Starting a family while battling an IBD might seem more than daunting. Not only do you fear passing down your disease to your children like a morbid family heirloom but you also wonder if you could even bear children at all.

Maybe you had abdominal surgery and you read all over the internet that it can lower fertility rates in both men and women. Maybe you have a permanent stoma and you wonder how that can work with your expanding midsection during pregnancy. Or maybe you fear the drugs you’re taking can pose a significant risk to a baby, yet at the same time, you can’t discontinue them.

Whatever your concerns are, we at FindMeCure are here to answer your questions to the best of our knowledge. Though there is not enough research yet to draw definitive conclusions, there are some studies that suggest carrying out pregnancy is not an impossible goal for someone with an IBD.

In fact, with enough monitoring, a trained health care team of specialists, and the right mindset many women who live with IBD can have a normal pregnancy and a healthy baby. Here are some things you might want to consider before you approach the topic with your primary physician.   

Will I pass my IBD to my child?

It’s not a resounding ‘no’ but the risk is really not that concerning. While yes, researchers have found a link between genetic factors and IBD, the impact of the environment is not to be underestimated. In a study done with identical twins, in only half the cases both of the twins developed IBD, though identical twins share the exact same genetic information.

This is what the risk looks in numbers, according to what researchers know by now: the risk for a child of a mother who has Crohn’s disease is about 2.7%, for ulcerative colitis the number is 1.6%. There are not enough studies to conclude what the absolute risk is for a child if both parents have IBD, though some research suggests it’s greater than 30%.

However, heredity is low enough that the chance of having a healthy child that never has to know the reality of living with an IBD is something you have on your side if you’re considering starting a family.  

Does IBD affect my fertility?

It really depends. Fertility rates of people in remission or those who experience low disease activity are similar to that of the general population. However, a flare-up, active disease symptoms or other IBD-related complications can, sometimes temporarily, lower fertility.

The human body is very smart. If you’re under intense distress, creating a new life is not among your body’s priorities because it takes your experience to mean that conditions are not sufficiently accommodating. If you are planning on having a baby, remaining in remission for 3-6 months prior to conception should be your number one goal. During this time your fertility is at its best and remaining in remission during pregnancy is much more likely.

Certain IBD-related complications, however, can permanently reduce fertility rates. As you have probably guessed, abdominal surgery is among them. It’s not the surgery in and of itself that can cause difficulties, but rather some possible complications of surgery that you can check for in advance.

For example, scar tissue in your pelvis can obstruct the fallopian tubes or it can even stick to the uterus making implantation of a fertilized egg harder. Complications resulting from surgery, however, can be taken into consideration when discussing family planning with your doctor and together you can look into the options.  

Am I in for a high-risk pregnancy?

Conceiving during a flare-up is not advised, to say the least. However, if you do accidentally get pregnant while disease symptoms are active, don’t lose all hope. There is no accurate estimation of the percentage of women whose symptoms worsen as opposed to improve during pregnancy.

You’ll probably read that the general rule states one-third of pregnancies that begin during a flare-up display consistent symptoms. The truth is, there is not enough research on IBD pregnancy, especially those that happen during a flare-up, to estimate your chances.

There is a good saying that you might find comfort in that goes along the lines of “Statistics don’t matter to the individual”. While we at FindMeCure rely on facts and numbers, we’d rather you be prepared for what could happen – even if two-thirds of pregnant women report symptoms that either subside or remain the same, we’d rather you plan for the unexpected.

IBD pregnancy is often treated as a high-risk pregnancy and it requires monitoring. Even if you’ve been in remission for the past 6 months, you and your health team should have a strategy in place in case the disease becomes active during your pregnancy.  

What happens if I flare up?

If you conceived while you were in remission, there is some research that suggests the likelihood of your disease suddenly becoming active is rather low. As we said earlier, though, statistics don’t matter to the individual. So, what do you do if you unexpectedly flare up during pregnancy?

The good news is, response to treatment during pregnancy is no different than that of non-pregnant people. In other words, should you flare up while growing a baby, your response to treatment is not going to subside.

The general rule is, avoid abdominal surgery during pregnancy unless there is no way around it. If your symptoms significantly worsen, you and your doctor should try getting them under control with medication first and schedule surgery for after the baby is born. However, if postponing surgery is not an option, you should know that with recent medical advancements, such surgery can be performed safely during pregnancy and a baby’s chances are improving as medicine is making progress.

However, you should know that there is a statistically significant risk of having a premature baby or a cesarean birth if you experience a flare-up or disease activation during the better part of your pregnancy.

Regardless of disease activity, preterm births and low-weight babies are a consistent risk for moms with IBD. Birth defects, however, are no more frequent in IBD pregnancies compared to the general population, provided adequate medical care is a consistent part of the pregnancy.   

Should I discontinue my medication?

No, not unless your medical team has a solid reason to believe your disease won’t become active again. If your symptoms were hard to get under control or you were unresponsive to treatment up until you and your team found that one thing that did the trick, it might not be a good idea to stop taking this medication.

We know what you’re thinking – you could put up with anything, any pain, discomfort, and risk as long as the baby is healthy. A major flare up, however, can pose a greater risk to the baby than IBD drugs do.

When it comes to IBD treatment, there is no ‘zero risk’ medication. Low and moderate risk drugs are what expecting mothers usually take but if symptoms worsen significantly, more high-risk treatment could be an option.

Remember that in order for your baby to be healthy, you must be healthy first. Refusing treatment might lead to a negative outcome such as an underdeveloped baby. Though recent advancements have improved the odds of premature babies, preterm birth can sometimes lead to more health complications than a moderate-risk IBD treatment.   

Can I breastfeed my baby?

It’s very likely that you can. Although more research is needed to draw definitive conclusions, what we know about IBD drugs seems to suggest that a lot of them are safe during pregnancy and breastfeeding.

5-ASA compounds such as Asacol®, Pentasa®, Rowasa®, Canasa®, Lialda® appear to be safe for breastfeeding, unlike corticosteroids which require additional monitoring and are generally not recommended during pregnancy. The risks of certain drugs should be weighed against the urgency of putting symptoms under control.

If high-risk drugs are unavoidable, it would be better for your baby to have a healthy mom who can be present with them than to be nursed at your expense, and you should never feel less of a mother for taking care of your health first.

The important thing to remember is that with the right planning and adequate care from your team a healthy pregnancy while living with an IBD is not out of reach. As research gets better at understanding IBD, safer and more effective patient-oriented treatments are available, so that patients can live their lives to the fullest.

Tune in next week when blogger and expecting mom Jenna Farmer from A Balanced Belly will share her perspective and advice on IBD pregnancy.

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