My name is Kallia I am now 38 years old and I was diagnosed with Crohn’s disease at the age of 23.
My story started when I was in the Air force, I was working happily overseas when all of a sudden things went wrong, I wasn’t hungry, going to the toilet was awful and I felt like my stomach was going to explode, let alone have to explain to the doctors working with us that there was blood every time I went to the portaloo. I was flown back to Townsville, Australia and put into hospital where they ran a few tests. In my mind this was wrong, I was meant to be helping others overseas not be in a hospital bed myself! After a few days I was told that I could complete my deployment and return to Bougainville, but I needed to go and see the medical team immediately on returning home to New Zealand. I was happy that I could return to my job, no matter that I wasn’t feeling the best I was happy to be back helping others who were in more need than me.
I completed my deployment and then flew home where things started to get really bad, the cramps, the blood and being really tired all the time. It was a blessing being home and also being in the Air Force as I was sent to good specialists in Wellington and was put on various medications. My life felt like I was a guinea pig, if this drug doesn’t work we will try this one. To counter the side effects of some medication I was given others, I got to the point where I was taking 18 tablets a day. I felt like my life was spinning as I was struggling with going to work so had lots of sick days. Once I was diagnosed officially I was called into the Medical officer’s office and told that I was no longer deployable overseas as I was a high risk, I was to take a medical discharge as that would be the best option. I was devastated, I didn’t know what to do as my job was everything to me, if I couldn’t go overseas on deployment what use was I, so I took the medical discharge. Not long after leaving the Air Force I had to go and have some biopsy’s taken, the specialist took 9 of these at one time. I returned home to Palmerston North and later in the evening started to feel really sick, I couldn’t stop the bleeding. I think it was about 2am when I rang a friend and she rang an ambulance immediately. I was taken into hospital and seen by a surgeon who I remember to this day saying, “you have 4 days to get 400% better or I’m going to have to operate” he operated the next morning. They explained that I was so sick they had to take my large intestine and I was left with a stoma and an ileostomy. “A what,” I asked, slowly it sunk in, after seeing it, to which I must say I was grossed out. My stomach was a part of my body that I loved as I had great abs and it was so flat! I was going to have this for life. I struggled to understand what this meant at the time and learnt that I had to be strong if I wanted out of hospital. I was told you have it, now here are some brochures. So I decided that I was going to eat some food and get out of hospital, my niece had just been born and I wanted to see her nothing was going to get me down. So I did it, I proved to the surgeon I could eat by eating mashed potato with gravy, I was allowed to go home looking like a skeleton. I was driven to Wellington with a pillow over my stomach and a whole lot of pain medication, but I wanted to see my first niece.
Later I was seen again by the surgeon and told that they had to complete the operation as I was too sick to take all of the large intestine the first time; they still needed to go back and take the rectum. So I was back in to surgery, had this and everything went well I was told after another long operation. I was told there were three things I would never be able to do: deep sea dive, wear a bikini and be an astronaut.
That was it operations over and now I could leave the house without the feeling of rushing to the bathroom. The only exception was that I had this thing on my stomach. I tried to conceal it as much as I could and I didn’t want anyone to know about it, so I didn’t talk about it. I remember getting angry at people easily, getting frustrated and then one day just crying on the bathroom floor asking why me. That was my turning point, only I could pick myself up, only I could tell myself that life was worth living, people could tell me as many times as they wanted that I was beautiful but I needed to believe it myself. I decided that I was going to go to University and complete my childhood dream of becoming a teacher. Half way through my degree I moved to Auckland, this was going to be a new life, no one knew me, if I had bad days I thought it was because I ate something bad, I learnt to control things myself and look after myself. I was living with my partner, we bought a house in Auckland and I was going to complete my degree and work part time. Things were looking up, both health wise and also in my life. I married my partner after being together for so long, I had an ileostomy, a house, a completed degree, a new job teaching and a now husband what more could I have asked for. It took a sour turn 3 years later and my marriage dissolved. We both parted and I went into a spiral of how could I be loved, I wasn’t normal. I had this thing with me for life. I had learnt to conceal my ileostomy so well and didn’t tell anyone about it. I changed jobs and made some great friends one of which I told. My friend and her husband were amazing and for them I am thankful that I am still here alive and kicking and smiling. They encouraged me to get back on the band wagon and date again and if someone was going to judge me then they aren’t the right person anyway. So I did, I met an amazing man who accepted me for who I am.
Though his encouragement I have achieved many things that I didn’t ever think I could. I have believed that I am beautiful both inside and out, I have completed my diving certificate (after passing the medical examination from a diving doctor) and done some of the most amazing dives, I have travelled to places I never thought I would go, worn a bikini and the list goes on. I had completed two of the three things I was told I would never do and I didn’t want to be an astronaut anyway! I was still very private and didn’t talk to people about my disease or the struggles I had with it.
One day I was sitting in my hairdressers chair chatting away and she told me her son had just been diagnosed with Crohn’s disease, my heart began racing and I thought now is your moment, you have to talk, so I looked at her and said “I had that disease” she looked at me stunned, not sure whether to believe me, so I went further into details and told her I had surgery and now live with an ileostomy. This was the beginning of our journey together. I was able to share with her some of the things I had been through and she became a real friend who was so encouraging to me to actually talk about my disease. She used to say to me “You still have it, you know it hasn’t left you, do” I was in denial, I didn’t want to own this disease, I blamed it for so many things going wrong in my life. One day my hairdresser told me about a camp for kids, she told me that I should go as a volunteer. I told her I wasn’t ready to talk yet; I was just learning to talk to her! A year went by and I had a rough student in my class, where I was almost punched in my ileostomy, I had to own this and tell my boss, so I did. My steps were getting bigger and I felt I was getting stronger to actually talk to others and be proud of who I was and what I had. Again back at the hairdresser (yes I went lots!) and she told me about the camp again, she was so encouraging so I looked it up and thought, why not, my heart loves working with kids and if I can show them that you can have a life and live it passionately and fully then I will apply. I was accepted as a volunteer. I was nervous about going, but encouraged by family and friends that I was doing an amazing thing. Camp was one of the most rewarding and healing experiences for me, I hadn’t ever met anyone else with the disease, I’m not sure if I helped anyone else but I can tell you the kids and other volunteers certainly helped me. In some ways that are unexplainable but in others that I feel like I don’t carry this burden around with me and that it’s ok. I loved camp and will be returning next year. I got home from camp and was back in my class where we were talking about how to write our life story, here was another opportunity for me so I told them how time in hospital many years ago was a life changing event for me, without going into details for them they were great and it helped them write their stories! Well I sit here writing this for you from my hospital bed, yes I was admitted a week ago and am now waiting for more tests. Not exactly what I had planned however I know that I can own this disease, it doesn’t own me and after not talking about it for so long I have learnt to talk about it and share my story. Through encouragement and positivity from my family and close friends I know that I am not going to let this disease beat me; I know I am stronger than it!
I’ve learnt that it is better to talk about things as there are others who understand and can help; I hope that my story helps others through talking and sharing.