Wednesday, 22 August 2012

You Don't Crohn Me

I try very hard to make it easy for people outside of my close family and friends to understand what Crohn's is, and how it affects me. This is difficult. One because Crohn's is so complex and affects the body in so many different ways, and two because although the main symptoms are the same, everyone has Crohn's in their own way.
I try to explain the disease using humour, laughing at my defunct body and some of the situations it puts me in. This is a double edged sword though. On the plus side, it puts people at ease to ask questions or not feel they have to pussy-foot around the 'ill' person. But on the negative, I've found it sometimes gives carte blanche to joke about it and make light of the disease.
You might say, how can I complain about people laughing at Crohn's when you are the one who encourages it? Well there is quite a major difference between being able to laugh at yourself and someone laughing at you.
This is my life. Unless there are some serious leaps in modern science, I will undoubtedly have this disease for the rest of my life.
When I try to laugh about my Crohn's it's to show that I'm not prepared to lie down and wallow in those aforementioned, (and totally depressing) thoughts.
When others make light of what I, and so many others suffer from, its incredibly frustrating. Its insulting. It then makes me feel perhaps I'm being too sensitive. But either way it doesn't matter because it's how it makes me feel and that's uncomfortable.
Crohnies suffer pain and discomfort of some form most days. Anyone who has a crohnic illness knows how much of an effect this can have on your state of mind as well as your body. When it feels like there's no light at the end of your colon it helps to be able to smile and laugh. Please don't make that more difficult for us than it already is by making us feel we have to hide our light away. Laugh with us, not at us. Be nice about our bowels and they'll be nice to you. (That's a threat and a promise).

Tuesday, 14 August 2012

The Bowels Are Not What they Seem

Its almost my Crohniversary! Almost 2yrs to the day since I was officially diagnosed with Crohn's Disease.
Let me tell you a little bit about myself pre Crohn's;
I would say I was probably a bit of a drama queen. I revelled in arguments. I loved to make a mountain out of a molehill and went through all the normal teenage angst of thinking the world (and my parents) were against me. I liked to think everything I wanted was going to simply fall into my lap and my life would turn out as I wanted with minimal effort on my part. If something didn't go to plan it was simply someone else's fault - no question. As I was so wonderfully perfect how could it be my fault? I was as contrary as could be.
This phase of my life didn't last too long, thankfully. It didn't disappear entirely however, various ups and downs I encountered over the years to follow kept me in the mindset of my responsibility for my own actions having to be minimal.
Looking back I certainly don't think this was all outwardly apparent, perhaps to those closest to me, but on the outside I probably seemed pretty mature, I suppose I was - I knew my behaviour was that of an arse but I wasn't quite mature enough to stop it entirely.
This idiotic attitude calmed as I got older and then post diagnosis, stopped altogether. I was suddenly in a whole other realm of responsibility - this time I couldn't blame the Gods, my parents or anyone I saw fit to for my disease, as it was entirely irrelevant. Blaming anyone for Crohn's and having a hissy fit wouldn't make this go away.
I did the opposite to what my younger self would've expected me to do, and refrained from shaking my fists and sobbing at how the world has turned on me and gifted me this horrible disease. I didn't give it big licks on the "why me?" front.
I DID cry, I got angry at my own body, the doctors for not being able to fix me, I grieved for the loss of my health, then I sucked it up and focused on feeling better. I listened to those same doctors and paid attention to what I needed to do to get better.
Now, post Crohn's, I am definitely a different person. I'm not angry. I don't worry as much as I did before - because I know I can face whatever Crohn's has to throw at me. That doesn't mean I will relish the future with an incurable disease, but it does mean I know I am strong enough to cope with it. I don't look on everything in a negative way anymore, I look at what I have and what I almost lost and smile at how lucky I am. I don't take anything or anyone for granted and love passionately and unconditionally.
I embrace my disease and try to help others do the same. I use all my best qualities to my advantage and strive to see the best of what should traditionally be a negative thing. I'm not going to go down the road of it being fate that I got Crohn's because I don't believe that, I just see it as the kick up the colon I needed to see life as a positive thing and not something to waste on negative thinking.
So if you are in the same position I was 2 years ago and it seems like the world is ending, please believe me when I say it isn't. Crohn's is a terrible disease and can take over if you let it, so don't. It really is that simple. It took me a while to work that out so I'm giving you a heads up here! You are stronger than your disease. Don't let it define you.
Crohn's may have ravaged most of my insides, and a lot of the outside, but the only part of my body it can't reach is my brain, and I'd like to keep it that way.

Tuesday, 7 August 2012

The Sword In The Crohn

"Can you rate your pain on a level of 1 to 10?"

A question we as Crohnies are asked more often than most. Pain and Crohn's go hand in bowel. We can experience pain regularly, depending on the severity of our illness. Some suffer incredible pain during diagnosis and early treatment, later either going into 'remission' or finding the pain much more manageable. Others are in constant pain and discomfort of varying degrees.
For me, the pain I experienced before my diagnosis was something I've never been able to properly describe. Most people liken the pain of Crohn's to labour pains and contractions; having never had any bambinos myself I can't agree or disagree. Only difference there of course, pregnancy is over after a few hours, this is a pain we have to manage for the rest of our lives. Slightly daunting prospect that.
Pre Crohns and prior to visiting a doctor, I suffered horrendous pain in my stomach, lower back, legs, and ached all over the other bits I haven't mentioned. I visited the doctor a few times complaining of these pains but was left feeling stupid and made to feel I was over reacting - this pain was probably just indigestion, trapped wind, or period pain I was told curtly. I knew it was none of the above, I knew something was seriously wrong but I was also the one feeling helpless and at the mercy of my GP.
The last visit to my GP consisted of me lifting my blouse to let her examine me, almost passing out when she touched me then collapsing into tears. She suspected I had appendicitis and wanted me rushed to hospital. I say 'rushed' - I was to walk home, get a bus, sit out a 40minute journey then check myself into hospital.
A few awful months followed where I was in and out of hospitals awaiting the entirely inappropriate operation to remove my appendix.
Thankfully they never actually got round to it, and I was eventually diagnosed with Crohn's. Throughout all of these trips to and from hospital, I was in incredible pain. Pain that seemingly no treatment could begin to touch. Any medication brutal enough to have a go at the pain made me violently ill, and unsurprisingly vomiting didn't ease the stomach pain any.
Crohn's pain cannot be explained away by quoting a number between 1 and 10. It's unique to each patient and everyone's pain thresholds are different. I understand doctors and nurses need some form of tool to measure pain but as a patient there truly aren't enough words in the dictionary to convey pain.
The pain I went through prior to my surgery was staggering. It meant I could barely walk, breathe, or do anything more than lie in the one vaguely comfortable position I could find, stiff as a board, until it either subsided or I fell into a drug induced stupor. Preferably both.
Now I suffer more from sickness and all the other lovely symptoms of Crohns on a daily basis. This is far from pleasant but a relief that the pain is minimal. And I can eat without feeling like I'm trying to digest razor blades, which is a lovely bonus.
When the pain strikes, like tonight, I remember how awful my life could be and feel thankful I'm not suffering like this everyday. I also panic a little that it won't pass and I'll be back to where I was pre-diagnosis. But mainly I think of everyone else who is going through the same thing. How they may be feeling this same pain too, now and everyday, and how awful that must be. And how I wish there was anything I could say to them to soothe an achy gut. But all I can do is try to sympathise, and show others the same consideration and tolerance I would hope others would gift me.

So, how is your sympathy, on a scale of 1-10?