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If you have Inflammatory Bowel Disease (IBD) and are thinking of having a baby, you may be concerned about how your condition might affect your pregnancy. You may also be worrying about whether having a baby could affect your IBD. The good news is that the great majority of women with Ulcerative Colitis (UC) or Crohn’s Disease can expect a normal pregnancy and a healthy baby. Also, for most women, having a baby does not make their IBD worse.

However, it is important to discuss your pregnancy with your IBD team. You may need to take special care with some aspects of your pregnancy – or perhaps change your treatment slightly.

How might IBD affect my fertility?

If you have inactive IBD, whether Ulcerative Colitis or Crohn’s Disease, your chances of conceiving are unlikely to be affected by the disease.

If you have active IBD, especially Crohn’s, you may have a slightly lower chance of conceiving, particularly if you are underweight and eating poorly. Also, severe inflammation in the small intestine can affect the fallopian tubes and make it more difficult to get pregnant.

Surgery for IBD, especially ‘pouch surgery’ (an ileo pouch-anal anastomosis operation), can affect fertility, so if you are planning a pregnancy you may wish to discuss this with your specialist. You may also be advised to wait a year after other types of IBD surgery to give your body more time to recover.

Most of the drugs prescribed for IBD do not affect fertility, but there are a few exceptions. For example, sulphasalazine, a 5-ASA medication, is known to reduce fertility in men. However, this effect is only temporary and there are good alternatives, such as mesalazine, that can be taken instead. Sulphasalazine does not affect fertility in women.

Methotrexate, an immunosuppressant, can also affect sperm production and quality. It should not be taken by either partner while trying to conceive, or by women while pregnant, because of an increased risk of birth defects.

Is it better to conceive while my IBD is under control?

Definitely. If you are well when your pregnancy begins, you are more likely to have an uncomplicated pregnancy. If you remain in remission your chances of a normal pregnancy and of delivering a healthy baby are about the same as those for a woman without IBD. You are also more likely to remain well yourself during your pregnancy if your symptoms are under control when you conceive.

This is why most doctors will advise women with IBD who are thinking of getting pregnant to try and get their IBD under control first.

What if I have a flare-up while I am pregnant?

If your disease is active when you conceive, or you have flares during your pregnancy, you may be more likely to give birth early or have a baby with a low birth weight. But, your doctor should be able to help you bring your symptoms under control – and many women who conceived while their IBD was in an active phase have gone on to have successful pregnancies and healthy babies.

Severe active Crohn’s Disease or a very severe flare-up of Ulcerative Colitis may put the baby at greater risk. So, if your IBD symptoms begin to get worse, consult your doctor or IBD team as soon as possible.

Should I keep taking my medicines while I am pregnant?

In general, the evidence suggests that active Crohn’s or UC may do more harm to the growing baby than most IBD medicines. So most women will be advised to continue taking their IBD medication during pregnancy. This is particularly important if you have had a recent flare-up and are trying to get it under control.

However, a small number of the drugs used for IBD are not recommended or should not be used at all by pregnant women. This means that if you are, or are planning to be, pregnant, it is important to check with your IBD team whether you need to change your drug treatment. For more details on how the most common IBD drugs might affect your pregnancy see Medication in Pregnancy

What about nutritional therapy?

Some people with Crohn’s use an elemental or polymeric diet (the two main types of liquid feed) as part of their treatment. Both of these diets may be safely used during pregnancy to treat a flare up of disease or as a nutritional supplement.

What investigations or tests can I have during pregnancy?

As someone with UC or Crohn’s Disease, you may need to have an investigation or test to check on your IBD, especially if you have a flare-up. Make sure your doctor and IBD team know you are, or may be, pregnant. Some types of investigation may need to be delayed until after you have the baby.

MRI and ultrasound tests are safe to have while pregnant. Sigmoidoscopy and colonoscopy are also usually considered safe in pregnancy, although guidelines suggest that these types of tests should only be carried out when they are clearly necessary.

Investigations which involve x-rays and radiation should normally be avoided by pregnant women unless absolutely essential. This includes CT scans, PET scans, and barium X-ray tests.

What about surgery while I am pregnant?

Surgery for IBD is unlikely to be suggested while you are pregnant – unless it is felt that it would be riskier not to have the surgery. Studies have suggested that if you do have IBD surgery when pregnant, the risk is lowest if the surgery is carried out during the middle trimester (months 4-6) or if this is not possible, towards the end of the pregnancy.

How can I increase the likelihood of having a healthy baby?

For women with IBD it is worth keeping in mind that if your disease is under control while you are pregnant then the baby is more likely to be healthy. So it is important to follow your treatment plan and to ensure that you are as fit as possible before and during your pregnancy. Talk to your doctor or IBD team if you have any worries about how to manage your IBD while pregnant. In particular, tell your doctor if you have a flare up of your IBD or are failing to gain weight as expected.

Diet

For any pregnant woman, a balanced and varied diet with sufficient calories, vitamins and minerals is important for the growth of their baby.

Having IBD, the increased nutritional needs of pregnancy may mean you need to supplement your diet, especially if you are underweight or have active disease. You may find it helpful to talk to a dietitian or your IBD team about this.

Extra folic acid might be suggested. All pregnant women are now recommended to take a folic acid supplement for the first 12 weeks of pregnancy to help reduce the risk of the baby having problems such as spina bifida. The usual recommendation is 400 micrograms a day. This can be particularly important for women with Crohn’s of the small intestine, as this condition can make it more difficult to absorb folic acid. Sulphasalazine also reduces folic acid absorption. If you are on sulphasalazine or if you have had surgery to remove part of the small intestine, it may be suggested that you increase your folic acid supplement to 2 mg (2000 micrograms) a day. Check with your doctor what level of folic acid would suit you.

If you take steroids, calcium and vitamin D supplements can be useful to help prevent bone loss.

Iron deficiency is quite common in IBD and extra iron may be needed to meet the increased demands of pregnancy. Your doctor will be able to recommend a suitable supplement. Some iron tablets can cause constipation. You may find a liquid iron supplement avoids this problem.

If you have Crohn’s Disease and have had surgery to remove the terminal ileum (the end of the small intestine), you may also need regular Vitamin B12 supplements to prevent anaemia.

Alcohol

Drinking alcohol during pregnancy can seriously harm your baby’s development. The Department of Health recommends that you do not drink any alcohol while pregnant, especially during the first three months as it may increase the risk of miscarriage.

Exercise

Regular moderate exercise can help to keep you healthy and is important in pregnancy. Gentle exercises such as walking, yoga and swimming can be particularly valuable.

Smoking

Smoking when pregnant is known to harm the baby. It leads to low birth weight with a higher risk of deformity and miscarriage. It can also increase the likelihood of blood clots during pregnancy.

For women with Crohn’s Disease, smoking can be especially risky. Research has shown that smoking may make Crohn’s symptoms worse and increase the chance of a flare up.

If you have Ulcerative Colitis, the likely effect of smoking on your own health is less clear. There is some evidence that people with UC who smoke tend to have milder symptoms. However, this does not mean that smoking will necessarily improve your UC – and it could cause the same direct damage to the baby as in any non-IBD pregnancy. The consensus among health professionals is that whatever type of IBD you have smoking is not recommended.

Will pregnancy make my Ulcerative Colitis or Crohn’s Disease worse?

For most women, having a baby does not lead to a worsening of their IBD. Some research has even suggested that it may have a positive effect on the disease process in the longer term. For example, several studies have found that women with IBD had fewer relapses per year after having children than before they got pregnant.

How your IBD is likely to behave while you are pregnant appears to depend at least partly on how active your disease was when you started the pregnancy.

If you conceive when your IBD is in remission (inactive) you have a good chance of staying in remission. Studies have shown that about one in three women with UC who conceive while their disease is inactive will have a flare up during their pregnancy. This is a very similar rate of relapse to that for non-pregnant women with UC over nine months. The rates for women with Crohn’s Disease are also very similar.

If you conceive while your disease is active you may find that your symptoms remain troublesome during your pregnancy. For some women, flare ups may become more acute, especially during the first three months. Others may find that their symptoms improve as their pregnancy progresses.

What will happen in future pregnancies is also difficult to predict. If your IBD becomes active during a pregnancy there is no evidence to suggest that it will do so again in future pregnancies. Similarly, if you do not have a flare up during your pregnancy, unfortunately this is no assurance that the disease will remain inactive in later pregnancies.

What sort of delivery should I have?

In most cases, a normal vaginal delivery should be perfectly all right. However, a caesarean section may be recommended by your medical team if you have severe or perianal Crohn’s Disease.

You may also be advised to have a caesarean if you have an ileo-anal pouch. This is because there is some evidence that a vaginal delivery may lead to an increased risk of faecal incontinence, although other studies suggest this risk may be lower than previously thought.

A recent survey among women with IBD who did not have a pouch also found that about one in 10 reported problems with faecal incontinence following a vaginal delivery. On the other hand it may be worth considering that a vaginal delivery avoids surgery and its possible risks.

If you do opt for a vaginal delivery but also have scar tissue around your anus, your doctor may advise an episiotomy (a cut at the opening of the vagina) to prevent tearing.

Talk to your gastroenterologist or obstetrician about your own preferences and about any worries you may have.

What about my ileostomy?

Many women with ileostomies have a normal pregnancy and delivery. Your stoma may change shape and become larger as your abdomen expands. It will usually return to normal after the delivery. Occasionally the enlarging uterus can temporarily block the stoma. A change of diet may help – your stoma nurse should be able to advise you on this. You may also find there is an increase in output from your stoma during the third trimester of pregnancy. This too should resolve itself after the birth.

Most women with a stoma should be able to have a vaginal birth, but sometimes a caesarean section may be necessary.

I want to breastfeed. Will my medicines do any harm to the baby?

Breastfeeding is important for the development of a healthy immune system, and is generally recommended.

There is no evidence that many of the drugs used to treat IBD are harmful to a breastfed baby, although very few are actually licensed for use while breastfeeding. This may be because little is known about the drug’s long term effect, or because the drug companies are cautious about conducting trials with breastfeeding mothers. So, they prefer to advise against any use of their medications while breastfeeding. If you would like to breastfeed, talk to your doctor and your IBD team about any possible problems from your medication.

• Based on past experience, the 5-ASA drugs such as mesalazine and sulphasalazine are considered by doctors to be safe while breastfeeding. Research has shown that they are transferred into the breast milk, but in very low concentrations.
• Steroids such as prednisolone also appear in low concentrations in breast milk. Again they are generally considered safe, although if you are taking large doses of steroids (over 40mg a day) breastfeeding is not recommended. You can reduce the effects of steroids by waiting for 4 hours after taking a dose before starting to breastfeed.
• Some doctors would not advise breastfeeding by mothers on azathioprine or mercaptopurine, but very little of the active drug is secreted into breast milk. Also, there is no evidence of harm in children of mothers who have breastfed while on these drugs. Thus the benefits of breastfeeding may outweigh any small potential risk.
• Recent studies have suggested that infliximab does not pass into breast milk and that it may be safe to breastfeed while taking this drug. Evidence about adalimumab’s safety is still very limited. The long term effects of these drugs on a child’s developing immune system are also still unknown. Most doctors still recommend that you do not breastfeed during treatment with these medicines or for six months after your last dose.
• Breastfeeding is not advisable if you are taking ciclosporin, methotrexate, mycophenolate mofetil, or tacrolimus. It is also better not to breastfeed while you are on antibiotics such as ciproflaxacin or metronidazole, or the anti-diarrhoeals, loperamide and diphenoxylate.

What are the chances of my child having IBD?

Parents with IBD are slightly more likely to have a child who develops IBD. If one parent has IBD, the risk of a child developing IBD is about 2% for Ulcerative Colitis and 5% for Crohn’s Disease, although it may be higher in some population groups. That is, for every 100 people with UC, about 2 of their children might be expected to develop IBD at some time in their lives. For every 100 people with Crohn’s, about 5 of their children might be expected to develop IBD. If both parents have IBD, the risk can rise to 35%. However, we still cannot predict exactly how IBD is passed on. Even with genetic predisposition, other additional factors are needed to trigger IBD.

© Crohn’s and Colitis UK 2015