Crohns! To this day I remember how relieved I felt to hear that word. For 6 years leading up to that moment, I had been told all sorts of things were wrong with me, even had my quite normal, appendix removed. But there was still that nagging, stabbing gut pain, the constipation, the diarrhoea, the exhaustion.
In the October before my diagnosis, I was sick but trying desperately to lead a normal life. I was 26. I had a full time job that I loved. I had a partner who I could see spending the rest of my life with and we were living in our first home.
At the time I was unaware of what was going on. But if I knew then what I know now, my whole world was about to change drastically.
I was hospitalised at the start of October. Being hospitalised every month was now a normal experience for me. I found out later that an abscess ruptured on the wall of my bowel. At the time, however, I was told it was something else. None of the treatments seemed to be working, in some cases they made me worse. I was beginning to question my sanity. I was discharged after some IV antibiotics and a couple days rest. At this point I decided that the Hospital had no idea what was going on with me.
Gradually I started losing weight from the end of October. 20kgs in 2 months, which I initially thought was great. I mean, what female doesn’t want to lose a few kilos? But then, I entered my “Lollipop” phase. You know, stick body and a big head.
By January I was down to 48kgs. I would try desperately to do the things I used to do, but I was exhausted constantly and always in varying degrees of pain. As far as eating was concerned… I was trying to eat; I would eat some of my dinner, excuse myself, vomit, come back and try to continue eating the rest of dinner.
While all of this was going on, I was also undergoing physio treatments. I had a very sore back and it was suggested that perhaps I had done something muscular.
I went to a First Aid Course, the day before I was diagnosed. We were taking each other’s pulses when my partner noticed mine was beating almost double what it should be. It was brushed off as a double beat and suggested I mention it to the doctor. I wasn’t alarmed, just thought it was my body being “different” again.
The next day I headed off to my GP, who was shocked to see my dramatic weight loss. She did all the standard exams and tests and after mentioning my heart rate, it was strongly suggested that I head to the Hospital. I REFUSED! After much toing and froing we agreed that I would leave, providing I booked an Ultrasound for that day.
“Sluggish Bowel” and “Very Enlarged Ovary” were terms being thrown about in that room. At that point I was feeling very uneasy. People were running around in a flap. Thoughts of whether I could have children began to enter my head.
I was asked immediately to see a Gastroenterologist. To this day I still remember how I felt at that meeting. I sat there and explained EVERYTHING that had happened to me in the last 6 years. Dr Ali sat there…with his clipboard, nodded his head and took notes. I remember feeling like he wasn’t hearing me at all... but he was. CLASSIC TEXTBOOK CROHNS DISEASE was the first words out his mouth. I remember thinking “what’s that?” After more tests and a brief description of what Crohn’s was, that was that. I left feeling very numb and very confused.
I had a colonoscopy, CT scan, kidney investigations and a small bowel barium X-ray. It was discovered that when my abscess had ruptured, I had formed a Fistula. This fistula grabbed my Fallopian Tube and Ureter on the right hand side of my body and had stuck it back to another piece of bowel. This is why my ovary was enlarged, why my back was sore, my kidney was not fully functioning, and why I had almost two complete blockages. Again, I felt numb.
Surgery was my only option. After a week of antibiotics I was admitted for a bowel resection. I was measured and marked for a bag although no one knew if I would definitely wake up with one.
Upon waking I was told what a mess it was in there. I had 30cm of my small bowel, my Ileum, and a small amount of my colon removed. The fistula was riddled with abscesses, so I count my lucky stars I did get that ultrasound that day. I was relieved to wake up minus a bag.
I bounced back from that surgery incredibly quickly and was back at work full time after 4 weeks off. I entered a very happy phase of my life for the next 6 years. I was in remission, I got married, and I got pregnant and gave birth to a beautiful baby girl. Life was good and I felt super human, almost like I had beaten this disease.
I suffered my first miscarriage and this is where things started to change for me. I started to slip on taking my medications, but things were OK on the surface… Then I suffered another miscarriage. I began to get back pain again; they mistakenly took this for gynaecology issues. I had minor exploratory surgery to find out what was going on. I was told there was an enormous amount of scar tissue, everywhere. My chances of conceiving were now slim to none. The routine colonoscopy came round while I was trying to get my head around all of this. Then I was told there was more narrowing around the area where they joined my intestines together and my only option was surgery.
Another 30cm… again, no bag. I was not bouncing back from this surgery as quickly as I had the first time. I felt like an aeroplane in a tail spin, I was spinning out of control and the more I tried to slow it down, the more speed I picked up. I guess you could say I was depressed and beginning to feel like everyone would be better off without me. Thankfully my Gastroenterologist picked up on this and arranged for counselling.
I had several sessions. I learnt and still am learning to accept my disease and its limitations. It’s a daily battle. I have learnt to share and speak openly about Crohn’s. I have learnt I am entitled to have down days. Days where I just want to stay in my PJ’s…and I do.
This is all part of the healing process and, because of this, I began to fundraise and I became a volunteer for the First Ever Camp Purple. I went for the sole purpose of making an impact on just one child’s life and was unprepared for the impact those kids would have on me! These kids never cease to amaze me and they continue to inspire me every day. Since then I have volunteered at all of the Camp Purple’s and am now part of the Organising Committee. I have also become a Board Member of CCNZ.
The journey I have been on for the last 15 years has certainly been a Rollercoaster Ride and I know it’s not over yet. Despite everything Crohn’s has given me so many opportunities, opportunities that may not have come along if I didn’t have Crohn’s. I have met some truly honest and inspiring people. These people are SO supportive and I KNOW they understand me, warts and all. I’m PROUD to call them my FRIENDS.
Lastly I’ll finish with one of my favourite quotes…. Life would be better if we wore more tutus…