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“Oh, I don’t know how you cope!” (sad face)

I get this from time to time, the sad face, head tilted to one side, sometimes there are actually tears in the eyes.  The look of full on pity, perhaps a hint of ‘thank fuck it’s not me’ mixed with horror. 

“Ohhhh, I do t know how you cope!” 

I cope because I have no other choice.  I actually hate the word ‘cope’. It’s nonsense isn’t it?! Coping simply means getting through each day, each hour, each minute.  There’s no opt out in life (well, there is but let’s not go there), you can’t choose to not be ill one day, you can’t pop off your stoma and reattach your arsehole.  So asking me how I cope sometimes feels like you’re asking how I am still alive.  How I’ve chosen to live even with this disability. 

Perhaps I’m being over sensitive, but sometimes I can’t fucking stand the sad looks I get, the pity, the tilted headed frown.  

When I talk on here, in public, on social media, it’s not because I want your sympathy. I just want you to understand a little more. I don’t want to feel like you are appalled by the realities of my illness, I just want you to know what they are. 

I had a big leak recently and someone saw what had happened and the aftermath. They said with utter horror and sadness “ohhhh Sam, it’s just awful!!! I don’t know how you can live with this! How do you cope?! I couldn’t do this!”

I don’t think they meant to be hurtful, I don’t think they realised that their words hurt me far more than the blockage that had caused my bag to block up and push away from my skin.  


Perhaps I’m being unfair in expecting understanding without sympathy, care without pity.  After all it’s hard enough to understand my own feelings let alone expect others to know how I need them to react. 

Just remember for the future though that I really don’t want you to feel sorry for me.  We can talk about it, we can say that it’s shit (with every pun intended!), we can discuss how it’s sometimes really, really fucking hard to have a chronic illness and a disability. 

Take my lead, if I’m crying then please care for me and give me a hug. But if I’m just dealing with my usual day to day life, be aware that your pity can make me feel like I’m a second class citizen, it makes me question your thoughts on me and my life.  Your tilted head sad face may be well meaning but feels patronising as hell. 

✌️ & ❤️ 

Sam XX 

No Coloniversary

Three years ago today, I was wheeled into theatre and had my colon removed and my first ostomy created. I’d been in hospital for weeks, and this was the end of the line after 10 years of ulcerative colitis.  At the time, I thought it would be the end of all my problems and though I was upset, distraught and terrified, I truly felt that I could start a brand new life without illness.

In the past three years, I’ve had three further surgeries, multiple hospital visits and I’m awaiting a date for my fifth and possibly sixth surgeries!
Don’t get me wrong, I don’t regret what happened. I’d had years of flare ups and illness but I don’t think I really recognised that this was just another chapter in my health story, rather than the end of it.

sam cleasby blogger ostomy ibd disability

There are so many wonderful things that have happened in the past three years, things that would have been difficult, if not impossible with my ulcerative colitis. I travelled to Vietnam and Australia, I renewed my wedding vows and I started this blog!
This place has been such a blessing, it has been my diary, a cathartic release to spew out all my feelings. It’s also let me down a new career path, three years ago I’d have never believed I’d be on TV and radio or that I’d be featured in nearly every major newspaper! I wouldn’t have thought I’d be sitting on the This Morning couch with Holly and Phil, be going to parliament, be writing for a newspaper or be in US People magazine!!

sam cleasby this morning holly willoughby Philip schofield

More than that though, I wouldn’t have believed that id have the strength to help others. To inspire and support people all over the world.  I wouldn’t have thought I’d be meeting wonderful new people who courageously share their stories with me and make me carry on writing.
Three years ago today, as I lay in the high dependency unit, tubes everywhere, I was at my lowest.  I was broken, helpless and my soul hurt.  I felt like my body was a failure, that I had become a burden to everyone around me. I felt as though the world would be better off without me.

sam cleasby blogger ostomy ibd surgery

This blog helped me through the toughest times of my life and I want to thank every single one of you for reading, commenting and supporting me.  I’ve had well over 2.5 MILLION views now, I still can’t believe that number when I say it out loud! And every single reader has a place in my heart.
Thank you for following my journey for the past three years, I hope you’ll continue to be by my side for the next three.

Love Sam xxx

Clinimed Ostomy Skin Products

Clinimed are a company who supply ostomy bags and accessories and they sent me a goodie bag of products to try out, including medical adhesive remover in spray and wipe form, barrier creams, films and wipes and a carry bag.

I have to say that their carry bag is my favourite one so far, it is compact and has a hanger but the best bit is that it opens into a little shelf meaning when you are changing your bag out and about and inevitably there is no shelf or place to put your supplies, the bag solves that issue.  It also has a little removable mirror which is brilliant because as you may have found, many accessible toilets don’t have a mirror… Perhaps they think people with extra needs don’t want to look at themselves??


 Anyway, on to the products:

Firstly, I tried the Appeel medical adhesive remover.  This sort of product is a really important part of your ostomy kit.  When you are removing your bag without this, it pulls at the skin and can make it very sore, so it is something I use at every single bag change.  I use the spray to remove my bag by applying the liquid from the spray can, the cans are small and easy to fit in your kit and a little pump of the can gives out a lot of the product.

ostomy medical adhesive remover

I sprayed it on the flange of my ostomy bag and gave it a few seconds to get to work before peeling off my bag.  It worked really well and left my skin feeling quite moisturised, some sprays I have used before felt drying to the skin.  I then use the Appeel adhesive remover wipe if there are any residual stickiness around my stoma, this is particularly good for me as I am using a paste around my stoma and if that is still stuck to my skin, it can be tricky and painful to remove.

I also tried the LBF barrier range, this comes in a few different mediums which is good to have the choice as everyone has different preferences.  There’s a barrier film spray, film wipe, foam applicator and a barrier cream that comes in a bottle or sachet.  Barrier creams and films are used to create a protective layer between your skin and any ostomy output that could get on your skin.

The most important thing with ostomy care is looking after your skin.  The output from your stoma is very acidic and can burn the skin, also the act of sticking and removing bags all the time can have a negative effect on the skin.  If your skin gets open sores then it becomes wet, and ostomy bags don’t stick to wet skin, this can cause leaks which then makes the skin even more sore.  It is a vicious circle that is miserable to get out of, and so barrier creams and films are essential.

After you remove your bag and have cleaned your skin, you apply the barrier in whichever form you have chosen, allow it to dry and then apply your ostomy bag.

I prefer the barrier film wipes, I find them really easy to use, and like that I can put it exactly where I need it and then dispose of the wipe in the bag with my used ostomy bag.  The spray works just as well, but for me, I don’t like that it isn’t quite as direct, it sprays across a wider surface rather than dabbing it exactly where I want it with the wipes.  But then I have friends who would much rather use a spray can, you should try both and see what your preference is.

ostomy barrier cream

The barrier cream, in my opinion, is great for people with a jpouch for the dreaded butt burn, it is a light cream that feels nice on the skin and creates a barrier from the delicate skin around your bottom and the acidic waste output that you are passing.  I like it for skin around my stomach too where I have soreness but for around my stoma, it isn’t my favourite medium.  This is because I feel that any cream has to it a certain greasiness and that concerns me with the bag then sticking over the top of that.

You use the cream sparingly and rub it in well, but I found myself waiting a long time to then apply my bag as I was worried that the cream would make the bag stick less well.  For convenience sake, this is why I prefer the wipe.

The LBF barrier wipe dries in seconds, you clean your skin and then rub the wipe on your skin where it could come in contact with output.   It is a sterile product and so you can use it on broken skin and is no sting which is great as when you have open sores, the last thing you want is to put something on that will feel like salt in a wound!

There are lots of different ostomy products about and it can be confusing to know which one will suit you.  I also find that most people end up using the product that is first given to them by the hospital or stoma nurse, sometimes not knowing that they have options.  Everyone has the freedom to choose what sort of supplies they would like to use and a way to do that is to request the free samples from companies.

sam cleasby blogger ostomy ibd disability

If you would like to try any of these products, you can request free samples here or if you aren’t too sure what you’d like to try, you can speak to an advisor.  You can also call them on 0800 036 0100.  I’ve found the staff really friendly and helpful, so don’t worry about any ‘stupid questions’, there aren’t any stupid questions!!! There is tons of really useful information on the site, though if I am honest, it is a little clunky to find, but bear with it as I have just been reading up on more info on dehydration and found it very helpful!

So there we go, another ostomy review.  I love having the opportunity to try new products, but remember that you can try things too.  Don’t be afraid to get in touch with ostomy companies and ask for free samples of their products, there are so many different things out there and you have the ability to try them out.  Your ostomy is here and you have to live with it, but you don’t need to be suffering.  If you are having issues with your stoma, please speak to your stoma nurse and try different products till you find things that suit you.

 

Sam xx

 

Disclaimer: From time to time, I am either sent products for free to review or I am paid to review them.  This sort of work pays for the running of this site and keeps me in Gin and sparkly shoes.  I only work with companies who I feel are a good fit and who have products/events that I feel would benefit my lovely readers.  Whether I receive free products, or I am paid, my reviews are honest and all my own opinion.

Vanilla Blush – Ostomy underwear that makes you feel awesome

I met Nicola at the recent Get Your Belly Out Ball who is the owner of Vanilla Blush and we got talking about the brilliant work she has done in the field of Ostomy Underwear.  As an ostomate herself, Nicola has created a range of beautiful underwear specifically designed for people with an ostomy bag.  Nicola kindly sent me some of her products to try and I am so impressed!

There are ranges for both men and women and they go from hernia support wear to swimwear to beautiful but practical underwear.  They look like any other high waisted underwear from the outside but have an internal pouch that houses your ostomy bag, keeping it off your skin and close to your body.

sam cleasby Nicola dames Vanilla Blush ostomy underwear

I tried them out and I can’t believe how great they feel, I have never worn specific ostomy underwear before, always choosing everyday pants but now I have tried these, I am a bit in love.  I think originally I felt that they were trying to hide the ostomy bag away and I wasn’t comfortable with that, but having tried them, they are so practical and cleverly designed and make me feel awesome.

What I love most about them is they are not medical, they don’t look any different to beautiful lingerie, the website doesn’t scream “SICK PANTS FOR SALE HERE!”  Buying and wearing these knickers just felt like a great experience.  I don’t want reminders of my illness, especially not when Im trying to wear something to feel good and Vanilla Blush get it so right.

Going from a UK size 6-8 up to a 20-22, there is a good range of sizes so most people should be able to find something for them.

I wore the hernia support vest and I felt really held in and like my hernia was well supported, and it looks like any other vest.  This allowed me to do some gardening and housework, something I had been struggling with before. (Although after taking this photo, I realised I had it on backwards!!!)

vanilla blush ostomy underwear hernia support vest

I love that all the models on the website are real people with real ostomies.

I also tried the other knickers and just fell in love with them, I felt in control, beautiful and awesome. My sister saw them and wanted a pair for herself and she doesn’t have an ostomy! They feel very well made, as good as any high end underwear I have bought before and wash well.  I have to admit that I put them through the washing machine before reading the website which advices hand washing, but they did survive a 40 degree wash with no ill effects.

vanilla blush ostomy underwear

 

Warning… If you are my mother or child or don’t want to read about sex, step away from this post now!

Still here? OK, so Vanilla Blush do some crotchless knickers.  I loathe to use that term as it sounds so tacky and creepy.  The underwear is the same shape as the other pants but has a split gusset that looks like normal knickers when together or when separated it is open.  I wasn’t sure about these, we got them out and had a giggle and talked about the connotations of crotchless knickers.  Then I tried them on out of curiosity more than anything.

As you know, I don’t like talking about my sex life on here, but I have to say, they are a very clever design.  It’s not that I want to hide my ostomy bag or that it shouldn’t be seen, it’s more that the presence of it can sometimes be off putting, the rustle of it is a subtle reminder that it is there and so these pants mean you can be intimate whilst your bag is safely in the pouch and flat to your body.  The pants looked classy and like beautiful lingerie, it didn’t feel seedy or weird but just that someone had actually thought about the sex life of people with an ostomy, which is something hospitals and doctors simply aren’t doing.

OK, enough sexy talk!

vanilla blush

These knickers rock, I adore them! Go take a look at the website and if you are in the UK, take a look at the prescriptions page, you can apply for:

  • UNDERWEAR: 6 pairs per-year (these have an internal Stoma-support pocket).
  • SUPPORTWEAR: 3 items per-year (Level 2/3 flexible Hernia Prevention Support inbuilt).

 

If buying yourself, prices for underwear go from £13 -£20.  Not cheap I know, but they are of such a great quality and certainly compare positively to more expensive lingerie, I think it is well worth the money and will certainly be buying more.

 

Sam xx

 

Disclaimer: I was not paid for this review, but I was sent the underwear for free from Vanilla Blush.  From time to time, I work with companies who sponsor me in some way, either though payment or products.  I will only work with companies that I believe have something positive to offer my lovely readers.

 

Opus Healthcare Ostomy Support Videos

Last year I had a day filming with Opus Healthcare, I have used their products before and was asked if I would help them on a project where they wanted real life people with ostomies and jpouches to talk openly about their lives.  It was a lovely day with three others, Luke, Charlotte and Amanda and it was really interesting for me to hear their stories too.  This was when I still had my jpouch before my latest surgery.

Take a look at the videos below, starting with my introduction.  I need to point out that on filming day, I was so ill with pouchitis, I ended up in hospital for IV antibiotics shortly afterwards so if I look a bit sweaty and manic, you can understand!

And here is Charlotte!

 

Have a look on the youtube channel for the other introductions.

First we talked about diagnosis…

 

And then we talked surgery… 7 out of 10 people with Crohns Disease and 3 out of 10 with Ulcerative Colitis will have some type of surgery in their lives.

 

People with IBD will tend to have an embarrassing story, this can be really isolating, but sharing your story can make you feel better.  We talked embarrassing experiences.

 

But we also have a LOT of positive experiences too…

 

Their are so many different accessories and products out there, it can be a bit confusing.  We talked about knowing about products and how to try new stuff.

 

I genuinely LOVE the Lift Plus 360 adhesive remover (I am not paid to say that!!!) it sprays at any angle and works really quickly.  Here Amanda demonstrates the product.

 

We finished by talking about something that is so important, support.

 

You can find out more about Opus on their website and view all their videos on their YouTube channel.

 

Sam x

 

 

Disclaimer: This is a sponsored post by Opus Healthcare.  Every now and again, I am sponsored by companies who I believe are of interest to my lovely readers, this allows me to continue with the blog and keeps me in pretty, sparkly shoes.  I only work with companies who I believe are a good fit with So Bad Ass and who have content or products that my audience have an interest in.

When the struggle feels never ending

I visited my consultant yesterday (yes, on a Saturday because despite the reports, we DO have an NHS on the weekend!) I’ve been having stomach pains, feeling very tired and more worrying, some weird swellings in my stomach.  I knew what he was going to say, but it didn’t make it any less devastating when he told me I have two hernias. 

Fuck. Two?! 

I have a parastomal hernia, which means it sits right behind my stoma and an incisional hernia in my belly button.  I can’t actually explain just how upset I am.  I know some people may think that a hernia is a minor thing, but it affects you every day and limits what you can and can’t do.  But worse than that for me, is that they can only be fixed through surgery.  I just feel my struggle is never fucking ending. 

Just saying the word ‘surgery’ makes me anxious, I feel hot, my palms sweat and my mouth goes dry.  I feel like crying and running away.  The word takes me back to a dark place of hospital wards, pain, suffering and sadness.  I feel panicky and sick. 

Mr Brown saw my face and asked me what I’d like to do, he said surgery is the treatment for this and I just shook my head. “No. I can’t.  I’m not ready in my body or my mind to face surgery again.”  He smiled and agreed, saying he thought I was right and that we should wait as long as possible to operate. 

I asked about alternate ways to help during this time, I already wear support underwear (see Vanilla Blush for support underwear that doesn’t look like your nan bought it) and I try to not over exert my tummy muscles.  I have spoken to my stoma nurse about getting some other hernia support designed for people with an ostomy. 

The other thing is my weight. There’s too much of it. 

I asked Mr Brown if losing weight would help and he said yes.  It will help with the pressure on my stomach and when I do face surgery it will be better for me to be a bit lighter.  I’m a size 16-18, my BMI is 28, I am classed as overweight and plus size. I genuinely like how I look, I don’t diet because I don’t feel that I need to be thinner.  Now I am being told that losing weight would be really beneficial to my health and so it is time to shed a few pounds. 

I know this will be hard, I’ve been overweight since I started having babies but if this will hold off the surgery then it something I must do. 

Regarding the tummy pains and aches, I was told that I’ve had a lot of surgery, there are a lot of internal scars and unfortunately, it is just part of healing. I’ve had a lot taken away inside so I suppose things are moving around and settling which causes pain.  Regarding the tiredness I had bloods taken to test my vit b12 so Ill wait and see what they say about that. 

I’m trying to be positive and look for the ways I can help myself. But really I want to hide in a duvet and cry. I’m absolutely devastated. Have I not been through enough? Does the struggle never end? After each of the 4 surgeries I’ve had in the past 3 years, I think it will be my last, I think that this is the one that makes everything ok, but it never does. 

There’s always something else around the corner and I’m so tired of being unwell and broken.  When does it all end? When will I be ok? 

I don’t know the answer to this question but I do know that I have no other choice but to plod on and keep going.  I’ll recite my Yorkshire mantra that “it’ll be reight” and keep smiling. 

Sam X 

Getting back to what you love – reconnecting with nature

One of my fondest memories as a child is of my nannan’s garden. She grew flowers and plants that were beautiful, but also fruit and veg, I remember eating strawberries with her straight from the ground, our fingers and lips sticky and red with the juice.  My nannan’s garden and home was a place of love and joy, a time spent with all my cousins playing and having fun.  Even now, at almost 91, nan lives in the same house, and her garden is still filled with blooms.  I visit her every week and last week, she was saying how much she wishes she still had the energy to grow her own vegetables, but she is happy just being able to potter and look out on her plot.


When my kids were very small, we moved house to a new area that was much more rural and in our little garden, I started planting fruit and vegetables for us to eat. I had little idea what I was doing but grew easy plants such as tomatoes, peas and herbs. I loved being in the garden and really enjoyed seeing the kids eat straight from the veg patch as I had so many years before.

I love seeing them out in nature, getting dirty and having fun, the veg and plants are my joy, but for them it is just about playing and being outdoors, from mud pies to dens.  It was much easier when they were small to get them outside, now at 15, 13 and 11, it takes a little more persuasion, but once they are out, they get right back into it.

allotment sam cleasby sheffield gardening disability

Since those early days, I have slowly learnt more and more and grown more each year. I’m no expert and still rely heavily on gardening books and the Internet, but I feel so happy in the garden and so I just go with a trial and error tactic. The past 3 years have been tough with me not being physically strong enough to grow anything. I felt that planting things would end up as more work for Timm if I fell ill.

In January this year, I had another big surgery. I had my failing Jpouch removed, a permanent stoma formed and my butt removed.  The recovery was so hard and I couldn’t even bathe myself, I was bed bound and felt so weak.

We were in the middle of buying a house at the time that has an allotment in the garden. A dream come true but during my recovery, it became a source of immense anxiety.  I couldn’t imagine being strong enough to do the basics, let alone to plant and maintain a full allotment!

allotment sam cleasby sheffield gardening disability
It just seemed so unobtainable. I was so physically weak, just walking to the bathroom left me out of breath.  I was in so much pain and I felt helpless, useless and hopeless.

People told me to take one day at a time, to remember that my body was healing but that I would be stronger very soon.  I couldn’t imagine it. I could barely turn over in bed, how would I turn over an allotment’s worth of soil in the vegetable beds?

But I’m so pleased to say that here I am! My allotment is well on the way, with a lot of help from Timm with the heavier work and lots of time of seated planting and gentle, slow work, the garden is looking amazing!

allotment sam cleasby sheffield gardening disability

Yesterday was the hottest day of the year so far and we had a day in the lotty, it was so hot that I was in shorts and a bikini top. It’s quite private so I wasn’t worried about being overlooked, but as I worked away, I looked down at my bag and it made me realise just how far I have come.

allotment sam cleasby sheffield gardening disability
I am certainly not at full strength, my recovery is still continuing and I am still having some pains and niggles. I am being careful, I don’t push myself too hard and I listen to my body. But I am here doing it! It feels amazing and it makes me celebrate how far I have come.

allotment sam cleasby sheffield gardening disability

Four months ago, I was bed bound and could do nothing for myself, today I am up and about, getting stronger each day and making sure that I am doing the things that make me happy.

I’m being careful but I’m dog walking, I’m gardening, I’m spending more time outside in the fresh air and this is helping not only my physical health, but my mental and emotional health too.

allotment sam cleasby sheffield gardening disability

If you are struggling right now with poor health, just remember that things won’t always be so tough.  We have bad days, bad weeks, bad months even, but on the good days, we need to think about what will make us really happy and aim for that.

I’m a big believer that the outdoors is good for us, we need to try and get out every day.  Be it for 5 minutes sitting with the sun on your face or a walk or run.  It helps a lot when the weather is good, but being in the outdoors, especially woodland and countryside can really lift the mood.

I was reminded of the importance of this, this week, when I felt as though I had lost my kids to their computers and so we switched everything off and spent a day in the allotment.  At first they were grumpy, but very quickly, they started helping out, playing, building dens and more importantly, talking and laughing.  We are all so reliant on computers and phones, sometimes you just need to disconnect and reconnect with nature and family.

I know that can be easier said than done but today, if possible, turn off your computer, go outside and get back to something you love.

Sam xx

This Morning with Philip and Holly… And So Bad Ass

Yesterday was a whirlwind of awesome! I appeared on ITV’s morning show This Morning and got to meet the very wonderful Philip Schofield and Holly Willoughby and talk about my all time favourite subject, poo!

I was invited on by TV and radio personality Judi Spiers, who along with her husband, invented a product to help people to change ostomy bags.  I reviewed the Riksack for them last month and they had been invited onto the couch for National Bowel Month and asked me to go with them.  Hooray!!

The researchers got in touch and had seen my blog and thought I would be great on TV, which was a huge compliment, almost as exciting as when they told me that Philip had been reading my blog and loved it! Arghhh!!!! So, if you are reading this now Mr Schofield, hiiiiiiii you are a living legend and a total fox!

I got the train down to London the night before after a traumatic decision over what to wear on the telly box.  I asked my awesome followers on Facebook for advice and advise they did… Over 300 of them, though unfortunately all saying different things!! In the end I went for a flowery dress by Lindy Bop which I felt comfortable in and also felt fab in.  Of course, I also wore my sparkly, gold boots.

What do I wear on the telly box?! Excuse my wind swept hair and grey socks! 😂

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I got picked up in a car from my hotel and taken to the studios, hilariously there were some paparazzi hanging out and they got excited as I pulled up.  Unfortunately they were super disappointed when I got out of the car, I still waved and smiled just in case! (HA!)

The staff at This Morning were all lovely, very welcoming and trying to put you at ease, there were drinks and pastries and snacks but I didn’t eat as I didn’t want my stoma farting and bag filling up on live TV.  I went into hair and makeup where I was attended to by #MrFaceMaker and then back to the Green Room I went.

In hair and makeup with #mrfacemaker at #thismorning 🙌🏼

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I filmed a pre recorded piece where I changed my ostomy bag using the Riksack, I was hoping to be the first stoma on live TV but alas, they cut that part out of the live show.  It was a bit odd to change my bag in front of strangers, the team were very sensitive though and made sure it was just a producer and a cameraman.  After changing my bag, I asked the producer what she thought, she admitted that she had been concerned as she was squeamish and was worried that it was going to be difficult to watch, but she was amazed that my stoma was so small and not nearly as terrifying as she had imagined.

This is why I do all the things I do, to change perceptions and break those taboos.

#thismorning

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So we then went onto set (which is much smaller than you imagine and all in one room) and I met the King and Queen of daytime TV, Philip and Holly.  Philip came over and kissed me and welcomed me to the show and I went over to Holly… and curtsied.

WTF? Whyyyyyy would I do a curtsy?? I was just a bit star struck and then I laughed and said “Oh.  I just curtsied” THEN CURTSIED AGAIN!!!

This is why I shouldn’t be allowed out in public.

Anyway, they had a laugh at my weirdness and then we sat on the sofa, I was with Judi and surgeon Mr Ian Daniels and off we went…

The interview went quicker than you think it will, it seemed to be over in a flash and then we were done! I wish I had said more but the slot was about the Riksack product and about signs and symptoms of bowel disease and bowel cancer and so it was important to get that info out.

I loved every minute of it and would love to do more TV as though it is terrifying before, it is so enjoyable once you are there doing it.  It is hard to get a lot of info into a 7 minute slot, especially when there are three people being interviewed it is nigh on impossible to say everything you want.  So apologies for not getting a bit more So Bad Assness out there!

Arrrgghhhhhhhh they were so lovely!!! Hope I did you all proud!!!!

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Holly is as beautiful in real life as she is on TV.  Seriously, I was a bit in awe of her and she was really sweet and lovely.  She was very friendly and complimented my dress and they both congratulated me on this blog and my work in disability.  Philip is a total fox.  I loved him in the early 90s with Gordon the Gopher and can’t believe I got to meet such a famous celeb.  He was really friendly and put you right at ease.  People have asked me to dish some dirt on the two of them, but I cant! They were just lovely!

I am really proud of myself.  The past few years have been hellish and there were times when I was in HDU or crying in pain in bed or leaking and feeling like a monster when I felt so low that I couldn’t imagine going on.  So to be on live TV four months after my last surgery was a HUGE milestone.

I do what I do to make others understand what life with an illness or disability is like, I do it to break taboos, to educate, inform, support and inspire.  I do it to make a difference.  I do it because I need a reason that I have had to go through all this.

#thismorning

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I didn’t plan for my life to be a series of battles, of medication, surgery, illness, pain and suffering.  But this is the hand I was dealt and so I will use every single one of these things to help others and make a difference in the world.

You can view the interview below, thanks for all the lovely messages on Facebook and Twitter, they mean everything.

Sam xx

Why I show off my ostomy bag 

I’d like this post to just say ‘BECAUSE FUCK YOU!”
but I’m going to try and be a little more level headed. Which is difficult when I’ve just read a post on mumsnet by a charming person called Frikkadilla…

I should probably pop a warning in here to say this post is ever so sweary! If you’re offended by f-bombs, you should probably step away now.

Still here? Then let the rant commence.
Ohhhh FrikkaDilla… How I’d like to really show you my bag. Close up. Rammed in your face.
Let’s go through the points.
“Those Facebook photos with Stoma pictures. Am I wrong to really not want to see this?” 
Well, no. We have a choice in what we view on social media. If you don’t want to see these images, turn off your fucking computer.
In life, unless you wish to walk around with a bag over your head, then you will see people with disabilities, people who have medical devices that are part of their lives, people who are different to you. If you don’t wish to see people with medical problems, I’d suggest you fuck off and live in a cave.

sam cleasby body positive plus size ostomy
I have family and a friend who needs this piece of medical help however I keep being surprised (no…shocked) when I see people posting photos of themselves showing their bag off.
‘I’m not racist because I have this one black pal…’ Oh sorry! I thought we were all giving ourselves shitty excuses to say terrible things!
I’m sure your family member and friend must feel so supported by you and your desire to get people with an ostomy to hide away!
Your “surprise” and “shock” make me howl, you have the whole of the Internet at your fingertips and a photo of a woman in a bikini with an ostomy bag have affected you this much? Blimey! Let me send you a few links to some really shocking stuff. There’s this one video, at band camp…

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd
I’ve even seen a woman on the beach in a bikini showing one off (Facebook photo)
How very fucking dare she? A woman went on holiday and wore a bikini??? No way!
You get that we can’t take the ostomy bag off right? That it’s something worn all day every day, it’s not a fashion statement, it’s a health device that allows us to still be alive!
People with an ostomy are like anyone else, they go on holiday, they wear human clothes, they own cameras and they are allowed on Facebook…

ileostomy bag bikini swimwear beachwear holiday

I just don’t understand this need to show it off. Why are they doing it?
Firstly, it’s none of your god damned business what other people choose to do.
Secondly, people are ‘showing it off’ because it is a part of their body, a device that can’t be removed and so most people are just trying to live their lives without embarrassment or fear of nasty, small minded bigots like you. They are sharing a photo of them, in their full glory.
Would you like all people with a disability to hide away? What about those attention grabbing amputees showing off with their missing limbs? They need to wipe their Facebook photo albums, right? Or even worse, those drama queens in wheelchairs!! All their photos are just chair, chair, chair!!!!
That was all sarcasm, in case you didn’t get it. As you don’t seem to get much do you Frikkadilla.

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

Those of us who do show off our bags, and I’m talking about myself here do it for many reasons. I can’t speak for others but I’ll share just a few of mine.
• I want to raise awareness of something that affects over 100,000 people in the UK alone.
• Any illness to do with poo tends to be seen as embarrassing and taboo. This makes sufferers feel ashamed, isolated and depressed. I want to help end this taboo.
• I find it helps my recovery to share my story including photos of myself. I feel like I’m regaining control of my life after 13 years of illness, medication and surgeries.
• I am proud of my body and myself. I’ve been through hell and I refuse to let people like you body shame me.
• I want to show my kids that whatever humans look like, they are awesome. That I’m not ashamed of my imperfect body, because it’s perfect to me and they should love themselves no matter what society tells them.
• I make a difference to people’s lives by doing what I do. I get 50,000 views a month on this website! And I get hundreds of messages every month of people telling me that I am helping them through their journey. Who have you helped today Frikkadilla?
• Because I look fucking amazing! My size 16, scarred body with an ostomy may not to be your liking, but I think I look shit hot! (No pun intended!)
• I own my body, I don’t have to live by anyone else’s rules. I have full ownership and if I wish to share photos of it, I will without shame, bullying or fear.
• Because fuck you.

stoma ileostomy femininity black and white photography creative shoot

Thanks to everyone else on that mumsnet thread (that admin decided to pull because it was so shitty) who told Frikkadilla alllllllll the reasons why she was wrong/stupid/ablist/a cotton headed ninny muggins.

I read the post and was fuming but the responses reminded me that most people are awesome and just a few in this world who are dicks.
Sam xx

Riksack review – ostomy products

I reviewed the Riksack recently for Stomaworks, it’s a product to help users change an ostomy bag with less mess and more ease.

Take a look…

 

 

Sam xx

 

Disclaimer: I was not paid for this review but did receive the product for free.