The Truth Behind The Smile: Living With IBD

I recently uploaded a video of myself on my Facebook page and a lot of people were surprised by what I said. You see, I suffer with Crohn’s. I have Crohn’s, it doesn’t have me and that is how I like to keep it.

However, there are times when it all gets too much. I am, I hope, mostly known for my good sense of humour and, on the whole, just getting on with it. People comment “You’re always smiling” “I don’t know how you do it” and so on. That’s fine, but I am a blogger and I want to show the good and the bad. I don’t want people to feel sorry for me but I do want people to know the reality, and for other Crohn’s sufferers to know they aren’t alone. I’m not fucking Wonder Woman. I’m a middle aged woman. A mother of two young boys, who happens to have Crohn’s.

To be honest, cliches aside, I am often dying a little bit inside a brave face goes a long way.

I was diagnosed with Crohn’s at the age of 35 after suffering what seemed to be IBS since my teens. To cut a long and rather dramatic story short I have had nine operations in the last four and a half years. And let me tell you something, that takes it’s fucking toll. Physically, mentally and emotionally, I am battered.

Crohn’s is not a what I would describe as “romantic” disease. Let’s face it it mainly involves shitting. A lot. And arses. I wish I had kept a list of all the people that have seen my arse. It would make for a looong list. But it would be impossible because who knows who’s having a peek when you’re under general anaethetic.

Anyway, Crohn’s, arses, shitting, a bit lot of fatigue, increased risk of cancer, hair loss, weight loss and/or gain, fistulas (anal abcesses), eye problems, skin issues, arthritis, not to mention the side effects of the drugs the list goes on and on. Crohn’s wouldn’t be at the top of a list of my most desired diseases to get, let me tell you.

So not only do you have all the above symptoms, you have the operations that basically render you a piece of meat on an operating table. You lose your dignity, or you feel like you do. My surgeon literally knows me inside and out – as do a lot of my readers I guess!

Having Crohn’s has changed me in many ways.

After my first operation I nearly died, I’m not even lying here. I had sepsis before it was cool and everyone talked about it – forever bucking the trend, me! I was in hospital for just shy of a month and my oldest son was 2. It was the hardest month of my life. I had to have stomas. They saved my life but left me with terrible scars. My stomach has an enormous scar than runs down it that has (thus far) been opened four times. I now have no belly button either which solved my ongoing issue of whether to get it re pierced or not. I am proud of my scars though – not enough to get them out (yet).

The truth is I put on a brave face for my friends and family, but also for myself – call it self-preservation. A friend of mine once told me I needed to accept having Crohn’s but if I accept it I can’t fight it. I fight this fucking bastard head on. Every time I think I’m heading towards remission it bites me on the arse – quite literally. That really is a kick in the wotnots.

When you’re told that the medication they are going to put you on could cause xyz but is possibly the last thing they can try. When you have two young children to look after. Family to stay strong for. Yes my children have seen me cry, I assure them I’m okay but don’t hide my emotions. I do bottle them up, possibly more than I should but if I didn’t I’d be a hell of a miserable bitch! Instead I hide behind arse jokes. But you have to let it out some time. I’ve contemplated suicide. There, I said it. I don’t care if people think that’s selfish – I have. I am a strong person and this disease has taken it’s toll to the point where I felt like I couldn’t take any more. Yet here I am – fuck you Crohn’s.

So when you see me, or someone like me, with an “invisible illness” laughing it off. Making a joke. Putting on a brave face. Remember that could be what it is, a brave face. I don’t want your pity, I want your understanding.

You can read more from Erica on her blog The Incidental Parent