Kineta’s Story

Hi, my name is Kineta. I’m 19 years old and I have Crohn’s disease. I may look like a normal 19 year old, but am I really? Here’s my story.

September 2013 I noticed everytime I went to the bathroom the toilet was full of blood. Being 17 years old and too embarrassed to say anything to anybody, I kept it to myself. It never went away, only got worse. I was anaemic and was on iron supplements on and off for months. By March 2014 I was getting extremely bad pains in the stomach, not only was I getting these pains but I was struggling to move, walk, and eat and talk.

Everything I ate or drank either went straight through me, or straight back up. I was on the toilet up to 12 times a day, getting no sleep because I was in complete agony and up sick all night. I had to finish school early in February because of this. I had to stop working. All I could do was lay in bed and cry and even that hurt. Going to the doctors 2-3 times a week and being in hospital atlease once a week and getting no answers was tough. Test after test, ultrasounds, scans, X-rays and nothing came up. Not only was that hard, but my gp messed me around for months and if it wasn’t for my mother forcing him to get me to see a specialist urgently and all of these tests I would have ended up being a lot worse than I was, if that was even possible.

June 2014 I finally got a colonoscopy and endoscopy which shown I had ulcers on my intestines and I have Crohn’s disease. If I went 4 days later I would have had a colostomy bag. Home I go, 21 tablets a day, including steroids and after a few weeks I was gaining weight and getting back on track. I moved out of home with my partner, I bought a new car, I went into management at work, got 2 new pets and started studying a course online. Things were finally looking up.. Little did I know the medication slowly stopped working, my bowels were extremely inflamed again, to make it worse it wasn’t even in the same area as last time, it had spread.

After more appointments with my specialist, after trying numerous medications nothing was working. Again being admitted into hospital 2nd Jan 2015. More and new medication and high dosage of steroids, being pricked like a pin cushion once again, tests, scans everything you name it. Finally I start these new injections called Humira which is a drug from overseas. I inject myself every fortnight. Do they hurt? Yes, but are they working most certainly. After 11 days being stuck in hospital I get to home. I’m still on bed rest and still in pain but I’m getting there. I haven’t been this at ease since 2013. 

As a result of being sick, I couldn’t celebrate my 18th birthday, I don’t go out and party like a normal 18 year old. Being sick and in and out of hospital for a year I lost many friends, I don’t go out and see people much and recently I lost my job because I’m too sick to be at work. I am supposed to be gluten free, lactose free, on a low fibre diet, and no sauces, herbs or spices. I have bad anxiety and I feel depressed, but you know what? That’s okay because I can live through that.

It’s all a journey and I’m dealing with it, within this past year I learnt so much through being so sick, who my true friends are, how much my family and partner care for me, the important things in life and that I’m not alone. I’m still learning about my crohnic illness each and every day. Surrounding myself with positive, strong and happy people makes it 10 times easier and im just truly thankful I have such wonderful doctors, family, friends and the support from others who also suffer from Crohn’s.

Find out more about the #IntoTheOpen campaign & how you can help kids like Kineta

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