Intra-Hepatic Cholestasis of Pregnancy

This is just a quick page describing my experience with Intra-Hepatic Cholestasis of Pregnancy (ICP), which is, in lay terms, a condition in which your bile acids leak and accumulate on the skin (and cause unbearable itching).  The result of said experience, my son Theodore, was born healthy and full-term just under seven months ago; I've meant to write up a web page about it ever since and never got around to it.  Hopefully I'll remember what we did now!  Warning: were I a professional writer, I would be a novelist rather than an essayist -- this will not be a short page.

First, a couple of disclaimers -- I am most emphatically NOT a doctor, I don't play one on TV (we don't even HAVE a TV!), and I do NOT recommend trying to treat ICP without a doctor's input.  This isn't something to fool around with, folks -- untreated, unmanaged ICP carries with it anywhere from a 10-25% fetal death rate.  That's dead BABIES, dead either at or right close to term, and you really really REALLY don't want to risk that unnecessarily.  Secondly, I tend to approach life as holistically as possible, I don't take what doctors say as gospel, and I tend to reach for alternative medicine as a complement to or replacement for conventional Western medicine.  So when I was diagnosed with ICP around week 32 of my second pregnancy, I didn't just accept that I was going to be miserably itchy until I was finally induced early and there was nothing I could do to improve the situation.  Instead I looked for things that I could do to help myself and my baby, while never -- NEVER -- disregarding the very real risk inherent in ICP.  

So.  As I said above,  this was my second pregnancy; my first ended at 24 weeks with the delivery of a very tiny little boy.  He's four now, delighting in being a big brother and in asking "why" every chance he gets.  As fortunate as we've been with his outcome thus far, though, we did NOT want to repeat that experience -- 101 days in the NICU is plenty for any one family, thank you.  So this pregnancy was managed very differently from the start.  Knowing now that I most probably have an incompetent cervix, I had a cervical cerclage placed at week 13.  Complications from that cerclage, which was the most painful thing I've ever experienced including two unmedicated labors, led to modified bedrest until 36 weeks.  Around 31-32 weeks I got sick.  Not horribly so -- a mild fever, general unhappiness, etc, but accompanied by a very sore mouth with many, many white/red lesions and sore spots.  Even drinking was painful, not to mention eating; I went from eating a healthy diet and drinking a gallon of water/day to painfully struggling to eat a soft scrambled egg or a little homemade vanilla pudding and managing to drink MAYBE 1/4 gallon of water per day.  I lost 8 pounds within a week.  I personally think that wreaked havoc with my system and led to my liver/gallbladder problems, though there's no medical evidence for that (very little is known about ICP in general).  I spent the night in the hospital at 32 weeks due to frequent contractions; after two IV-doses of Terbutaline and one in pill-form they finally stopped and I was able to go home.  Thankfully the fetal fibronectin test was negative, which was a very definite relief.  At a routine OB visit that next week I mentioned that I was itching all over, all the time.  The OB said it wasn't uncommon in pregnancy, but that there were a few things they should test for just to be safe.  So I went in for a blood test, not really all that worried but doing research regardless (the Internet's great for that sort of thing).  The more I read about the options -- PUPPS, ICP, etc -- the less I wanted to have ANY of them!  I noticed that I had several of the less-common symptoms of ICP though, including pale stools and very dark urine; that was somewhat less than reassuring.  I got a call on Sunday from my OB saying that the bloodwork showed elevated liver function numbers, and that I had ICP.  He then proceeded to tell me more about the condition -- that it wasn't "curable", but that giving birth almost invariably cleared it right away; that there were various treatments for the itching, topical and otherwise; that untreated it carried a high fetal death rate; and that the management was essentially balancing between giving the baby as much time in utero as possible and inducing labor (or having a caesarian) by 36 weeks (because the majority of fetal deaths occur after that point).  I was, understandably, freaked.  He was talking about there being a very real chance of my baby dying, about frequent non-stress tests and ultrasounds and AFIs (amniotic fluid ... inventories?  I forget -- they do an ultrasound to make sure that you have enough amniotic fluid), about inducing this baby that I had struggled so hard to keep inside as long as possible.  He was talking about my baby DYING.

After a little bit of freaking out, though, I knew there had to be something I could do to improve my situation.  I was adamantly opposed to taking any of the anti-itch medications, since they hadn't been shown to help the baby and I didn't want to add another possible problem to the overall equation.  So my first problem was to find ways to improve the itching.  "Itching" sounds like such a minor problem; this really was anything but.  I was scratching myself non-stop, writhing, crying.  I cut my fingernails so I didn't raise welts as quickly.  And from what I understand I actually had a pretty mild case of the itchies -- some women have it much, much worse.  If you're one of them, I feel for you.

Things that I found helped relieve the itching:

• It sounds strange, but my husband would slather me all over with yogurt.  Plain, organic yogurt.  I would lie down on a towel, he'd get out the yogurt, and he'd just rub it all over my body.  I'd lie there until it dried up, and then I would take a cool shower.  (Warm showers exacerbated the itching, but cool ones relieved it somewhat.)  I would shower as quickly as possible, just enough to rinse off the yogurt, and would pat, not rub dry.  Sometimes I'd just lie down, still wet, and drip-dry.  The relief lasted even longer that way, since towel-drying re-sensitized my skin.
• Various natural creams and lotions helped a little bit -- pure aloe, rubbed from the plant leaf (we kept them in the refrigerator, so they were cold), was nice, and I'd alternate with other emollients.  I had to keep switching, as they would only work once or twice in a row.
• Sitting directly in front of a fan helped -- the cool air felt almost like scratching the itch.  Mmmmm.
• Ice packs.  We kept them in the freezer and I rotated them as they got warm.  I'd lie on them, place them on top of me, curl around them.  I took them with me when we went anywhere, and would occasionally frighten people by how chilly my skin was until they realized why!
• The biggest help, though, was water.  My midwife managed to get us a birth tub very very early (usually she doesn't loan them out until a few weeks before the baby's due), and we set the Aqua Doula up in the living room.  I just about lived in that tub, because I itched SO much less while I was in there.  I also had fewer contractions, and the water helped the baby not press down on my cervix (a very important thing, when your cervix is somewhat less than completely "competent").  All the water really affected my skin, though, which  got dry and abraded.  I worked for a happy medium, and would stay in the tub until the itching and contractions stopped, then get out until I couldn't stand the itching anymore, and repeat all day long.  The water in the Aqua Doula needed changed every few days; were I in that position again, I'd rent a portable spa with a filter so the water needed changing less frequently -- it's not a lot of fun, and it wastes a lot of water.

That's how I managed the itching.  It sucked, don't get me wrong, but it was bearable and I really, really, really didn't want to be exposing the baby to more medications than I absolutely had to.  (I still feel horrible about the three doses of Terbutaline and the numerous ultrasounds that went along with the cerclage placement and removal.)  

As far as the medical aspects -- my OB told me, and my reading concurred, that there was nothing I could do to alleviate the condition.  All I could do was manage the itching and everything would immediately get better once the baby was born.  As a firm believer in at least trying to make my situation better, though, I did a bunch of research from less-Western-medicine-centric sources, talked with a lot of knowledgeable people, and listened to my body.  (I have to admit that desperation and my need to feel that I really was doing SOMETHING to help played a role here.)  So while I was submitting to weekly NSTs (asking the baby to move as quickly as possible and telling it that everything would be okay and that there really was a reason for this), quick ultrasounds, etc, I was also participating in my own regimen to bring my liver and gallbladder back to health.  

Let me stress again that I am not a doctor.  I don't have any medical training.  I made these choices based on what knowledge I had at the time; just as I recommend against taking a doctor's word as the Word of God, I strongly recommend against taking mine as gospel either.  Think for yourself, and do so with the realization that ICP is NOT something to mess around with.

That said, here's what I did.  

• Water -- in addition to spending a lot of time in water to alleviate my itching, I drank copious amounts.  At least 1-1.5 gallons per day.  I would put a gallon in the fridge (well, my husband would; I was encouraged not to pick up anything that even pretended to be heavy) in the morning and it HAD to be empty by nightfall.  It was my theory that the more water the better (within reason, of course), since my body needed help cleansing and removing waste.
• Diet -- thank goodness my Mom came to stay with us for the last part of my pregnancy, since my bedrest went from modified to fairly strict and since our then-3-year-old was close to losing it because his mama couldn't play with him in any sort of active fashion.  In addition to making our lives work much better (and being here with our older son when we transferred to the hospital for Theodore's birth), she also took over the cooking.  We ate only organic food (not a dietary change -- that's all we ever eat!), ovo-lacto vegetarian, with lots (lots lots lots) of greens -- salads, steamed chard, etc.  Minimal fats, minimal oils (and what oil she did use was olive oil, nothing else).  Countering that, though, I did eat seeds, nut butters, the occasional bits of cheese (especially cottage cheese), tofu, and beans for protein, all organic of course.  I felt it was important to try to eat something that would give my bile acids something to do, and important to continue eating nutritiously.  No sugar, minimal processed grains, really my diet focused on greens, beets, carrots, and on getting protein with useful EFAs.  A recommendation I was given too late to be helpful was artichoke leaves; I'm still not sure WHY they would help, but I figure it couldn't hurt.
• Supplements -- throughout my pregnancy I had been taking vitamins from Usana (purchased from  my mom).  I took their Essentials, Proflavanol (a mix of antioxidants), EFAs in liquid or capsule form depending on my stomach's tolerance level, calcium, and vitamin C.  With the ICP I increased my dosage of Vitamin C and Proflavanol, and was more diligent about actually taking my vitamins the recommended three times daily.  I think these are really good supplements, and they do seem to make a difference for me in everyday life so I figured they would probably help my body be in a position to deal with the ICP as well.  I also took acidopholus powder daily; make sure to get a quality, live version though.  Evening Primrose Oil has also been mentioned as helpful, but I didn't take it because I believe it's also associated with cervical toning and I really didn't want my cervix to do anything but stay closed!
• It may sound silly, but I did a lot of talking with the baby and with my body, visualizing health and wellness, etc.  Again, I do think it made a difference even if it was only in my state of mind.
• Herbal choices -- here's where I did the most research and had the most help. 
  •  I highly recommend Trilight Herbs' LivCare (I linked to the large size because if you're planning on taking it long-term, like I did, you'll want a lot.  It's worth it.).  This formula contains Sarsaparilla Root, Dandelion Root, and Burdock Root.  (When I was taking it the formula also included chamomile; I'm not sure why it no longer does.)  Although LivCare isn't listed on their list of pregnancy-safe preparations, I was satisfied that it was fine for use in the last trimester.  Talk to them or do the research yourself, though -- don't take my word for it.  Warning -- when you're taking this stuff by the teaspoon, multiple times a day, it tastes LOUSY; their glycerine base is sickly, syrupy sweet.  It's worth it, but ewwwww! (One possibility, which I never tried, is to use it as a sweetner in iced tea or lemon water; I'll bet that would work well, especially if you're drinking your red raspberry leaf tea like you're supposed to! :)
  • I also took several herbal tinctures; the ones I chose are manufactured by Kerry's Herbals since I know her and am satisfied that her products are high-quality and well-priced (and she uses organic alcohol in the alcohol-based tinctures, which is a plus for me).  I took the maximum recommended dosages of her Iron Tonic tincture (Yellow Dock root, Dandelion root, and Nettles) and Milk Thistle Tincture daily (I would pour a cup of boiling water and add my tinctures to it; the hot water would evaporate most of the alcohol from the tinctures, and then I'd sip at my "tea" throughout the day).  I also took her valerian tincture when my contractions showed no signs of stopping; that's not a recommended usage, but I personally felt it safer than Terbutaline or preterm delivery.

I'm not saying what I did would work for everyone, but it did work for me -- I got steadily better (as measured by the results of weekly blood tests that my OB at first had thought were unnecessary and the results of which he was continuously surprised by), and by the time we called to say I was in labor they were just about to call to tell me we no longer needed to induce labor because I was all better!  Here's how my bloodwork changed.  Bearing in mind that it usually took a week to get the results, the 5/28 test was the one which indicated that I had ICP.  My ALT increased the next week, which led to a consult with a hepatologist who agreed that it was a bit odd but nothing to worry about as long as I didn't get significantly worse over the next few weeks and  get better once I gave birth.  The results of the 6/24 test had just come in, showing all numbers except alkaline phosphatase (which they weren't worried about, and which I believe naturally increases in the third trimester) were normal, the day Theodore was born (at 37 weeks, 5 days gestation).

Personally, my experience with ICP gave me more confidence in my body and its ability to heal itself, and somewhat less confidence in the medical professionals, who were stunned that I had gotten better before delivery but couldn't imagine how anything that I'd done could have made a difference: "it must've been just a lucky fluke,"  I'm pretty convinced it was more than that. :)

There is a lot of information about ICP available, both online and in various medical journals.  Although some of it is contradictory and much is frustrating, I found that it helped to know what I was dealing with.  ICP has a fairly chance of recurrence in subsequent pregnancies; if and when we do decide to have another child, I will be doing things to enhance my liver and gallbladder's health starting before we conceive and continuing until my baby is born.  Hopefully that will be enough to prevent another itch-filled pregnancy, but if it isn't I will at least have some ideas of how to handle the situation.

If you have any questions or comments, please feel free to contact me; I can be reached at icp at quotidian.com (delete the spaces and replace the "at" with the @ sign -- just my little effort to reduce the amount of automated spam I get!).  Good luck!