A few weeks ago, I found myself struggling to stand upright, as I was quite literally crippled with stomach pain. A seemingly sympathetic friend asks, “have you got a sore tummy again?”, to which I suppose this post is my answer. While at the time I felt like strangling said friend, this is not filled with anger or annoyance in the slightest, but instead is aimed at being a frank and honest explanation of what it is I’m living with at the moment.
So if I’ve bailed on our plans recently, here is your explanation. If I’ve not been very clear when explaining your questions, I hope this helps. And if you’re just curious and want to learn a little bit more about something rarely spoken about, read ahead. I’ll warn you that its not the prettiest, nor the most dignified, if you’re strange enough to have ever found me attractive, worry no more, this will soon no longer be a problem!
So the answer is
I do not have a “sore tummy”. I have a complex and chronic problem with my immune system. My white blood cells, which are meant to destroy foreign and bad cells, are instead confused and attacking good cells. My body is literally trying to kill itself from the inside out. Now, you’re right, it does happen to primarily occur in my stomach/intestinal area, so my tummy does hurt, but as you will see, its not your average sore tummy.
On top my “sore tummy” there is also the rather unglamorous issue of having to shit twenty times a day. Yes, you read that right. While in the clutches of active disease I can go over 20 times a day, and I personally have moderate to severe Crohn’s, others have it even worse. Brace yourself here but aside from a brief period of remission in June this year, I haven’t had a day where I have NOT had diarrhoea in almost three years. Gross thought, I know, try living with it. This is combined with extreme urgency meaning I literally spend half my life planning where and when I can use a bathroom. As you an imagine this can lead to a person becoming extremely isolated as simply getting in car or meeting someone in a public place can very quickly become a stressful situation.
So as you can imagine, having to use the bathroom so often means I rarely get more than 2 hours sleep at a time, waking up around 4 times a night. Considering this, and that when I’m not trying to sleep, I’m either still on the loo, or struggling with joint pain and stomach cramps, you’ll be unsurprised to hear that chronic fatigue and extreme exhaustion are also a major part of living with this disease.
As you cringe reading the details of this post, you’ll probably be able to sympathise with the next hurdle I am too often faced with. Embarrassment. Many people often ask with interest and concern about the symptoms and treatment of Crohn’s Disease. I obviously appreciate their concern and I want people to learn more about the disease and raise awareness, but as you can imagine, telling someone you’re not particularly close with that you spend half your life on the loo isn’t the easiest. On the other hand, neither is admitting to your friend that the reason you cant make it to that party in the city is because at peak travelling times the trains to Waterloo from Haslemere don’t have toilets and it would be a bloody miracle if you went 57 minutes without needing the bathroom. God forbid I even consider the level of privacy experienced in a night club bathroom, or what the cheap vodka is going to do to my insides – and you think your stomach is bad after a night of heavy drinking?!
So my friends, if you spot me walking around town, or even attempting twerking in a nightclub, remember its taken me a life time of effort to be there, so just let me dance like an idiot this once.