About a year ago I was diagnosed with Ulcerative Colitis.

After a number of fingers up my bum, invasive questions, passing more blood than I knew I had and 22 blood tests this year alone, I have an answer to my constant pain and discomfort, but no answer.

It started when I went for a run one day, I came home in a lot of pain. Growing up however I had some stomach issues, constipation , stomach bugs, the lot. I didn’t think much of it in all honesty. But when I started to pass blood in my stool, an amount that grew and grew until I could no longer walk or stand properly, I knew it was time to get some help. I didn’t know how hard that would be.

I was told I drink too much alcohol and clearly wasn’t eating healthy. Apparently, I didn’t eat enough fibre, drink enough water or exercise enough and I needed to all these things to be fine. Even as I cried and told the nurse I couldn’t see the colour of my stool, regardless of how much she asked, because the entire toilet bowl was covered in blood, I was told that I was fine. Just dehydrated.

After a number of doctor appointments, I was told that it was probably internal hemorrhoids or bad period cramps. I lost so much blood I was almost anaemic, I peed in a cup to check I wasn’t pregnant 3 or 4 times, got at least 5 more fingers in my bum (one nurse had acrylic nails…YIKES) and ate lots and lots of fibre before anyone could get me a colonoscopy. We had to go private for it, paying almost $2000 as they wanted to me wait 3-5 months for a public one. I had the procedure the following week. Later, I was told I wouldn’t have made it if I had waited. My case was pretty bad.

I had never heard of Ulcerative Colitis before, but my Mum had. She had a friend who sadly passed away from the disease due to complications. I definitely feel bad for the burden my disease has put on my friends and family. The next little while is a blur. Sitting in the waiting room, I couldn’t stay awake. My mum describes me as a deadweight. It wasn’t that I was napping but fainting, constantly. I do remember nurses slapping my face (gently), begging me to wake up, prodding my arms and legs trying to find a vein. This was the first time I was admitted. My Mum didn’t leave me side the entire week I was in hospital. The following morning a doctor came in and told me they ‘nearly lost me yesterday.’ That’s a lot to take in. I was also told not to get COVID19… Whatever you do Gracie!!! Your immune system cannot take it!!! I have had it twice since then and fingers crossed!!! I am OK!

A big thing I have noticed is nurses crying, doctors breaking down when trying to talk to me, people shaking when telling me information, or people refusing to come into my room because of the ‘cytotoxic’ sign on my window. One nurse wouldn’t stop apologising to me when the doctor said he wasn’t sure when I could go home. She sat with me and talked about FRIENDS (the show) for a while. I hope she is well and happy wherever she is. She is one of the many lovely nurses who made me feel less alone when I was admitted. She was only a few years older than me. There was another nurse who would sneak me jelly and custard in the middle of the night when I was hungry and missing home, and there was another who would search fridges for ice blocks when I was on a clear food diet.

I wish I could apologise to the Doctor who had to stop talking mid sentence and walked away because he started crying while talking to me about my test results.

The second time I was admitted was after I ate an apple and my body did NOT like that. I miss apples everyday.

I have decided to laugh at the hardships of my disease because I think that’s the best way to manage! Even though being at work, uni, on film sets or going out with my boyfriend and friends means I always need to know where a toilet is at all times, or I may cry. I can only cry so much. I miss broccoli. I miss fibre, spicy foods, salami, I miss it all! And mostly I miss not being in pain. I also miss not pooping my pants. Aw man.

Despite it all, I can do nothing but thank my doctors and family who have pushed in every way they can to help me. My film crew who let me rest when I needed it and the research team who I do samples for who always check in on me. I know I am truly never alone.

I am on Imuran and Pentasa Granules at the moment, next step is Biologics! I have tried steroids and whilst they work wonders and heal me fast, they make me angry and anxious and suicidal. I hate the person I am on them. I really wouldn’t wish that to anyone, and I am extremely thankful to the people who talked me off ledges multiple times whilst I was on them. It has been a whirlwind but I am hopeful!

Thank you for giving me a chance to shed some light on my story.

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