Crohn's & Colitis Australia

Meet Maryjane Pureza:

Maryjane shares her story with us in hopes of bringing awareness to Inflammatory Bowel Disease and living with a chronic medical condition.

"My name is Marjane Pureza, aka MJ, and I’m a graphic designer and illustrator from Sydney. I was diagnosed with ulcerative colitis at age 17.

After eating a dodgy meal at a music festival, I had diarrhoea that never got better. I had some urgency, fatigue and small amounts of blood in my stool. It took 1 year for my UC to be diagnosed via colonoscopy, as the doctors thought it was a tummy bug or giardia.

I was in my final year of high school, so I had the stress of being ill on top of the stress of studying for the HSC. I remember having to leave the classroom to run to the bathroom at times. At the time, I didn’t know about trying to control my diet to help ease my symptoms.

For years I suffered from extreme flares, anaemia and side effects from medication. I tried all medications including Infliximab and Entyvio, plus dietary changes, to try and get my UC under control.

When these treatments failed and my colonoscopies showed signs of dysplasia, the next step was surgery. I had a total colectomy and ileostomy in July 2017, with the option to get a J-Pouch in the future. I always thought surgery was the last resort, but it was the best decision: my stoma
gave me my life back! My health is now better than it has been in years.

One of the biggest challenges I had with UC was that I stopped trusting my body. To leave the house and not know how your body was going to behave/react every second of the day was beyond exhausting, both mentally and physically. During flares, I would have “accidents” walking in public to or from work – where I wouldn’t make it to the bathroom in time.

This was so humiliating and depressing and the main reason why I couldn’t trust my body. I used to joke about these accidents with my husband, it does help that we could laugh about it afterwards. Even during my worst flares, I never stopped working full time, plus I freelanced a lot after hours.

It meant I was very fatigued, but would always keep going. IBD taught me to be resilient both mentally and physically, to keep on fighting - do what you can to get through the hard days. I read a quote that having a chronic illness is like having a full-time job and this always resonated with me.

To be constantly monitoring how I felt physically, calculating where the nearest bathroom would be, juggling medical appointments and the anxiety of travel, not knowing how my body would react was exhausting. My family and friends were always very supportive, even if they didn’t understand the full extent of my symptoms.

My husband has been incredibly supportive and patient during our relationship as my UC was actively flaring all these years. He’s been with me at doctors and specialist appointments, helped make decisions about medications I was trying, patiently waited outside bathrooms for me, and was pivotal in helping me decide to remove my colon. Our relationship was tested every time I was put on prednisone – as I became incredibly irritable and angry – just some of the fun side effects. Those were tough days! Having this sort of support takes away some of the mental load associated with IBD.

As I treated myself with western medicine, I also turned to eastern medicine and holistic therapies during this time. I feel these therapies helped give me the support and strength to get through the setbacks. Acupuncture, Reiki, Kinesiology, Energetic healing, Positive thinking and other similar treatments helped me look past the physical symptoms of UC and explore the mental and emotional reasons behind my disease. These therapies often acted as counselling sessions, and I learnt more about myself and become more aware of my own body.

Don’t be scared to reach out and ask for help. If it’s too confronting to talk to a family member or friend, a doctor is a great place to turn for help. There are also help lines and fantastic resources on the internet (Beyond Blue, Black Dog Institute) to help you recognise what you’re feeling and
how to cope with that. Be kind to yourself during this time, when you are feeling down or stressed out and don’t put extra expectations or challenges on yourself. Always remember you’re doing the best you can, and it’s
never a bad thing to ask for a little help. We all need it sometime."

If you have a story like Maryjane's, please share it with us and together we can #FlushTheStigma around IBD.

@emjayuc

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9 hours ago  ·