When Warriors player Marata Niukore feels the strain from a tough training session, there’s one person in particular he looks to for inspiration to power on – his partner Nikki Johns.
The former national swimmer and water polo player has been battling inflammatory bowel disease (IBD) since she was 17, and Marata says whatever pain he’s experiencing is put into perspective by what she endures daily.
“I go out and do my job, which is tough on the body, but my pain compared to hers is on a totally different level,” he says. “I get to recover and get my body right to go, but she doesn’t have that.”
Nikki was swimming competitively when she started to become ill. Repeated bouts of tonsillitis didn’t stop her training, neither did stomach pains which had been rumbling for a few months. Nikki underwent an operation to remove a swollen appendix, but the pains persisted. When another severe bout of tonsillitis failed to resolve, doctors hospitalized her.
“I was in the worst pain of my life,” she recalls. “I couldn’t get up off the hospital bed to go to the toilet and called my mum crying. She came straight away and knew it was serious.”
An ultrasound scan revealed a problem with her colon.
“They explained that three-quarters of my large intestine was sick,” says Nikki, who was rushed in for emergency surgery after symptoms quickly worsened and the damaged section of her colon was removed. “I remember the first time I opened my eyes and saw where they’d needed to cut me. Then I spotted the colostomy bag and I bawled my eyes out.”
Doctors diagnosed Nikki with colitis, which is a form of IBD. They told her that she needed to keep the colostomy bag for a year while her intestines healed.
“Sometimes surgeries like this are keyhole, but because mine was an emergency operation, there were staples up my tummy right to my chest. If I coughed, yawned or moved, my belly felt like it was ripping open. In 10 days, I’d lost 21 kilos, I was so sick.”
Learning to handle colostomy bags was a challenge, but Nikki decided not to hide that she needed one.
“It’s difficult to talk to anyone about it who hasn’t been through it, so all I wanted to do after that was be a sounding board for other people,” she explains.
She became a mentor to others going through similar difficulties and gave a talk at the Crohn’s and Colitis New Zealand annual camp for children and teens living with IBD, Camp Purple. She also made special colostomy bag covers and distributed them through the event and Ronald McDonald House.
“I was very much an open book about the bag,” she says. “Everyone was so supportive.”
But its impact on her life was significant and during training. She’d need to leave the pool frequently to empty it.
“I’d be paranoid because at night especially sometimes it leaked,” shares Nikki. “Every time I left the house, the anxiety of whether it was leaking was terrible. I remember going on a date to the movies. With a colostomy bag you can’t control your bowel motions or gas, so every time the cinema went quiet, you could hear noises from it. It was so embarrassing that I walked out. I went to bed and cried. I told my mum, ‘I’m never going to date – no one’s ever going to like me with a bag!’’’
A year to the date of the operation, Nikki booked to have the bag removed.
“I now regret with every bone of my body that I didn’t wait longer,” she shares. “I wish I’d waited another few months to let my colon heal more. Since having the reversal, I have constant bowel flare-ups at the connection site and it keeps collapsing, so there’s bowel obstructions.”
She was still swimming competitively and working as a swim teacher when she met Marata in 2016.
“I was still very much in and out of hospital,” says Nikki, now 31. “One time, I was tube-fed for several weeks because my stomach needed a rest.”
It didn’t take long for Nikki to broach the subject with Marata.
“I’d filter information to him, like telling him I’d got a lot of tummy issues and not to be freaked out when I was eating and needed to get up five times during a course. That was really hard to say because imagine talking about your bowels to someone you’ve just started dating. He was very mature about it though.”
Once Marata knew the full story, he was completely supportive.
“With his fast-paced life with his footy career, I expected him to think he wouldn’t have time to be with someone who’s sick, but he stood by my side. I’ve been really lucky.”
Within five months of knowing each other, they moved to Australia, where Marata played for the Parramatta Eels.
“When I dropped the bomb on her that I was moving to Australia, we had to make a big life decision and haven’t looked back since,” he tells.
Adds Nikki, “He told me he wouldn’t go without me, so I knew I needed to step up for him because he’d always stepped up for me.”
Despite further surgeries in Australia to remove scar tissue from her bowel, Nikki swam for a club team in New South Wales.
“Raising my heart rate made my stomach cramp up so much. I could barely breathe, but I wanted to keep going for everyone else with bowel disease.”
She’d be in and out of hospital for weeks at a time to get the pain under control.
“The fact she dealt with it so well is to the credit of how strong she really is,” insists Marata, 27.
Within a year of their move, they discovered Nikki was pregnant.
“Due to the bowel problems, I’d been told I’d probably have to go to a fertility clinic if I ever wanted to have children. So to have the positive test made us both so happy,” she enthuses.
Sadly, the couple lost the twins at 12 weeks. Later that year when they successfully conceived for a second time, they were anxious about each scan.
“I’d been told that even if I managed to conceive, I would more than likely need a Caesarean because of the way my bowel’s set up, so we were very nervous.”
The pair now have three beautiful boys, Kayden, five, Levi, four, and one-year-old Carleo, all conceived naturally.
“I feel like I was put on this earth to be a mother,” she says. “I love it so much!
“Being busy with the kids takes my mind off the pain. They’re such a joy. They’ve got a lot of energy, but they’re such good kids. Having them means there’s a lot more drive to be healthy.
“If they see I’m in pain, the older two will get a heat pack without me asking or sometimes run me a bath. They’re the best!”
With the two eldest busy with extra-curricular activities – including jujitsu, swimming and footy – life’s full, but she loves every minute of it.
And just as she inspires Marata, his support gives her strength.
“When you’re sick for so long, you learn to hide a lot of the pain, but somehow Marata picks up on it,” says Nikki. “I’ve stopped going to parties or concerts because I’m absolutely frightened of not being around a toilet or of the tummy pains that hit randomly.
“I still need the toilet all the time and people ask me if I’m okay. Marata will help by changing the subject so I don’t have to talk about it.
“He’s very protective too. If we’re at one of his events and he sees I’m in pain, he will always distract me.”
To this day, Nikki is in and out of hospital.
“I say to Marata, ‘I get it if you don’t want to be with me any more.’ It’s exhausting to have it, let alone watch someone with it. Every time, he says, ‘I’m not going anywhere!’ I’m so lucky and feel so supported and safe.”
Nikki doesn’t let her illness stop her watching Marata play and gets to every home game with the boys. “The Warriors and the partners are the most beautiful, supportive people,” says Nikki. “I’ve never felt so accepted with having bowel disease before.”
Marata says he wouldn’t have achieved what he has if it wasn’t for Nikki.
“I cherish what we have now because eight years ago, this was only a dream. Nikki’s an amazing mother, but she’s also a supportive partner and incredible friend.
“What she has to go through on a daily basis, on top of being a mother, of having to support my goals as a rugby league player, she’s got a lot on her plate.
“I get to live my dream and have the kids under control because of her. Without her, I definitely wouldn’t be in the position I am now. I’m so proud that she hasn’t let colitis define who she is or who she’s become.”
For more information
- Visit Crohn’s & Colitis New Zealand at crohnsandcolitis.org.nz.
- World IBD Day takes place on May 19 each year. It unites people worldwide in their fight against Crohn’s disease and ulcerative colitis, known as inflammatory bowel diseases.
