Crohn's and Colitis: Breaking down the clichés

I LOVE writing these sorts of posts because I know that they're not just for my own personal benefit (which most lifestyle ones have been so far - I can be unapologetically selfish sometimes I know) but this time its for anyone who wants to be able to understand and help themselves or people they know. You become part of a much wider community spreading awareness of IBD through Crohn's & Colitis Awareness Week!!

*insert any sort of over dramatic reaction you fancy*.

It's my favourite thing when you see organisations like this one come together to encourage people to be more open about a condition or illness. To actually be a part of this awareness campaign now brings this closer and closer to my heart.

I sound very much like a sort of @crohnsnandcolitisuk fan girl now but I've had my membership card for almost two years now and wave it around proudly. I think what also makes it so dynamic is how up and coming it is. It's not just new for people newly diagnosed. It's new for everyone. It's still in the process of becoming well known; becoming understood.

So, as part of my own role in this awareness week I'm going to highlight some of the cliché's surrounding IBD - which covers all forms of Crohn's and Colitis - and tell you about the reality behind them. You never know, you might even learn something ey...

1. "Crohn's disease is something old people get"

I thought I'd start with this one only because I believed this before diagnosis: I quote myself. I had heard of Crohn's here and there (not Colitis at all) and associated it with that common pre-concepted group of illnesses we stick on the older generation, alongside Parkinson's and Arthritis. This is not true AT ALL. In fact, 1 in 3 people with Crohn's Disease were diagnosed UNDER the age of 21 and it most commonly appears in young adults between 16 - 25. Funny coincidence being that this is the age most people face stress and stress is a common trigger? I don't think so. *throws a shady side-eye glance*

2. ALL our insides are messed up ALL the time

IBD can be very specific or very vague. Usually, it will only be one actual part of our gut or bowel that's affected but, in turn, that can cause complications for the rest of our body. Take me for example (not that you have much choice hehe), my left side of my colon is where I am effected currently, but if I have a flare up then I can have a very unsettled stomach and everything else you can imagine that entails...Alternatively, you can go years with just one bit being effected and then another part my flare up or it might get better. We just don't know. But no. Not all of our insides are nonfunctional and painful all the time.

3. "If you've been diagnosed you must have had a camera up your bum"

Yes, someone has actually said this to me; yes, okay, it is quite funny; yes, I have had that and, YES, my friends have had a lot of fun making anal related jokes. You've got to see the funny side sometimes - but there's no need to get arsey about it (hehe yes that's a pun - I find myself way too hilarious sorry) It's called a colonoscopy, or an endoscopy if the camera goes down your throat, and is a procedure used to look through your digestive system, usually your colon, to look for signs of IBD.

[Side note: the weirdest part is not the camera on a tube its the two giant HD screens you see your insides on. Brings a whole new meaning to getting to know your 'inner self']

4. We will have to have surgery to fix it

Not always. It's a chronic condition so it can't be cured but the earlier you get to know your own body and understand the condition, I believe, the less chance there is of surgery. Obviously it's very hit and miss and there's no categorical answer but 70% of people diagnosed will have surgery in their lifetime. Is that scary? Yes, I think so. At the same time though, I see so many inspiring people that are so clear about the fact that surgery has changed their life for the better in every way, that if it came down to it I would 100% embrace it as part of me and hope that I would be just as confident in sharing my story for awareness.

5. We sh*t a lot

I couldn't avoid this one. It's practically in the name: Irritable Bowel Disease. It's not the sort of title you want to flash about, or even write about sometimes, and every time I write about this sort of thing it pops into my head the amount of people just having a nose on my Instagram that must find this a few clicks later...hey if that's you, and apologies that you now know my life story in and out (hehe). Back to the cliché: not always. On a flare up, yes it can be bad but again, its very individual. It can also sway completely the other way. You might see nothing for a week, which in theory could be a lovely break for someone with an IBD flare up but, in reality think how BLOATED you get. Nope. Not fun.

6. Flare ups are short/long/often/rare/forever...

Unfortunately, there is no one answer for this. You can go through years and years of remission or you could have a year or more of being on a flare up with medication and ongoing treatments. Or you could have short spells of a flare up for a month or two and then remission for another month. It could even be weekly theoretically. Not every time someone with IBD gets ill IS a flare up. It could be clinical fatigue or anaemia that means they spend a week or so in bed or struggling.

[Personally, I had a flare up of about 6 months during and after my diagnosis. I then had a phase of remission on medication to reduce symptoms that lasted just under a year and then a minor repeated flare ups during A - level exam season (earlier this Summer) but nothing since! It very much depends on your trigger and your body...it can surprise us whenever it fancies it really.]

7. "You must have a really specialised diet"

Diet changes? Yes. Super healthy stereotypical lots of vegetable diets? Haha no, thank god. I'm not an unhealthy eater but wow do I know a lot of people that eat better than me (and not just my vegan & veggie friends. I feel you grinning at me - having said that I now eat Quorn so 1 - 0 to you). The one thing that you will be told over and over is TRIAL AND ERROR. It took me a good 9 months or more to figure out what foods made my colon very unhappy and what nutrients I needed more and less of. So that included going gluten free (not fun) dairy free for a short period (NO CHEESE KILLED ME) and then having to expand my food choices by more than the three or four meals I could guarantee didn't give me pain. I basically ate nothing but chicken, mash potato and peas for a month or two.

[I'm now on a low fibre/high iron/high protein diet. It's a weird combination, I know, but I'm not restricted too much. I can't eat large quantities of nuts, beans, pulses, brown bread, raw vegetables and fruit (the dream right) but I keep up my iron with red meat and green veg - broccoli is my new fave thing it goes in EVERYTHING - and mushrooms, eggs, meat (or Quorn) for protein.]

8. It's only physical

I read the other day that 47% of people with Crohn's or Colitis have experienced mental health issues due to the illness and 7/10 sufferers have a negative body image due to it. Enough said really. As much as it's called an invisible illness it can change the way you look and you do end up seeing your body in a whole new way. Don't get me wrong, this can be in a good way and a more accepting way but sadly these stats show this isn't the case always.

9. "So if you're in remission, you're just like everybody else?"

We feel more like everybody else, yes. We wouldn't tempt fate by saying it though because we're not really. Our gut still isn't functioning to its best ability - although it tries, bless - it just means our symptoms aren't fierce, we're more in control of our bodies and most importantly we WANT to do everything a normal person can do. So don't be surprised if I suddenly get really into fitness and start going to a gym (god forbid) or something similar while our bodies feel up for it.

10. "You don't look ill"

Saved the MOST important till last. This is the No.1 thing about Crohn's and Colitis and is probably the one major struggle for sufferers today. This idea that to use disabled facilities of any kind you must look in some way disabled is possibly the cause of a lack of awareness. We don't want to use them because we're afraid of the comments and dirty looks. No, we don't always look ill. No, our illness is not always on show, but NOT EVERY DISABILITY IS VISIBLE.

This is becoming more apparent and every time I see an accessible toilet with these words on I love it because it shows how much spreading awareness of the condition can actually do.

In the UK alone, there are over 300,000 diagnosed and probably more undiagnosed conditions, which is why it's so so important to get this sort of thing out there.

Shout out to Crohn's & Colitis UK for all the stats. If you want to find out more head over to their website (link below) or send me any questions!

Thanks so much for reading guys, this means so much to me. I also want to just thank everyone who's been so supportive for me over the last two years and now in Cardiff as well. Much love

XXX

#CrohnsDisease #Crohnsandcolitisuk #student #chronicillness #awareness #mentalhealth #IBD #blog