.

I feel better now with waiting to get SBA results if I can get in and have them back in the next week or so since I will be 36 weeks on Monday. It has been so hard not to freak out and go to the hospital and demand an immediate induction-not that that'd be likely to happen anyway. I really hope I am over reacting to dry skin!


----------



## jackson's mama (Apr 27, 2003)

Quote:


Originally Posted by *TrishWSU* 
D'Anne~UP means unassisted pregnancy. I have been doing all of my own prenatal care and plan to deliver unassisted at home.









Thanks - I have seen UC but not UP before.

The good news is that if you are feeling significantly less itchy then you most likely do not have ICP. Based on my own experience, if you don't feel like you might be losing your mind due to the incessant, intense, all-consuming itching then you probably don't have it







. Best wishes for the rest of your pregnancy!


----------



## TrishWSU (Oct 19, 2003)

I just found out my SBA results from my blood draw on thurs/Fri {it was taken at like 2 am on friday} The # is 20.5 and the normal range for this lab is 4.5 to 24.5. The doctor is out of the office until Monday so the nurse said she'd set aside my file and talk to her on Monday about what she what's to do from here since it is on the high side of normal. I think I'd like to get another blood draw just to feel safe. I don't know, though, should I still be worried about having ICP?

I am 36w 2d, and my itching started around 32 weeks. At first is was an almost constant itch. For the last 3 weeks I have been taking dandelion root and milk thistle tinctures daily, drinking a gallon of water, and watching my fat intake. The itching has dramatically decreased to where I will just have a few isolated periods a day where I just itch like crazy, but it's no where near as bad as it was or like I have read about others experiencing.

We have been planning to UC and I would love to be able to still do this. I have been so worried about having ICP and what that will mean for delivery, but even with these results I'm not 100% sure if I can just relax now. I really hope this baby will just decide to come next week! Then I'd feel a lot better, lol!

*ETA:* One thing I just thought of...I had eaten probably less than an hour before the blood draw was done. I have read that some labs require a 12 hour fast before the test, so I'm not sure if/how that would affect the results. I'm going to see if I can get another draw tomorrow after a self-imposed 12 hour fast. I feel that at least 2 tests are needed before they can make a diagnosis either way.

Also, for those who take herbs for liver support, does it matter whether you use dandelion root of leaf? I just realized that I have dandelion leaf tincture.


----------

