Crohn's disease sufferer Emily Spink finds solace in doing the things she loves, like running, ballet and kayaking.

Most look at me and only see the blue-eyed and freckled, twenty-something, who loves to run, dance and share other people's incredible stories.

If you were to open me up, my small bowel would tell a different story.

When I was diagnosed with Crohn's disease on April 28 2014, after years of dealing with puzzled doctors and specialists, I thought I would be fixed up in no time.

I've since lost track of the number of steroids and immunosuppressant drugs I've been on and of course the hideous side effects that come with each and every one.

It is a disease with few answers and no cure.

I'm now one of approximately 15,000 people in New Zealand who are affected by inflammatory bowel disease.

Crohn's disease and ulcerative colitis are autoimmune diseases, and the two major types of IBD. Ultimately my body is attacking my digestive system.

I know it's not a glamorous disease, but we shouldn't have to hide the realities of it.

On April 28 2014, I sat in a waiting room alone and held back tears as I waited to hear the news I didn't want to hear.

A few months earlier, things had started to go awry.

I went for key-hole surgery in January to check for Endometriosis, after years' spent battling with medical professionals. First it had been a "phase" I would grow out of, and then it was Polycystic Ovary Syndrome (PCOS).

I was put on medication that failed to improve anything and my flailing energy levels.

In the New Year, we finally thought we might have found the answer.

I was thankful to be cleared of endo, but then came the interesting part.

"I wish I had my YouTube camera," said the gynaecologist.

"You've got a rather over-reactive bowel."

I think I laughed nervously. I didn't know what that meant but it sounded silly.

So he referred me to a gastroenterologist and after a colonoscopy and a capsule endoscopy, the cause of all my health problems was found. Tucked up in my small intestine were lots of ulcers.

HOW WOULD MY LIFE CHANGE?

Last week I sat at my desk and tried to ignore the wires wrapped around me and hooked up to a little computer at my hip.

Earlier in the morning I had swallowed a large capsule, comparable to the tip of my index finger that travelled through my digestive system and photographed my intestines. A colleague suggested it be GPS tracked, and we laughed.

I had done the same test in 2014 but had been terrified.

Back then, everything was new and daunting. I didn't know what to expect.

Would my life change dramatically? Would I be able to continue doing the things I loved like boxing, ballet and running? Could I simply continue working like a normal person?

Reporter Emily Spink is determined to raise awareness of Crohn's disease to shed light on the invisible disease. Photo: Kirk Hargreaves.

Throughout the year, I have tried to be strong. I have tried to be happy all the time and I have pretended to be OK in front of my friends and colleagues.

I have hit rock bottom and I have been to spaces I never want to go back to.

This invisible disease has not just affected my physical health. At times it has wiped me out emotionally and mentally.

It was easy to feel alone. It was easy to think no one else understood.

Having the support of my family and good friends and them simply showing me that they cared, made all the difference.

There were days when I felt ripped off. I'm in my 20sand I would love to live my life like a young person should.

I tried to kick the disease to the curb by being active with boxing classes, open adult ballet and training for my first half marathon. There were good days but it was hard when the head said go, and the body said no.

I've had to turn down social events, and put a halt to sports that I love. There were kayaking expeditions with dolphins, when medication caused me to lose feeling in my legs.

The joint pain and fatigue are my least favourite symptoms. I get exhausted easily, which means early nights, and it means saying "no" to doing some of the things I love.

Yet I surprised myself – and a couple of firefighters – when I completed a stair climb in full firefighting attire and with a 15kg oxygen cylinder.

I now have an "I can't wait" card, which I am yet to use, spend my salary on pills, and have become desensitised to weekly blood tests.

I am a different Emily to the one that sat in the waiting room last year.

MY CROHNIES

On May 31, thousands of people will take to the streets of Christchurch's CBD for the 2015 marathon. Due to a stress fracture, brought on by low-bone density, I won't be joining the half marathon runners this year.

One day I'll get this disease under control or into remission and run my first half marathon. Until then, I will continue to get stronger – and be thankful for all the incredible new friendships that I have made with other Crohnies.

"When life hands you lemons, you throw them back. And really, really hard."

- Read more from Emily: Me, Myself and Crohn's at polishedcrohns.blogspot.co.nz