This isn't as universal a post as my other stuff, but hopefully it will be helpful to those who find it relevant. This is directed at mothers or would-be mothers with Ulcerative Colitis or Crohn's Disease.
When I was pregnant with my son, I didn't realize how much my (then latent) Ulcerative Colitis would affect my pregnancy, delivery, and recovery. The information online is patchy at best, and every doctor seems to have differing opinions on how to treat UC or Crohn's in pregnant and breastfeeding patients, or in those who are trying to conceive. It was difficult to put everything together, and there is a lot of bad information out there. I was going to put this all in one post, but it's too much. This post is about medication. See Part 2 about additional concerns during pregnancy and breastfeeding.
I'm not a doctor. This is the internet. Don't be stupid. Talk to your doctor about the best courses of treatment for your disease, and work with your doctor to assess the risks and benefits of any treatment.
Q: "Should I take medicine for my IBD while pregnant/breastfeeding?"
A: Work with your doctor(s). Flaring while pregnant or lactating isn't good. If you're pregnant, being malnourished can harm your baby. If you're lactating, it can severely impact your supply and your ability to be a good mommy. Don't neglect your own health because you're afraid of the medication. Try non-medical stuff, but don't end up in the hospital (like I did) because you fear the necessary medications.
ALL ABOUT THE MEDS
I'll start here because it tends to be the thing weighing most on mommy minds. Let's start with the safest ones, then go up from there.
Safe(r) for Pregnant and Lactating Women
If you're not already taking these, I highly suggest that you start. There have been numerous studies that show a strong positive relationship between IBD remission and the use of probiotics. You can start simple - Kefir (sold at your local grocery store) has high levels of "good" bacteria. Many folks make their own.
For supplements, the "top dog" is VSL#3, which is available online. Alternatively, you can try Acidopholus, available at your local pharmacy or health food store. Get the highest count you can, and keep the pills refrigerated for longest life and potency. There are no known negative side effects to probiotics; even if they don't work for you, there is no risk in trying.
I have done a good amount of research, and found that vitamin D deficiency can also contribute to possible flares. I take 1000-2000IU of additional vitamin D in the summer and 3000-4000IU in the winter. If you spend a lot of time in the sun, or eat a good amount of foods containing soluble vitamin D, you may need less.
Be careful to look for oils that are mercury-free. Omega-3 fatty acids can really help your digestive system stay in balance. If you're not flaring, you can get this from fish and some meats, but if you're flaring or pregnant some of these may be off limits. Fish Oils also provide DHA and EPA, which reduce inflammation and are also good for the baby's development.
You may not be able to take a "regular" prenatal vitamin (see below), but folic acid is of vital importance to your baby's health. Ideally, you should start taking it before you are pregnant.
Always a good choice. Again, there have been studies that suggest improvement in IBD with increased vitamin C, and it's also good for the baby (some studies have even shown a link between increased vitamin C and lower SIDS risks). It supports natural tissue growth and healing - you need healthy tissue and healing, right?
If you get cramps (muscle, stomach, whatever), potassium can really help. Flaring IBD can inhibit your body's natural processing of potassium, so you should pay special attention to this if you have diarrhea or vomiting as a regular symptom. You can either take a supplement (I did), drink potassium-rich drinks (I kept a bottle of Gatorade in the bathroom; every time I ended up in there, I'd drink it), or eat potassium-rich foods like bananas, avocados, and potatoes.
Prenatal Vitamins - proceed with caution.
Many women with IBD are sensitive to the increased Iron in prenatal vitamins. You may want to consider an iron-free multivitamin or a combination of other vitamins rather than standard prenatals. There's a lot of (usually good) stuff packed into a prenatal. I personally found it better to take everything seperately than in one package. Less convenient, certainly, but easier on my system. I find that I am very sensitive to all of the metals (zinc, copper, sometimes magnesium).
This could be really long, but I'll keep it short. Most doctors say diet doesn't have much to do with IBD. Pretty much every patient I know wildly disagrees with their doctor on this matter. Frankly, I think it's ridiculous to ignore diet as a part of treatment! Personally, I'm very sensitive to sugar and white carbs, popcorn, nuts, and any oil but olive oil or butter. Other people have other things. One neat trick - right before you eat something, take your pulse. 20 minutes after eating (and relaxing), take your pulse again. If it's much higher, you may be sensitive to that food. Also notice if you feel flushed or anxious; these can also point to sensitivity. Eliminate or limit the "bad" foods and you'll feel better.
PRESCRIPTION MEDS - LOW(ER) RISK
Many medications for UC and Crohn's are relatively safe during pregnancy (Category B-C).
Lower risk doesn't mean no risk. But, flaring during pregnancy is certainly something you want to avoid. You need to work with your doctor to determine what level of risk is acceptable to keep you healthy without causing risk to your baby. Healthy mommies make healthy babies.
Mesalamine - Pregnancy Category B
Rowasa, Asacol, Lialda, Pentasa, Apriso, etc.
If you have UC and it affects only your lower colon, the least dangerous (and often most effective) of these are suppositories and enemas. Ick, yeah, but because they are applied directly to the site of inflammation, very little of the drug enters your bloodstream. Lialda has the highest dosage of mesalamine per pill, at 1.2g per tablet.
Mesalamine is "bowel-specific", and even taken orally, only a small amount enters your bloodstream. It does cross the placenta, but studies have not proven any evidence of harm to the baby (note: evidence of harm does NOT mean evidence of NO harm). There have been a few studies that showed a slight risk of cleft palates, but they were not statistically significant.
Mesalamine does pass into breast milk; there is potential that it may cause loose stools in your breastfed infant if they are sensitive to the drug, but most babies do not have a problem with this.
If you are on Mesalamine as a maintenance drug, your doctor will likely suggest that you stay on it during your pregnancy and while breastfeeding.
Sulfasalazine (Azulfedine)- Pregnancy Category B
Similar to Mesalamine, this is considered another "ASA" med and has similar risks and benefits. It is often used if you (or your baby) are sensitive to mesalamine.
PRESCRIPTION MEDS - MEDIUM RISK
Prednisone - Pregnancy Category B/C
This is a love it, hate it drug. The side effects of prednisone are long, very real, and very serious - to you. Being on prednisone sucks. Flaring can suck more. Long-term prednisone use causes adrenal dependency (it's hard to get off of) and even short-term, it causes insomnia, irritability, swelling, weight gain, headaches, and a slew of other annoying, destructive, and frustrating effects.
That being said, it is probably the first thing your doctor will prescribe if you're suffering from an acute flare (bleeding a lot, really sick). It works. I sincerely hope you don't need this drug. If you do, try to get off it as quickly, safely, and carefully as you can. Prednisone should only be used in pregnancy if it is necessary, and if there is no safer alternative. Flaring is not good for you, or your baby, either. You need to carefully weigh the risks and benefits with your doctor before deciding if it is right for you. The more you have to take, and the longer you take it, the greater the risks. A 5mg dose is not the same as a 60mg dose. Your doctor should prescribe the lowest dose that will control your flare.
There is an increased risk of cleft palates in babies whose moms took prednisone during the first trimester. During the second and third trimester, there is an increased risk of low birth weight, and taking it in the third trimester has been linked to increased risk of preterm labor. Flaring IBD in the second and third trimester can also cause low birth weight and preterm labor - studies were not always able to determine if the cause was prednisone or IBD.
Prednisone can increase your risk of developing Gestational Diabetes. If you are undergoing long-term prednisone treatment, your doctor or midwife will probably have you do the glucose challenge testing several times during your pregnancy. Prednisone also decreases your ability to fight infection.
It is extraordinarily dangerous to stop prednisone abruptly. If you are on it and want off, you need to work with your doctor to taper carefully. Just stopping prednisone can cause adrenal failure and even death.
Prednisone has not actually been assigned a pregnancy category by the FDA. Some brand names are B, others are C.
Other Corticosteroids (endocort, prednisolone, cortisone etc) all have similar side effects and risks to Prednisone, but they don't always work as well. Some can be prescribed in enema form, which carries the lowest risk but also the lowest reward.
PRESCRIPTION MEDS: UNKNOWN RISK
Anti TNF Inhibitors: Remicade, Humira, Cimzia, Tysabri (aka Biologics)
These are scary drugs, big guns. If you are on them, or your doctor suggests going on them, you need to do your research. I am on Remicade, and it's right for me right now - but I'd be lying if I didn't say that it scares me to be on them. Nothing else works for me; it's either Remicade or remove my colon. Some people have chosen surgery over them. With Crohn's, it may be biologics or the hospital.
Anti-TNF inhibitors (all varieties) suppress your immune system. They all cross the placenta (when you're on them, so is your baby). There have been very few studies on how they affect babies. You will need to discuss this in depth with your doctor, ideally prior to becoming pregnant. We're delaying our try for the next baby for a few years, until I can get off Remicade, or until better studies are available.
There may be increased risk of birth defects, an increased risk of miscarriage (maybe because IBD affects your body, who knows), but ultimately, not enough studies have been done to determine if they are safe or not. I know a few people who have been on these during pregnancy and it worked out very well for them. Here are some things to check out:
On the plus side, both Humira and Remicade seem to be safe for breastfeeding. The molecules are huge and do not appear to transfer into breast milk.
EDIT: New research is ongoing, and it appears that Remicade is relatively safe during pregnancy. I am trying to get copies of these studies, but I am told that the evidence is pretty clear, and that Remicade is being downgraded to category B. The risks in smaller studies appear to be lower than the risks of corticosteriod treatment (aka prednisone). It is important to note that no long-term studies have been done; of Remicade has been linked to higher risks of certain cancers, and it is unknown if these long-term risks also pass to babies.
PRESCRIPTION MEDS: VERY HIGH RISK
Naltrexone - Category C/D (depends on brand). Known to cause birth defects, smaller risk than the meds below. May cause PPD and may disturb bonding with your baby. Does pass into breast milk and may cause developmental delays, however, it may be possible to breastfeed on this drug. More research needs to be done. If Naltrexone is on your table of options, get to know Dr. Google.
Mercaptopurine (6MP) - Category D: It says right on the label that 6MP shouldn't be handled by women who might possibly be pregnant. There may be extreme circumstances that warrant its use, but I would not personally take it while pregnant or breastfeeding in any circumstance. It causes known fetal harm, including increased risk of miscarriage, birth defects and still birth. It is also NOT safe for breastfeeding. You will have to choose between breastfeeding and 6mp - I had to give up breastfeeding to stay healthy.
Azathioprene - Category D: Again, not safe for pregnancy or breastfeeding. Causes known deformities and increases risk of fetal death. Do not breastfeed if you are on this drug.
Methotrexate - Category X: REALLY bad. MTX is used to treat ectopic pregnancy and causes early abortions. This is the "abortion pill" used in clinics. Do not take methotrexate while pregnant or breastfeeding under any circumstances. If your doctor suggests it, find another doctor immediately.
Thalidomide - Category X. Known to cause extreme birth defects. Not safe for breastfeeding or pregnancy. Also should not be used in the weeks prior to pregnancy, since it has a long life inside your body. If your doc wants you on this while pregnant, seriously question their medical license.
Metronidazole (Flagyl) - Category B, BUT.... the use of this drug in pregnancy is very controversial. The FDA has given it category B, which is a "safe-ish"category. There is evidence of toxicity in animals, but not in people. It definitely causes problems for baby mice, rabbits and rats, including cancer. It has not been shown to do harm to humans, but there is real cause for concern, and a campaign to change the pregnancy category by some doctors and patients. Breastfeeding is also not recommended on this drug - "pump and dump" for 24 hours after the last dose.
Ciproflaxin (Cipro) - Category C. Oddly enough, the research on Cipro shows less evidence of harm than Flagyl, but it's got a higher catogory. Who knows... anyway, breastfeeding is safe on Cipro. There is a slightly higher risk of joint problems in babies whose moms took Cipro.
Sedation (for colonoscopies etc): Every doctor seems to use different drugs for sedation during procedures. All of them have some risk for pregnant women. Lactating women should pump and dump for 24 hours following sedation. If you're going to undergo endoscopy or colonoscopy and want to be sedated (I'll write about that tomorrow), this is a good site to check out:
Technically, the only "safe" pain medication during pregnancy and breastfeeding is tylenol. Vicodin (hydrocodone) is sometimes prescribed if your pain gets out of control, but there are very real risks, including dependency and difficulty breathing in newborns, if taken close to delivery or for long periods of time. Other pain medications should be avoided. When my pain got really hard to handle, my doctor suggested that I take Tylenol PM - the PM is Benadryl. Really, look it up. Sleeping through pain is better than being awake for it, if you're the sort of person that gets sleepy on Benadryl.
Phew! I think I covered most of the meds. Feel free to comment or add your information! I will happily edit any misinformation (again, NOT a doctor) and add anything you believe is relevant.
CLICK HERE FOR PART 2