Hi my name is Alex, I’m 45 years old and I live in Australia. I suffer from CIPO and GASTROPARESIS, and a few other co morbidities attached to those conditions. I first became ill when I was 11, and it all started with a swelling in my groin, a low-grade temperature and fatigue. I generally just felt unwell and my GP organised for me to see a gastroenterologist, as he suspected I was suffering from something more than just a bug.
Isla is 9 years old and was born with a rare condition that has only been partly diagnosed. Her younger years were mostly spent in hospital, with her longest stay being 9 months. She has intestinal failure which is the umbrella of the diagnosis, which includes gastroparesis, pseudo obstruction, myopathic bowel disease. Due to this she is unable to eat or drink any food, as to put it simply her stomach is paralysed.
Ellie-Mai was born in 2011 at 42 weeks. She is my third child and I had an unremarkable pregnancy and straightforward labour. As soon as she was born I knew there was a problem. She was screaming, as if in pain, and would not latch on. The midwife insisted it was because of a quick labour. I was not convinced!
Sadie made a dramatic entrance into the world on the 10th October 2015 and has pretty much turned our world upside down ever since. We knew pretty early on that Sadie had trouble feeding, it was always a really stressful experience, she would scream in pain and go floppy and a horrible shade of grey pretty soon after it. My son had reflux and a milk allergy and so the medical professionals put a lot of her symptoms down to that.
Ollie (the happiest lad alive) was born on 28th August, after a 30 something hour labour, via vacuum due to low heart rate, and other labour complications. During prenatal scans we were made aware that he had a condition known as hydronephrosis and would be required to stay in hospital for a few days for monitoring, however it should be of minimal concern. Little did we or the prenatal doctors know, he had another on-going issue……
Our six-year old son Alby became ill in June 2015, with what seemed like a tummy bug. He was still vomiting (mostly bile) and in severe pain with a bloated tummy three weeks later . The doctors assured us it was just a bad tummy bug, but our gut instincts told us something else was going on.
Charlie was born 4 days overdue on the 28th August 2008. Due to prolonged labour with no progression and a drop in Charlie’s heart rate, he ended up being born by emergency caesarian section.
“Some people never meet their hero I gave birth to mine”
Our beautiful Emily was born on 21st March 2003, the hospital visits started pretty much straight away. Emily was a “sicky” baby and wasn’t interested in feeding, She always seemed to be underweight, lots of
coughs and colds and infections. At 5 weeks Emily bled heavily from her bowel, we were transferred to The Royal London Hospital, initially it was thought that Emily had an intussuseption – where the bowel folds in on
itself. Eventually it was concluded that it was caused by a milk allergy, so I had to stop breastfeeding and Emily was started on a part digested formula.