When I was first diagnosed with Crohn's Disease at the age of 20, the overwhelming feeling was one of relief. Following two years of being ill - numerous doctors, hospital tests and remedies, none of which relieved the pain - I finally had a name for the symptoms I was experiencing. Unfortunately, by the time I got my diagnosis, the condition had progressed so much that I needed surgery.
It seems that not much has changed, and I still hear of stories of it taking years for people to be diagnosed. The parents of young girls are being told their daughters have eating disorders, for example – months or years later when their daughters are diagnosed with Crohn's, they have to deal with the guilt of having scrutinised every meal.
The trouble is, nobody wants to talk about their bottoms or their poo. When you have a condition like Inflammatory Bowel Disease or Crohn's, you feel ashamed and isolated. At 20, it was difficult not to think ‘why me?’ I hadn't factored ill health into my plans. Would I be able to work? Or have kids? My life felt as though it had been reduced to pain management, hospital visits and sitting on the loo for days on end.
Half the battle with Crohn's, as with all chronic conditions, is finding the mental strength to deal with everything that's thrown at you. In Europe, 40% of the population have been diagnosed with a chronic condition by the age of 15, so a huge number of us are dealing with ill heath from a young age. It sounds obvious to say that the key is learning to gain control, but I know that when I received my diagnosis, it took me a long time to get out of ‘crisis mode’ - to realise that I could be the leader of my own health.
I remember one day, about five years in, lying in hospital after some surgery (I had to have eight inches of my large bowel removed) and thinking: “My life is so small, and I don't want it to stay like this. I cannot allow myself to be defeated any more. If I have this disease I might as well accept it and stop resisting. If I am to be ill then I'll go through my life an ill version of everything I wanted to be. I have to let go of what I've lost and embrace what I have left.” That was the breakthrough moment for me. From then on, everything seemed a little easier. My life didn't end, and I did move forward and achieve many of my dreams.
When the Crohn's flares up it is still unpleasant, and I suffer from stomach ache constantly and from daily diarrhoea, but I no longer feel I've been dropped in Piccadilly Circus without a map. Whatever I have to face, I know there are always positives too. Much of what I now like about myself as a woman in my forties is a result of the journey I've had to make with this
illness – sometimes, I even feel grateful.
On the practical level, it's so important to make sure you investigate a full range of treatment therapies. With my Crohn's, diet has made a huge difference. I'm largely dairy and wheat free, and if I get a flare up I go straight onto an elemental drink, which I can live on and gives my bowel a rest. I can stay on it for up to three months at a time, if necessary. It's hard to stick to but over the years it's got a lot easier - I even spent the whole of the second series of Fame Academy on it, working long hours in a highly pressurised environment.
If you've just been diagnosed, there's no getting away from the fact you’re at the beginning of a very long and sometimes frustrating journey. The key is to learn how to manage your illness without being defined by it. And be strong: you know your body, and don't let anyone tell you otherwise. When you go and see your specialist, remember that you are not a victim - you are the expert client, because no one knows your condition, or even your child's condition, better than you. Life is not over; this will not be the sum total of everything you do, so stand strong.
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