Life with Crohn’s Disease

By Beatrice Cook 

Originally from England, I was diagnosed with Crohn’s disease after two years or so years of having symptoms, at the age of 17. The initial symptoms began in 2008, which were bloating, cramping and terrible constipation, which then within months spiralled to severe abdominal pain (which I would often describe as a stabbing pain), extreme diarrhoea/constipation, extreme weight loss, vomiting and exhaustion.

Over the course of those two years, I had at least 6 different GP visits to try and determine what was wrong, with one doctor suggesting I try Gaviscon, another believed the issue to be IBS, with an eating disorder/anorexia being thrown in the mix, or one even suggested that ‘my parents were putting me up to this’.

I received cognitive behavioural therapy  (CBT) following a theoretical anorexia diagnosis, gluten and dairy were cut from my diet, but still I continued to get more and more unwell, to the point where I was pretty much bedbound.

This continued until the summer of 2010, where I collapsed whilst visiting a relative in Scotland, and admitted to a local hospital where it was thought I had a urinary tract infection. Following discharge, I returned home, whereby my symptoms worsened even further, and my Mum took me again to hospital.

Then followed an almost 3-month long stint at hospital, where a Crohn’s disease diagnosis was quickly made following scopes and scans. My disease had progressed to the point where a fistula had also formed, and I required surgeries to drain 2 abscesses in my groin, steroids, iron infusions and NG tube feed as I was critically underweight. At the end of that period, I was set to have a temporary ileostomy, but ended up having a bowel resection of the terminal ileum via a laparotomy.

Within weeks, the change in my health was enormous, and I was back to my healthy self until 2012 when I needed an emergency laparotomy/adhesiolysis to remove scar tissue that caused a bowel obstruction.

I moved to Australia in 2018, and was generally well and, with my fiancé, welcomed our beautiful son to the world via C-Section in 2021. I wasn’t on any medication until the end of 2022, where it was found that I had more disease and a stricture at my neo-terminal ileum, and was having diarrhoea and bloating, and so began a course of steroids.

In January of this year, I underwent another bowel resection via laparotomy, with part of my small and large bowel being removed, as well as copious amounts of scar tissue. Almost immediately following discharge, I was readmitted with a nasty case of peritonitis, and following that admission was back again due to my wound getting infected and an abscess formed. Further surgery resolved this, and I am recently back home in the care of the ‘Hospital in the Home’, currently needing a VAC assisted dressing (who I have lovingly named Henry the Hoover) and daily visits whilst I recover.

I will now need to begin treatment to try and fight off another flare or possible surgery, but I know that I have the greatest support and care in the form of my gastroenterologist, surgical team, IBD/Stoma nurses, partner and family.

I often wish that 29-year-old me could go back and reassure my younger self that life after a chronic illness diagnosis wouldn’t be so bleak, and that I am far stronger than I could ever have imagined because if it.