27 March 2014

#GetYourBellyOut

I was REALLY hoping to avoid blogging this week and hoped other bloggers would take up the story but as the majority of people tend to fend for themselves and as my mother usually says "If you want a job done ....do it your blooming self!!" So...

Let me introduce you to the new IBD awareness campaign ....

After 3 days of continuous hard work I am tired, agitated, annoyed, warn out, a bad head and a puffy swollen hand. I'll be honest and say that I have neglected myself a little and put my body on the line but HOPEFULLY you would have heard people talking about the #GetYourBellyOut awareness campaign.

For those who are unfamiliar with Crohn's Disease or Ulcerative Colitis here is a little snapshot of what these life changing illnesses are:

Ulcerative Colitis and Crohn’s Disease are thought to be due to an imbalance of bacteria in the gut/colon. In the average person there is ‘good bacteria’ fighting off the ‘bad bacteria’. When it comes to those with the illness it means our good bacteria is working over time and trying to fight off an infection (the bad bacteria) which does not even exist. So instead of attacking the bad bacteria, it attacks the wall of our intestines/colon instead. This leads to inflammation and ulcers, cramps and pain.

Main symptoms just to get you up to speed are vomiting, fatigue, more trips to the loo, loss of appetite, weight-loss, swollen joints and many more. Not to mention all of the secondary symptoms from medications and problems caused by taking these long term. Alongside these there are things like anxiety, Iron deficiency, depression etc, the list is endless! This results in extensive trial and error to find a medication to soothe the symptoms. Some unfortunate souls end up having to have serious invasive surgery to avoid blockages, ruptures and all sorts of complications. There are far too many now living without parts of their colons/intestines.
3 days ago I noticed a tweet over on Twitter by a lady called Sahara, this was her photo ...
She had posted the photo for IBD Awareness. So I seized the moment, took a BIG deep breath in...and added my belly photo into the mix. At the time of posting my photo I wasn't really aware of what I was getting myself into Aha, as my usual blogging style goes...make it up as you go along!!

NO, taking a photo of my belly was NEVER the plan when I started my blog nor was it my idea of fun to then go and post it onto the internet (yes, I did hover over the send button)...now some how it has been plastered all over social media and the inter web forever and a day (oh golly, I really didn't think this through did i? aha)  I stand firm in my reasoning for doing so, to help raise awareness of Crohn's Disease and Ulcerative Colitis.

Recently a craze swept the world pretty much by accident called '#NoMakeUpSelfie' in the aid of raising funds for the charity Cancer Research UK. This consisted of people posting photos of their beautiful and natural faces for the world to see, then nominating friends to do the same and donate £3 a time to the cancer charity. No I do not understand what a face make-up free has to do with the campaign but for some reason unbeknownst to me it did. Horah! That resulted in the charity raising millions of pounds for research...which can only be a good thing right??

With the above campaign in mind I had a cheeky word with Sahara (the lady who posted the above photo) and suggested we add a unique hashtag so that everyone, no matter if they had IBD or not could hopefully join in with our awareness campaign. From out of no where I plucked '#GetYourBellyOut' which was connected to the charity page Sahara and a lady Gem had already set up. Finally another lady named Lorna joined us and the campaign leaped into gear. We decided the rules would be to either post a photo of your belly and include the hashtag (so that they all ended up in the same place) then nominate friends to do the same or alternatively people too shy to get their bellys out would donate a small amount (£3) either by texting the charity number 70070 or by CLICKING HERE to donate via the JustGiving page.

Never would we have imagined what was in store for us...

That was now 3 days ago, since then I have been tirelessly tweeting, posting, sharing, talking, eating, sleeping and breathing the IBD awareness campaign.

I am THRILLED to tell you that the campaign has gone from strength to strength. Through the past 3 days people have increasingly been joining in, donating and most importantly discussing with friends and family and raising the vital awareness that is needed for these unknown and hidden illnesses.

Unlike the NoMakeUpSelfie trend, the #GetYourBellyOut awareness campaign for Crohn's Disease and Ulcerative Colitis is ACTUALLY connected to the photos people have been posting. Fighters of IBD have shared their most personal journeys, battles and stories with the whole world. It was time the whole world took notice of how serious and at times just how invisible these illnesses can be. Who can deny that from seeing the vast array of photos which now circulate the internet.

The support from friends, family, work colleagues, school friends and strangers has been phenomenal!!! Never have I seen so many 'Likes' 'Favourites' and supportive/encouraging comments flood in. This campaign has already done wonders for building everyone's body confidence and rebuilding peoples self-esteem. I still can't get over how amazing, brave, strong and inspirational all who have taken part have been. Hopefully this is just the start and we have a long way to go!!

The campaign has already raised £830 in the last 3 days alone. My hope is that this will continue to rise as more IBD sufferers coax their friends and family to join in the campaign. This has been the biggest opportunity to make a real difference is raising the awareness of IBD, each individual who posts their photo is making a difference, a change in bringing us all one step closer to having Crohn's Disease and Ulcerative Colitis become household names!!

Later all photos posted will be compiled into one awesome campaign video but for now I will leave you with a TINY tiny amount of the photos that have been posted so far....
... I hope to be able to add your photo in with the avalanche of those we have already seen on Facebook, Twitter and Instagram!!

Until then do let me know what you think about the campaign. Xx

**Update** I'm thrilled to tell you all that the #GetYourBellyOut IBD awareness campaign has now raised over £17,000!!

Please watch the campaign video by the wonderful Thaila Sky>


*** To read part two of our #GetYourBellyOut campaign simply CLICK HERE ****

21 March 2014

Making a difference.


Aside from the hoards of wonderful people who put their body's, time and endurance on the line to raise such vital funds towards research for Crohn's Disease and Ulcerative Colitis there are those diamonds who are working hard on raising awareness of these illnesses. Of course the fundraising is an essential part in the journey to finding a cure but so is the great work done by those doing their part to raise awareness. For many people have simply never heard of Crohn's Disease or Ulcerative Colitis. Thank's to the continuous work from the IBD community thankfully things are beginning to change and people are becoming more willing to talk about it. So with this said, I contacted one of these shinning stars - Michael to ask him a few questions about his new campaign to raise awareness...

Hi Michael, you have a new campaign called 'Colitis Awareness GO' can you tell us what it's all about?

'Colitis Awareness Go' is simply about increasing the awareness of IBD, specifically Ulcerative colitis, amongst young people in the UK. It also aims to promote the charity 'Crohn's and Colitis UK' - if people don't know about the disease, they won't know about the charity and visa versa.

I saw you had already done your first talks about IBD, how did they go?

My first two talks at one high school's sixth form went amazingly well. The students were very respectful and listened intently to what i had to say. Some of the information i gave hit harder than they expected, and i even saw a few tears. But it left them all feeling positive about their own lives, i think.

You're also hoping to raise funds towards much needed research at these talks, how are you hoping to do this?

By asking for donations at my talks, and by selling unique "Ulcerative Colitis, Increase Awareness" wrist bands. All profit made on these will go to the charity [Crohn's and Colitis UK] and I hope that they will also become a talking point amongst friends, which in turn will increase awareness.

What do you wish people knew about Ulcerative Colitis and Crohn's Disease?

I wish people just knew they existed! Its so hard to live with a disease that has so many challenging symptoms, and have no one know about it or understand it! It makes it much harder to talk about with friends.

If you are a friend to someone who has Ulcerative Colitis or Crohn's Disease how can they support them?

Ask them, daily, how they're doing; how and what their symptoms are like, how their medications are going etc, just seem interested. Nothing sucks more than suffering and feeling that no one cares.

What would your advice be to those wanting to do a campaign similar to 'Colitis awareness GO' in their own country?

Just speak to as many people as you can about it. Don't sit in silence, don't feel ashamed and don't feel alone. Get out there and talk to people and before you know it, you'll have met a tonne of people with the same condition as you!

You write your own blog so tell everyone a bit about it and how they can follow your journey with Ulcerative Colitis...

I document my journey with UC weekly, daily on an interesting week. Its www.ibdsurvivor.blogspot.co.uk and it is full of information about my journey with colitis, pre and post ileostomy, and provides advice for those that are struggling through similar things.

How can people in the UK get in touch with you if they want to nominate their school/college/university for you to come and visit them for a talk on IBD?

If you want to get in touch, PLEASE email me at wyatt2401@icloud.com or post on my blog. I would be honoured to come and speak to you all.

Thank you Michael for taking the time to tell everyone about your brilliant campaign 'Colitis Awareness GO'.

It goes without saying that I could have interviewed a number of people about their on going campaigns to raise awareness for both Crohn's Disease and Ulcerative Colitis. I chose to speak to Michael not only because it was he who inspired me to start my own blog about my journey with Ulcerative Colitis but because I think his campaign will really make a difference. IBD effects mostly the younger generation and so for Michael to be talking to schools and engaging with the students who it is most likely to effect I feel will make a huge difference. Hopefully some will gain strength and courage in seeing Michael discuss his Ulcerative Colitis so bravely but also I hope others will have a better understanding and make life a little more comfortable for those living with IBD.

I'm sure you will all join me in wishing him nothing but the best of luck for 'Colitis Awareness GO' and for continued improvement in his own fight with Ulcerative Colitis. x

15 March 2014

Dastardly Visitors

I am attempting a new form of writing tonight, I'm calling it 'distraction blogging'. It's a Saturday night and instead of being out on the town, being silly and dancing until the early hours of the morning I'm taking it easy. Instead because of my Ulcerative Colitis I am sat indoors, snuggled up with some fab music on and updating my blog. Apologies in advance if I begin signing because believe me when I say - I can't haha! This, staying in on a party night is my new reality now so best to make the most of it right?!

I wanted to talk about Visitors. Whether they be invited or the uninvited kind.


I'll be the first to admit that I'm not keen on visitors, of either kind. I guess in one way that makes me sound anti-social and maybe I am. To me, being at home is where I can relax and be totally myself. I mean Totally!! The hair is a mess, the pajamas are on and I slob around like I should be ashamed - I'm not ha! For being at home should be the place where I feel free to do whatever the heck I choose to do. If I want to dance like a plonker to a really great tune on the radio then chances are the neighbours will have great free entertainment for the evening. I like to feel relaxed, where the eyes of the world are not on me and the only place I get this is my home.

Don't get me wrong, I'm not putting up pretenses when I am out in the big wild world but at home is the 'me' no one really wants to see. Goodness knows what my future husband will make of the at home me because its not pretty haha.

When I was younger my mates seemed to think we had an open door policy at our house. Yes we were all kids and probably didn't know any better but they used to take it upon themselves to just SHOW UP. If you were lucky and they were feeling polite you would get a knock on the door - though this rarely happened. Instead they would just barge in and make themselves at home. I tired all sorts to avoid the unwanted visits. I mean hanging out with your mates when you're in the mood for it and it is on your terms is much more enjoyable than simply putting up with someone who just shows up. So I tried valiantly to avoid these pesky kids (they were also my good friends on the times they were welcomed into my home so don't feel sorry for them ha I promise I was good to them). I found myself hiding in my wardrobe, attempted to bribe family members to tell them I was not in (I was a child, if I was not out with the people enquiring for me where else would I realistically be?! and I think they knew this) so I took to hiding underneath my bed. Needless to say none of these plans thwarted their eagle eyes and they found me every time.

Now I am older and have since moved house I guess they no longer have the same open door policy opportunity. A good 15 years on I still don't like visitors. I mean can you blame me?! Maybe I am rebelling against those in my childhood now that I have a little more say over who comes to my front door. The worst visitors by far are the 'unannounced visitors'. The ones who show up because they 'were passing'. I am slobbed out on the sofa with half a demolished sandwich between my teeth and now I'm expecting to roll out the red carpet for you and welcome you in for a chat. Hmm don't think so. Again I hide behind my sofa, hope they feel no one is in and retreat to their own homes. Oh come on, I bet there are plenty of you who hide behind the sofa!

My favourite visitor is the delivery man, even though I have to SPRING out of bed, sprint down the stairs to find the keys and open the door to run out into the street waving my arms about all in the time it takes for him to walk ten steps back to his van - challenge accepted! No I do not have my eye on the postman ha! The poor bloke gets an eyeful of the 'at home me' which makes him a brave man and it's no wonder he runs back to his van so quick.

I'm totally awkward around visitors and this goes for handy men too. If something needs to be fixed in the house I usually retreat to the safety of my bedroom and lock myself away there until they leave. I feel really silly and never know what to do with myself. I can't simply 'get on' with my usual around the house behaviour because breaking out in song will make them leave and not want to return.

Since becoming unwell with Ulcerative Colitis I dread people calling over even more. My house is super hollow; there is never enough going on here for me to blend into the background and not be noticed. Who wants to be flattened on the landing because I've needed to run to the bathroom in the blink of an eye. Then you have to face the possibility of meeting them on the return from the bathroom a good while later #Awkward!

Don't get me wrong, those who are poorly need to see a friendly face from time to time. We enjoy your company when we are not so utterly exhausted. Where would we be if it were not for the support friends and family give during tough times. My advice to those thinking of visiting would be CALL IN ADVANCE - I'm no talking 'I'm around the corner I'll pop in' no; because that will just put us in a flap, make us worry and land up in a panic. Give us a little head start and make your visit SHORT AND SWEET!  If someone you know is having a really tough day maybe cook them tea and let them know you're doing to drop it by. I'm sure the quick gesture will go a long way! Chances are that we wont be up to entertaining you because honestly we are so tired simply trying to hold ourselves together. There for maybe drop some magazines off to show that you are thinking of us without you being here so long you sink into the sofa. Sometimes the short visits are the most treasured.

In all honesty I just hate visitors! This is my home; it's my space to relax, unwind and be a complete mess. If I feel like entertaining guests then that is completely different, I have invited you over on MY TERMS. This usually means I've had time to tidy a little, brace myself for your arrival and put my best smile on.

What do you think? Do you embrace visitors or do you hide behind the sofa like I usually do?! What things do visitors do that you like? Let me know your thoughts and opinions in the comments box.

12 March 2014

Everybody's talking...

I already know I'm going to enjoy writing this post, why? Because unlike my last post this one is on the positive side and looking forward to the future.

'Everyone's talking'

I was super lucky to have started my humble blog 'Colitis and ME' back in December of last year (2013). Little did I know then what was to come. Through GooglePlus I met a wonderful man called Frank, founder of 'The Crohn's Colitis Effect' who's sweet young boy suffers with IBD. Frank I think was the first person to mention words similar to "2014 is going to be our year".
Well Frank how right you were!!

Already we are in March of 2014 and I'll be the first to admit that the time has flown by. I am so thrilled with the amount of awareness, coverage and debate going on this year with regards to Crohn's Disease and Ulcerative Colitis. We must of course take the time to thank those who were there before us, working tirelessly on making these illnesses a 'house hold name' (again, a lovely quote by Frank). I happen to have jumped on the band waggon at just the right time. How is that for time keeping ;) HA! Trust me if you knew me personally you will know I am THE WORST time keeper - at least now I just blame it on my Ulcerative Colitis.

So far this year in the UK alone there have been sports stars who have spoken out about their battles with IBD. We have had a TV personality speak out about her new diagnosis and rumoured to be partaking in a documentary/show discussing her personal journey with Crohn's Disease. There is at present a father rowing the Atlantic to raise vital funds for the charity, they have raised over 100 thousand pounds which is a fantastic feat! Alongside this there are charity balls, marathons and fundraisers all planned for the near future.

All of this is going on in the UK, with similar actions being taken across the whole world. From America to Canada and further afield, everyone is talking.

Aside from these incredible people who go far out of their way on our behalf, there is also YOU. Yes YOU, my wonderful blog IBD'ers and readers. You have all been doing your bit to ensure both Crohns Disease and Ulcerative Colitis are talked about. Some who have visited this blog might not have known about or known very little about these chronic life long illnesses. Now hopefully you know a little more about it. Hopefully you will have found the courage and strength to speak out about your IBD and how it effects you. Maybe you have found comfort and support which is the first step to feeling comfortable with your illness.

Whoever you are and no matter how big or little of a dent you are making on this long long road to making Crohn's Disease and Ulcerative Colitis house hold names I would like to thank you! For people are depending on you. For future generations not to suffer, for those who have suffered for so long already to find peace, for the world to one day be rid of IBD. You are all playing your part.

From the bottom of my heart I want to say THANK YOU!! Thank you for reading my blog, for all you do for IBD, for fighting such a horrible illness and not giving up, for educating yourself on IBD, thank you.

We have a long way to go until we reach the end of 2014, let's be able to say that 2014 was the year we all stood together, strong and united and can be able to say ...

"2014 was the year we all discussed Crohn's Disease and Ulcerative Colitis"

9 March 2014

A tough battle

This is going to be one of the more challenging posts I'll be composing. Not only due to the fact that my computer is broken and I am now forced to type on a device that is not even capable of keeping up with the speed of my typing, but also due to the horrible nature in which autocorrect likes to make a right goof ball out of us all. So needless to say I am out of my comfort zone and hoping this does not go drasticly wrong ha. Despite my technical issues I feel compelled to blog about my day.

I recently read a blog post in which it listed the different stages one goes through before coming to terms with a life long illness, these range from denial to despair, sadness, depression, anger and finally acceptance. There may have been a few other stages thrown in but let's remember I can't cross reference anything as it feels like I am in the dark ages typing this post. It's fair to say we have all faced these stages along our journey with Crohn's Disease, Ulcerative Colitis, IBD or whichever illness you are tackling.

I have done the denial stage, I lived for so long shouting 'Ulcerative Colitis is only a small part of my life' 'IBD does not define me' oh how wrong I was. Over time it starts to take over your life, try though as you might to push it to the back of your mind it's still there lingering. A constant reminder that life is now so much more of an every day battle just for a 'normal' shot at life. IBD does define you, it's shaping you into a completely different person than the one you were before chronic illness took hold; whether you're comfortable accepting that or not is another point entirely.

Sadly I am far too aware that I am not alone. This week I have seen oh so many status' and read peoples blog posts, a word that I have seen more this week than most. What word is it I am speaking of - ANGER.

It does no one any good to hold onto anger but it creeps in regardless of how hard we work at not letting our illnesses get the better of us. I too am firmly in the clutches of anger this past fortnight.

I still grieve for the life I have lost/ left behind. I spent the past 21 years building a life I enjoyed; a life with the freedom of my own, to come and go as I pleased. I was only beginning to enjoy my existence and finding my way in the world up until I got diagnosed with Ulcerative Colitis; then the life that I had once known came crashing down around my ears. Imagine it, life as you know it ripped right from under your feet.

You now have a new challenge, one of having all of those past happy memories of a life you were once building whilst trying to carve out a whole new existence from step one.

Now I am a strong willed individual and am usually the first to sprout something motivational like 'come on now, stay strong and keep fighting' or 'you've now been given the opportunity and challenge to touch peoples lives, to make theirs a little more bearable by uniting a strong community' but even I am feeling anger.

I was sat on the floor earlier sorting through my high heels, I swapped my slippers for my favourite pair when I ended up in a puddle of tears as all I could think of was what a waste. All of my beloved possessions are sitting in draws, shoved in wardrobes and on shelves all gathering dust - including me. While I am pretty much house bound due to my Anxiety related to my Ulcerative Colitis life is going on without me.

Instead of being shlumped on the floor, balling my eyes out I should be helping to plan my friends wedding. I should be out dating, making a future for myself. I should be working hard to buy myself all of the things to make life comfortable. I should be dancing professionally, building the career I had always dreampt of as a young girl. Like I had already set out for myself and worked so hard for.

Life with a chronic illness not only chips away at your health but it chips away at your soul. The physical aspects of IBD are hard enough to bare let alone all of the emotional turmoil thrown in on top. Everyone will have their own stories to tell of loss, pain, suffering etc. and above is a snipit into my world. People who struggle with a life long illness draw a strength from somewhere which tells us to carry on, to fight, to become brave. For what other choice do we have?? It is not easy, life as a whole is not easy without the extra fluff on top. People are quick to judge but believe me when I say, those going through an illness have such vast and complex stories that we can't even begin to imagine.

I know some continue on with their lives and refuse to be beaten by their illness. There are those who have carved out a whole new path in life for themselves, illness and all. I am not yet at this stage. I am at the 'stuck in a rut, feeling angry, let down and totally fed up stage!

Why should we have to be forced to live this way, we did nothing to deserve this. More should be done to research and find the cure we all hope and pray for. It's unfair and heart breaking to see young children confined to constant checkups. My heart and well wishes go out to all of you shlumped on the sofa too exhausted to participate in life, to those of you confined to your hospital ward. It should not be like this, more should be done!! People should not have to struggle day in- day out. I feel your pain, I feel your hurt, I feel your anger. For I have been there!

So there's me; well and truly feeling the effects of 'anger'. Let me know in the comments box which stage you're at whether that be denial, despair, sadness, depression, anger or acceptance. Can we truly accept a chronic illness? I hope that in time I will but for now I've still a long way to go.

To those of you who battle on each and every single day you are an inspiration, you are brave, strong, incredible people and you all have my admiration!! X

4 March 2014

Would you like an apple my pretty?!

I would like to introduce you to a simple problem which people with Crohn's Disease or Ulcerative Colitis face on a daily basis. Here, I'll point out my latest conundrum for you:
Yes people, it is the humble apple.
What issue could I possibly have with an apple? Maybe it's a red one and I prefer green ones? Nope, keep guessing. Maybe I have false teeth so can't bite into the apple? Nope, wrong again. The more I look at the apple the more complexed I become about the humble apple.

Hopefully by now everyone has read my previous blog post 'We need to talk (click here)' which explains that both Crohn's Disease and Ulcerative Colitis are not CAUSED nor CURED by diet. Although diet does play a small role in how horrible we can feel. There is an everyday challenge going on behind closed doors to try and avoid 'trigger foods', these are foods that make our symptoms worse. Therefore we do our best to be on good behaviour and avoid those foods which we know will make us feel bleh in the long run. Even though temptation can be really hard.

So the other day I was pretty hungry so I picked up an apple. I was left in a right pickle as I was confused over whether or not apples are GOOD or BAD for the body. 
I have read that the apple peel is hard to digest so some people avoid eating apples. An apple is a source of fiber which I have previously read is something to avoid if you have IBD. Although from personal experience apples tend to help/stop a dodgy tummy. Then I read that apples are thought to keep IBD at bay. Aside from this the saying is 'an apple a day keeps the doctor away' but dentists say they are bad for the teeth. PUH who knows?!

In the end I stared at the blooming thing for a lengthy ten minutes! It was pretty stupid.
"Eat the apple / don't eat the apple."
"Eat it/ don't eat it - eat it/ don't eat it."

In the end I ate it because by this point I was so flooming hungry that I would have eaten just about anything. Well... maybe not anything! I ate the apple and hurrah for me I did not end up like Snow White slumped over and placed in a glass case.


That is just ONE example of the difficulties we face in trying to figure out what foods will be good and which will be not so good for our body. A handful of you have asked me about which foods to avoid if you have Crohn's Disease or Ulcerative Colitis and it is fair to say that EVERYONE is different. What works for one person may not have the same effects for the next. Please always contact your medial team or dietitian before making drastic changes to your diet.
For more information about IBD and diet see the information listed on the CCFA's website by CLICKING HERE

Apples <-- Do NOT ask for my opinion on apples as I still have no flooming clue!!