“I still live a good life working and doing things I love doing” – Ronald’s story
It all started with a bowel disease called Faps (Familial Adenomatous Polyposis Coli) when I was 19. I had a total colectomy and was still able to be semi normal. When I turned 33 they talked me into having j-pouch, which was the worst decision I ever made. After 7 years of complete hell, going to toilet up to 20 times a day in severe pain and discomfort, I bit the bullet and had an ileostomy. I was sick all the time and had multiple checkups every 6 months, from 20 until I was 33.
They never checked me for Crohn’s disease – they blamed my other disease, Faps, for the issues I was facing. I still had a lot of problems when they finally diagnosed me. I started the steroids and azathioprine and did really well once it was under control. That was until I turned 43, when my symptoms started again. I went through multiple x-rays and an endoscopy and, looking through my ileostomy, they found a large restriction. I was still facing issues, and the medical team started to say that it was all in my head, so I put up with this for a little while, during which my weight went from 95 kg to 60 kg.
I rang the Melbourne support group which helped me see a specialist at the Royal Melbourne Hospital. I flew from South Australia to see them. After my consultation I returned home and, 3 days later, I got a phone call from the hospital to have an emergency operation which identified that 60cm of my intestine was dead.
I was recovering when, 6 weeks after operation, I had severe pain in my left foot which resulted in 7 blood clots. I ended up losing my left leg above knee then, 12 months later, my intestine died again, losing another 60cm. That was the last operation I had on my stomach.
At 58 years old I still have trouble with restrictions but with determination I still live a good life working and doing things I love doing.