health

"I often embarrass people when I talk about my condition. That needs to change."

Often midway through my sentence I notice their face. They start to squint, their eyebrows curl upwards and they force an awkward smile.

This is when I realise that I’ve gone into too much detail and overshared about my temperamental bowel and its bad behaviour. Again.

But they asked the question, so I simply answered it.

Making people feel uncomfortable and in turn making myself feel embarrassed about my misbehaving bowels has been a frequent part of my life since I was diagnosed with Ulcerative Colitis almost three years ago.

UC is a condition that results in patches of inflammation in the colon and rectum. There is currently no known cause or cure for UC, and it can only be managed with medication, with varied lengths of time in “remission” followed by debilitating flare-ups.

These flare ups mean more embarrassing conversations, especially early on in a relationship. You have no other choice but to be completely vulnerable, to explain to a new partner that you have to shove this tablet up your rear end before you can cuddle and go to sleep, to explain that you’re bleeding from the bum again, or that you missed the toilet twice today.

Luckily, I can openly have these conversations within the comfort of my own family. My dad has become a self-proclaimed ‘poo expert’, and my younger sister who is 13 often brings home books with titles along the lines of “Healthy Bowel, Healthy Life”. My mum is also progressively getting over her instant gag reflex when someone starts talking about faeces at the dinner table.

As supportive as my family is, I know that my disease takes a toll. Image: Supplied.
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Yet as open and supportive as my family is, I know that my disease takes a toll on each of them in individual ways; Dad especially, as often he doesn’t sleep when I’m suffering from yet again another flare up. I have this overwhelming and growing guilt that I’m such a burden on all off them.

This guilt is carried over to my work life. I work two jobs to be able to afford my medication while studying an agriculture science degree. I feel so remorseful when I have to call in sick at the last minute and one of the other managers that has children will have to work my shift. The thing is, I’ve probably been in pain from my arthritis (a UC symptom I also live with) for a week or so and my cramps can get very bad.

I went for two years after being first diagnosed before I called in sick. I just went on trying to be superwoman and do it all. Even when suffering from a flare up, I’d work a 10-hour shift on my feet and then come home at 10:30 at night to study for my exams.

I had a rude shock when I failed statistics for the second time - the first was a few months before my diagnosis and the second was right after a severe flare up. The university said something had to give. I couldn’t afford to cut back work so had to shift my study to part-time, drawing out my degree by a further three years making it seven in total. This came with the promise that I wouldn't fail a subject again and would seek help by applying for disability services at uni.

"Sometimes I wish doctors told me I had bowel cancer."

Sometimes I have immature thoughts and wish that doctors told me I had bowel cancer after my first colonoscopy. Then maybe it could have just been cut out like my aunt's was. She'd had the operation just weeks before my diagnosis, so that's what we thought my symptoms were, that's why Mum told me to go to the doctor.

Instead, I got this lifelong, chronic, inflammatory bowel disease.

Image: Supplied.
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I didn’t cry when I was diagnosed, but recently I was told that some of the medications were too risky to fall pregnant on and that when the time came to start a family, this would need to be a joint decision with my doctors.

This rattled me. I wasn’t planning on having children anytime soon, but as my mother would tell you, I’ve always been clucky. I just hope that my bowels behave themselves in the future so that I can experience the joys of motherhood.

So while UC continues to define me, I won’t let it control me. It probably would though, if I wasn’t blessed with an amazing team of doctors and nurses who support me endlessly. Even though we haven’t found the right medication and dosage for me yet, I fully trust that they will and I won’t always be needing to know where and how far the nearest bathroom is.

It would probably also take over if it wasn’t for an amazing family network intertwined with fantastic grandparents and aunts. I have also found a boyfriend who didn’t run for the hills when it came to tablet-in-the-bum time and rubs my ankles when my “old person’s” arthritis is giving me grief.

This story is trivial compared to the story of many others with UC. My bowel is fully intact with no need for a bag and I’m not missing a support system by any means. To me those people are the real superwomen and men. But others could still make their life a little easier by being more comfortable with hearing our embarrassing poo stories and spreading awareness of this little-known disease.

I am thankful for the Health Minister Greg Hunt and the Australian Government for listing a new treatment for UC, called Simponi (golimumab), on the Pharmaceutical Benefits Scheme (PBS) from 1 June. This listing is welcome because the need for new medications and research is growing, with more and more young people like me being diagnosed. The more treatment that becomes available for UC means we are hopefully getting closer to one day finding a cure.

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