IBD clinic gives hope of pregnancy to people with inflammatory bowel disease

Many Australians with inflammatory bowel disease (IBD) choose not to have children because their condition could impact pregnancy. Now, a specialist unit at Royal Melbourne Hospital is providing families with the information and support they need to have children safely.

Associate Professor Britt Christensen helps run the IBD Pregnancy Clinic and says the work is incredibly rewarding.

“The best thing for me is to help these women who were hesitant to have children for fear of not being able to get pregnant or that it would be too risky,” she said.

“Following a pregnancy to a woman and having healthy babies at the end – it changes their lives. “

IBD affects 75,000 Australians

IBD typically consists of two conditions – Crohn’s disease and ulcerative colitis.

These are two permanent autoimmune diseases where the immune system attacks the intestines.

Well-managed patients can live with few symptoms but, if left untreated, the conditions can be debilitating.

Australia has one of the highest rates of IBD in the world, according to Dr Christensen, with more than one in 200 people affected.

“It causes diarrhea, increased bowel frequency and urgency, bleeding, fatigue and severe abdominal pain.”

People are usually diagnosed with IBD between the ages of 16 and 40 – their earliest childbearing age.

If the condition is in “deep remission”, women can have an uncomplicated pregnancy.

For those who have an active disease before conceiving, there is a risk that their condition will deteriorate.

Babies are also at an increased risk of being born prematurely or being born at a lower weight, which can lead to neonatal intensive care unit admission or developmental problems.

“I felt supported”

Sarah Zerbib, a mother of two, was diagnosed with IBD as a teenager.

For most of her 20s and 30s, she was in deep remission.

When she got pregnant with her first child five years ago, she wasn’t “too worried” about the complications.

The pregnancy went well, but after giving birth Ms Zerbib had a severe relapse.

“Because I wasn’t aware of the risks, it was a really big surprise,” she said.

“I got very sick.”

Before conceiving her second child, she was referred to the IBD Pregnancy Clinic at Royal Melbourne Hospital (RMH).

They made “a huge difference,” she said, helping her recover from the relapse and counseling her when she was healthy enough to try to conceive.

“I was very informed. I felt very well looked after from all angles,” she said.

Part of the IBD Pregnancy Clinic team at Royal Melbourne Hospital, with patient Stephanie Aparo and her husband Ralph. Ms. Aparo suffers from ulcerative colitis and had twins at the clinic a few years ago.(Provided: Britt Christensen)

When Ms. Zerbib’s condition worsened six months after the onset of pregnancy, the clinic was able to adjust her treatments safely for the fetus.

Ms Zerbib’s health improved and the baby was closely monitored.

Her daughter gave birth safely by Caesarean section in February.

“When you have to deal with all the surprises of pregnancy, as well as your condition, it can be a lot,” she said.

“I felt empowered, in terms of information and being involved in decisions, and I argued for – because the doctors were talking to each other.”

After giving birth, Ms Zerbib had a “small” flare, but says she was able to manage Crohn’s disease better this time around with “more proactive” treatment.

Her daughter is now over eight months old and is doing “very well”.

More clinics needed

RMH’s multidisciplinary IBD pregnancy clinic was the first of its kind in Australia.

There is now one in Sydney.

In addition to women with Crohn’s disease or ulcerative colitis who are considering pregnancy, they treat men.

Many people with the disease worry about the impact drugs can have on unborn children.

By having IBD specialists, obstetricians, pharmacists, nurses and surgeons work together to help people before, during and after pregnancy, the team can reassure them about safety.

“It was fantastic,” said Dr Christensen.

“We have a pharmacist in our clinic who sees women ideally before they get pregnant, who can make sure they are taking the correct medications and see them throughout their treatment and reassure them of safety.

“The idea is to make sure everything goes as smoothly as possible.”

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