Wonder Woman Wednesday

Each week I celebrate wonderful women that have rocked my week.  I’m going for groups and collaborations this week as I really think that together, women make an unstoppable force!

This week is all about these bad ass ladies…

 

Girl Gang Sheffield


Girl Gang is a Sheffield based, female centric events company run by Vanessa and Ellie, two amazing women who are spreading a bit of naughty fun through the city!

From film nights to music events the brain children of Girl Gang are kicking ass. By day they are the owners at Creepstore and Handmade Cinema and I for one want to be in their gang!

 

Seven Hills Women’s Institute

 

Seven Hills WI is Sheffield’s largest WI and has hosted both myself and my husband as guest speakers over the last couple of years.

As they say themselves, they are more belly dancing and bellinis that Jam and Jerusalem!  Interested in joining? They are full this year, though you can go along as a guest, but you can put your name down for next year here.

 

Get Your Belly Out

 

Get Your Belly Out is a campaign aiming to raise awareness of Inflammatory Bowel Disease, more commonly known as IBD.  Founded by 4 campaigners, they have raised awareness and a shed load of a cash for Crohns and Colitis UK! 

They also just got a Pride of Britain award!!! Ladies, I salute you!

 

Everyday Sexism

 

The Everyday Sexism Project exists to catalogue instances of sexism experienced by women on a day to day basis.  These guys are making a huge difference and getting the world to speak out about the unacceptable, yet often overlooked sexism that women face every day.

 

Go take a look at some of these wonderful women and celebrate the women in your life who bring you joy and to quote Girl Gang “Do rad stuff and change the world!”

 

Sam x

The best films I have never seen

I’m not feeling very well this week, I’m on day two of sofa dwelling with a hot water bottle and painkillers. I’m waiting to see what the hospital think but I’m dropping weight quite quickly without trying, I have stomach pains and feeling exhausted and sorry for myself. 

ANYWAY, I have very little headspace and I’m watching a lot of Netflix and it got me thinking about all the ‘classic’ films I have have never seen. You know the ones, those that when mentioned in the pub, everyone goes ‘Ohhhhhhhhhh that’s a CLASSIC mate!’

So here’s my list. Let me know if I really should watch them or if they are over-rated cack!

1. Rocky. Any of the Rockys…

“Aaaaaadddrrrrriiiaaaaaannnnnn!”, the steps, Sly Stalone… I am aware of all this yet have never seen any of them.    

2. The Princess Bride

Literally no idea what this is even about but people talk about it alllll the time. 

  

3. Labrynth 

A friend recently told me he was abandoning our friendship because I haven’t seen this movie!  I am tempted, I do love Bowie but now it’s almost fun to see the shocked faces of people when I tell them I haven’t seen this weird 80’s classic.

  

4. To Kill a Mockingbird

I’ve read the book and I have tried to watch the film several times and just can’t get past the first half am hour of dullness.  Sorry (not sorry!)

  

5. The Matrix

Started it probably 10 times. Fall asleep as he chooses which pill every time. Every time. 

Turns out I don’t care whether he takes the red or blue pill. 

  

6. Casablanca 

Here’s looking at you kid… Nope. Never. 

  

7. Gone With The Wind

I’ve seen Wind in the Willows, does that count?

  

8. Dirty Harry

Is it a bit shooty? I don’t know. To be honest, I don’t think I’ve seen any Clint Eastwood films. 

  
9. Planet of the Apes

Not the old ones, not the new ones. 

Not Dawn of the Rise of the Fall of the Zoo of the Forest of the Planet of the Apes. 

  
10. Blade Runner

Is it about roller blading? See that sounds fun, but I don’t think it is, is it?

  
11. Breakfast at Tiffany’s

This is such a classic that I feel that I have seen it but I just haven’t. Though I do like breakfast and the name Tiffany so maybe I should try.

  
12. Die Hard

I love Bruce Willis so I’m not entirely sure how I have missed this series of films, it almost feels too late now to get into them. 

Yippy ki yay motherfuckers…

  
13. Citizen Kane

Nope. No idea. 

  
14. Alien. Or Aliens

I do have actual regret at not seeing these films. I will put them on my to do list. 

  
15. It’s a Wonderful Life

Is it? Is it??!! I don’t know. This film is on every Christmas but I’m too busy watching Elf on repeat. 

  
So there’s my list of the best movies I’ve never seen. What’s yours? 
Sam x

What is a Jpouch?

Though I have talked a lot about my different surgeries, I know it can be a bit confusing and difficult to understand and so I thought I would dedicate this post to explaining exactly what a jpouch is.

A  j-pouch has a few different names which can cause a little confusion, it is also referred to as an ileal pouch-anal anastomosis (IPAA), an ileo-anal pouch, restorative proctocolectomy, s-pouch, w-pouch or an internal pouch and it is a bag formed from the small intestine that is attached to the anus.  It was was pioneered by Sir Alan Parks at St. Mark’s Hospital in London in the early 1980s.

“It is a surgically constructed internal reservoir; usually situated near where the rectum would normally be. It is formed by folding loops of small intestine (the ileum) back on themselves and stitching or stapling them together. The internal walls are then removed thus forming a reservoir. The reservoir is then stitched or stapled into the perineum where the rectum was. The procedure retains or restores functionality of the anus with stools passed under voluntary control of the patient.” (via Wikipedia)

In simple terms, when the large intestine (colon) has been surgically removed, doctors create a pouch out of the small intestine that is attached back onto the anus.  This pouch acts as a store for waste matter so that patients regain the ability to ‘hold it’ when they need to poo and therefore improves life quality.

what is a jpouch

 

Ileo-anal pouches are constructed for people who have had their large intestine surgically removed due to disease or injury, this could be from;

  • Ulcerative colitis
  • Crohn’s disease
  • Familial adenomatous polyposis
  • Colon cancer
  • Toxic megacolon

It is entirely internal and not the same as an ostomy in any way.  From the outside you can not see anything and people with a jpouch go to the toilet and poo in the same way as anyone else.

 

Immediately after surgery, the patient tends to pass liquid stool with frequent urgency, up to 20 bowel movements per day, but this eventually decreases with time. Because the  jpouch is a considerably smaller space than the colon, patients tend to have more frequent bowel motions; typically 6-8 times a day.

Also because the small intestine does not absorb as much water as the colon, poo is much more fluid than usual and some patients need to take daily medication to slow the process and thicken the stool.  Because of the loose stools, more water is lost and patients can get dehydrated easily and can also suffer salt deficiency. For this reason, some are encouraged to add extra salt to meals or electrolyte mix drinks.

Because the ileum does not absorb as much of the gastric acid produced by the stomach as the colon did, poo also tends to burn the anal region slightly meaning many patients need to use wipes and barrier creams.

One complication of a jpouch is Pouchitis which is an inflammation of the ileo-anal pouch. The symptoms are normally somewhat similar but less acute than those of colitis, and include (sometimes bloody) diarrhea, urgency or difficulty in passing stools, and, in few cases, pain. The standard treatment for pouchitis is a course of antibiotics.  Other complications that can occur are pouch fistula, and pouch stricture.  Early complications can be leaks and the pouch coming apart which will require more surgery.

I can’t find any official success stats but I can say that my surgeon told me this.

40% will be perfect/excellent

40% will be acceptable with some issues

10% will be poor but the patient will put up with the problems as they are stoma averse

10% will need to be defunctioned

So you can see that even though this surgery is called a ‘reversal’ (meaning it is reversing the surgery of having a stoma/ostomy), it is not that simple and people with a jpouch have their lives changed forever.  You read an awful lot of negative stories about jpouches, but I always think that it is because all the people who are having a good experience aren’t on the internet telling you about it, they are off living their lives!

For me it has been 18 months since my surgery and in the early days, I did struggle and wonder if I had done the right thing.  As time goes on, life is getting a lot better.  I go to the toilet around 8 times a day but usually without urgency or pain.  My jpouch is working well and I am happy with it.

It hasn’t rid me of all the extra intestinal manifestations of having IBD, I still struggle with fatigue, bad joints and sore eyes.  I still take medication every single day and I have had to accept that i have a chronic illness that will never go away, an auto immune disease that affects my whole body.

I hope this post has answered some of your questions, the more we all speak out, the better it is for everyone.  I aim to educate, raise awareness and as always to #StopPooBeingTaboo

 

Love Sam xx

Not thin enough for mainstream, too thin for plus size? 

I am a size 16, despite years of dieting and exercise, I always end up at a 16. For 15 years I have been somewhere between a 14 and an 18. I am open about this and often tell people my size, you kind of feel the need to when you are shaking your ta-ta’s in photo shoots.

There’s this odd phenomenon though where though I know I’m bigger than many, if I ever use the hashtag #plussize, I tend to get a couple of different responses.  One is that I “don’t look like a size 16” and the other tends to be from other plus size women who seem to think I’m not big enough to class myself as plus size.

Someone once told me that I’m the “clothes designer’s idea of a 16” and I don’t think it was a compliment!  That I am too mainstream and don’t represent ‘real’ plus size women.  As I’m tall I “carry it well”, I apparently “hide it” and “don’t help out genuinely plus size women” as I look slimmer than I am.  WTF?

I had similar comments when I showed my stoma, ostomy bag and scars with responses from some stating that “it’s ok” for me as my “stomach is flat”.   Comments from some thinking that I’m showing an unachievable image as others have hernias (I’ve had 2!), terrible scarring (hands up here for keloids!) and fat, wobbly bits. (Yup! Got those too!). I’m also covered in stretchmarks from having 28lbs worth of baby over three kids and four and a half years!!!

woman with scars on stomach ibd blogger sam cleasby

I know I come across as super confident but I tell you now, it takes a lot of courage to put up images of myself!  I’m 34, I’ve had 3 children and 3 surgeries, I’ve been chronically ill for 12 years and my body has taken such a pasting.  I have days where I feel shit about myself like we all do, there are times when I just want to hide away from the world.

I choose to tell my story through images, mainly because I run a photography company and so it is a normal part of my life, but also because often photos are so much more powerful than words.  When I was going through my surgeries, I desperately wanted to see other people with stomas, ostomy bags and scars.  This blog has always been about raising awareness and helping others and I desperately wanted to promote a positive body image despite everything I had been through.  Through these decisions I have been accused of sexualising disability and had comments about my weight and size.  From those taking the piss and letting me know I am “hardly a model” (NO SHIT SHERLOCK!) through to those who just want me to cover up!

I know that when you put yourself out into the public arena, that you open yourself up to judgement and I fully accept that.  Worry not, I am not weeping into my pillow at night, I remind myself of the Beyonce rule… 

“Would Beyoncé be reading this? No, she would just delete it or somebody would delete it for her. What I really need to do is… say, Fuck you. I don’t give a shit what you think. I’m Beyoncé. I’m going to Ibiza with Jay-Z now, fuck off. ”

beyonce rule

 

It often feels that the negative comments I get come from other women rather than men.  And I sometimes feel trapped in this weight and size limbo where I am obviously bigger than a lot of women and struggle to buy clothes when I go shopping, but I’m on the smaller end of the plus size ranges and sometimes feel judged for not being big enough!!

All the writing I do about self esteem and body confidence is about love and acceptance for what you have.  Through the past two years I learnt to celebrate that I’m just still here standing!  That my body, though it has disease, scars and illness, carries me through life and is a miracle.  I wish we could all gain a bit more self love, that we could see ourselves in a way that is joyous and filled with love.

We are ever fighting against a tide of social pressure to look a certain way.  We are told we must be thin, young and sexy (though not too sexy or we are asking for it!).  It’s crazy and we need to stop the judgement of other women. We can complain about the media all we want but it can start with us.  We all need to be more accepting of other people, to treat them in a way we would want to be treated.

ostomy photoshoot sexy ileostomy 50s pin up photo shoot so bad ass sam cleasby

And we need to be strong in ourselves and have the confidence to just be ourselves, whatever our size and shape.

I’d love to know your thoughts on this.  As with everything I write, it’s my personal opinions based on my experiences. And our personal opinions are alway skewed so let me know!  Is this something other people feel? Are you plus size and have judged others or are you petite and have an opinion on those larger than yourself?

Sam x

Why aren’t doctors diagnosing IBD?

A few months after the birth of my second child, I began to notice blood in the toilet after I had opened by bowels, I ignored it for a while and then found I was going to the loo more and more.  One morning I woke to a lot of blood and mucus in my pants, I ran to the toilet and it was like a massacre! I went to A&E convinced that something terrible was happening, I honestly thought I was dying.  Doctors really brushed me off, suggesting I had piles and with an irritated tone told me that this was neither an accident nor an emergency and that I should see my GP.

I left shame faced and embarrassed, visited the GP who agreed that it was “just piles” and told me to use over the counter treatments.  The next day I collapsed at home.  I was taken in an ambulance to hospital where after admitting me and doing some tests, they diagnosed me with Ulcerative Colitis.

Around 300,000 people in the UK suffer from Crohn’s or Ulcerative Colitis and figures suggest the disease is on the increase. According to the Health and Social Care Information Centre, the number of 16- to 29-year-olds receiving hospital treatment for the condition has risen 300% in the past 10 years, to almost 20,000.

So why is it that doctors are struggling to diagnose IBD?

sam cleasby ulcerative colitis ibd ileostomy surgery

 

I suppose GP’s and doctors see a lot of abdo pain and diarrhoea and they can’t assume it is always down to Inflammatory Bowel Disease.  IBS (Irritable Bowel Syndrome) is very common with some stats suggesting 15-25% of the population having some symptoms, this along with stomach bugs, food poisoning and problems like haemorrhoids could be throwing them off course, but it is the patient that suffers when they don’t get diagnosed quickly.  It is a problem I hear a lot, many people get in touch and tell me that they were very ill before they got the correct diagnosis.

The difficulty also lies in the embarrassment factor, people don’t like to see their doctors when it comes to matters of the bum, especially if that bum has diarrhoea, incontinence, blood and mucus loss.  It takes a lot to speak out about these problems and then if you either aren’t believed or are misdiagnosed then it takes courage to go back and ask for a second opinion!

Treatment for IBD sometimes requires a trial and error approach, depending on the severity of the flare up and how the patient responds, it can take some time to get the balance of medication right.  For 20% of Colitis patients and 60-75% of Crohns patients, surgery will become necessary and sometimes when either symptoms have been ignored or the patient has been misdiagnosed, the disease has progressed so far by the time of diagnosis that surgery is the only option.

That is why I work hard to #StopPooBeingTaboo to ensure that people are aware of the symptoms and have the courage and strength to speak out and get the best treatment for them as soon as possible.  When I was diagnosed, I had never heard of Ulcerative Colitis and it was an absolute shock.  If I had known more then perhaps I would have spoken out sooner and been more confident in asking for a second or third opinion when my condition was brushed off twice!

ibd periods menstruation sam cleasby so bad ass blog

I truly believe that the more we all speak out, the easier we make it for those who follow in our path.  Believe it or not, I do feel embarrassed sometimes when I tell you all about my incontinence accidents, or when I explain in detail about my surgeries! I do feel that hot faced shame when I think about everyone reading my words, but I do it to make a difference.  I wish I could have read the truth from someone else when I was diagnosed and so I hope that some good can come from my illness.

Crohns and Colitis UK are a national charity who offer tons of support and advice, if you have been diagnosed they should be a port of call to educate yourself and for any support you need.  They say “IBD symptoms vary from person to person – and usually over time. IBD is a chronic (long term) disease and if you have IBD you will probably have periods of good health (remission) and then relapses or ‘flare-ups’ when the symptoms get worse.

The main symptoms are:

  • abdominal pain
  • diarrhoea (sometimes mixed with blood, especially in Ulcerative Colitis)
  • tiredness and fatigue
  • loss of appetite
  • weight loss
  • abscesses and fistulas (in Crohn’s)
  • swollen joints, mouth ulcers and eye problems”

If you are having any of these symptoms and are concerned, you should see your GP.  If you are have a few of these symptoms and not being heard, then ask for a send opinion, print out info from CCUK and take control of your own health.

Doctors are only human and are not infallible, this isn’t about slating them but about accepting that perhaps diagnosis rates aren’t as good as they can be and so as patients we must be our own advocates, make sure we are informed, educated and brave enough to speak out.

 

Sam x

Pancreatic Cancer Petition

I don’t usually share petitions on the blog but I got a message from Ellie this week with a plea for me to share this one and I just couldn’t say no.

“Hi Sam,

I’ve been following your blog since I was diagnosed with Ulcerative Colitis last December and if it hadn’t been for your straight talking and awareness campaigns I think I’d have found it harder to accept.

Unfortunately since then I’ve been diagnosed with pancreatic cancer and started chemotherapy 2 weeks ago. As I’m sure you are more than aware that there is a link that someone who has an IBD has the increased chances of getting pancreatic cancer. Sucks doesn’t it!

I found out today that the only life extending drug for people with advanced pancreatic cancer has been scrapped from the CDF list which means it will not be available for free on the NHS. There is a petition.

Please, please could you share this with your followers, not just for my sake but for everyone who is at risk of or has this awful disease. Thank you so much. And thank you for everything you do to raise awareness of these invisible disabilities.

Yours sincerely, Ellie x”

 

pancreatic cancer petition

 

Thank you so much Ellie for bringing this to my attention, the petition says this…

“On 4th September 2015, NHS England made the shocking decision to remove life-extending drug Abraxane®, one of the first new drugs for treatment of pancreatic cancer in 20 years, from the Cancer Drugs Fund. This reduces an already limited choice of treatment options for patients in England.

Abraxane could have a considerable impact on one year survival rates of pancreatic cancer in the UK, which are the worst in Europe. Trials have shown that in some cases, the drug can extend a patient’s life to over 2 years, allowing patients with advanced pancreatic cancer to resume a normal life, taking part in everyday activities, and more importantly having valuable extra time with their loved ones.

NHS England and the Department of Health need to review this decision immediately.”

Please go sign now.

Cancer affects so many people, but those of us with IBD have a higher risk of cancer and we need to stand together and fight for those of us who are already suffering.  You can follow the group championing this petition over on Facebook and get involved.

So please, sign.

 

Sam x

 

 

Wonder Woman Wednesdays

Wonder Woman Wednesday is my new weekly round up of the amazing women, consider it your own weekly Galentines Day!

galentines day

I very much believe that women should be boosting one another up, celebrating our accomplishments and being cheerleaders for one another!  At times women are pitted against one another, especially strong and vocal women, let’s not compete, let us champion.  As the great Leslie Knope says “Ovaries before Brovaries”.

And for the record, Amy Poehler is ALWAYS my number one Wonder Woman!

First up…

Amanda Palmer

Amanda Palmer had her first baby this week, a little boy called Anthony named after her dear friend who recently passed away.  I LOVE Amanda Palmer and all her work, I am ever inspired to release my creativity, to live the life I want and to celebrate my differences and weirdness because of this woman.

sheffield wonder woman wednesdays sam cleasby so bad ass

Photo Via Instagram https://instagram.com/p/75iwxzQWx7/?taken-by=amandapalmer

 

Chloe Madeley

In the 90’s I used to wish Richard and Judy were my parents.  I possibly still do.  That’s a bit weird isn’t it…  Anyway Chloe Madeley is the daughter of the King and Queen of 90’s daytime TV, making her the Princess of all that is good and holy.  If that isn’t enough reason for her to be in Wonder Woman Wednesdays, she is pretty fucking awesome in her own right.

A personal trainer, nutritionist and fitness guru, this girl is all about the positivity.  Her instagram feed is full of life affirming loveliness (there are also lots of half naked selfies of her looking sweaty and gorgeous).  You sometimes find fitness pros are somewhat negative towards us mere mortals who eat cake and can’t crack nuts in our buttcheeks, but Chloe just seems very down to earth and real, she shows the love to all women and I kind of want to go for a pint with her.  I’d even promise not to just talk about her mum and dad!

sheffield wonder woman wednesdays sam cleasby so bad ass

Photo Via Instagram https://instagram.com/p/5xm4MPn594/?taken-by=madeleychloe

Violet Fenn

My friend Vi is pretty awesome, a blogger and writer at Sex, Death, Rock n Roll, she is honest, frank and filthy… Proving to women everywhere that ageing is something wonderful and not to be afraid of, she writes about sex, relationships and society from the perspective of a kick arse woman in her 40s.

She is my friend, shoulder to cry on and naughty compadre and I loves her a lot.  Go follow her now

violet fenn writer and blogger sheffield wonder woman wednesdays sam cleasby so bad ass

Fi Hennessey

Fi is a Sheffield based Birthing teacher at The Daisy Foundation Bumps and Births.  She has helped so many mums to have more relaxed, peaceful and enjoyable labours and births, that is reason enough to celebrate her today but it is not the only reason.

Fi is currently going through the process of egg donation at the ACU at Jessops Hospital in Sheffield, this is something I was looking into before I got really ill and had all my surgeries and so it is close to my heart.  I know that my body isn’t strong enough to go through this tough process now and the age limit means I probably won’t ever be able to do this but Fi is.  She has her own family and runs a business but she is putting her body through the immense strain to donate her eggs to make a difference and change someone’s life.  And that should be applauded!

She also posed naked to show her post natal body to open the conversation around the pressure mums feel after birth.  All. Round. Awesome.

fi hennessey sheffield wonder woman wednesdays sam cleasby so bad ass

That’s my first Wonder Woman Wednesdays done… See you same time next week for more Uteruses before Duderuses…

Sam x

The NDA’s and #IBDnotIBS *UPDATED*

Firstly, I want to thank every single person who voted for me and endorsed me in the National Diversity Awards 2015.  I was nominated and shortlisted as a Positive Role Model in the Disability category.  It was an amazing thing to be shortlisted and to read through the hundreds of nominations made me cry out my own body weight in tears!  To know that I made a difference to so many of you was just mind blowing and that acknowledgment of the last two years of my life was amazing.

For two years I have run this blog.  I have spoken at events up and down the country.  I have been on countless radio shows, television programmes and in pretty much every national newspaper.  I have done all this through the toughest two years of my life.  In 2013 when my large intestine was removed, I was at my lowest ebb, I couldn’t imagine how life could ever improve.  The past two years have seen three major surgeries, months of rehabilitation and healing, so many hospital visits and stays, my body, mind and spirit have taken the hardest battering and life has been, quite literally, shit.

sam cleasby national diversity awards nda ibdnotibs blogger

Yet I carried on.  Raising awareness at every step, talking about the most intimate and embarrassing details of my life because I want to make a difference to others, I want those who follow in my path to have it a little easier than it was for me.  So on Friday night as I attended the National Diversity Awards, it felt good.

As we got to my category, the nominees were read out.  My heart was pounding and I felt sick with nerves, every message I have received was running through my head as I thought about how, even in my darkest times, I had managed to make a difference to so many and now here I was, in a posh awards listening to my name and accomplishments being read to the hundreds of people in the room!!!

‘Sam Cleasby has worked tirelessly to raise awareness of IBS’

Wait, what?!!?!! No, fuck, they got that wrong! I don’t have IBS!!!

sam cleasby national diversity awards nda ibdnotibs blogger

I didn’t win.  That was ok as I was up against some of the most extraordinarily inspirational people.  Just to be in their category was a blessing.  I was just honoured to be there!

But IBS?  I felt hot and embarrassed.  Tears were in my eyes as I realised that the past two years had done nothing to raise awareness when the National Diversity Awards couldn’t even get it right!!! I looked down to the programme given to all attendees and read the passage about myself.  There it was again.  IBS.  And worse still, they wrote that I had shown off my jpouch.  My internal jpouch?! Nope! I do not remember spreading my bum cheeks and inserting a camera up my anus for a photo shoot!!!!

sam cleasby national diversity awards nda ibdnotibs blogger

My heart sunk.  I realised that despite all this talk of “under represented groups”, all the glitz and glam and celebration of diversity, all these awards had let people with IBD down.  I gulped back the tears at the thought that I had let you all down.  All the people I fight for, every person who has to live with this most debilitating condition, who face agony, bleeding, fatigue, diarrhoea, incontinence, embarrassment, humiliation, all of those people who I stand up for, they were all let down that night.

For some, it may seem like a small thing, but imagine if they had mistakenly called a group of Muslims, who had campaigned tirelessly for the rights of Muslim people, Sikhs?  Imagine if they had used the wrong term for a transgender person? Imagine if they called out the wrong race for those fighting for their under represented group?  Would those things be unimportant?

sam cleasby national diversity awards nda ibdnotibs blogger

IBD is a tough disease, it is life long with no cure, patients have to take medication that is at times so harmful, surgery is commonplace and it sometimes kills.  IBS is a condition where sufferers have diarrhoea, it is miserable but not life threatening in any way.  There is confusion sometimes, and that confusion is really unhelpful to those with IBD as it lessens the importance and seriousness of the disease when it is confused with something far less dangerous to health.

I felt that there was no way the judges and the company as a whole could have read my blog to make these mistakes, how could they have read hundreds of nominations of mine yet got the name wrong? How could they be so confused over my jpouch when I had sent them all the information?  I felt done over.  I felt that I never had a chance of winning as they hadn’t even understood my illness so how could I have had a chance?  Well at least they got the cost of the tickets, hey!

IMG_5894

I went back to the hotel room totally deflated and defeated.  The past two years of my life felt pretty worthless at that time and I had a big old cry at the shittiness of the situation.  Then I wiped my tears, pulled up my big girl pants and told myself to suck it up, buttercup!  This mistake wasn’t going to ruin my passion.  It wasn’t going to make me feel worthless.  It was going to make me stronger, make me shout louder and make me tell EVERY PERSON IN THE WORLD THAT I HAVE IBD, I AM NOT ASHAMED AND I WILL KEEP RAISING AWARENESS, I WILL STOP POO BEING TABOO!

sam cleasby national diversity awards nda ibdnotibs blogger

It may not ever be trending, it might not make for a sexy headline, it might not be caught onto by the PC bandwagon, but I will never stop fighting for every one of the 300,000 people in this country who have IBD.  I will keep going and shout louder than ever before!

I did a video on the night of how I was feeling, it would be great if you could go take a look and share with #IBDnotIBS

You can find it on the So Bad Ass Facebook page here.

 

The response from the NDA people has been very underwhelming, the owner replied on my Facebook page saying that they only used info from the nominees, suggesting I had got my own illness wrong.  This is the only contact I have had, no emails, no phone calls.

sam cleasby national diversity awards nda ibdnotibs blogger

I feel bad for slating the group as on the whole they do an amazing thing, the people I met on the night were all so inspiring and to be in a room with so many people who just want to do good was fantastic.  But they got this wrong.  And they don’t seem to care.  And that breaks my heart.

So I want to end with an apology to you all.  I am so sorry that despite my best efforts, those of us with IBD were let down on the night.  I am sorry that all this effort didn’t help to raise awareness amongst all these people, I am sorry that my voice wasn’t louder, my fight wasn’t stronger.

But I promise you, this will only make me fight harder.

 

Love Sam xxx

 

 

***UPDATE***

I received an email apology that said

“After investigating into this, an extract from your original nomination was used to contribute to your profile, and it has come to light a number of mentions of IBS in your votes may have caused our writer to make this error. However, upon saying this we take full responsibility for this mistake, a thorough proof read should have been carried out in order to avoid this inaccuracy from happening.”

They also offered for me to write for their blog to raise awareness, which I will tell you all now, I have turned down. 

I do charge companies for my writing and blogging, I do this to fund my time that I can then put into volunteering for charities and supporting people with IBD full time. I don’t have the time or inclination to write for this company for free.

For the record I had to send them an awful lot of information and even if people mentioned IBS in their nominations and endorsements, it should have been clear from reading my blog and all that info I sent over that I have IBD. The jpouch comment, I have no idea on!!

I am still very embarrassed, upset and angry about this whole thing. I feel like I can’t have been seriously considered for the award if they didn’t even read the blog in which case it was an awful waste of money and time to go to Liverpool (tickets were expensive, hotel room and travel were all covered by myself) and sit in a room full of people who were told completely incorrect information about me and therefore no awareness was raised that night!

I pointed out that nothing has been said publicly and then they issued a public apology.  That had a BIG mistake in it…

nda get illness wrong

They said I had IRRITABLE BOWEL DISEASE. That’s not even a disease!!!!!

WTF.  An apology for getting my disease wrong, where they then get my disease wrong again???

 

I let them know their mistake and they changed it.  Only they got it wrong AGAIN!!!

nda get illness wrong

 

They changed the I in both IBS and IBD to INFLAMMATORY!! Its like they don’t care at all, right???

Third time lucky and with the help of some irate folk who tweeted and emailed them, they managed to get it correct.

nda get illness wrong

 

Though there is still no mention of the fact they said I posed with my Jpouch out!!

I have had a phone call to apologise, but to be honest, it is as I tell my kids.  Sorry is just a word.  Their actions show an inability to listen or learn and a total lack of understanding.  The fact that the last two changes came AFTER the phone apology says a lot.

If you mess up, then make sure your apology doesnt have the SAME MISTAKES AS THE EVENT YOU ARE APOLOGISING ABOUT!!!

I don’t feel any lesson has been learnt here and I am fuming. Their initial email said that “a thorough proof read should have been carried out in order to avoid this inaccuracy from happening.” yet they then made mistake after mistake after mistake so they didn’t learn any lessons there.  It feels like an absolute piss take and I am just in disbelief.

I was so excited about being nominated and I appreciate the time that all of you took to endorse me and say such wonderful things, but I wish I had never been nominated.  And that makes me so sad.  I wish I hadn’t wasted my money in buying tickets, paying for a hotel and all the costs associated with traveling to Liverpool and having the day off work.

I feel embarrassed, hurt and angry.  And that sucks.

 

Sam xxxx

 

I’m not sorry

My name is Sam Cleasby and I am not sorry.

I apologise constantly, I say sorry to people who bump into me in the street, I say “sorry to bother you” to people who serve me in shops, I apologise to the postman if I don’t get to the door immediately.  If I am offended by someones behaviour, I end up apologising for being over sensitive.  I even said sorry to the dog this morning.

I spend a large amount of my days saying sorry for things that I have no need to apologise for and that needs to stop.  I think it is a throwback to a Catholic upbringing filled with guilt or perhaps that I hate for people to dislike me, though I am learning to deal with it, I don’t like conflict, I have a fear of making others angry.

 

I grew up feeling quite insecure, I worried constantly about what others thought of me, worried that I wasn’t enough and maybe I always felt I have to apologise for my mere existence. So I say sorry.  A lot.

apologising too much

I hate that I apologise so much but it has become a kind of verbal tic, it comes out of my mouth before I even realise it.  It’s funny as I am a reasonably confident person yet the part of me that doesn’t feel enough comes sneaking out all too often.  And it’s not just me, according to a YouGov study a third of British people feel they apologise too much.

Saying sorry when you are in the wrong is the right thing to do and I am all about good manners but when you over apologise, it can give others the impression that you are not confident, are weak and easy to walk over.  Beverly Engel, a psychotherapist and the author of The Power of the Apology talks about how over-apologising can send a message that you’re ineffectual and have low self-esteem, she says “It can give a certain kind of person permission to treat you poorly, or even abuse you.”

 

I strongly believe that when you are in the wrong, an acceptance of your fault and a true, heartfelt apology goes a long, long way.  I have a real problem with people who don’t accept responsibility in their lives, those who think the world owes them a favour, I grew up with people like that, those whose favourite words are “it’s alright for you”.  People who no matter what, believe they are in the right.  And those people suck.  This isn’t about never saying sorry, just only saying sorry when we really are!

I am making a stand for myself and I am going to stop being such a walk over, I have always let things slide or apologised even when I am not in the wrong and I have had enough.  I am done with the people who treat me badly, done with saying sorry when I have done nothing wrong.  The next time someone bumps into me in the street I will not say sorry.  The next time someone upsets me, I won’t apologise for my feelings.

I have been through so much in the past few years with my health that I realise I need to start to care more about myself.  I need to put me first a lot more, I need to cut those who have hurt me, who don’t care about me, out of my life and I need to not say sorry for just being myself.  What my illness has taught me is that life is short, you don’t know how long you have on this Earth and so we need to live every moment to the fullest.  That means celebrating your time with people who bring love, joy and happiness into your life and not apologising for your existence.

My name is Sam Cleasby and I am not sorry.

Why you should go to support groups

I do quite a bit of public speaking about life with IBD, stomas, jpouches and also self esteem and body confidence. I also volunteer with Crohns and Colitis UK and IA Support at events all over the UK.  And the one thing that tends to be the same at these events is the lack of younger people attending and I think it is a real shame.

I understand that there is so much support online nowadays, and I also get that going to a support event in person can be a terrifying experience, but I do believe that person to person support, that real life connection is irreplaceable by chatting online.

When I had my first surgery and had my ostomy, it was suggested that I attended a Stoma Open Day at the local hospital to meet other local ostomates and see all the different products available to me.  I went along and entered the room, so nervous that I was shaking.  I nearly turned back a few times, the idea of going into a room of strangers was almost too much to bear.

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

I think I was the youngest person there by 20 years.  That sucked.

As I walked around the stalls I was asked twice who I was with, the assumption being that I was there to support an older relative.  It really dented my confidence and reasserted this awful feeling that I had an “old persons disease”.

It made me realise that it is a vicious circle.  A younger person attends these events and feels out of place and so doesn’t return, meaning the next younger person who arrives feels exactly the same.

This is why I feel the need to speak out, make a call to arms, to ask all you younger folk (and by younger I mean under 50!) to try out an event local to you.  It isn’t easy but I assure you that having attended many over the past two years, the feeling I walk away with after spending time with people who know exactly how you feel, after talking openly to people about things you may shy away from with your friends and family, that feeling is good.  It’s inclusive, it’s helpful.

That feeling I had at the first event made me want to make things better for others.  This blog, my talks, the things I discuss in the media is all part of a plan to raise awareness and make people be more understanding that chronic illness can strike at any age and that we need more support for all.

I will be at the Stoma Day this year as a volunteer for Crohns and Colitis UK South Yorkshire group, so if you are in the area, please come along, you are guaranteed to see at least one smily face and I would love to chat and help you make other connections.  It is terribly advertised and so you may not even be aware of it.

public speaker about self esteem ulcerative colitis crohns ostomies colostomy ileostomy jpouch ibd

 

It is on 5th October 2015 from 10am – 3pm at Hillsborough Arena in Sheffield and is organised by Sheffield Hospitals.  If you have an ostomy and live in South Yorkshire, do consider coming along.

As I said I volunteer for the South Yorkshire group of Crohns and Colitis UK, we are a team of volunteers who offer support to sufferers and their families, do fundraising and generally getting the name of CCUK out there, especially in South Yorkshire. The team can take up as little or as much time as you’re able to, we’re grateful for any help. So if you feel like coming along, even just to see what we’re about, then we’d love to see you.  We are having a meeting this Thursday 17th September in Sheffield, all are welcome if you are interested in helping out or hearing more.  You can find the event here.  We are ever so friendly and we are a laid back group so please think about getting involved.

I do a lot of this stuff because I really do care, I want to make a difference.  I honestly believe that through speaking out and talking at events, we can help all others who follow in our path.  What we go through as people with IBD is tough, we fight an illness that tries to ruin every part of our lives and the worst thing is the strangling silence that wraps itself around our throats and stops us speaking out.  Meeting others who are going through the same thing makes life a little easier, it stops that feeling of isolation, of feeling of being alone.

So think about it, have a look at local events to you and consider attending just one.  If we all do that, imagine the army of support we could create!

Helping others and helping yourself.  Get involved.

 

Sam xxx