Crohn’s disease: Illness affecting 180,000 Australians left Jade covered in scars and struggling to start a family

When Jade May was diagnosed with Crohn’s disease at age 13, no one mentioned fertility.

As a teenager, she was more concerned with the uncomfortable gastrointestinal symptoms – severe abdominal pain, vomiting, diarrhea, fatigue, joint pain and mouth ulcers – than having babies.

Then she hit her 20s and the surgeries started; first a bowel reconstruction that left her looking like a “gutted fish”, followed by another six years later that resulted in a surprise colostomy bag she had to live with for six ”horrendous” months.

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After more than a decade spent managing the disease, May didn’t quite believe it when she heard the common advice that Crohn’s doesn’t directly affect women’s fertility.

“That’s a whole lot of bullshit. It absolutely does affect fertility,” she tells 9honey.

Have you got a story? Contact reporter Maddison Leach at mleach@nine.com.au

Crohn’s disease is an incurable form of inflammatory bowel disease (IBD) which affects about 180,000 Australians, including tens of thousands of women.

Each case is different and though many women have been advised the disease itself is unlikely to affect their fertility, certain treatments, surgeries and flares can make it more difficult to fall pregnant.

That was May’s experience.

”I always knew I’d have problems with fertility after everything that I’ve been through [with the disease],” she says.

“Even though the information out there was saying that it’s not related and it won’t have an impact, I just knew.”

After a year of trying to conceive naturally on the recommendation of her gastroenterologist, May and her husband sought fertility testing. It landed her in hospital.

Because Crohn’s is an autoimmune condition, some treatments include immunosuppresant medication that can leave patients vulnerable to infection.

That’s exactly what happened when May underwent a common fertility testing procedure wherein sterile saline is injected into the uterus to better identify anything that might be preventing pregnancy.

“I ended up getting a really, really serious infection,” she says.

When strong antibiotics didn’t work, a drainage tube had to be placed in her uterus to clear the infection.

It was another six months before she was well enough to start IVF, and even then she had to go on high dose steroids to prevent her immune system attacking the “poor little embryos” as they were implanted.

“I was just devastated, because all of this had happened because I wanted to have a baby,” she says.

After four rounds and one miscarriage, May fell pregnant with her son and the pressure shifted from her physical health to her mental health.

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Up to 50 per cent of people with IBD experience psychological distress related to their illness.

The combination of stigma around Crohn’s and the pressure to be grateful and “not complain” during a pregnancy she had so desperately worked for left May struggling in silence.

And while her medical team were amazing, there were no specialised support services for expectant mothers with Crohn’s or IBD.

“In terms of mental and emotional support, you’re kind of on your own. There’s not much out there,” she admits.

“I wish it would change, because it is really quite difficult to go through this on your own. Even just hearing someone else’s story would have made it better.”

May’s Crohn’s became an issue again at the end of her pregnancy, when her growing child put pressure on her damaged bowels and she was put on a liquid diet.

Baby Jordan arrived healthy a few weeks later and while May couldn’t have been happier to finally be a mum, she wishes there was more education and emotional support available for Crohn’s patients through the perinatal period.

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“I didn’t bring it up in birthing classes or talking to other pregnant mums […] nobody wants to hear about it,” she says.

May urges women with Crohn’s disease to speak with their gastroenterologist early about fertility and how their specific circumstances could affect family planning.

She hopes that by sharing her story and encouraging more transparency around chronic illness and how it can affect the whole perinatal period.

”You are not alone,” she says to any women in the same position she was almost 10 years ago.

“The road may look different for for you or for anyone else, but you can do it. Advocate for yourself.”

May is Crohn’s and Colitis Awareness month. Learn more here.

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