Next surgery date

/2 Comments/in /by

My next surgery will be next Monday, the 12th March and it’s for the hernia above my stoma from my old stoma site.

Im feeling really nervous for this one, I know it’s not the biggest or longest op I’ve had by far! But I think because I had mentally prepared myself for no more surgeries this one is freaking me out a bit!

I think my main concern is that the hernia is so close to my stoma that it’s a worry that if it’s too close, they may have to resite my stoma which is obviously a much bigger op with a tougher recovery.

The scans we are going off are from last summer and I know the hernia is much much worse than then.  So I suppose I’m just really apprehensive that going into a simple op may mean I wake up with a much harder surgery to recover from.

I’ll be heading in first thing Monday morning and it will either be a 1-2 night stay or a bit longer if the surgery is harder. And then home for a few weeks rest and recovery.

Work have been fantastic and have told me to take as long as I need, they are really supportive and it’s lovely as this is my first op where I’ve had sick pay!! After all my other ops we knew that it would be weeks and weeks of me earning nothing which obviously puts so much more pressure on us as a family and so it’s great to know that the pressure is off and I can actually concentrate on getting better without the voice in my ear telling me to get back to work and earn some cash!

Going into any surgery is scary, and I need to try and calm my nerves and ignore the dread in my stomach that something is going to go wrong.

Its not great timing, Ell starts mock GCSEs on the same day and I’m hoping that they can concentrate on their exams and not worry too much about me. The kids hate me being in hospital and I know they’ll be stressed next week. I hate that I cause them hurt and fear but we’ve talked about it and they’re feeling as ok as they can.

So I will let you know how things go next week!!

Thanks for all the messages of support

 

Sam xx

When your child is gay…

/7 Comments/in /by

Last year my child told us they were pan-sexual.

At the time, though it was a surprise, I felt no different, I was pleased they knew they could talk to me and I was happy to know they felt comfortable enough to be themselves in a difficult and sometimes prejudiced world, but honestly? My thought process didn’t go much further than that.

Over a year on I thought I’d share my feelings about having a gay child and how my feelings have changed.

Well, one thing has been them telling me they were non-binary. I’ll be totally honest here, I really wasnt too sure what that meant. But after some googling and talking to my child about it, I have a much better understanding.

Theyre now 15 (how has this happened so quickly?! I’m sure I was changing nappies and freaking them out by watching Death Becomes Her only yesterday!!!) They prefer the pronouns they and them and sometimes I struggle with this. Not so much with the they/them but more when I’m describing them as my child.

Daughter or son flows off my tongue so much easier than child, I sometimes feel child or kid sounds less emotional, if that makes sense? I feel a bit like a Victorian mother saying “my child has done….”

Our relationship has never been closer, and the same goes with my husband. They share lots of things about their life (as much as any 15 year old does!) and we talk about anything and everything. (Including an in depth discussion about how a threesome with two men and one woman actually works!)

The biggest change for me has been how protective I feel.  Of course I am momma bear with all my kids, but it’s opened my eyes to the amount of bigotry that is all around me and I want to stand in front of them and protect them from ever hearing or seeing these things. I want to wrap a big blanket around us both and bat away any horrid or stupid or ignorant comments.

I know I can’t do this. And it hurts me to my soul.

I know they will face ignorant and hateful people throughout their life. I know people who don’t understand or don’t want to understand will push them away. I know that they will hurt sometimes.

I also know that those bigots will miss out on knowing one of the most amazing human beings on earth. My child is so kind, loving, funny, deep, silly, loyal, sensitive and fucking awesome.

Seriously, they’re my hero and make me want to be a better person every day.

I see things I didn’t see before. I see more of the comments on social media, not so much that they’re openly homophobic or hateful, more the snide comments that suggest anyone who isn’t cis gender is something of an attention seeker. Or that they’re something to be joked about and mocked. The comments or images where gender is questioned or laughed at.

Ive also opened myself up to a whole new world (for me) of language and understanding of gender and sexuality, I’m learning new terms and gaining a better understanding. This can be a bit scary, I feel afraid as a heterosexual cis gender woman to ask questions sometimes.

I’m afraid to say the wrong thing and upset someone, I don’t want to look like a tourist! But I think it’s important for me to educate myself so I can understand my child.

I even worry about posting this. I don’t want to put my voice above my child’s but I have always talked about being a mum on this blog and it seems worse to not talk about this than to be open. As with all my posts about my kids, they get to read and veto anything they’d rather I didn’t say publicly though.

Though my instinct is to stand in front of my child to fend off any negativity, I think the thing I’ve learnt is that I can’t do that. But I can stand right beside them, with my hand on their shoulder and my love in their heart so they know whatever they face in life, momma bear will always be right with them.

 

Love Sam xx

 

I did something stupid. But worthwhile

/6 Comments/in /by

So today I did something stupid.

After work I decided to take the dogs out and go sledging! It’s not a good idea for me at the minute!! I am waiting for hernia surgery and my fatigue is out of hand.

But as I sat looking out of the window at the snow, knowing my husband and kid were out having fun, I just felt really sad that I was indoors. I thought about how in two weeks I’ll be having surgery and then for weeks after I won’t be able to do much, I thought about how it feels to not be able to go out and have fun and I thought ‘FUCK IT!’

Sometimes we have to make decisions to take risks, to do things that aren’t the wisest, to live in the present and have fun.

I wrapped up and went out and I screamed my way down snowy hills laughing till I cried, I went head first feeling like I was in the olympics, I felt the wind in my face and the fear of crashing into the icy river at the bottom, I felt alive.

I only had a couple of goes and then we came back home and I’m snuggled in bed with a hot water bottle  and painkillers.

My tummy hurts and my hernia is throbbing, I can’t get warm and the sensible grown up part of me is shaking her head and rolling her eyes at my silliness.

But, man!!! What is life without silliness?

I often miss my giddy, daft side, the side that would head out on a night out not know where I’d end up (once it was on a bus to Hull, another time to a strip club doing shots with the dancer!!) I miss adventure, I miss walking for miles, I miss being pain free and the only tiredness I felt being caused by a hangover or a hike!

So often I spend my time in bed, my joints are so painful, the fatigue is soul destroying, the hernias are painful and cause bag leaks and burning skin. The depression stole months from me, I hid away in my room because it was the only place I felt safe.

So yes, today I did something stupid. But it was SO worthwhile.

Love Sam xxx

 

Charity event with Ian Harding

/0 Comments/in /by
Read more

This boy

/4 Comments/in /by

This boy

We never had wedding vows of in sickness and in health.  Instead our Elvis minister asked us if we swore never to leave each others blue suede shoes out in the rain.

viva las vegas wedding

But he’s aways there by my side.

He puts my tablets in shot glasses with little stickers with times written on them.

He kisses me and holds me close when I cry through pain, frustration or sadness.

He goes to all my hospital appointments with me because he knows I forget what they’ve said as soon as I walk out.

He doesn’t mind when I’m too tired to do anything but lay in bed. And will lay right there with me.

sam and timm cleasby

He runs me a bath, sits on the floor and washes me when it’s all just too much.

He makes me laugh when I am sad.

He comes to my events to support me and never complains about the hours waiting for me.

He works so damn hard to make sure our family has all we need.

Through every surgery he is there.

Through every recovery, he does it all.

Through the toughest of times, he sticks fast by my side.

sam and timm cleasby

Through the darkest of times, he sits under a duvet cave with me whispering and kissing.

He washes the sheets and my clothes when my bag leaks.

He helps me do my hair when my arms don’t have the strength.

He loves me even when I don’t feel worthy of love.

He wants me to be the best version of me that I can.

Wedding renewal

He runs around Ikea with me playing and making fake photo shoots.

He brings McDonald’s and makes a picnic on our bed with all the kids when I’m too sick and tired to cook.

He tells me I’m beautiful even when my hair is falling out and I’m too tired to shower and I’m wearing pyjamas.

He cries with me and tells me that no, it’s not fucking fair.

Love and relationships

He listens to my crazy plans and never tells m they’re crazy, he tells me to get planning.

At night when I can’t sleep, he gives me his hand so I can lay with my fingers on the pulse in his wrist because though it’s batty, he knows it calms me down.

When I’m too tired to go out on Valentines Day, he orders room service and beers and we have them in bed.

He once stole a wheelchair and kidnapped my from hospital so I could sit with the sun on my face.

Sam Cleasby Timm Cleasby

This year, we will celebrate being together for 20 years, and though I never thought it possible, I love him more every day.

This boy. He is my everything.

And he’s never, ever left my blue suede shoes out in the rain.

 

Sam xx

She conquered her demons and wore her scars like wings

/1 Comment/in /by

I saw this quote today and it felt very apt. It’s been a rough old road at times but I finally feel like I’m conquering those demons and feeling pride in my scarred body.

Conquered demons scars like wings

 

Chronic illness has taken it’s toll on me over the years, there are times when I just feel so defeated. I have this happy and positive online persona and in real life I always try and see the best in any situation but sometimes my heart breaks at the life that has been thrust upon me.

I was once asked at an event, if I could wave a wand and make my illness all go away, would I?

I felt a huge pressure to say no, that I would keep the life I have, but in reality, I would do it in a heartbeat.

sam cleasby so bad ass IBD blogger and writer

I know that my illness and what I’ve gone through has made me the person I am, it’s shown me I’m stronger than I ever imagined, it’s brought a bond with friends and family that can’t be surpassed and it’s also shown me other people’s true colours.

Its led me to having a blog that’s been read almost 3 million times (!) and has given me some amazing opportunities to be on TV, the radio anc in newspapers and magazines all over the world. I’ve spoken at events the length and breadth of the UK and travelled to Spain and soon Germany.

sam cleasby public speaker

Its brought new people into my life who I’d never have met otherwise. I’ve been to parliament. It led me to a job with Scope that I adore. I’ve met Philip Schofield for Christ’s sake!!!

But it has stolen so much from me.

It robbed me of precious hours, days and weeks with my babies. It’s taken it’s toll on my relationship. It forced me into missing days out, nights with the girls, holidays, events. It took my career.

It made me weak and fearful and exhausted. It stole a part of me, both physically and emotionally. It hardened me to the fuckwittery of others (wait, that’s actually a good thing!) but it also toughened my armour and made me push people away.

sam cleasby ibd and children

 

It caused my babies to be stressed and scared, making them fearful yet far too familiar with hospitals. It made them into young carers and forced them to face worries way beyond their tender years.

But we are here and we still stand strong.

Those feelings of guilt, fear, depression, anxiety, anger and a deep sadness that took a tight grip on my soul, all those feelings still linger yet they don’t have a hold over me.

My body that changed so much bears the scars of multiple surgeries but you know, I kind of love it. My scars show my journey, they are the proof that I survived. My ostomy bag is not worn with shame but pride and love and hope.

My demons will be waiting in the shadows for the rest of my life, but I’m finally feeling strong enough to face them, to fight them and to win.

Much love

 

Sam xx

It’s #TimeToTalk

/0 Comments/in /by

Today is #TimeeToTalk day, a day of awareness of mental health challenges.

It’s a day that brings the nation together to get talking and break the silence around mental health problems.

“Too often, people who experience a mental health problem are also expected to take the lead on talking about mental health in the wider sense. Time to Talk Day encourages everyone to talk about mental health.

Mental health problems affect one in four of us yet people are still afraid to talk about it. For people with mental health problems not being able to talk about it can be one of the worst parts of the illness.

So by getting people talking about mental health we can break down stereotypes, improve relationships, aid recovery and take the stigma out of something that affects us all.”

family photo shoot with teenagers in Sheffield urban kelham island

Ive been quite open and honest about my struggles with mental health, though at times it was really hard to find the words.

After years of chronic illness and surgeries, my mental health took a real battering. I knew it and I tried seeking help through some talking therapy, this did help me sort out a lot of things from my childhood and past and I thought I was getting better.

Then in August last year, I fell into a pit. It snuck up on me until I realised that I was not well.  I am in two minds whether to admit this but I felt so low that I considered ways to kill myself.

I felt worthless. Worse than worthless, I felt like a burden to everyone around me, I felt that my very being made life worse for all the people I love. I felt like ending it all was the wisest decision.

What is scary now is that at that time, this felt like a totally rational and sensible decision. I remember googling ‘can you be suicidal and not depressed?’ as I really couldn’t see that these weren’t normal feelings.

It actually scares me to think back on this time, I could see no light, I felt stuck in this quicksand that pulled me down and held me fast but still allowed my head to be up in the real world so I could see everyone around me feeling happy and living wonderful lives.

I thought about running away from home a lot, about just packing a bag and disappearing, I fantasised about just going and leaving everything behind.  And then I felt extreme guilt about thinking about leaving my beautiful family.

I was in a cycle of bad thoughts and guilt.

It came to a head one day when it all came tumbling out, I cried and screamed and shouted at Timm. I lost it, pushing him away and telling him the horrible things that were going through my head.

I had 100% convinced myself that he was having an affair. I couldn’t imagine why he would want to be with me and I was so paranoid and lost that it became the truth.

I feel so sad now thinking back on this, I barely recognise myself in my own words.

The one thing that kept me going was my kids, my amazing children who I knew I would hurt more than I was hurting myself if I wasn’t here.

I read a quote once that said:

Suicide doesn’t take away the pain, it just passes it on to someone else.

And that quote kept me going.

I eventually went to the doctors and I was faced with the most caring and compassionate GP who put all my fears to one side. He took his time and talked through everything, he listened and told me it was all ok. That the feelings I was having were frightening but that lots of people have them.

He told me that my thoughts of running away or ending it were my brain going through options but the fact that I’d made the decision to be there in his office showed that I had chosen the right option.

I started on antidepressants last year and the difference is amazing. This imbalance in my head was addressed and slowly, those feeling ebbed away.

There was no switch, no instant recovery. But one day I realised that I hadn’t had bad thoughts for a few days. My GP said it’s like the sun rising in the morning, if you keep watch it takes so long, but if you turn away to make a brew, you come back and realise that the sun is here.

Im still taking my tablets, they have been life changing but the other thing that has helped so much is opening up and talking to the people I love.

Its hard to admit you’re struggling, but my husband and my close friends listened, loved and didn’t judge and I’m forever grateful.

So there we go, today was my #timetotalk I hope you can find someone to talk to if you are having a tough time right now.

Thanks for taking the time to read

sam xx

 

Why I’m a proud flasher

/7 Comments/in /by

Don’t worry, I don’t have a mac and follow people around at night flashing my boobies. But I am a very proud flasher of my osteomy bag and here’s why…

I have had many comments about the images I share of my ileostomy bag, most of them are positive but I get the occasional one that says ‘why are you doing this? We don’t want to see it! Is nothing private any more? Won’t somebody think of the children?!!!’

OK, I may have made the last one up! But the point is that people do seem offended by the fact that I happily flash my bag, and these comments always seem to come from a person in the position of priviledge who have never had to face the scary event of surgery to remove your bowel and being fitted with a colostomy or ileostomy bag.

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

So why do I do it?

I remember sitting in a hospital bed, having just been told that I had to have surgery and they were going to remove my entire large intestine and I would have a stoma, they were going to give me an ileostomy bag and I was in tears.  I was terrified, I couldn’t imagine how my life would be afterwards and though I was in part relieved to see an end to the severe and excrutiating pain, diarrhoea, accidents and misery of ulcerative colitis, I was also devastated.

I thought my life would be over, how would I ever feel beautiful or sexy again? What would my husband think of my new body? Would I ever wear a bikini again? Would my new body inspire disgust from others? Would I be able to love myself?  I sat in bed weeping and I felt so lonely.

I googled ostomy bags and it came up with frightening, medical images of sick, old people in bed wearing huge bags on their stomachs looking sad and frail.  And I felt numb.  Was this the end of life as I knew it?  This was in 2013 and there were no UK bloggers talking about this, no one sharing their images of a happy life, no positive, joyful photos, just misery and illness.

stoma ileostomy femininity black and white photography creative shoot #stomaselfie sam cleasby

And that is why I started this blog. And that is why I am proud to flash my bag.

You see, though life can still be tough now, my ostomy bag changed my life for the better in so many ways, it gave me back a sense of control over my body, it made me feel well again, it stopped the pain and the isolation that 9 years of ulcerative colitis had caused.  And once I had the surgery, I realised that rather than fear and sadness, when I looked at my bag and my body I felt pride! I felt strong and powerful, I felt like I had dealt with a huge surgery and my body was still standing.

I realised that I never wanted another person to sit alone, frightened and crying in a hospital bed, wondering what their life would hold for them with a stoma.  I wanted to be the image that came up when they googled that showed them happiness, a fresh start, a normal life, damn it an EXTRAORDINARY life!

sam cleasby blogger ostomy ibd woman with a colostomy ileostomy bag stoma

I wanted to be a small ray of light in an otherwise frightening time that could show someone that life with an ostomy bag is a positive and wonderful thing.  That they could be what they wanted to be with their bag, that it wasn’t something to be feared or disgusted by, but to be proud of.

I wanted to show the world that my ostomy bag saved my life and that I am proud of it and myself.

I wanted to show that I can feel beautiful, sexy, strong, powerful and like ME.

I will never stop flashing my bag because every time I do, I get messages from people thanking me, saying that it helps to see others with a bag, that it inspires them to be proud of their bodies, that even if they don’t want to show their own bag, that they share my images to explain to their friends and family what they have.

ileostomy bag and fashion swimwear

Should everyone flash their bag?

No, of course not! It is a totally private and personal decision, I am happy to flash my bag but that doesn’t mean that everyone should.  I hope that showing my bag off will help those people who want to wear a bikini on a beach to do it with pride, to show them not to be scared of being themselves.  But some people are very private and don’t want to have their ostomy bag on show and their privacy is as important as my desire to flash mine.

sam cleasby chicken keeping allotments kiveton sheffield

The stigma around talking about poo is part of day to day life, generally if we talk about toilet habits, it is done by making fun about it.  We find it hard to have an honest and open conversation about our bowels and that needs to change.  This fear of talking bums stops people from accessing medical help when they have bowel issues, it stops them from asking for help and that can have a hugely negative effect on our health.

The aim of my blog has always been to help others, to stop poo being taboo and to raise awareness of IBD, Crohns, Colitis, Ostomy bags and invisible impairments as a whole.  If I have to continue flashing this scarred body of mine and showing off my ostomy bag to keep the conversation going then I will do this till the day I die.

Sam Cleasby blogger ostomy ileostomy colostomy stoma

I am a flasher and proud!

 

Love Sam xx

On BBC Breakfast talking about Blue Badges

/4 Comments/in /by

So there has been an announcement that Blue Badge rules are going to be looked at to make it easier for people with an invisible disability to get them.

I think this is great news, and Scope have said it is “A victory for common sense.”

sam cleasby at bbc breakfast blue badges invisible disability

I was invited onto the BBC Breakfast couch on Sunday 21st January to talk about my experiences of the blue badge and why I think it is a good idea.  It was an honour to go on BBC Breakfast again, I was there a couple of years ago talking about accessible toilets and so it was great to be back!

make up room bbc breakfast backstage at bbc breakfast sam cleasby blogger bbc media city

Timm came with me and filmed some of the day and put together a great video, apologies for the quality of the interview itself as we had to use one recorded by a family member off her TV!

Take a look here

 

If you want to have your say then please take part in the Blue Badge consultation, you need to do this before the 18th March.

For more support on this matter, you can head over to the Scope Community and chat with other members about how this will affect you.

You can chat with me about this on my facebook page or on twitter.

 

Sam xx

HUGE news!

/3 Comments/in /by

I have been desperate to share this news for a few months but had to wait for everything to be confirmed, but I have some HUGE news!

In February 2018 I will be traveling to Munich, Germany and co-hosting an amazing event to raise awareness and money for Crohns and Colitis UK and Lupus Foundation with none other than Hollywood actor Ian Harding from Pretty Little Liars!!

You can find more information and buy tickets here.

ian harding lupus sam cleasby crohns and colitis uk

Just in case you can’t read German, here is a translation from the website:

“Autoimmune diseases Lupus and Crohn’s disease Crohn’s are a treacherous affair: often doesn’t show the suffering people go through, and yet a diagnosis has serious consequences for life.

To raise public awareness of the incurable disease, actor Ian Harding – coming known from the hit series of Pretty Little Liars and multiple winner of the teen choice awards – and the renowned British Blogger Sam Cleasby host an exclusive benefit concert in Munich.

Together with Cleasby, Harding leads through the program of the evening. Afterwards, you can meet Harding and Cleasby personally, when they will be signing event-designed T-Shirts, posters and flyers to  all concertgoers.

The proceeds of the event go to the organisations Lupus Foundation of America and Crohn’s and Colitis UK, whose Ambassadors are Harding and Cleasby.

The Bands Splashing Hill, Liann and a third act which is yet to be announced provide the musical accompaniment. Supports the event is through the European Crohn’s and Colitis Foundation ECCS, by the Director of the Crohn’s and Colitis Centre in Munich, Prof. Dr. med. Thomas Ochsenkühn. This serves the medical backgrounds of the events, which will also be addressed in the context of a discussion panel with Cleasby and Harding.

Regular updates to the event can be found on the Facebook page of splashing Hill.”

ian harding lupus sam cleasby crohns and colitis uk

I am over the moon and so proud to be part of this awesome event and can’t wait to team up with Ian and give a great show! It would be amazing to see some of my european readers over there, it’s going to be a blast!

I have done talks around the world, but this will be my first time speaking in Germany and so I am really excited to get to hang out and get to know some badasses from around Europe.  I am always so proud to be asked to speak and this will be my first time hosting an event, so I just hope I do you all proud.

I hope to see you there!

Sam