You’ll need some historical context to all this so here are some basics. I’m 46, a separated father of four and unemployed. I share my life with Crohn’s disease.
I was diagnosed about 20 years ago. Repeated ulceration and subsequent thickening of the gut wall led to an ileostomy around 2003. That transformed my life and I thought everything was going to be OK.
I had a blockage in 2009 caused by the tubes of my remaining gut sticking together. I almost died. More emergency surgery.
Since March 2011, I have been an in-patient in hospital seven times, each time involving surgery. All around my tail end. And this is the problem with Crohn’s disease and people sharing their experiences to support others.
If it’s affecting your guts, your whole life is centred around diarrhoea and if you have the peri-anal fistulas I’ve had, it’s no easier to explain even to your closest friends.
This quote is generally attributed to Benjamin Franklin – “The definition of insanity is doing the same thing over and over and expecting a different result.” Of course my surgeons, and there have been too many, are not insane, but the theme is correct …
So Infliximab, (a newish drug administered intravenously), it is for me – and at this point, while I have done some research and know it will supress my immune system, I am stepping somewhat into the unknown.
So the past is my history – living with Crohn’s, living with the consequences of an ulcerated gut, undergoing major surgery twice. And more recently living with paracetamol, or something stronger, on a daily basis for 18 months.
And the future is pinned on a wonder drug – which might or might not help to return me to some sort of normality.