Everyone with Crohns Disease has a story to tell. For me, it had a fairly tight grip until I was 30 and was a very private illness. I’m a woman, and however wrong it may have been, it made me feel less feminine to discuss the symptoms. Everything took planning, even facing a plate of food. I was conflicted by hunger and fear. The potential for pain and embarrassment in getting it wrong was too great not to consider.
In my 20’s I was told that the ‘endpoint’ for me would be major surgery that would leave me with an ileostomy and almost certainly infertile. I was terrified of this, like so many other young women I’ve spoken to in a similar situation. I felt repulsed by the idea of a stoma, a bag – being different or feeling irreversibly changed. So, I happily tried any new immunosuppressant - anything to avoid that life-changing operation. But whatever the drugs, remission tended to last no more than about three months.
Around five years ago, I found myself at the stage of wanting to start a family, but I was never well enough for long enough for my body to be a suitable place to create and keep a baby. Things began to unravel. Ultimately my state of health tested the patience of my relationship at the time. Nobody was to blame.
I moved back to the UK into a small flat in North London; somewhere I could hide when I needed to. Newly single, I could be as poorly as I wanted without anyone knowing. I could emerge on the better days and be the best version of myself I could muster. This became the new routine. I saw friends, travelled, dated, continued to work, to keep up, to pretend.
Then I woke up one morning, and my body wouldn’t move for weakness. I was frightened now. I had a pain below my ribcage that felt like a racing second heart. I was now heading rapidly for an ‘endpoint’ with greater consequence than the one I’d been trying so long to avoid.
A week later, I underwent a subtotal colectomy. In basic terms that means the removal of most of the large colon with a part left protruding through the stomach. I felt pretty disgusted by my body but there was no escaping it. I had two openings which needed dressing and a drain. It was two more than I had hoped for and I felt I’d never have the freedom of being naked again, as I would always have this bag attached to me. It was so foreign and unwanted. I was 30 and wanted a normal, functioning body that I wouldn’t be too embarrassed for someone else to see. To me, at the time, that seemed to be the most important thing imaginable.
As time went on, things changed. I began to take stock of what I’d come to tolerate.
When I agreed to the surgery, I thought I was giving up. But all I was giving up was fighting to maintain a semblance of ‘normality’, despite the pain. Choosing my health over my body image was, in the end, what saved my life. And I realise it’s not just about physical health. I began to get parts of my personality back that vanished, just trying to get through the day. I found a lightness I lost for a while. Today I don’t plan my trips around the potential for panic, and I have the mental capacity for more happiness as a result – and that’s what makes me feel attractive.
Further still, I was able to build a life again. The one I thought I’d likely lost. I met someone who viewed my ‘battle scars’ with fascination and awe. He isn’t remotely fazed, and not because he’s being overly big-hearted or generous – to quote him ‘it just isn’t a big deal’. He’s right, it’s not. And still quite unbelievably to me, I’m six months pregnant in these photos as well - a healthy body I’m proud of for so many reasons plus a little dream come true. (The joy of rarely having to use public loos these days should also be noted!)
I know not everyone gets the choices I’ve had, and I’m sensitive to that as I write this. It’s stopped me from doing so a few times. But there are lots of people in my situation. I’ve spoken to some teenage girls fighting against the surgery, continually redefining their own baselines for what they can deal with. I hope my story may show them there can be an alternative. Surgery isn’t a failure – each patient is different of course – sometimes it can be a positive step towards a better life.