Fighting Fistula – Lauraine’s story

Some forms of bowel disease are very well known – bowel cancer is the second biggest cancer killer, and most people know about it.

There’s increasing public awareness of IBD, with Crohn’s and Colitis becoming more common and openly discussed.

But some disorders – sometimes linked to these illnesses and sometimes not – have little to no awareness – such as enterocutaneous fistula.

We spoke to Lauraine, who lives with a fistula, to find out about the challenges – and the urgent need for more research to help patients.

Can you give us a short biography about yourself and your experiences?

Bowel disease has sadly plagued me for most of my adult life.  I had my only daughter in 1984 and 6 months later the problems started – constipation initially which progressed to unrelenting bloody diarrhoea. I lost my second child because of it. I was eventually diagnosed with proctitis which progressed to ulcerative colitis and a colostomy when I was 26.  When I was 28 an ileostomy followed and I lost my colon to this horrible, debilitating illness.  The ileostomy restored my health but as they had left the rectum in, this continued to cause some problems.

Fast forward almost thirty years and a complex hysterectomy resulted in my bowel perforating, leaving me with an enterocutaneous fistula.   This has been a game changer for me in the worst possible way.  Damage to the bowel was serious and could not be repaired.  Life with a fistula is a massive challenge and can be downright miserable.  I now have 3 stoma bags and a host of problems I never had before.  I ask why this happened and I’m told I’m unlucky.  That hasn’t helped me come to terms with this but the answers just aren’t there. I need research, I would love answers.

What does research mean to you?

Research to me means HOPE.  It’s essential to gather knowledge on these diseases which will hopefully lead to better treatments and understanding.  I would find it reassuring to know there was research into my type of fistula going on but as it’s quite rare, I worry that it will be overlooked.  It would be brilliant to be somehow involved in the research, after all surely the people who get these diseases somehow hold the key to the answers.   Without research, people like me will forgotten about – that’s where BDRF comes in as I like to think they are The Voice for us unfortunate enough to have these debilitating, life changing illnesses.   My hope is the research will grow and continue to support this area of medicine, my fears are the less common problems will get overlooked as they affect less people.  That makes me feel afraid and even more invisible.

Why do you support BDRF?

I support BDRF as it gives me hope that a cure for these very debilitating diseases will be found.  It may come too late for me but hopefully generations to come won’t be living a ‘half life’  because of bowel disease and all that entails.