Sunday, 10 May 2015

So do you still have Crohn's?

I begin this blog post as my last one ended. It is something which has gotten under my skin on various occasions and in my opinion has become worse since having Margaret...

So do you still have Crohn's?
Yes. Unfortunately an ostomy doesn't provide a cure. There is no cure. It is simply a way of managing the disease...

... Crohn's is a hidden disease. Unless steroids make your face blow up like a beach ball or arthritis causes your joints to swell so badly you end up on crutches or in a wheel chair nobody would ever know you were walking round with an incurable, chronic disease. As I have said before this is both a blessing and curse. Being able to appear fit and healthy makes this a hell of a lot easier. There are no pitying looks or people treating you like you're about to break - something which I think I would find quite hard to deal with. In fact, I think despite having had Crohn's for nearly eight years and now having a bag permanently stuck to my stomach, many people forget I even have it. Before Margaret I did too. I guess in some ways this is to my credit. I have never kept Crohn's or Margaret a secret and by being so open about it and living my life as "normally" as possible it seems it is easily forgotten.

But the fact of the matter is, I still have it. Margaret has not changed this. Granted, the majority of my symptoms have largely gone away. She has allowed me to be the healthiest I think I've been since my diagnosis aged 16.
I still, however, have to empty my bag 5 times a day and suffer from irritated & sore skin on a daily basis. My stomach will randomly bloat and I will get some cramping for no reason at all. One of the hardest symptoms however, is how stupidly tired I get. I have to manage my days and weeks pretty well. I have learnt to juggle all aspects of my life, trying not to over do anything. One big night out or a series of badly slept nights can ruin the next day. This is why I often choose not to drink too much or go all out on a night out. A lot of people don't get this and I do get a wind up comment or an eye roll for yet again going for the diet coke. But over the years I have learnt to listen to my body and take it easy when required.

The annoying thing with Crohn's is, this requirement is needed more often than I would like and is not 'fixed' after a good nights sleep or bit of rest. A flare, even a minor one, can take me months to get over. If I was exhausted and symptomatic last week, the likelihood I am again this week. I am not 'better', there is no real 'better' there are just some days or weeks when I'm feeling a lot more like a 'normal' person than others. So yes, I still have Crohn's.

Lots of love,

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