I know 4 people in the same boat as me who have lost their colon from Crohn’s & Colitis, and a very large part of me is constantly terrified that my fate will be the same. Someone explained to me a few months ago that “it was the best decision ever made [for me]”. All that attachment i feel towards my intestines will eventually fade over time, she said. “When the going gets really tough, and no amount of infusions or tablets will even scratch the surface, then you know that they’re better off outside of you because eventually, you will die.” Massive thumbs up. Great! I can take fortunate gratitude in knowing that the extent of my disease is no where near death. As morbid as it is to think about, I’m glad that any immunosuppressant brought on fatal illness or bowel perforation is probably several decades away but still, it’s a daily struggle not to break down in a corner and wallow in the chronic pain and fatigue that attacks my body. I had felt this way for a long time prior to diagnosis – almost 10 years in fact. No doctor even considered the possibility that I had anything more than IBS. “Oh, but aren’t they quite similar?” I’ve heard this question a million times. And the answer? No, not really. In fact they’re completely different. OK, so maybe two or three of the symptoms felt are the same – abdominal discomfort, changing poo, fatigue. But when it comes down to one simple blood or stool sample, the results are so different. In those 9 years between developing symptoms and my diagnosis, not once was i asked for a poo in a pot, until the very end. Even if i had been in remission on that particular day, something would have shown. I highly doubt that any doctor i saw as a teenager even considered requesting an F-Cal – she’s just another young lady with IBS and can’t cope with the cramping. The sad reality is that it’s not just me who would have been through this. Countless, possibly thousands of other patients would have had their concerns brushed away as yet another viral infection, or food poisoning, or just wind.
It’s IBD Awareness week, from December 1st-7th. “Oh what! Not ANOTHER awareness week!” I know, I know, so many of them. But they all mean so much to people and the chances of at least one of these awareness weeks meaning so much to you, are quite high. You could know, or have been someone who’s had cancer, lost a baby, likes to save dolphins or even just supports mental health. These weeks matter so much, to so many. This post isn’t calling for donations or worse, pressuring anyone into feeling sorry for me – that’s the last thing i want. I’m sick and tired of people asking how i am, with that classic worried frowny concern on their brow. The answer is always going to be the same – “I’m OK, it could be worse” and it bores me to say these six words almost every day. The ionic truth is that I fought for a diagnosis for so long, to only realise at the end that i don’t want it. I’ve written before about my lack of enthusiasm for taking pills, having blood tests on the reg, frequently spending my day in the bathroom (LOL) and making excuses not to do things with friends because i’m terrified of leaving the house. It’s starting to become a problem, especially as my baby turns 7 months and needs constant outside stimulation. I used a disabled bathroom yesterday as i didn’t have time to run up 5 escalators to get to the Women’s. I came out after 20 minutes or throwing up from both ends – yes it’d disgusting and hilarious but it does happen hahaha – only to find an old lady angrily lecturing me on bathroom etiquette. I walked away, feeling ashamed and so ill. Mostly ashamed of myself for not telling that lady how she should be careful of whom she’s criticising as not all disabilities are visible, but i couldn’t find the strength. Even if i had the energy to find my Can’t Wait Card to her, i doubt she would have realised what i was on about. I just want to point out that she didn’t have a visible disability either, so shame on her all over.
I decided a few months ago that i needed to do more to raise awareness of IBD and try to help all of us more in gaining the recognition we deserve for having an invisible disability. There is such a lack of knowledge on the Disease and it is far too lacking in funds also. In the next few weeks I’ll be launching The Shop on my blog, with a percentage of profits going straight to Crohn’s and Colitis UK. I’m hoping that together we can fight autoimmune diseases and start to knock down that stigma or a visible disability. None of us should feel guilty or ashamed for asking to sit down on a bus or train if we’re feeling unwell, just because we don’t have a walking stick. I’m tired of feeling nervous of leaving the house, knowing that i’ll hold someone up in a bathroom, or “skip” the queue, heading for the disabled sticker instead of the triangle with a circle on top.
Help me, to help us. XOXO
The Shop coming soon to crohnicmumma.com