As it’s around Halloween, traditionally the scariest time of the year, I thought I’d use the more stomach-curdling aspects of Crohn’s Disease as the basis for this post. Enter if you daaaaaaaaaare! (A statement, incidentally, you should never use as a chat-up line).Crohn’s is known as an ‘invisible illness’ which means that thankfully we as patients can keep the majority of our symptoms under wraps. This can be an absolute blessing, as if anyone was to see what was going on the inside on the outside they would think they’d entered the set of a horror film.
The condition of our insides, tend to leave a lot to be desired. I try to remember I have a disease which means my body is diseased – hence the hideous images that conjures up. When I had my first colonoscopy several years ago I thought I’d be a cocky and confident patient and stay as awake as I could to view my guts on the big screen like some warped masochistic horror fiend. This lasted mere moments before the drugs rendered me dozy, but the images have lasted a lifetime in my memory. I was, and am amazed at having been able to see my insides on some form of bizarre live feed, and the experience wasn’t entirely un-pleasant. I was shocked to see how horrendous the inside of my body looked. I felt hopeless at the realization that no matter how much make-up or body lotion I slavered onto myself, I would still be ‘ugly’ on the inside. The disease was still killing me from the inside out and that in itself was a terrifying prospect. After surgery things have improved but the illness itself still regularly reminds me how many horror sequels it’s capable of...
Having Crohn’s tends to demand a massive amount of time getting intimate with the porcelain. We often have to dedicate hours of our day to sitting on the toilet until our body decides to give us a well-deserved break. This allows for a lot of reading time and Candy Crush time amongst the crucifying pain. Because we are using the facilities so regularly we can often find ourselves having agonising backsides, chills, sweats and even masses of blood from the rear. This can either be due to tearing, or something more sinister. The first time I attempted the toilet after my surgery the pain was so incredible I thought I was DYING. In fact I reckon I would’ve gladly taken a bullet to the head at that moment to end it all. Although perhaps a bullet to the rear would’ve been decidedly more effective.
Although the illness is generally at its worst on the inner body, it tends to show itself on the patients outer-casing at times too. For me it’s mainly my skin and hair that are likely to be most badly affected. My skin becomes dry and chaffed and my face breaks out. My hair falls out in clumps and becomes dry and brittle. My lips turn white when I’m dehydrated and I lose all colour from my face. Not really a massively noticeable concern right enough as I look like a cast member from Twilight as it is.
These are all highly unpleasant symptoms, part and parcel of an even more rotten condition. But most should be used as an early warning system to alert us that something is not right. Act on your symptoms and don’t just accept everything Crohn’s throws at you. Learn as much as you can about your illness so you can be prepared if things go downhill. If it helps, keep a medical diary to watch for any potential patterns and changes in your condition, it can be a massive boon when speaking to your doctor.So, all scary stuff. As a rule I generally don’t like horror films as I’m a big mad fearty, but I’m certainly nowhere near as repulsed by gore anymore thanks to my experiences post- Crohn’s. I can now even watch an entire episode of E.R without almost gagging. So swings and roundabouts eh?