Thursday, 24 December 2015

I LOVE Christmas... and cheese

I am creature of routine, and for many years now Christmas eve has meant cheese and wine, opening presents with my mum and watching Muppets Christmas Carol.

You can NEVER have enough cheese

Monday, 7 December 2015

Do you think #GetYourBellyOut has had an effect on you or the public perception of Inflammatory Bowel Disease? If so, how?

I usually ramble on in my blogs so I have set myself a challenge – 200 words max per blog for Crohn’s and Colitis awareness week! 

Here is where we (hopefully) get to feel warm and fuzzy inside for making a difference! No matter how big or small we have affected you, we want to hear it.
#GetYourBellyOut aims to raise awareness of IBD, fundraise to find a cure through Social Media campaigns and merchandise and support those suffering through our Facebook group, Twitter and meets.

I don’t know if I should answer this really. Of course I am going to say yes!

We’ve made over 40,000 pounds worth of difference.
We’ve brought people together in friendships and romantic relationships.
We’ve spent many hours supporting people suffering with IBD, til some god awful hours in the morning.
We’ve gained some truly loyal supporters who take part in every little idea we have.
We’ve got Crohn’s and Colitis on TV (Pride of Britain).
We’ve got Crohn’s and Colitis in the papers and lots of magazines and lots of online stories.
We’ve arranged meets so that sufferers get to meet other people that they don’t have to explain everything to.
We’ve got awareness merchandise that has been shipped around the globe.
We’ve gained the trust and support of national charity Crohn’s and Colitis UK.
We’ve had the biggest party / gathering of IBDers in the form of a charity ball.

Some people still think we’re an ostomy campaign and that’s unfortunate but slowly we will make a difference. Slowly WE WILL make the world understand IBD.

And on a more personal level, #GetYourBellyOut saved my life and made me comfortable with me.

Sunday, 6 December 2015

Who has been your main support since having Inflammatory Bowel Disease?

I usually ramble on in my blogs so I have set myself a challenge – 200 words max per blog for Crohn’s and Colitis awareness week! 

It’s difficult to explain what it’s like living with Inflammatory Bowel Disease on a daily basis and it’s not something that anyone should have to go through alone. Here’s your chance to give thanks to those that have stood by your side, looked after you when you’re sick, given words of comfort when you’ve needed them, understood your limitations when you can’t function like the other people in their life, listened when you needed to talk (even if they don’t fully understand) and that love you without question exactly AS YOU ARE.

My favourite thing that people can do is ask if they don’t understand, or even get on Google and look it up.

I’m not much of a talker. It’s not new news. I feel like if I want someone to understand the disease then I have to tell them my story but it’s not a place I like to revisit, and looking back, I see a much weaker version of me that I don’t want to look at. When I go back there in my head I feel like some of that weakness creeps back in.

I don’t like being looked after, I don’t like hospital visitors, I don’t like to be a drain on anyone else whether that’s physical or emotional support. I’m much more comfortable alone when I’m sick.

However, a special thanks must go to my mum who not only attempts to help when I’m poorly (only ever accepted when I’m recovering from surgery but still, the offer’s there) but is also a massive advocate for #GetYourBellyOut. She tells everyone who’ll listen and is always trying to sell the merchandise – yes she really is one of THOSE annoying gits!

And I love her for it. That, and I have no choice.

Saturday, 5 December 2015

Highlight an invisible symptom of Inflammatory Bowel Disease which you feel affects you

I usually ramble on in my blogs so I have set myself a challenge – 200 words max per blog for Crohn’s and Colitis awareness week!

IBD is mainly an invisible illness. With no physical signs of disease, it’s often difficult for people to understand how much pain you’re actually in. “But you don’t look sick” being one of the worst things you can possibly say to someone who is chronically ill. With many Inflammatory Bowel Disease sufferers also struggling with depression, PTSD, anxiety, joint problems, nausea, eye issues, fatigue and  stress (the list is endless) we’re just whole heap of ‘sick’ with no visible symptoms!

I guess the general assumption would be that the main thing to be highlighted would be the amount of time one spends on the toilet. Not for me.

The pain is a bastard, don’t get me wrong, but it’s funny the things that you get used to.

The one thing I cannot get used to is the fatigue, even when I am not flaring, the fatigue feels like a constant drain. I feel like I’m not a fully functioning human being. The ability to concentrate is harder, not only at work but also for the things I enjoy in my own time like reading or writing. Keeping control of my emotions is and keeping my stress and anxiety in order seems a lot more difficult. The urge to socialise gets smaller and smaller and worst of all is that people don’t understand that just getting an early night or taking a nap won’t help!

Friday, 4 December 2015

If you could change one thing about the public’s perception of Inflammatory Bowel Disease, what would it be?

I usually ramble on in my blogs so I have set myself a challenge – 200 words max per blog for Crohn’s and Colitis awareness week!

#IBD has undoubtedly become more common in the press / public eye over the last 18 months but it is now, more often than not portrayed as a disease which always end with #surgery being needed when that is not the case.

The main thing I’d like people to understand is that there IS NO CURE. There are people that have IBD that don’t suffer on a daily basis. There are people that manage to stay in control of the disease with medication for the rest of their life. They are lucky. We are NOT all lucky.

Because there is no cure, there are thousands and thousands of people that are constantly battling with their own body and on top that, battling the medications and their side effects that we’re using to TRY and get the disease in remission. Surgery is always a last resort, but it’s still not a cure. I’m 6 surgeries down and I’m not done yet. It’s claimed by many specialists that a sub total colectomy (removal of the whole colon cures Ulcerative Colitis) as it only affects your colon – so when it’s gone, the disease has gone. They fail to mention that if you have a pouch made from your small intestine to serve as your rectum then IBD can return, in the form of pouchitis or cuffitis, bringing with it the same symptoms and old and new IBD medications to treat it.

Cured – I’m not cured…

Thursday, 3 December 2015

Name one thing you feel like you’ve learnt or gained since having Inflammatory Bowel Disease

I usually ramble on in my blogs so I have set myself a challenge – 200 words max per blog for Crohn’s and Colitis awareness week! 

In the same way that a lifelong, incurable disease can have a negative effect on your life, it can also be the start of some positive changes. Tell us what you have learnt or gained since having IBD.

The best thing I’ve gained since having IBD is a new attitude to life. I’ve nearly popped off the planet a few too many times at the ripe old age of 27, and living as a ‘sick’ person means you have to make the best of ‘well days’.

Life’s too short. I’ve a low tolerance for bullshit and drama. I like to ask myself, on a scale of 1 – death, where is this issue? Does it actually need my attention? Will it change my life if I ignore it? Is it worth getting stressed and possibly flaring over? If the answer’s no. Don’t bother.

I want to do things that scare me. People often ask “brave or stupid?” about certain people or situations. I believe there’s generally an aspect of stupid in brave but being scared makes you feel more alive. I want to know that I’ve pushed the boundaries for myself and the boundaries of others. I want to go on the biggest rollercoasters, play with snakes (massive fear), throw myself out of planes (I’m scared of planes AND flying), because when you’ve done something you thought you could never do, you’ve ACTUALLY achieved something worth being proud of.

Wednesday, 2 December 2015

Name one thing you feel that you’ve lost since having Inflammatory Bowel Disease

I usually ramble on in my blogs so I have set myself a challenge – 200 words max per blog for Crohn’s and Colitis awareness week! 

Living with a lifelong and incurable disease can cause many changes in the way a person lives their life.
What is one of the things you feel that you have lost since having IBD?
Maybe it’s part of your digestive system. Maybe it’s your self-respect. Maybe it’s friends / family. Maybe it’s your dignity.

If I’m to choose only one thing then I’m going to have to say, my dignity. When you’ve had cameras and fingers stuck up your bum, laid in your own waste because you’ve shit the bed or had a bag leak and someone else has had to clean it and you up, been showered by someone you’ve never met, vomited on yourself, vomited on other people, cried and shouted at everyone for everything and nothing, had to be taught to walk again because your muscle fecked off when you were ‘laid up’ and have to administer your own enemas to treat a flare, it’s pretty safe to say you’ve nothing even closely resembling dignity left.

So… you can usually find me making an arse of myself in public somewhere, be it in a ridiculous hat, dancing like a moron, singing badly, falling over, flashing my bum, shouting at people in a pub toilet or just generally embracing my geekiness for the world to see.

There’s a lot of fun to be had when you have no dignity left! Maybe you should try it some time. It’s the kind of freedom everyone should experience at least once in their life!

Tuesday, 1 December 2015

When were you diagnosed and with which form of Inflammatory Bowel Disease?

I usually ramble on in my blogs so I have set myself a challenge – 200 words max per blog for Crohn’s and Colitis awareness week! 

Over 300,000 people have been diagnosed with Crohn’s or Colitis within the UK alone!
Some people have a really long and hard journey before they are even diagnosed and for some it’s one major flare leading to being diagnosed straight away. It can be a relief to actually have a name for what you’re suffering with – and then comes the treatment!

I got sick fast and after just two weeks at home in bed doing nothing but sleep and crap blood and mucous, whilst being treated for IBS, I was admitted to hospital.

I was whisked for a colonoscopy straight away and diagnosed with Colitis on the spot, in September 2007. After a week in hospital and no improvement from the intravenous meds I was taken for surgery to have my colon removed and an ileostomy formed.

I feel lucky in the sense that I was diagnosed so quickly because I have heard many stories of years of pain, wrong medication and false diagnosis’. I didn’t have to spend years feeling like I was not being listened to or like I was making things up like many others have. I do feel I have since made up for this though!