I recently read a piece of writing from someone with IBD, in which they were discussing how happy they were that their recent surgery had ‘cured’ their condition.
I was both overjoyed and dejected.
Overjoyed; on the writers’ behalf, as it was a wonderful insight into how denial and misinformation can lead someone to feel immense happiness. Even if they are woefully idiotic.
Dejected; as it reminded me that people with, and without IBD still believe they can be cured with surgery. I wondered where that misconception came from. Articles like the one I’d just read? Doctors? Surely not. Fellow patients? Possibly.
Let me make that point clear before I continue; Surgery is NOT a cure for IBD. Having parts of your insides surgically removed forever, is not a cure for an incurable condition. It’s an unfortunate and often devastating necessity for many patients to endure in order for them to stand a chance of living as close to a ‘normal’ life as possible. Or just to continue living.
My own surgery for Crohn’s Disease was a little over 4 years ago now. It saved me from dying at the age of 26 and gave me a quality of life I’d waited for, for a very long time. I’m well aware of how dramatic and easily bandied about the words ‘life-saving’ can be, and sometimes I feel embarrassed to use them, but they are accurate in mine and most cases, for patients with IBD. None of us would put ourselves through invasive and major surgery, followed by months of recovery and rehab without good reason. I think staying alive is a pretty good reason. And one of my favourite Bee Gees hits.
Before my operation (in which I had the most badly diseased part of my bowel removed), I’d resigned myself to a life of pain and misery, so when the chance to feel better was granted I remembered what it felt like to feel hopeful again.
The problem arose, after my surgery, when I realised I was still in immense pain. Not so much Crohn’s pain now, but a whole new world of agony where I’d been sliced and diced hours earlier. Now much as you may disagree, I’m no imbecile; I’m well aware that having your stomach cut open and parts of your internal organs removed might nip a little afterwards. It’s just I’d made the mistake of assuming I’d be relatively Crohn’s-free. I hadn’t bargained on requiring barrel loads of morphine and two sturdy nurses to as much as stand upright. I’d realised I had a long road to recovery ahead of me, and that surgery wasn’t a ‘quick fix’ by any stretch of the imagination.
So, if you or a loved one is heading towards the operating table, here are some words of wisdom taken from my own experience with getting up close and personal with a scalpel. Allow them to wash over you like a vial of morphine or a vigorous bed bath depending on your preference.
1. Bear in mind surgery is being used to help you feel better and help you manage your condition more effectively. To give you back some semblance of a ‘life’; NOT to cure you. You will still have IBD when you come out the other side of the operating theatre.
2. You will desperately need a cushion when you sneeze, when you cough, or when you laugh. Hold onto that cushion with any energy you have and cradle it to your chest like Baby carried that watermelon.
3. Don’t try to shower too soon – or alone. Yes it’s important not to smell like your local sewage works, however its dangerous to attempt standing upright and under hot water alone and unaided shortly after major surgery. Don’t be ashamed to ask for help – from nurses in the ward or loved ones if you are at home. Cleaning as soon as you can is vital to avoid infection, just don’t risk your life doing it.
4. Don’t resist the pain relief. You are not special. You are not superhuman. You might feel ok now but wait till the morphine wears off then decide if you still want to be ‘brave’. And don’t.
5 Don’t propose to your surgeon under the influence of a cocktail of drugs. They will only break your heart and have you moved to the psychiatric unit.