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World Ostomy Day

Today is World Ostomy Day! This is like my poo lady Christmas!

When I had my surgery, I never thought I would be celebrating my Ostomy but as I have learnt to accept my illness, I can recognise that my Ostomy was the start of a new life for me. It is a different life to the one I imagined but my ostomy has had so many positive effects on my life.


Writing about ostomies, jpouches, IBD and invisible disabilities is an honour and a privilege and I have heard so many stories both of struggle and of overcoming adversity.


Today lets celebrate our ostomies whether we still have them or not!  I now have a jpouch and so no longer have my ostomy but I loved my stoma that helped my body come through ulcerative colitis.


Having your body change so massively can be a huge challenge, both physically, emotionally and mentally.  It can be a very isolating experience and so talking out about life with an Ostomy is so important to help others.  I speak out in the hope that people following in my path will have a slightly easier time.


If you need support or help, here are a list of amazing people that I would highly recommend.

Colostomy Association

IA Support

Crohns and Colitis UK

Feel free to share my World Ostomy Day images with links to www.sobadass.me or make your own pictures to share and celebrate!

 

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

When you can’t hold it…

I have seen two stories today about different situations where institutions have put rules in place regarding toilet breaks and it really got me thinking about how distressing this can be for those who can’t just hold it.

The first was regarding comedian Frankie Boyle and how his shows have put restrictions on people leaving the auditorium during his 70 minute show.  Security staff at the King’s Theatre in Glasgow were ordered to escort fans to another part of the building until the performance was over if they left to use the bathroom.  According to the Mirror, the general manager James Howarth said “The show is only 70 minutes long so it’s not an unreasonable request.”

The second story was about St Teilo’s Church in Wales High School in Cardiff that sent out text messages telling parents their children must have a doctor’s note if they want to go to the toilet regularly during lessons.  It said: ‘If your child needs to be allowed out of lessons to go to the toilet then please provide a medical note in the next week so they can be issued with a pass.’

public toilet sign

 

Now I understand that disruption of shows or classes can be annoying to others, but as a person who regularly has to use the toilet and can’t always hold it, believe me, it is more annoying to me than anyone else! I have two different view points on the two stories though.

Regarding the show, it is just so disheartening to know that these rules are in place, though it isn’t great to disturb a show, it is sometimes a necessity.  There is nothing that sets more fear into my heart than the idea of being unable to get to a loo in time.  Take off and landing during flights make me sweat because as soon as I hear the words that the toilets are out of bounds, my stomach churns, my guts cramp and my body panics!

Rules like this exclude people with bowel or bladder conditions from these social occasions.  They increase anxiety and add to isolation.  If you struggle with toilet issues and need to go regularly, then it can be very difficult to mentally deal with being out in public and if you cannot access toilets with ease then it can rule out certain events altogether.  The quote from the manager REALLY pissed me off. It IS an unreasonable request to expect some people to not be able to use the loos for over an hour.  Every theatre/comedy/music show I have been to also tend to have huge queues so leaving it as long as possible just isn’t an option when you know you could end up in a 20 minute queue afterwards.

Invisible disability is everywhere and there are many people with needs and issues that can’t be seen easily and these people shouldn’t have to explain to a theatre attendant their complex medical needs.  Places need to be more inclusive not be excluding people based on disability.

The school story initially upset me a lot more.  The idea of kids having toilet access restricted was quite disturbing as children with bowel or bladder issues have a hard enough time as it is let alone having to produce a doctor’s note.  But in reading the story I think it was just a badly worded text with a genuinely caring message at heart.

The school appears to be putting into place a system where those who have genuine medical issues can have the ability to go to the toilet unchallenged as the school will know which kids have a need to go.  It must be very difficult for teachers to know who is really needing to go and who is doing it to waste time/mess about.  I remember when I was at school that a toilet break was often used to go for a wander/grab a drink/raid the chocolate machine/chat to my boyfriend… (Don’t tell on me!!!)

I suppose the problem with this is that some kids may develop symptoms of illness and need to suddenly go often and without a doctors note they may not be believed.  Children, especially teens tend to hide symptoms of what they deem as embarrassing illnesses.  They may have not even told their parents, let alone been to the doctors yet!

ibd blogger office loo toilet ulcerative colitis

 

The other problem is that sometimes it takes a long time for doctors to correctly diagnose these illnesses, I speak to so many people with IBD who were initially fobbed off with a diagnoses’ of everything from piles to anxiety.  Perhaps we just need to trust that some students will sometimes need to go to the toilet more often than others in order to not isolate, embarrass and upset those who have a genuine need.

If you have ever soiled yourself in public you will know that this isn’t a joke.  It is mortifying and can make you feel that you should stay home forever, it can make you feel embarrassed, humiliated and inhuman.  It can make you feel life isn’t worth living.

Are these things worth it to stop some minor disruption to classes and social events?

I think not.

 

Sam

National Diversity Awards – I got shortlisted!

I am thrilled to say that I got shortlisted for the 2015 National Diversity Awards as a Positive Role Model in the category of Disability!!  The winners will be announced Friday, September 18th at Liverpool’s Anglican Cathedral at a lovely awards do that I will be attending along with Timm as my cheerleader/chief tissue holder!

I am absolutely blown away to be shortlisted, I felt like a winner just being able to read all the amazing comments from everyone who nominated me.  Shall I tell you a secret? I have them in a file on my computer and on those days when everything feels too tough, when I want to hide away and not speak to anyone, I read them and remember why I do what I do.  Why I write about the most intimate details of my life, why I keep going.  You lot are just the best readers in the world, the responses I get on here, on Facebook, twitter or by email just mean the world to me and I want to take the time to thank every one of you.

“The National Diversity Awards ­ a prestigious black tie event, which celebrates the excellent achievements of grass- root communities that tackle the issues in today’s society, giving them recognition for their dedication and hard work.

The National Diversity Awards will be held at Liverpool’s Anglican Cathedral, September 18th 2015 where there are several award categories including Positive Role Model and Community Organisation Awards, which will be split into five categories including race & religion/faith, age, disability, gender and LGBT. Other awards include the Entrepreneur of Excellence Award, Diverse Company of the Year Award and Lifetime Achiever Award.

Charities, role models and community heroes will be honoured at the ceremony showcasing their outstanding devotion to enhancing equality, diversity and inclusion; thus embracing the excellence of all out citizens irrespective of race, faith, religion, gender, gender identity, sexual orientation, age, disability and culture.”

national diversity awards 2015 sam cleasby

 

Poo is a difficult subject, but it is the thing that I talk about the most and what spurred me to start this blog.  To speak out for the 300,000 people in the UK with Inflammatory Bowel Disease and to Stop Poo Being Taboo.

From there I began to think about all the invisible disabilities that people face and the isolation and anxiety that comes with it.  As  a society we are getting better about talking about disability, but there is an awful lot more to be done, especially for those who have a condition that can’t be easily seen.  And that it why I started the More Than Meets The Eye campaign, to get people talking about invisible disabilities.

I am really proud of all that I have achieved so far, but I would love to make a difference to so many more people.  Of course, I would love to win this award, but I already feel so blessed just to be acknowledged amongst the amazing people who have also been shortlisted.  Winning would be a bonus, right now I am just overwhelmed that this girl from Sheffield has done something to help so many.  Two years ago as I lay in a hospital bed, feeling that life as I knew it was over, I couldn’t have dreamt where I would be headed.

sam cleasby blogger writer sheffield

 

Thank you so much to every one of you who voted.

You’re all awesome

Sam xxx

 

 

 

Happy International Women's Day 2015

Hope you have all had a fantastic Women’s Day 2015.  I have had a weekend with friends and family and LOVED seeing my Facebook and Twitter feeds filled with wonderful stories of inspiring women and feminism.

I thought I would share my talk from last year’s International Women’s Day in Barnsley where I spoke about living with my ileostomy and how I overcame the massive changes that surgery brought me and how it affected my self esteem and body image.

 

Much love

 

Sam x