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!

Tuesday, 24 November 2015

Today, I felt some shit

I think I need a moment before bed to get my thoughts straight. Some days you just have to figure things out that have happened throughout the day, you know? For you fear they may stop you sleeping so soundly if you don't - replaying parts of it in your mind.
So I suppose for a mini history. Once upon a time I gave everything I had to another person. Hoping they'd accept me as I am, appreciate all that I'd given and do the same - but things don't always go as you'd hoped they would and I was eventually left broken and angry.
One person managed to cause me more heartbreak than I ever knew was possible. Made me doubt myself and what kind of person I am. Took me for granted, emotionally blackmailed me and made me feel worthless. I took it for too long and over the six year relationship I became bitter. No one has ever stirred up such huge emotion in me and while for a good 2 years I loved him more than anything, he is also the one person that has caused me stress and anger and sadness on such a remarkable level. I reached a point where escape seemed impossible and the only get out I could think of was to remove myself from the face of the planet, and that is when I knew it was now or never. I had to leave.
That was two and a half years ago and I wish that had been the end but it wasn't. I've a good heart (it's true, I really do have one) and I still tried to be civil, from a distance for a time, but it wasn't to be. I realised my life would never be settled and unstressful if he was in any part of it. Changing my number and blocking him on Facebook gave me a sense of freedom at last but still every now and then he would pop up, be it at my mams front door when he knew I was around or a pub he knew I'd be in and I'd feel the upset and anger build immediately. I feel so much resentment towards him that the person I am whenever he is near doesn't feel like the person I am today. I revert back to the sad and scared person I was when I was with him and there's a nasty part of me that lives in that hidden and usually forgotten part of me too.
I still have nightmares about him. I've had panic attacks when seeing him around. I've had panic attacks just because a thought has crossed my mind that I may bump in to him. It's not aided in any way by the fact that I'm always being fed little bits of info about his life. His struggle. When he's doing well and when he's not. That he is sick - when I say sick I mean actually sick but fixable if he changed his lifestyle, which he doesn't so in the back of my mind I'm just waiting to hear that his fight is over, that the alcohol won. And still... I am not heartless. It upsets me. For two years he was the centre of my universe and somewhere in the pile of misery he has become, there lives an old version of him that I hope one day manages to claw it's way back out.
So imagine my heart speed up and my mouth go dry when I turn to enter the doctors waiting room earlier today and come face to face with him, after only having a nightmare about him last week. So I end up sat a seat away from him. I nodded hello and I'm sat trying to hide the fact that I'm already shaking and concentrating on breathing. He asks what I'm here for and I consider not answering but I can smell the alcohol and don't want a scene and I reply that I'm here for a med review and flu jab and and what he's dying of this time (this is an inside joke as he couldn't have a headache without being sure he had a brain tumour or a sore throat without having throat cancer). He asks how the dogs are. He mentions he heard I moved. He asks how my health is. He asks if I'm ready for Christmas. And all the time I am replying and not looking at him and willing the doctor to call one of us in. When I take a glance I see cuts on his face and I feel sad. Drunken fall? Drunken fight? Drunken something I'm sure... He's called in *and breathe* and I realise I'm still shaking.

I leave the doctors office and leave through the waiting room where he's sat again. I nod and say "bye" and as I'm walking (quickly) out I can't help wondering why hes still there. Does he need to go back in? He looks like shit. And upset. I wonder what's happened.

But then he's behind me and it seems he was waiting for me. He asks how I am again. How the doctors went. Says he had rant because his CBT hasn't miraculously cured him in 11 sessions. I find myself straight back in 'lecture mode', telling him not to be ridiculous and all things take time and effort and not to give up and to stop paddying.
He says "I'm sorry, for everything" and his face crumples up and tears fill his eyes and I just tell him "I know, don't". I've seen and heard this a million times before but it has been a while and I'm not sure I know how to handle this situation anymore.
He says "I miss you, I AM sorry". Still, I know, but it won't rewind time and fix anything.
I give him a hug and tell him to look after himself and I truly hope he does and he kisses my head and I consider that hugely inappropriate and he smells like alcohol and every tiny shitty alcohol related memory is right there in my brain at that second. I pull away and I say goodbye and I walk away.

Now I feel good that I'm not in the middle of a panic attack.
I feel sad that he's still in such a bad place.
I feel lucky that I escaped.
I feel sick at the thought of ever falling in love again and having to feel as sad as he makes me.

I feel a lot. And feeling in itself is good because I had a period of time in which I felt nothing at all.

And I think...
I think, I might finally be ok.


Wednesday, 21 October 2015

I FED A BABY CAMEL!!!

It's no secret that I prefer animals to people...

I went to the Circus... but the Circus was poor...

But afterwards you could pay a few quid to go backstage and see the animals

And then..

I FED A BABY CAMEL




Monday, 28 September 2015

I met Ron FUCKING Weasley!!

Pride of Britain Awards, September 28th.

Celebs don't interest me and I was out of my comfort zone ALL night, but the one photo I had to get was...

Ruper Grint!

LOVE ME A BIT OF HARRY POTTER!


Saturday, 26 September 2015

I'm a closet romantic...sshhhh

When you buy a guy a rose 🌹


"Thanks - but girls aren't supposed to buy men flowers"

"Oh, I didn't realise we were playing by anybody else's rules"

- Ungrateful

Thursday, 17 September 2015

WINNER of the 'Young Person in Business Award'

July 31st

Just got home from pitching for the East Midlands Chamber award for 'young business person of the year'.
I swear I didn't look this tired and windswept at the time (I hope)
And now.... We wait!


Sept 17th
And then I WON!



Friday, 11 September 2015

WINNER of ITV's Pride of Britain 'Fundraiser Award' - East Midlands

I was nominated for the Pride of Britain fundraiser of the year (East Midlands) award in 2015, which in all honesty was a great cause of anxiety (this face and voice were not made for TV), and I thought I had absolutely no chance of winning!

Then, Matt from ITV Central surprised me at work on September 11th with the award, and the surprise was aired on ITV Central news, as was my initial nomination interview!

You can see the video here



I then attended the Pride of Britain Awards - another source of MASS anxiety. Celeb culture is really not my thing. They do a job, why do we worship them??

I say this, until I am in the same room as Gandalf and Ron Weasley and then my previous comment goes straight out of the window...


Saturday, 5 September 2015

When the walls close in

Explaining what you’re thinking and what you feel when you’re ‘down’ isn’t easy. How do you put emotions in to words?

I prefer try to explain emotions like they are something physical instead.

Just lately everything has got on top of me and I felt pretty overwhelmed by it all. It’s easy for people to say, “why let things build up?” or “Just think positive”.
But it’s not that simple is it…? Because if it was surely I wouldn’t be in this position?

DON’T YOU THINK I TRIED THAT ALREADY?!

So, picture this.

You’re plodding along, minding your own business, living your life, but something feels uneasy.
You feel like something is happening behind you.
You turn around and look and something seems different but you can’t quite figure out what so you carry on.
But it’s there again, and you turn and… is that wall coming closer?
Can’t be. Surely I’d know.
And again, but you look, and… nothing.

And it feels like you’re in a cartoon where every time you turn your back the wall sprouts little legs and starts scampering towards you but every time you take a look it’s still again, stifling a sneaky little giggle.

But then out of the corner of your eye… you’re DAMN SURE you saw that wall move. Then the other side…
And now you KNOW they’re closing in.


 But it’s too late to make an escape plan now because they’re all coming at once.
And you panic.
So you just stop.
And the walls are coming closer still.
And you’re just sat
In the middle
Waiting.
Waiting for them to reach you.
Waiting to suffocate.

It’s only before the point of complete suffocation that the fear really kicks in. It’s like being a cornered animal and the ONLY thing that matters now is escape. So you lash out at anything standing in the way – or at least perceived to be.


Tuesday, 14 July 2015

Stop the world, I want to get off!

I've decided! It's hard living this life, if I really take the time to stop and think about it, which is why I don't.

It IS unfair and it is NOT the life that anyone should be living.

I choose to plod on each day (and sometimes it really does feel like a plod) and get the things I need to do done and then I'd just like to be able to sleep.
But you can't always sleep can you... 
Whether it's the meds, or the pain or the anxiety or the depression, the 'healing power' of sleep is not always achievable.

I have learnt to adapt, I have learnt to be 'OK' when really, of course, things are not. 

I hate the feeling of weakness when I have to 'give in' and take pain meds. 
I hate the constant feeling of fatigue that makes me feel snappy and mardy which makes people tread on egg shells around me so as not to be in the 'line of fire'. 
I hate that my muscles and my joints ache when I've done nothing more than sit on my butt all day.
I hate that I can't control my own body, my pain, the need to run to the toilet and the anxiety that it causes. 
I hate that some days, no matter how hard I try not to get to that point, that I crumble, cry and can't help thinking... Stop the world, I want to get off.

But most of all, I hate the reaction of other people.

The look of pity in peoples eyes - I want to tell my story, I want people to understand the enormity of this disease but I cannot deal with being felt sorry for, that's not the purpose of sharing.

The stupid remarks from people that don't understand at all but feel the need to offer advice... Because I've lived with this for 8 years and clearly this novice is more equipped to deal with it than me.  

And the people's reactions that hurt the most are the ones that I care about and that care about me. I have reached the point where I am making people angry because I'm not telling them what's going on. I get fed up of saying the same thing because it feels like nothing changes and I've had many people before that have got fed up of hearing it. 
I feel like I have nothing new to say so what's the point in saying anything? And what's the point in boring people with it when it when in reality, complaining about it isn't going to make me better.

I feel an enormous amount of guilt for living this life and involving other people in it.
I can't deal with upsetting people. Life is enough to contend with at the best of times without people having to worry about me, which means that I can't let anyone close because those that already are live with this disease too.

And I suppose, after all of that, all of the thoughts and feelings of upset and anger, part of living this life means accepting it. 

It is what it is. 

And what it is... Is all I've got.

Friday, 3 July 2015

If you don't know what faith is, how do you know if you have it?

Pretty daring subject I suppose... Faith.
If I say to you
'have faith'
what do you think I mean?

Have faith in what?

God?

Karma?

Destiny?

Yourself?

Other people?


I don't think it really matters what you are aiming to have faith in. The thing about faith is that you have to choose to believe something with no concrete evidence.

You have to believe in something enough to not have that belief wavered by the thoughts and opinions of others.

Personally I think a lot of the time faith is something you have just because you need it. Because if everything doesn't happen for a reason then why are you struggling so much?

I had faith once. I kept it for a very long time and through many different rough patches.
I don't know whether I had REAL faith because I let it go. Which brings my theory that having faith in something means not having that belief wavered is already a moot point.
But I have it back. So maybe it was real? Maybe I just lost my way. Maybe it was still there all along and I just lost the will to search for it?

I don't know what happened.
I don't know what it was.
I don't know what it is.

I do know that right now, in this particular phase of my life, I believe that everything happens for a reason.

I hope to keep the faith, even when I have no idea what good could come from what is happening and that it IS for some greater good in the end. Even if it's not for me.

I will fight tooth and nail to keep it because it feels good and what makes you feel good is always worth a battle.

Monday, 18 May 2015

Has #GetYourBellyOut impacted on you personally? Blog series in celebration of World IBD Day - raising awareness of Inflammatory Bowel Disease

This week, to celebrate World IBD Day and in aid of raising awareness of IBD and how it affects sufferers not just physically but mentally too, I have released a series of blogs over 7 consecutive days, with contributions from #GetYourBellyOut supporters.

Blog 7

~*~*~* HAPPY WORLD IBD DAY *~*~*~


The #GetYourBellyOut campaign has been raising awareness of Crohn’s Disease and Ulcerative Colitis, more commonly known as Inflammatory Bowel Disease (IBD) for the last 14 months. Four women joined forces and poked and prodded at the IBD community until they got a reaction.


In the beginning the days were long and the nights were longer. We were constantly pushing our campaign message and willing the IBD community to find its voice. The four of us were united by one thing – a passion to break the stigma of IBD. To crush the misconception that IBD is just a tummy ache and the misunderstanding of the term which often leads people to confuse the disease with IBS!
The campaign became much more than just raising awareness.
In the past 14 months we have;

•             Raised over £30,000 for National Charity Crohn’s and Colitis UK
•             Launched the #GetYourBellyOut website
•             Launched branded, awareness raising merchandise
•             Had campaign and awareness posters distributed to hospital and GP waiting rooms nationally
•             Gained tons of media coverage
•             Supported Crohn’s and Colitis UK’s online campaigns highlighting issues such as #FatigueInIBD
•             Raised awareness with branded social media logo’s and headers
•             Created a Facebook group supporting over 3,000 members
•             Set up a Facebook page which now has over 12,000 supporters
•             Taken Twitter by storm on many occasions during the aptly named Twitter takeovers
•             Celebrated our Birthday with a big sparkly #GetYourBellyOut ball

#GetYourBellyOut began with one main aim - to raise awareness of IBD, but to its loyal supporters it has become much more than that. #GetYourBellyOut has created not just a community but a family that help each other through bad days and build confidence in one another to talk about their disease and feel better about their body image.


My response:
So who wants to know the bitter truth about how and why #GetYourBellyOut began? Of course the first belly was tweeted in a bid to raise awareness but the reason I was aiming to raise awareness?

I felt like I had been so ill for such a long time. Obviously in reality I have been ill since August 2007 but this was the longest and most draining flare yet.
The prednisone had stopped me sleeping, made me depressed and ugly. I couldn’t wean off them as the symptoms would return. The pain had stopped me eating and sleeping.  The pain meds have stopped me having the capacity to achieve anything remotely productive and I was at the end of my tether.
The night’s when I would lay awake, contemplating how unhappy I was, feeling like no one understood and asking myself the age old question ‘why me?’ were the only times that I would really open up about my disease, taking to Twitter to chat with other sufferers that I had accumulated by searching ‘Crohn’s’ and ‘Colitis’ and stalking those people who had mentioned them. It was a purely selfish act. I only took to Twitter when I needed help. I was in a bad place, a dark place and I couldn’t allow myself to sit there alone.

Talk about removing my Jpouch and returning to a permanent ostomy had me fearful but I knew we had pretty much exhausted all options. Maybe it was the Prednisone thinking, maybe I was tired of my life or maybe it was a combination of the two, but I had made the decision that when the time came to have the ostomy back, I was leaving this world behind. The thought didn’t scare me, it comforted me. I suppose that’s clinical depression for you.

The #NoMakeupSelfie was trending and whilst of course Cancer charities and fundraising for them is massively important, I resented the fact that the #NoMakeupSelfie claimed to be ‘raising awareness’ of Cancer. I also didn’t see the correlation between cancer and not wearing makeup.
I wanted to raise awareness about a disease that mattered to me, that did need awareness raising of it, so I designed my first ever awareness post with RELEVANT pictures. You can see that post here. Give it a share if you will!
A few days later the first belly picture made it onto Twitter and the rest, as they say, is history.
A previously written blog on how the #GetYourBellyOut campaign started is here.
#GetYourBellyOut saved my life. 
I wrote 'What #GetYourBellyOut has done for me' not even a month after the campaign began. The supporters inspired me with their strength and courage and made me believe in myself and my ability to deal with anything that life chose to throw at me. My ostomy surgery last year was nothing like the first time. I didn’t hate it or me, I felt free and well and never once felt bitter about it.
#GetYourBellyOut evokes emotion in me that I thought didn’t exist. The person that would once freak out at any personal contact can now embrace people. I have actual love and massive respect for some of the bellies, especially the admin of the group who give their all to the campaign and its purpose.
I feel I need to thank every single person that has turned #GetYourBellyOut into a campaign rather than just an idea. You can’t build a campaign without supporters and support us you have!

The #GetYourBellyOut that you see before you is a beautiful and incredible creation - a creation born out of frustration, sadness and anger.

Your responses:
Yes it has had a huge impact on me. To know others go through the same thing. To have the support of others if you need help. To know I am never alone. Without #GetYourBellyOut it would be a lot harder to deal with 
-              Lorna Beeke
****

Wow, gybo has allowed me to meet people from the group who, without fail, have been fabulous. But generally, the group and the community have been fantastic for me. I will now talk about my UC, not just online, but to anyone who wants to know. Everyone is available to talk, at any time, and the support given by individuals to each other is fabulous. I have met people I now count as friends, even though I am very nervous meeting new people. I also talk to a few bellies quite regularly, who I would love to meet, even though they are spread far and wide. Now, I don’t know what I would do without the group, which to me demonstrates how good it is.
-              Ian O’Donnell
****

#getyourbellyout has had a huge impact on me as prior to joining I didn't really know anybody who had Crohn’s. I basically just ignored the fact I had a chronic illness and nobody but my family knew about it. I never felt comfortable discussing elements of the illness with anybody and was also very ashamed of the scars on my tummy as to me they looked hideous. To be able to exchange stories with others who knew exactly what I was going through made it all that much easier to bear.
-              Laura Pengally
****

This group has helped me in so many ways, and I'm grateful to the admin's that founded this group.
-              Jennie Maccoll
****

I really enjoy that there are other people in the same situation as me, people that understand when you are having a crap day due to fatigue or tummy pain. I’m really lucky that my family are pretty understanding, but it's not the same. It's really good to see people who have been really poorly, recovering and doing well, it gives me a bit of confidence that I can do the same. It gives me strength to carry on, and makes me realise that I'm really lucky sometimes. It's such a great support network, and it's lovely to see how everyone clubs together to support people. I really enjoy being part of the group, and I'm really glad I found it!
-              Claire Farrow
****

Most definitely! GYBO has given me the opportunity to learn so much more about the disease that controls my life! I've made some lifelong friends and learnt so much information that is helping build and structure my life to make it my life again!
-              Joey Pullen


My goal is to raise awareness for IBD and I like the huge support and the fact the main aim of #Getyourbellyout is raising awareness, so you drive me even more to do that. Plus obviously meeting soo many amazing people and now getting to meet them in person.
-              Danielle Emma Gooch
****

I've been in GYBO for about 6 months. I've been diagnosed with Crohn’s Disease for almost 20 years and I'm 37. GYBO is by far the most positive, fun loving and helpful IBD group out there. I've made numerous friends which I've talked with and helped and they have helped me. And even though we are half a world away (the group being in England and I am in Chicago) the connection is clear and true, IBD effects us and we are one. I love talking with the group and even plan on traveling to go to the next ball. I would love to meet all of the group and get to know them better.
-              Brian Jones
****

The #GetYourBellyOut campaign has changed my life in so many ways. Before I stumbled across it on Twitter, I was very much lost and convinced I was going to spend my life alone with this disease. I didn't know much about IBD, I'd never heard of it until I was diagnosed. But this amazing group appeared, and it was like the light at the end of this never ending tunnel. Thanks to the founders, the admin, and every member, I have become stronger. I am more confident. I am beating this disease. And most of all, I'm happy. I've not just gained knowledge, or strength, but I've gained friends for life. And the best part? I've gained a family that will love you and be there until the very end. Thank you so much.
-              Shayne Grant
****

Gybo has affected me and impacted me loads as it has given me loads of support as I don't know anyone with the same illness as me in Northern Ireland...
-              Charlotte Lewsley
****

The #getyourbellyout group had been a fantastic support group in which I feel safe enough to post comments and know I will not be judged. Although I haven't formed any friendships from the group which is a shame I do know that any post will be answered in a supportive manner and all members promote great understanding towards others.
-              Hannah Tingley
****

Oh man, before #GYBO, I was so different! I was much more timid and ashamed of my illness. Finishing college and starting a career, one doesn't want to seem different from their peers, or have their boss think any less of their capabilities, so I did far too much hiding. When I was too sick for social gatherings, I felt ashamed. The head games drove me wild. Am I really this sick? Am I being lazy? Am I just a huge baby that needs to get over it? Never mind I had already undergone 3 surgeries, nearly died from a bowel leak, had a temporary ostomy and multiple complications. All of these extreme health issues occurring between 18 and 25 made me feel stranded on an island, and I had no idea how to get off. Then last year, I discovered #GYBO. I've failed to click with other groups in the past, and even though I'm an American southern gal, I felt I could ask ANYTHING on the site and get help STAT. Random new symptoms? Ask away. Need to vent or spread some cheer by dancing like a moron? Go for it! Through the group I made some close friends that I can't wait to meet, and now I don't even feel the need to post every little mind game Crohn's throws my way as I can just ask them privately. This doesn't take me away from the group (because trust me the group doesn't want to hear every. little. thing!), but rather I have a tight-knit support network that I wouldn't have found without this group, plus this group to go to, laugh with, and share funny toilet selfies. Now I'm much more open about my illness, more confident, and I don't care what my boss thinks. Turns out they are quite supportive at work, too. You'd be surprised what can happen if you open up!
-              Kathrine Zahm
****

#GYBO has positively impacted on my life, not just mine but my family's too.. I've became more open chatting and supporting other sore/broken bellies. People who are or who have been through the same suffering as I have makes me feel not as isolated and alone with this disease and all the lovely symptoms along the way.
I'm still always learning too, even after 24 years of Crohns! I love reading others achievements and celebrations because this shows us that life does go on. We offer support with others fears and operations and watch them as they come through the other side, if they struggle we're here too..
We stick together through thick and thin through good times and bad.
I can't put half the stuff I talk openly about on my normal FB page. I feel safe to do it in #GYBO though Sahara Thankyou xxxxxxxxxx
-              Dimple Smiler


Up until this time last year, only a select few friends and obviously family members knew that I suffered with Crohn’s disease and all its associated ‘fun’, even though I was diagnosed at 16 (I’m now 28), and I only knew of 2 other people with Crohn’s. The campaign has not only made me more comfortable in telling more people about my condition, but it’s proved an invaluable lifeline to me in that I’m able to ask questions of people with the same/similar experiences and not feel ashamed about my condition. The network of friends that I’ve gained from the group will stay with me, and I’m so grateful to Gem, Sahara, Victoria and Lorna for creating such an amazing support network that I cherish so much! Not a day goes by when I’m not on the Facebook group!
I’ve taken to Twitter and Facebook and posted as much about IBD as possible to help raise awareness, and in doing so it’s made people actually stop and think, especially if I have to cancel plans last minute or am just feeling generally under the weather. I’ve definitely opened up to people about IBD thanks to #GetYourBellyOut, and they come to me with questions, which just goes to show that the campaign is succeeding in its main aim – raising awareness!
-              Cat Lodge
****

#Getyourbellyout has made a real impact on me, by being able to chat to people on what's worrying me as I don’t know anyone with IBD, its really helpful! And supportive, I'm so glad to be a part of it, gives me the feeling that I'm not actually alone after all:) its amazing.
-              Jaz Bingham
****

GYBO has been amazing to be part of, I've met and connected with people going through exactly what I am who have given me tips to battle the fatigue and pain. The group is full of inspiring and brave people who help me push myself day to day and pick me up when I'm at my lowest. The amazing fundraising and awareness you guys do I'm sure will help us be that but closer to a cure.
-              Kate Keen
****

When I was diagnosed, I had no information but a website address (CCUK). Of course there was a plethora of information on there about IBD but I also wanted to speak with others and listen to experiences and stories from those living it now. I was scared when I read it was lifelong with no cure but once I got more involved in the group it helped me to understand that although I would have to learn many things, I knew I wasn't alone doing it. I had people who could empathise, sympathise, offer help and hugs and also a kick up the ass wen needed! Who knows how I would have coped with it all had the Ladies not set the group up. For that, I'm eternally appreciative.
-              Nicola Bullock
****

Yes it sure has! It has made me feel that I am not alone and I have met some incredible people through it. I genuinely do not think the founders (Sahara, Lorna, Gem and Victoria) realise the impact of what they have done so thank you all!
-              AJ Mooney
****

I’m unsure if I am going to make it through this question without welling up or crying, because it is so hard to put in to words how much #GetYourBellyOut has impacted me personally and how amazing it has been for me. When I first got diagnosed, I didn’t know anybody with IBD and I felt so scared and alone. I had supportive people around me, but they couldn’t truly understand. I was terrified of the thought of needing a Stoma at some point in my life, and even said I would rather die than have one. I had nobody to turn to for support and advice about whether my symptoms were normal and what I should be expecting, and it was terrifying. When I stumbled across the #GetYourBellyOut campaign, I was absolutely amazed by how incredible it seemed and the fact that people were proud of their bellies, scars, stomas, everything and wanted to shout and tell the world that they were still beautiful regardless! Looking through the posts of the gorgeous tummies and reading the experiences of other people gave me so much hope and made me feel like IBD didn’t have to be totally negative. As I saw more and more people join and upload pictures of their bellies, I saw more and more bags being shown and people talking about them, and all I could feel was inspiration. It made me realise that having a bag is much more preferable to dying, and if I ever need one I will be SO proud of it, and I will show it to whoever lets me! These people still looked absolutely beautiful and handsome, and their bags had given them their life back. I finally didn’t feel like I would rather die than have a bag, I felt honoured to be a part of such an incredible movement. Not only that, but I have made some friends for life. I have met so many people from the group now thanks to meets and the incredible #GetYourBellyOut 1st Birthday Ball, and I love them like they are my own family. Even those I haven’t met yet but communicate with everyday, they feel like people I have known all my life. I know that there is ALWAYS going to be someone there for me if I need them, people are only a message away, and I hope I do the same for them. The kindness and generosity of the group astounds me, it really is like one big family and I really cannot put it into words how much it means to me.
#GetYourBellyOut has shown me that IBD can have positives (new friends and amazing times) and that we should be proud of what we look like and who we are. I could never thank the four founders enough, Sahara, Lorna, Gem and Victoria I owe you all so much for what you’ve done for me. The campaign has made me stronger and less scared of what may happen in the future with my IBD, as I know that whatever happens I will have 2000+ people behind me supporting me the whole way.
-              Abby Mae Matthews
****

This is an easy one. Yes most definitely! Without certain people I would have been left wondering in a wilderness of darkness. Also as I'm currently fighting to get some mental health care being able to talk to people that know what I'm going through helps immensely.
-              Dave Carden


#GetYourBellyOut has helped me massively since I found it 2 months ago. It is very reassuring that I’m not the only one that feels the way I do & that there is other people out there who know & understand how I feel. It is amazing because if I ever have any questions about my disease or any unusual symptoms, I can just post the question in #GetYourBellyOut & there is over 3,000 people who can offer advice or support. Everyone in the group is amazing & very supportive despite having their own problems. There is always someone who can help in the group. Even though everyone is a different age, at a different point in their lives & at a different stage of their disease, the support and understanding is better than any I’ve ever experienced before. Family & friends will support you but bellies will inspire you & walk every step with you, no matter how difficult the journey. One of my favourite things about the group is that age doesn’t matter. No one is too young or old to help or support. I can’t thank the founders enough for creating such a wonderful family!
-              Becka McKenna
****

I've made so many friends, I don't feel alone, any questions or when I'm feeling down the bellies are all there helping me/us on our journey. I've gained a family from #GYBO but most of all I've gained a sister in Sahara the one person I only truly open up to
- Gemma Willingham
****

YES!! This group has been a massive lifeline for me, and I don't know where I'd be without it... well, I guess I'd still be here, but I'd probably feel like I was alone suffering, like I used to. It's opened my eyes to a whole new world of people that suffer with IBD, Young, Old, Married, Working, and those, like me, who have never had a "proper job" thanks to my crohn's. I was diagnosed at 19, and aside from the support of my Mum, I have largely dealt with this disease on my own. It's such an isolating disease, as, let's be honest, who wants to talk about poop?!
#GYBO has enabled me to talk about my crohn's freely, and not be ashamed that I feel like I spend half my life on the toilet... in fact #GYBO encourages Toilet Selfies!! I absolutely have to mention the Ball too, I met so many new faces, and made friends that I'm sure I will keep for a lifetime I personally cannot wait for #GYBO's second birthday.
This group has increased my confidence immeasurably, I would NEVER have got my belly out so publicly before, and right now it's displayed proudly as my Profile Picture on FB... I also managed to pluck up the courage to enter the Calendar comp, and scored a place as Miss June! I could have burst with pride! I had so many messages from friends, and friends of friends congratulating me for being so brave... it was pretty overwhelming...
Most of all, this group has taught me to be proud of my scars and battered belly, They're the very reason I'm still breathing! Far better to be like this than leave a pretty corpse!
-              Lowri Sian
****

OMG yes! I have never spoken out about my Crohns and would never have talked about my stoma...GYBO have given me the confidence to love myself and respect my body for fighting to survive. I have made friends for life who just 'get it'. The campaign has helped me restore my faith in the world
-              Cassie Kingswell
****

Simply enough GYBO has had a huge impact on me. It’s given me a place I can rant about anything in my life, not exclusively IBD support though thats what I use it for mostly. It’s given me hope that people who have come through much harder circumstances than me shows that I can do this too. I’ve met lifelong friends on there and people I will always care about. In short I love GYBO and am so thankful for the founders in creating it, I honestly think it was the group that saved my life last summer. It gave me hope.
-              Finlay Hards
****

Yeah the group has definitely changed my personality. Before the group I was a bit quite embarrassed by my illness and didn't want people to know. Now the group has gave me the confidence to share my experience and help inform others.
-              Lorraine Hepburn
****

Basically it has because I was scared to talk about my bag and didn't know anyone else with ibd that I could chat to about it and Ibd on a daily basis with, like I have here, it's made me far more open to talking about having Ibd and now I'm dedicated to raising awareness about it.
-              Jennifer Connel Mcgregor
****

The whole campaign has made me more confident in myself. I have embraced what it stands for. I have never been afraid to talk about IBD if I was asked but now l want to help promote awareness. I want people who are less fortunate than myself to have the care and support they deserve. I want to hug every belly and tell them how beautiful they are. A year ago, I didn't do hugs, can't get enough of them now
-              Stephen Gomm
****

I suffer with Ulcerative Colitis 11 years now, I was diagnosed at just 18. I hadn't heard about this illness ever and I was afraid, even though I had my parents by my side every step of the way. There was nothing much around to help me understand what was going on in my body and I didn't really speak about it. I lost all my confidence. I was 6stone at the start of my illness. My weight was always up and down. I didn't feel comfortable in my own skin.
Before the group came along I was so shy and never spoke about my illness to anyone, I'd hide away.
But since the group I tell everyone about it now and I got my belly out for the first time last year and it was hard at first, but now ive slowly got my confidence back and it's all thanks to the group.
-              Lisa Cummins


To say I am in a bit of pickle after reading these would be an understatement. So much love and so much emotion! I can’t even begin to explain how much the campaign means to me and just helping one person is an achievement in my eyes so to have helped so many is completely overwhelming.
The ball really got me. All of those people in one room because of something I did. Standing on the stage in front of over 200 people and the tears came. That’s not something that ever happens to me. I don’t cry in front of people… EVER and the tears came all night. It felt like family and it felt like home. All of those people laughing and dancing and enjoying each other’s company, you would never have known that this was a party for the ‘incurably sick’ if you were just a passer-by.
I have been suffering massive belly blues ever since.

So I guess I’ll be leaving you now.

Have a fabulous World IBD Day and remember… you are NEVER fighting this battle alone.


~*~* United We Stand *~*~



Go back to blog 6, discussing how IBD affects eating habits.

Has having IBD changed your eating habits? Blog series in celebration of World IBD Day

This week, to celebrate World IBD Day on May 19th and in aid of raising awareness of IBD and how it affects sufferers not just physically but mentally too, I will be releasing a series of blogs over 7 consecutive days, with contributions from the IBD community.

Blog 6
~*~*~*~*~

It’s a strange one, eating habits. What really irritates one person can be completely fine for another so I’m interested in seeing the responses for this one. People that don't suffer with IBD often think that they can tell us something which we haven't already thought of... Because of course we just sit on our backside complaining but not making any attempt to fix ourselves, right?

Eat more fruit and vegetables. Drink more water. Detox. 

Fuck you.


My response:
In all fairness there isn’t anything that I can’t eat in the respect that it will bring on a flare, but I pretty much live in a flare anyway. The only thing that I am aware of that brings on flares for me is alcohol so I tend not to drink very often and if I eat too much fibre then I have to remember to take extra loperamide so I don’t crap myself in my sleep. 
If my Pouchitis is active,which is more often than not, fizzy drinks tend to make the gas build it which does hurt but not enough to warrant taking painkillers for.
I dehydrate quickly due to having no colon so if I eat things like bacon or gammon I have to remember I'll need rehydration solution.
I can’t eat a lot in one go so little and often tends to work for me. This also prevents gas building up between meals which ultimately gives me pain so I tend to graze all day long.
I don’t absorb nutrients very well so I tend to crave things my body needs a lot such as salty foods or iron rich ones. You’ll often find me munching on a steak with sweet potato chips. All for the good of my health of course! ;)
Because I don’t digest food fully I have to chew everything properly. I have had two blockages previously and it was enough to make me never want another! I used to hate going out to eat because I would always still be eating way after everyone else has finished but I have got used to it now and the people I eat with have got used to it too. I don’t eat things like stir fry’s anymore because everything needs chewing so well I end up with jaw ache by the end of it. I tend to balance meals by texture rather than nutrition content so if I am having something that takes a lot of chewing it will have to be next to something that doesn’t.
I struggled to eat anything at all as my strictures got progressively worse over a few year period and by the time they were discovered I was put through as an urgent case and was in theatre five days later. It wasn't the IBD itself that has caused the strictures, on the Barium X-Ray of course it wasn’t possible to tell and it was suspected that I had developed Crohn’s Disease since having Jpouch surgery but when they got in there they discovered that the long one was actually twisted intestine and the smaller one was an abscess. It isn't known what caused it but I assume it was scar tissue as the pain was under the old stoma site. The twist had become so narrowed that it was first discovered during endoscopy when the gastro couldn’t get the tiny camera into my small intestine at all and the pain it caused trying resulted in me twatting myself in the face with the gas and air whilst trying to wipe away my tears. It hurt constantly so it didn’t make a difference even going on a purely liquid diet, that had just resulted in me losing a lb a day! The food that caused the worst pain I found was nuts and oats.
Anyway, carry on.
****

My eating habits have changed totally. No longer can I eat reasonably well, everything, and I mean everything I eat is rubbish. I can’t seem to digest peas, they go all the way through me, without fail. And other green veggies make me need the loo within the hour. I used to eat weetabix regularly at breakfast, can’t eat them anymore either.
-              Ian O’Donnell
****

Massively, I was always a healthy eater as a kid and so I really miss being able to eat salad and things now! Last week I was really proud as I managed to eat popcorn for the first time in 9 years! I can’t drink beer, I can't eat fruit with a skin, or sweetcorn. And I miss vegetables so much! Meals are a lot more difficult to plan, as it's so variable day to day. I think my other half struggles sometimes as he will fancy pizza, and I can't eat it if I feel dodgy.
-              Claire Farrow
****

It's changed every eating habit I have, I don't take any food from anyone, if it's not made in front of my I won't have it, because of how severe my Crohn's disease is I can no longer tolerate any form of spices or herbs, so everything I consume is very low flavor but high calorie! I consume about 4000 calories a day to just to stay above 10 stone.
-              Joey Pullen
****

It's changed them a lot. I can't just grab whatever I want from the cupboard and eat it, I can't just go out for a meal and think "hey that looks good, I'll have that". I have to study what is in everything I buy. I can't go to many restaurants as I can't eat most of what's on the menu, and even when I can, I would have to ask them to leave half of it out which can get embarrassing. I used to love food, I used to love to cook. Now I dread meal times as I don't know how my gut is going to react to it. I could have eaten it 100 times over, but this one time could send me into spiraling agony and leave me in bed for days, maybe weeks. Sometimes it doesn't even feel worth eating at all.
-              Shayne Grant
****

IBD has severely altered my eating habits. So much so there is not a lot I can eat now , even after my Ileostomy. If its fruit or veg forget it and wheat based products are a big no no. No red meat, just chicken and fish and even then chicken sometimes doesn’t digest. I have a lot of smoothies to try and get the goodness I used to get from food. Before IBD I used to cook from fresh each day, always meat veg and potatoes or anything healthy.  Now it seems if it’s healthy it doesn’t digest.
-              Jane Killin 
****

It's tragically ironic. During B.C., or Before Crohn's, I loved eating healthy. Cooking is one of my hobbies, and I love all the flavors one can pull from vegetables, fruits, and herbs. Then comes Crohn's, strictures, and a G.I. pointing out that a low-residue diet until I'm under control would suit me better, as fiber bulks the stool making it more difficult to pass. I'm not under control, and scar tissue from previous surgeries create more strictures (narrowing of the intestinal lining), thus putting me in a vicious cycle. I still cook with these ingredients for my family, but I still have to stick to the bland foods on my own plate. People think that IBD means you "watch what you eat" and make sure you "eat healthy" when in fact, it's usually the opposite, depending on the severity of the illness in the patient, as well as where it affects the patient in the digestive tract.                                    
-              Kathrine Zahm
****

I can only eat sum days due to surgical complications.
-              Diane Nugent
****

The only way that IBD has changed my eating habits is by making me more cautious about what I eat and more aware of what's in my food. I am now more aware of what is a total No Go for me but I will also weigh up a situation before I eat something. This disease is depressing enough without is making things worse by us having to be denied foods we crave. Obviously I would avoid a food that would cause a severe complication or reaction but if I wanted something and knew it would give me some discomfort for a short while then yes if I really had to have I would eat it.
-              Nicola Bullock
****

IBD has changed my eating habits MASSIVELY. I used to eat whatever I wanted whenever I wanted, mainly junk food because I have a massive sweet tooth. I never had to think twice about what I ate and whether I would need to be near a bathroom straight away, or how it would affect me after eating. I’ve always been a food lover, and there aren’t many foods that I don’t like so I took much pleasure from eating whatever I wanted whenever! Now I have to be so careful. As much as I don’t believe IBD can be treated and controlled purely by diet, I do think diet has a large part to play in my disease. However, it can be so temperamental. One day I can eat something and be fine, the next day I can eat the exact same thing and it HURTS! How is that possible? So I just have to be careful and assess how I am feeling at the time and what food I am eating. I am lucky in the sense that things such as fruit and vegetables don’t really have a massive impact on my IBD, I know a lot of people with this disease cannot tolerate “healthy” food yet get lectured about it which is unfair. Most things I am fairly okay with (touch wood). I was advised by my consultant last year to try the FODMAP diet to try and reduce the pain and bloating I was experiencing associated with my IBD as well as IBS which I suffer too. This scared me as it meant eliminating a lot of food from my diet, and I felt that I wouldn’t enjoy food or be able to eat anything, it made me so depressed. But when I looked at what I could eat, I found there was still quite a lot that I could enjoy, and most supermarkets now have excellent “Free From” sections with lots of yummy food. I did the FODMAP diet for a good few weeks but it isn’t advised long term, and to be fair it did help my symptoms a fair bit. I gradually began reintroducing food into my diet to see what my “triggers” were, and as suspected it was mainly things like spicy food, garlic type things and onions, so I try and avoid them as much as I can (which is hard as I love them! I still treat myself now and again). It depends on my condition too, when I first started Immunosuppressants it put me into “remission” and for the most part I was ok, apart from pain, and could eat and drink what I wanted. The last 5 months however I have been flaring so have been really careful with what I eat. Nausea has been a massive thing for me recently, and anything I eat has been going straight through me so I went onto Complan shakes for a period of time to try and give my bowels a rest. Now my flare is being treated, I am gradually trying to re-introduce solids but still being careful and having food I consider easier to digest. It still hurts and there are still toilet trips but it’s all about trial and error. What works for one person doesn’t work for another, and as said before, one day a food can be fine and the next not! I try not to worry about my diet TOO much, as there’s little enjoyment left in life when you have IBD so food is important for me, and I try not to restrict myself too much. If I’m invited out for a meal, I would make sure I had no plans for the following days so that I could enjoy my meal and not worry about being bedridden or on the toilet for days afterwards. Luckily, my IBD seems to like chocolate and tolerate it which is great for my taste buds but not for losing weight!! As my condition has been “okay” to an extent apart from the last few months, I have managed to absorb nutrients and keep weight on and actually put on weight which is REALLY hard for us with IBD, so I actually have weight to lose but I know a lot of people need to be able to put on weight. They can have some of mine! 
-              Abby Mae Matthews
****

I am meant to have a low fibre diet but I find it hard to stick to it i still eat things I shouldn't and I suffer.
-              Vicki Khan
****

Hell this is a biggy. B4 colostomy bag this yr, I was lactose intolerant, coeliac, got anaphalaxia with certain fish and was diabetic controlled by diet. I had been on the exclusion diet via dietician at hospital & new what I could/n't eat. I had been diagnosed with sever IBS since aged 15, had 2 major tummy ops, scars breast bone to bikin line and open Nissan fundoplication for reflux disease. this meant not being able to be sick or burp, everything had to go south. Troubles started after this with hernia after incisional hernia repair and bleeding from strictures in the throat. after so many invasive tests - no results - having tried far too many drugs I paid privately. after 6 months of more (some of the same tests) I had high cholesterol and bile acid malabsorbtion and high blood pressure all adding to further stress on my body & health. I finally got a private consultant who mapped everything and I had skipped the net, was a so called medical challenge on every level. I had the colostomy surgery late Feb this yr. I expected to be back at work sooner, but hey ho as the consultant said 3rd time lucky surgery takes 3 x as long to recoup. since my colostomy I find that certain foods pass through me ok, others disrupt my health and I feel ill, others cause blockages - a big fear with the thought of cameras, surgery on yr stoma when it's on yr stomach & not the usual rectum site. I tend to eat smaller meals, & still toilet map as my output is even more fluid that b4. I don't really like to eat out much for fear of accidents, and some times starve myself for events such as meetings or presentations so that I don't use the bathroom quickly. This has a knock on effect of embarassing wind noises to which I hate & often fear being judged, & when it's bad can't leave the house. I get dehydrated often, and have to constantly remind myself to keep rehydrated with isotonic drinks. water is just like - drink a pint, wee a pint. sugars fool the tummy so it stays in longer. Dehydration is a frustration. I find a regular eating time works well. I can't eat after 6.30 pm really or all hell breas loose at different hrs of the night. Functioning as a zombie is tuff on no sleep with explosions, cleaning up, washing etc.
-              Sara Williamson
****

My eating habits are up/down, Fortisips, savoury soups, to normal meals to no meals to a feeding tube.
-              Gemma Willingham


It’s a such a hard balance, you’re not well so need all of the nutrition you can get yet the only things that seemed to be able to be processed without discomfort are foods with rubbish vitamin content. At least when you’re eating chicken its high protein which is good for healing but you can’t even make it exciting with herbs or spices which gets boring pretty fast.
Foods which are fibrous or have seeds and skin are often a problem if someone has strictures as well as flaring, it feels like a never ending battle to try and find a balance that works.

I tried a detox once (desperate times call for desperate measures) my theory being that if I could flush all the bad toxins out whilst replacing all the good gut bacteria with the prescribed VSL#3 it might calm my flare. It was a massive fail and I ended up with a lot more pain than I started with! We live and learn!

It’s been an interesting read. Thank you to all contributors! Sorry I clearly feel the need to keep rabbiting on!

Go back to blog 5 which asks if peoples outlook on life changed after being diagnosed with IBD.