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Why we need to keep talking about IBD

What an amazing year 2014 was for raising awareness of Inflammatory Bowel Disease!! When I was diagnosed with Ulcerative Colitis in 2004, I had never heard of the disease and through the years, so many people I spoke to were completely oblivious to it too.

In 2013, I had a subtotal colectomy and ileostomy formed.  I did what any right minded, modern person does and googled the hell out of it.  I found some great medical advice but very few blogs about IBD.  I talk often about the amazing Inflamed and Untamed, who I fell a bit in love with, and who was the inspiration for me starting this blog, but I could find hardly anything in the UK.

Yet in the past 18 months, there seems to have been a huge uptake in IBD blogs, people sharing their personal experiences of chronic illness of Crohns and Colitis and I think it is bloody WONDERFUL!  It is just fantastic that people facing a life with IBD now have so much information at their fingertips now.  The whole reason I started this blog was to share my stories and experiences in the hope of helping others.

I recently wrote about some of my favourite IBD bloggers, including Thaila Skye and Colitis Ninja, and there are so many people currently working SO HARD to raise awareness, raise money and working to #stoppoobeingtaboo – I raise a glass to every single blogger and campaigner.  We are doing something to make a difference and should be very proud of ourselves!

crohns and colitis awareness week

 

So things are good, right? Yes, of course! But they can be SO MUCH BETTER, and we need to all keep talking about Inflammatory Bowel Disease.

Why? Because the more we talk, the more we #stoppoobeingtaboo, the more money we raise for support and research, the better life will be for the 300,000 people in the UK and the 5 MILLION people worldwide living with Crohns and Ulcerative Colitis.

Inflammatory Bowel Disease is not just a poo disease where you get a touch of diarrhoea…

Firstly, there is NO CURE, though there may be periods of remission, these are illnesses that are with sufferers for life.  The medications taken to control the disease control the inflammation include antibiotics, anti-inflammatories, steroids and immunosuppressants.  But the side effects from these meds include nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and serious or fatal infections.

It is also not just about the bowels, IBD can cause issues in other parts of the body, including inflammation of the inner part of the eye, mouth sores, arthritis, osteoporosis, gallstones, kidney stones, skin rashes and ulcerations, blood clots, anemia and several neurological conditions, including seizures, stroke, myopathy, headaches and depression.

People with IBD have an increased risk of mental health issues, from depression to anxiety and stress, patients have to deal with self esteem and body confidence issues.  Fatigue can also be a huge issue which affects every part of patients lives.

20 to 45 % of people with ulcerative colitis and up to 75 % of people with Crohn’s disease will eventually require surgery in the form of colectomy (removal of the large intestine) ostomies, jpouch surgery and more.  This is on top of the multiple hospital visits that IBD patients will often need to deal with the often very painful disease.

 

fatigue and ulcerative colitis crohns ibd

 

Crohns and Colitis UK is a nationwide charity whose mission is to work with all those affected by Inflamatory Bowel Disease, in particular Crohns Disease and Ulcerative Colitis, to achieve a better quality of life, improve services, and ultimately find a cure.  They raise awareness, provide information and support, fund crucial research, and campaign and speak up for change.

I am a huge fan of Crohns and Colitis UK, I’m part of the Organisation Team for the South Yorkshire group and raise money for the charity on my Just Giving page (always open for any spare change you would like to throw their way!)

So please, keep talking, keep reading, keep sharing… IBD is not going away and the more we talk, the easier life is for everyone who has Crohns or Colitis.

Thanks for reading.  Please go take a look at my Facebook page and like, my twitter feed and follow and my instagram and follow there!

Let’s #stoppoobeingtaboo and never stop talking about IBD.

Sam xx

My favourite IBD websites

When I started this blog last year, I did so because I couldn’t find anything that I wanted to read, which was a personal account of real people with IBD, I wanted to know I wasn’t alone, to feel supported and learn more about the illness, recovery and life with Ulcerative Colitis or Crohns.

I came across Inflamed and Untamed run by the marvellous Sara Ringer and was blown away, I was massively inspired and for the first time, felt like there was a community of people out there who were like me! It is an American site though and so I thought why not start something like this here in the UK.

I love running So Bad Ass and I am thrilled that every day I receive so many wonderful messages from people all over the world and every week  I have thousands of views! I wanted to make a difference and I really hope that through my writing and public speaking I am doing that.

I saw yesterday that Bethany Townsend was voted in the 100 most influential people in the UK promoting disabilities for the image of her in a bikini showing her ILEOSTOMY* bag that went viral.  Hooray for more media coverage about IBD and Ostomies but I was wondering if she’d done anything else apart from share her holiday pic?

No offence to her at all, but it seems a shame that the bloggers/writers/public speakers/activists who write/speak/blog every day don’t get more recognition.   If you want to be properly inspired go check out the people who inspire, support, raise money and are so bad ass!!!

woman showing ileostomy colostomy bag

There are lots of IBD blogs now and there are more and more people speaking out and sharing their stories with the world and I think it is amazing.  The more we talk, the better it is for the millions of sufferers worldwide.

And so I thought I would compile a list of some of ten of my favourite and most inspirational IBD blogs, please take a look at them and get involved.

Big up the everyday IBD warriors who don’t get the recognition they should!!!

 

INFLAMED AND UNTAMED 

THAILA SKYE

BLAKE BECKFORD

COLITIS AND ME (Founder of #GetYourBellyOut)

UNCOVER OSTOMY

THE CROHNS COLITIS EFFECT

VEGAN OSTOMY

COLITIS NINJA

ADVENTURES OF A BAG LADY

THE CHRONIC ADVENTURER

 

There are so many that I just couldn’t name them all and so had to limit myself to my very favourites.  All these people take a lot of time and effort to talk about Inflammatory Bowel Disease, they join me in my quest to #stoppoobeingtaboo and make a difference to people all over the world.  If you are reading this and have crohns or colitis I hope you can see that you are part of an amazing set of people! Get reading, get commenting, get involved.

We all have the ability to act as advocates for IBD.  Let’s make the IBD community proud.
Love Sam x

 

*Can we all please teach the media that not all bags are COLOSTOMY bags??!!!!

Competitive sickness

I love the internet.  I think it’s amazing to have all the information in the world at your fingertips, we are at an unprecedented time where we can access anything and everything.

When you have an ongoing chronic illness like Inflammatory Bowel Disease, the lack of control in your life can be difficult to deal with, I always believe that gaining knowledge of your circumstances can make life a little easier, knowledge is power as they say.  I recommend to anyone going through illness to read up and know your own body.  Know what your treatment options are, what side effects your meds have, what you can do yourself to heal.

The NHS website is always a good starting place, but when I got very ill last year with Ulcerative Colitis I found that I wanted to know about personal accounts of illness, how it is in real life.  I wanted to read about real people and not medical jargon or terrifying medical photographs.  I struggled to find a UK based blog about IBD that I liked (though there seems to be LOADS now which is brilliant!!) and this is the reason I started So Bad Ass.

I found myself this year visiting forums and Facebook groups dedicated to people with IBD, I love that these groups stop you from feeling so alone, I have “met” a few people online from all over the world that I wouldn’t have had the chance to meet otherwise and feel inspired by them and think they do an amazing job at raising awareness and positivity around IBD, ostomies and jpouches.

But, and here is a BIG but… I have left a LOT of groups and forums because of one thing in particular, competitive sickness.

Now competitive sickness is when you have someone who, if you have had 3 surgeries, they have had 6.  If you ask a question about your medication, they will reel off a list twice as long.  If you are struggling because you have a wound that won’t heal, they have had to have a pig skin transplant… (that really happened)

To quote my brilliant step son, if you have been to Tenerife, they have been to Elevenerife!

I am poking fun a little here, of course we should all be sharing our stories.  The more we talk, the better informed everyone becomes.  But I am sure you know that one person who has always had it worse than you?!  They are always negative and the drama llama levels are sky high and they seem to have faced every illness known to man and had every complication going and they are going to complain about it ALL.

Of course I want to know about possible side effects, I want to hear personal accounts of surgery and not just the ones that have gone perfectly! But there are some who are just SO negative that it can really bring you down, scare you, make you feel like this illness is the end of your world.

I think everyone’s idea of support is different and so all you can do is have your own filter.  If someone’s story makes you feel terrible, it is probably best to not listen.  You can find out about negative parts of an illness with it being in an entirely negative way.  Support groups are meant to help, not hinder and so if you find yourself listening to a story that is dragging you down, remember you don’t have to listen! Cut the ties and float away from it for now!

I am sure that my stories and posts on here are not always everyones cup of tea.  I totally accept that and would advice you use the same filter technique here too.  If my posts are helpful, interesting, inspiring and make you feel good then fantastic.  If it is hitting a nerve that day, turn me off!

 

Love Sam x

So Bad Ass – what I do and why

I have had Ulcerative Colitis for over ten years now, and when my health took a real turn for the worse last year and I was facing surgery, I scoured the internet for support and help.  There were a lot of medical websites with confusing terminology and terrifying pictures and there were forums dedicated to IBD patients, but I found these difficult to interact with and like they had no relevance to my life.

I found one amazing blog called Inflamed and Untamed run by the ever inspiring Sara Ringer, her blog was the thing that inspired me to start So Bad Ass.  She was young and happy to talk honesty about her health, I fell in love with her blog and still follow her now.  But as she is based in the US I found some of what she spoke about just not right for the UK.

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd

Over a year later I am so proud of what I have achieved here.  I get thousands and thousands of people a week reading my little blog and so many emails and messages both of support and asking for my help or telling me that this site makes a difference.

I have spoken at International Women’s Day and been booked to do talks at Women’s Institute events and hospital charity events.  I have written for charities, blogs and magazines.  I am devoting myself to raising awareness off Inflammatory Bowel Disease, Ulcerative Colitis, Crohns, ileostomies, colostomies and j pouches! But more than that, I want to use my experiences to help women deal with issues around self esteem, body confidence and learning to be so bad ass and awesome.

Over the past couple of weeks there have been so much media attention given to ileostomies and it is amazing!!! It is the reason that I journaled my experience and have shown my photographs for the last year.  I think the more we see ileostomy and colostomy bags, the less taboo, the less scary and the less shocking they become.

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

Im so proud of my IBD brothers and sisters for sharing the stories and photographs and getting IBD into mainstream media.  I did a story last year about how frustrating I was finding it to be hitting a brick wall when contacting (A LOT) of newspapers, magazines and media outlets and being turned away.  So to finally see stories and images hitting the headlines I am over the moon.

I just wanted to thank all my readers for staying with me on this journey, for reading, liking, sharing and tweeting.  I can’t tell you how much it means to know that I have amazing audience who support this blog and share it all over the world.

 

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It may take more time, but slowly and surely the message is getting out there.  I hope this blog and all the other blogs that are appearing now continue to raise awareness, spread a positive message and make a difference to the 260,000 people in the UK living with these diseases.

Hooray for us!!!

 

 

Love Sam xxx

 

Blogging – with great power comes great responsibility

Yes, just like spiderman anyone writing for the public really do have responsibilities to those around them.  OK perhaps not EXACTLY like Spiderman but Im hoping you will catch my drift here…

with great power comes great responsibility

Bloggers are sharers, we like to write, we find it cathartic, entertaining and enjoyable.  Some of us are guilty of over sharing and some of us like to hold back certain things, things we aren’t comfortable sharing with the world.  We all have our boundaries of what we like to talk about and what we don’t want to put out there, my rule of thumb is that I don’t blog anything that Id be mortified my mum reading, or things that would upset or embarrass my children.

I think through my posts before hitting that publish button and though occasionally Im on the fence as to whether it is 100% right to discuss, I think I get it fairly right.

Its something I have been thinking about recently as I have been asked to do some work with teenage girls, and at a meeting we discussed how we can work on blogging with them whilst ensuring their safety online and making sure they understand the importance of what their content could do to themselves and others.  How they have to take ultimate responsibility for the things they choose to discuss online, whether that is sharing photographs or opinion.

Obviously the subject of my illness can be seen as something impolite to discuss in public, and I write about it because its important to me to share my experiences in the hope that it will help others.  I talk in detail about my health, my illness, my surgeries and how my mind processes all these things.  Because they are MINE, these things belong to me and I am happy to share them with you.

I suppose the responsibility of a blogger is a big grey area, Im no lawyer and so don’t know the laws around such things.  What feels right for one person to talk about is a massive no no for someone else.  This week I added another rule of thumb for myself which is I won’t blog about another persons life without theirs or their families permission.

I feel I can talk about MY illness all day long because its what I am going through and I own it.  I have friends who have all manner of different illnesses from depression to cancer, infertility problems to other chronic illnesses.  I will never blog about THEIR illness, their personal problems, naming them, because it just seems wrong, do you know what I mean?

Equally I would be horrified if I found a friend was writing publicly about me and things that I hadn’t put online.  Id be devastated.  And so would my husband and family.

It comes back to the fact that bloggers are sharers.  When something happens, our brains start thinking about how we can write this down, how we can pour our feelings and thoughts onto the screen.  But when you have an audience, especially if it is a big audience, that power has to come with responsibility.

I am all for talking about difficult subjects, raising awareness and bringing things to the forefront of peoples consciences in the hope of helping others, but I do think that we need to be mindful of how this can come across and that we don’t share things that don’t ‘belong’ to us.

Love Sam xx