Marnie O’Brien: Crohn’s Warrior

Marnie O’Brien had a crash course in Crohn’s disease while completing year 12, but she has since managed to take back control of her life through fierce determination and commitment to the IBD community.

If you asked me about Crohn’s disease ten years ago I would have stared back at you with a blank expression and asked “what’s that?”

When you google Crohn’s disease, it might tell you that symptoms will include: diarrhoea, fever, fatigue, weight loss, abdominal pain and cramping, skin and joint inflammation.

What it doesn’t tell you is that you’ll experience anxiety about planning any kind of social situation because you don’t know how your body is going to be on any given day. It doesn’t tell you that if you have plans to go out one evening, you have to meticulously plan what you eat for the entire day so you won’t be rushing to the bathroom all night. It doesn’t tell you that you might have to alter your whole diet to avoid your trigger foods, only to have safe foods sporadically decide they’re going to trigger you out of nowhere. It doesn’t tell you that you’ll constantly battle with low self-esteem because this disease has literally pulled you apart.

And it doesn’t tell you that if you speak to someone that’s possibly heard of Crohn’s before, they’ll magically have this amazing thing that you have to try because it will definitely help your symptoms!

 It was in 2009 that I started getting horrendous stomach pains out of nowhere, sometimes after I ate too much food, other times they would wake me in the night and would have me in the foetal position. I ignored them for months and simply hoped they would go away eventually. It was around the middle of that year that I missed a few days of school because of what I thought was the flu. I had a persistent sore throat, no appetite and no energy. I went to the doctor for the first time in six years and was told to go straight to the emergency department as I was terribly anaemic and dehydrated.

And so my life with Crohn’s disease began! It was discovered that my stomach pains were the result of an ulcer that had perforated and become an abscess. I had surgery to drain this and was left with an ileostomy bag, while they hoped the perforation would close itself and not require further surgery. It didn’t. In total, I missed about a month of school, which is not ideal halfway through Year 12. My teachers were amazing and helped me get through the remainder of my studies.

In January 2010, I had a resection as the perforation hadn’t healed. A three hour keyhole surgery turned into four and a half hours as there were complications from another abscess. They removed 12 inches of my small intestine and left me with three small scars from the attempted keyhole surgery, what I like to call my ‘second bellybutton’, from where the ileostomy bag had been, and a great big scar of about 15cm going right through my actual bellybutton down the middle of my stomach.

During my 10 days in hospital my weight dropped from 48kg to 40kg as my body tried to heal and cope with the liquid diet I was given. A day before I was released, I was allowed to have solid food and feeling it digest is the most uncomfortable and strange sensation I have ever experienced.

During the year following my surgery, I participated in a study looking at treatment in the first year after surgery and what benefits particular drugs and regular colonoscopies can have for remission. This study was a great success and saw Humira subsidised by the government (prior to this, each injection could set you back about $4000). I have completed numerous surveys about diet, mental health, family history, and environment. I have taken more immune suppressants than I can count and had more blood tests and colonoscopies than anyone would want.

 All in all, I’ve been pretty bloody lucky in the last ten years. I’ve basically been in remission since I was first diagnosed and have just had my meds tweaked a little bit when it seems like I had signs of some inflammation. Eight months ago I switched to a pescatarian diet which has dramatically helped my gut health. I exercise regularly which helps with my mental health.

And more importantly than all that, I have some great people in my life that I can discuss my issues with.

Crohn’s disease doesn’t define me, it just likes to give me a gentle nudge every now and then to let me know it’s there. Not everyone’s tough enough to deal with it, that’s why we’re called Warriors.

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