Pregnancy and inflammatory bowel disease

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Most women with inflammatory bowel disease (IBD) have a normal pregnancy and deliver a healthy baby.

Active disease is more of a risk to a normal pregnancy than most medications. If you are planning for pregnancy, you should discuss the potential risks of IBD and pregnancy with your Inflammatory Bowel Disease Team. They will be able to help you make changes to improve outcomes, such as taking high0dose folic acid before you become pregnant.

If you are already pregnant, you will need to have regular medical visits and follow a set treatment plan. This will be organised by the IBD and pregnancy specialist staff. It is important that you are also regularly monitored by an obstetrician, to monitor your baby’s growth, as well as a gastroenterologist to check for signs of an IBD flare, due to the unpredictable nature of the disease.

If your pregnancy is unplanned, you should continue to take all medication (except methotrexate) until you have talked with your gastroenterologist. Please contact the helpline as soon as possible. Some GPs and even some obstetricians may be unfamiliar with managing IBD in pregnancy. Please check with your gastroenterologist, who can then discuss your case with the team of doctors involved in your pregnancy.

How can I prepare myself for pregnancy?

Keeping your disease under control before conception and throughout your pregnancy will help ensure the best outcome for yourself and your baby. If you are thinking about starting a family, now is the time to invest in your own health as much as possible. This would be a good opportunity to discuss your current lifestyle with your specialist and IBD nursing team, to see how you might be able to further reduce your chances of having a flare. For example, it is extremely important to take your medicine on time and to avoid triggers, such as stress. It is very important that you take the best possible care of yourself to maximise chances of a healthy pregnancy.

There is no evidence that ulcerative colitis or inactive Chron’s disease (CD) affects fertility. If you have inactive IBD, you are likely to be just as fertile as someone who does not. However, active CD, previous surgery involving the pelvis (e.g. pouch surgery), or a past complication such as a pelvis abscess, may reduce your fertility.

It is important that your IDB is under control. We will help you monitor this by assessing your symptoms, carrying out blood tests and possibly performing an endoscopy, to maximise your chance of becoming pregnant. Any woman planning a pregnancy should try to eat as healthily as possible. This also applies if you have IBD. You may also need to have blood tests to check your vitamin B12, vitamin D, folate and iron levels are normal. These nutrients should then be replaced, if necessary. Your GP should be able to prescribe you supplements, if needed.

When planning a pregnancy, it is generally recommended to take a higher dose of folic acid (5mg once a day). It is also important to stop smoking and avoid alcohol before and during pregnancy. Before becoming pregnant, you may also wish to discuss a plan for the medications you will take during your pregnancy with your specialist. This will help you to feel comfortable that you know about any changes and will give you time to assess your options, together with your specialist.

Most drugs used in IBD appear to be low risk in pregnancy. The benefits of continuing with medication in pregnancy outweigh the potential risk to the baby. The exception to this is methotrexate, which should be stopped for about six months before you try to conceive, as it can cause birth defects.

All prescription, non-prescription or herbal medications should be reviewed by a doctor if you discover you are pregnant, to check whether they are safe. If you have any specific questions about drugs for IBS (Mesalazine, Azathioprine, Mercaptopurine, Methotrexate, Steroids, Cylosporin, Adalimumab, Infliximab, Golimumab, Vedolizumab, Ustekinumab or Tofacitinib) you should discuss these with your gastroenterologist.

What are the effects of IBD medication on fertility?

There is no evidence that medication for IBD affects fertility in women.

In me, sperm quality may be affected by sulfasalazine or methotrexate. The effect of sulfasalazine is reversed once the drug is stopped. Methotrexate can also cause a low sperm count, which improves within a few months once the drug is stopped. Azathioprine does not appear to effect sperm count or quality.

What is the risk of my child developing IBD in the future?

The risk of your child developing IBD because you have IBD is low. It would be approximately 5% over the child’s lifetime if you have Chron’s and approximately 2% if you have Ulcerative Colitis.

It is extremely uncommon for both parents to have IBD; so exact estimates in these circumstances are hard to come by. However, in this situation, the chance of a child developing IBD at some stage in their life is higher than if only one parent has the condition. The way in which your child is born (vaginally or by caesarean section) does not affect their risk of developing IBD in the future.

What might be the effect of pregnancy on my IBD activity?

If your IBD is inactive, the risk of relapse is the same as for those who are not pregnant (30% chance of a flare over the course of a year). Studies show that if IBD is inactive at the time of conception and during the pregnancy, this will allow for the best outcomes for both you and your baby. Becoming pregnant when your IBD is active can increase the risk of having an active disease during your pregnancy. If you do develop a flare during your pregnancy, the management of it will be very similar to when you were not pregnant.

Pregnancy increases the chances of blood clots in the legs (deep vein thrombosis, also known as DVT) or the lungs. Active IBD is also a risk factor for DVT, so if you are having a flare in your IBD, you may be asked to take medication to thin your blood and reduce the risk of clots. This medication does not carry an associated risk to the baby. After pregnancy, you may find your IBD is more manageable than before.

What is the effect of IBD on the baby?

Most babies born to mothers with IBD are normal and healthy. Although most babies born to women with IBD are healthy, if you have Chron’s disease you may have a higher risk of delivering early (prematurely), and having a baby with a low birth weight. The most important reason for problems developing is having an active disease during your pregnancy.

For babies born to term, there does not seem to be an increased likelihood of complications, such as infections.

How safe is IBD medication in pregnancy?

Most medications, except methotrexate, are considered to be of low risk during pregnancy. The most important priority is to maintain your health. As you can imagine, the safety of medications during pregnancy has been vigorously discussed over the years, but reported studies have had conflicting results. Controlled trials of treatment are unethical during pregnancy, so most of the available data is taken from reviews of medical records.

Nevertheless, these reviews still provide important information for medical practitioners and patients. Product information leaflets that come with medication will always caution against use during pregnancy or breastfeeding without medical advice. This is the default position of pharmaceutical companies. Most specialists agree that mothers-to-be should continue with their maintenance medication, to keep disease under control.

Is endoscopy safe in pregnancy?

Both colonoscopy and sigmoidoscopy are considered to be low risk during pregnancy.

Colonoscopy (which involves a laxative bowel preparation and a ;look around the whole colon) is generally avoided during pregnancy, despite reports that it can be performed safely.

Flexible sigmoidoscopy (which simply requires an enema and look at the rectum and lower part of the colon) is considered low risk, with or without sedation, and does not increase the risk of miscarriage.

Are imaging tests safe in pregnancy?

Occasionally, imaging tests (such as scans and X-rays) may be arranged to help assess your IBD activity. Ultrasound and MRI scans are considered to be low risk (though in practice, MRI, especially in the first trimester is generally avoided if possible), whereas test, which involve radiation (X-rays) such as CT scans and barium studies, should generally be avoided where possible.

What is the effect of pregnancy on ileostomy or pouch function?

If you have had surgery, you may have an ileostomy/stoma (bag) or ileo-anal pouch. Pregnancy in women with a stoma or pouch generally proceed without problems but we would need to plan with you the best way of delivering your baby. You will also need to make sure you stay well hydrated and your bowel movements are regular.

Approximately 30% of mothers with a stoma (30 in 100) experience increased bowel frequency when pregnant. If you have a pouch, you may find that your pregnancy temporarily affects your continence (ability to ‘hold in’ faeces or urine). These are simply the physical effects of the stoma or pouch being squashed by the growing baby – they usually get better after delivery. Make sure you keep up a good fluid intake throughout your pregnancy, especially if you are sick at any point.

What is the effect of smoking and alcohol on pregnancy and on IBD? 

Smoking and alcohol are harmful to the baby. They may cause low birth weight and increase the risk of deformity and miscarriage. Smoking can increase the risk of a flare in Chron’s disease, as well as the risk of blood clots. If you smoke then you should stop, for your own health and that of your baby.

What is the follow-up process like during pregnancy?

It is important that your pregnancy is managed by a team of specialist practitioners, including obstetricians, obstetric physicians, midwives, gastroenterologists, clinical nurse specialists, your GP and, if relevant, a colorectal surgeon. This team of specialist practitioners will be able to discuss with you the effect of IBD on pregnancy, delivery and care after delivery. This will help you to achieve the best possible outcome for your pregnancy.

You should have an outpatient review by a gastroenterologist within three months of becoming pregnant, a few weeks before delivery and shortly after delivery. You will be able to discuss any decisions that may affect you or your baby with your gastroenterologist and obstetrician. You may need extra visits if you have symptoms of a flare of IBD (diarrhoea, abdominal pain or rectal bleeding).

Regular review by the obstetric team is important, to monitor your baby’s growth. You may be offered additional appointments, scans or other care to help monitor and support you and your baby during pregnancy.

What is the best way to give birth?

Your gastroenterologist, obstetrician and/or colorectal surgeon will discuss with you whether you should aim for a natural delivery (vaginally) or caesarean section.

The different options for delivery need to be discussed, as the pelvic floor muscles used to help deliver naturally are also important for stool continence. This is particularly important if you might need surgery (such as pouch) in the future.

Caesarean sections should only be carried out when there is a medical reason to do so. You are likely to be recommended to have a Caesarean section if you have active Chron’s disease in your rectum or anus, an ileo-anal pouch, or ileo-rectal anastomosis. This is done to minimise the risk of damage to your anal sphincter and perianal area, as these affect your continence.

We will also recommend a caesarean section if you are likely to need surgery in the future. This might be because you have had a troublesome course of colitis. Your IBD specialist obstetric physician and colorectal surgeon (if necessary) will discuss this with you.

The decision of how to give birth appears to be more important for the first baby than subsequent pregnancies. If you have had a successful vaginal delivery before, you are likely to be able to have another vaginal delivery, if there are no medical reasons not to.

During a natural delivery, we may need to carry out an episiotomy (a cut made to the perineum to help with delivery). However, we will try to avoid doing this, as the perianal area may be affected, although this is likely to be a better option than an uncontrolled tear. The decision of whether to carry out an episiotomy will be made based on the circumstances of your delivery.

What will happen after delivery?

It is important to continue with your medication after you have given birth, as this will reduce the possibility of relapse. This will allow you the time to enjoy the new experience of motherhood without the distraction of active disease. You will have an appointment in the IBD clinic six weeks after your deliver, to check how your IBD symptoms are.

Is breastfeeding safe while taking medications for IBD?

Breastfeeding is the preferred method of feeding and does not impact the course of IBD. The benefits of breastfeeding far outweigh the risks for most medications. However, it is best to discuss the safety of taking IBD medications when breastfeeding with a gastroenterologist. Mesalazine medication can be taken during breastfeeding.

Prednisolone appears in low concentrations in human breast milk. To minimise exposure, you should wait for four hours after taking this medication, before breastfeeding, but this may not always be practical.

Azathioprine and mercaptopurine appear in tiny amounts in breast milk in their metabolised form, but haven’t been found in the circulation of breast-fed babies. Consequently (and despite the advice on the product information leaflet for mercaptopurine), the benefits of breastfeeding can generally be considered to outweigh the risks of exposing the baby to such tiny amounts. Infliximab, Adalimumab and Golimumab can pass through into breast milk in very small amounts, but they are proteins and will normally be digested. To date, there is no information to suggest any ill effects to the baby.

Vedolizumab is likely to be passed through into breast milk in very small amounts, but currently there is no information to make recommendations about its safety. If you have taken Vedolizumab during your pregnancy, it is likely that the benefits of breastfeeding will outweigh any risks of ingestion of Vedolizumab by your baby. This is because Vedolizumab, like adalimumab or infliximab, is a protein that will be digested.

Ustekinumab can also be detected in small amounts in breast milk of mothers treated with ustekinumab, however it is a protein and therefore will be digested by the infant and not absorbed through the gastrointestinal tract.

Neither ustekinumab or other biologic agents had an adverse impact in infection rates or 12 month milestones of babies breastfed compared to those who were not.

Tofacitinib is a small molecule rather than a protein, so it will not be digested by the babies gut. There is no data on the excretion in human breastmilk. Animal studies have found it present in the milk of lactating animals. It would be sensible to review the latest data with your team prior to making the decision to breastfeed whilst taking tofacitinib. Metronidazole and ciprofloxacin are passed over into breast milk and should be avoided where possible.

However, you should discuss individual concerns with your IBD specialist and obstetric physician, as it may affect whether your baby can have their scheduled vaccinations.


Contact details

If you would like to speak to someone in the Inflammatory Bowel Disease team, please use the contact details below:

phone: 01908 996 955

email: [email protected]