Hi Crohn's Disease, you little shit (get it? Ha ha!)

Julz Cooper shares a very raw and honest view of her personal journey with Crohn’s Disease.

You have made me who I am today. You are unfortunately a part of who I am. And to be honest 15 years is a long time. I was diagnosed with Crohn's Disease when I was just 18 years old. To me it's what I'm used to now, life of living with Crohn's, I wouldn’t wish it upon anyone, it always wants the better of you and trying to fight that on a daily basis is exhausting.

Crohn’s has a habit of taking over my whole body, failing on me on a daily basis it's like a car struggling to start sometimes, a car with no petrol - won't start at all, despite this I get up and keep going and going until I just simply can’t carry on.

It's been 5 years without my bag and I kind of miss Col, I was supposed to be in remission after having the ileostomy but again Crohn's is slowly trying to take over. Col made life very different, but to be honest it was easier…. Yes, having an internal organ stitched to the outside of your body and shitting in a bag, having red raw skin around the sight from constantly taking off a massive super sticky plaster, being in constant fear that it might leak, was easier than life is some days right now.

This trial and error with medication makes you feel nothing short of a guinea pig, I currently feel like I’m at the end of the “let’s try this” route and there’s nowhere left for me to go. The allergic reactions, of being left paralysed for 2 days, were not only a massive shock to my system, but to my mental and emotional state of being, and a whole month later since the first episode, I finally feel as though I have just crawled out of that cave back to the “normal” life path, While i can appreciate that trial and error is an unfortunate part of getting things right, I am certainly over hearing the excuse of “you’re a unique case, your missing such n such of your bowel, so we can’t not do anything”….. Dearest Dr - Don’t you think that I know this ??? Don’t you understand that I’m the one who lives with it daily – I shouldn’t be the one to tell you where to next – you’re meant to be the expert and you standing around scratching your head at “what to do next?” leaves me feeling 100% hopeless.

Don’t get me wrong some days are good days, but most days are a struggle…. Starting when the alarm clock goes off and I feel like I’ve only slept for maybe 1 hour tops…. Then I drag my ass up and do life – because the world doesn’t stop just because I want it to. Then the battle starts, Hungry, not hungry, tired but can’t sleep, people constantly asking if you have Lost weight, sure have – without even trying, yes my wardrobe has size 8 – up to size 12 cause I never know where I’m going to be at with this fluctuating body of mine, the brain fog, being a grumpy mum, when all you want to do is be a fun mum, being a ho hum co-worker, all the while they all know you’re not right cause you’re not your normal loud crazy self, yes it’s hard to fake it until you make it some days, being a bitch of a wife when you just want to be the happy to be around wife, being more exhausted than ever. Life with Crohn's is never an easy ride.

When it comes to Crohn’s you always get that ‘but you look fine’ comment, the problem with invisible illnesses, you don’t see the extent of my bad days, you might see me when I’m quiet or not “on”, you mostly see the good. You don’t see the chronic ulcers inside my bowels, and you don't see me when I'm at home lying about, watching tv all I want to do is get up and hang out with my family, do fun stuff with my 9 year old, sort and clean the house, do the gardens, sort the washing, you don’t see me lying there filled with guilt that I just can’t do it, You don’t see me gutted that I can’t exercise because it will knock me on my ass for a couple of days, You don’t see me battle with having to give up sport, You don’t see me having to take time off work, and being riddled with guilt for not being there, for feeling like you’re the one letting the team down, and yes, I’m one of the lucky ones out there with this shit of a disease, I have extremely understanding and caring bosses who just want you to feel better, and yet it doesn’t take away that guilt, You don’t see me on the loo silently screaming in pain due to the stomach cramps, You don’t see me literally drop everything and run to the bathroom so I don’t shit myself, or see me snuggled up with my hot water bottle, still saying that yeh I’m all good, when inside you just want to die.

I always try my utmost best to never let my health get in the way of my everyday life, People ask, “Hey how are ya, what you been up to?” and you always answer with “Yeh all good” – No one wants to actually hear, “I’m not good, I’ve been sick, and I’ve done nothing cause I can’t” because honestly no one wants to hear you being a sad sack and I never ever want to be “that guy”!! You don’t understand the battle of actually being honest with those who love you, cause sometimes if you are 100% honest, the worry you then bring to them swings right on in and brings with it a lot of guilt that you are then making them worry.

I make a conscious effort daily, to get up and show up. I make sure I attend school events when all I want is to be at home, You see me go on camping adventures with friends and family – & yes I’m so lucky to have a husband that gets me, unfortunately tho he gets the good me, the not so good, the bad and the very ugly, and I have some amazing friends who get it & support me, but to all the others who think, she doesn’t look sick cause she’s still doing fun stuff, you don’t see the research I put into where the bathrooms are beforehand, or missing out on that drink or that meal, or that fun activity, because I just feel yuck, You don’t feel my guilt of having to say no sometimes when people ask you and the family over to visit or to go out for a meal, cause you just don’t feel it.

I try my best to never let this disease engulf me in its entirety because being me and the outgoing extravert that I am, I constantly battle to not become the introvert and loner it wants me to be. My health always gets in the way but I still get on with it, and still do now in a middle of feeling blah most of the time. I have gained strength, courage and confidence by every experience in which I have faced up to. “Do the things, you think you cannot do”

I look back on some of the days and wonder how i done it and coped, and always remind myself that things could be worse – and that’s just it. I won’t let my pain turn me and my heart into something ugly, because you can’t go back and change the beginning, but you can start where you are and change the ending.

Time to start changes!!