May 10, 2020

“I counted the list of things that this disease had taken away from me. It was very personal."

 

IT WAS AT THIS TIME THEY WERE TOLD REBECCA WOULD NOT BE ABLE TO HAVE ANY MORE CHILDREN. SHE WAS GUTTED. SHE WAS BROKEN. “I COUNTED THE LIST OF THINGS THAT THIS DISEASE HAD TAKEN AWAY FROM ME. IT WAS VERY PERSONAL. MY CONCENTRATION WAS ALL OVER THE PLACE. BEDTIME STORIES WERE CONSTANTLY INTERRUPTED.”

Meet Rebecca, 39 years old, mother of three beautiful girls, wife to Joe, a paediatric occupational therapist (OT) and one of the bubbliest and determined personalities you’ll meet.

Just after graduating from university as an occupational therapist, Rebecca started working with kids with bowel difficulties. Children who are scared of using the toilet, which can impact their future independence and confidence. At the time there weren’t many professionals supporting children with this need.

Coincidently around the same time, Rebecca developed the chronic disease, Ulcerative Colitis (the gastro-intestinal variety), which she has been living with for the past 18 years. It’s an auto-immune disease that was triggered in her early 20s. Auto-immune diseases are normally genetic but not everyone who carries the gene has it ‘switched on’. Rebecca just happened to have that gene ‘switched on’. She felt fatigued a few years before which was probably a warning sign.

“With UC your body attacks your large intestine and wants to get rid of it and it makes you really, really sick”, Rebecca explains. Her brother has also been diagnosed with UC which she says is really “shit”! Literally a “bummer”.

Rebecca started displaying symptoms just before her first daughter was born, at the age of 23, which included very bad diarrhoea. A gross conversation she says, but “I talk about poo all day at work, so its ok!”

During the pregnancy she became very sick for four weeks, which doctors thought was Giardia. Early anti-biotics seemed to fix it. But soon after she had her daughter she became sick again with similar symptoms, but the treatment didn’t work this time.

A scope was done, and she was diagnosed with UC. But as a brand new mum she was focussed on other things. Her biggest worry was whether the prescribed medication would affect her breast milk. She began to feel better in between what she describes as “bouts”.

The next, worst bout occurred when she was pregnant with her second daughter (her two eldest are only 16 months apart). When Rebecca was 20 weeks pregnant, she was hospitalised, and this is when things “started to get real”. Her mum was terrified as she was a nurse and understood the seriousness of the situation.

Rebecca came home after one week and seemed to be alright, until her daughter turned one.  At this point, she returned to hospital for 2.5 weeks, intending to remove her large intestine before an experimental medication was prescribed.

ONE AND A HALF YEARS LATER WHEN SHE WAS 24 MONTHS PREGNANT WITH HER THIRD BABY, VERY SICK, MOVING TO A NEW HOUSE, LOOKING AFTER TWO LITTLE GIRLS AND A HUSBAND LOOKING FOR WORK, REBECCA’S HEALTH DECLINED AGAIN. HER BODY WAS REJECTING ITS OWN TISSUE. “WHEN YOU’RE BAD YOU ARE CHAINED TO THE TOILET”, SHE RECALLS.  

Six weeks after the birth of her third daughter (who arrived safe and healthy), with a three and a four year-old at home, Rebecca decided enough was enough and decided to have her large intestine completely removed. “They stitch your small intestine to your butthole… no delicate way to put that”, she jokes. “It got to a point where I could not look after my kids, having to run to the toilet all the time. You can image having to stop at a Servo with three children with this condition. I had to do something drastic to allow me to raise my kids myself.”

The outcome of this procedure is that the diseased tissue is removed. The symptoms and genetics remain, but the acute disease is gone. Rebecca came out of the surgery with a temporary stoma for seven weeks while everything was diverted to allow the tissue to heal and the gut to start performing normally again.

In the years that followed Rebecca continued to experience poor health. Medical specialists found an abscess in her abdomen which was removed but resulted in Rebecca having to stop breastfeeding. A second abscess was found shortly after which affected her ovaries and fallopian tubes.

At this point Rebecca and Joe had three little girls aged, five, four and one. It was at this time they were told Rebecca would not be able to have any more children. She was gutted. She was broken. “I counted the list of things that this disease had taken away from me. It was very personal”, Rebecca explains. “My concentration was all over the place. Bedtime stories were constantly interrupted”.

Rebecca has since had another stoma implanted, which she wears today. “I have a stoma because I can eat more things, I’m not chained to the toilet and I’m in more control of my day”, she says. Rebecca quickly felt better and was delighted to hear her daughter say one evening, “Mummy you can read me the whole story now!”

“IT FEELS A BIT HIDEOUS, BUT MY GOAL IS TO RAISE MY CHILDREN WITH MENTAL AND PHYSICAL PRESENCE AND CALMNESS, AND MY ILLNESS HAS ALWAYS BEEN IN THE WAY”.

Rebecca now enjoys being able to focus on the simple pleasures involved in raising her children.

UC is often considered a ‘silent’ disease because of the perceived sensitivities talking about it. Rebecca has made the decision not to be silent about the disease. “It’s difficult to go through as people don’t talk about it and often find it embarrassing.”

Rebecca acknowledges the correlation between fashion and confidence. She describes one of the nicest gestures when a friend gave her a $500 David Jones voucher just after her surgery. “You don’t think about it until it happens to you and you have to reconsider what you can wear”.

It’s still a challenge for Rebecca to find suitable clothing that is flexible and soft around the waist to accommodate her stoma and is also smart and professional for her to wear for work. Tops are another careful consideration. They cannot be tight or sheer and need to allow for the stoma while being fashion-forward.

Today, on Mother’s Day, we dedicate the #UniqueWomenUniqueStories to all the incredible mums, like Rebecca. We send much love and admiration to you all. Happy Mother’s Day x

Determined women like Rebecca are why we created Christina Stephens and the Unique Women Unique Stories series. Our vision is to provide women living with disabilities and changing bodies with a ‘choice’. A choice in fashion, a choice to be included and a choice to be heard. By shopping with us or even simply sharing our story, you are helping us to get another step closer to achieving this. Thank you



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