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The body image advice I wish I could give my 18 year old self

5th March 2016/1 Comment/in Blog/by sam

Some friends and I joked recently about an upcoming 40th birthday, we laughed at fancy dress ideas of us all in black gowns with dark veils to mourn the loss of her youth (yes, we are all bitches!) but in reality we all said that we are SO much happier in ourselves than when we were 18. If I could have the body and face of an 18 year old and the mind of my 34 year old self then I could probably become some kind of evil genius and take over the whole world.

So it got me thinking about what I wish I had known when I was 18 regarding body image, because despite the fact that I am four sizes bigger now with saggy bits and wrinkled lines, with scars and a stoma, my self esteem and body confidence is 100 times that of my 18 year old self!

If I could jump in a time machine and go visit myself in 1999, I would give myself a big hug and tell me that I am enough. I would tell me that things are going to get better and that the past few years were shit but it wasn’t my fault.

I would tell myself that how I look bares no relevance to the type of person I am, that all the good things that will happen in life do not come from how I look, but how I am. That kindness, loyalty, caring, passion, silliness, excitement, hard work and fun are the things that people love about me and they don’t give a shit what the number in the back of my dress says.

I would teach me that the most wonderful power is that of self love, that when you are loving and accepting of your body, it feels bloody wonderful. It is like a shield to deflect all the bullshit that gets thrown at us, telling us how we should look and how we should dress. When you feel confident and happy, it stops other people being able to hurt you. Horrid words bounce off a lot easier when you aren’t nodding and agreeing with those aresholes.

I would tell me that though the whole world seems to have an opinion on my body, the only opinion that matters is mine so I need to stop worrying on what other people think of me and work on feeling the best I can about myself.

I would tell myself that in years to come, I will no longer be a size 8 but a size 16 and I will be a happier, more confident person and I would watch the surprise on my face when I realise this is completely true. I should enjoy my body so much more as I waste too much time worrying about how I look.

I would tell myself to celebrate my healthy body, to enjoy that I am well and strong because in the future I won’t be so lucky. I’d tell myself that our bodies are a miracle and the only one we have so look after it, be respectful of it, love it.

I asked my friend and all round badass Violet Fenn from Sex, Death, Rock n Roll what advice she would give to her 18 year old self.

“It belongs to YOU, not anyone else. You’re not as fat as you think you are and it doesn’t matter even if you ARE fat”

The thing I have learnt through my life is that we are all very self obsessed creatures, we worry that our peers are judging us when actually we are all so tied up in thinking about ourselves that we rarely give a shit what anyone else looks like. I see this now, I think people are looking at my ostomy bag, in reality, people don’t care! They are thinking about their own life and their own issues.

I would tell me to wear whatever the fuck I want, whether it is ‘in fashion’, ‘suits you’ ‘is appropriate’ or not. Because in years to come, I will look back on that white bikini top covered in daisies, huge, HUGE flares and foam Red or Dead platform sandals with fond memories.

Stand tall, this is a biggie. I grew several inches over the summer holiday one year and ended up taller than all the boys in my year and so I used to slump my shoulders and hunch down, wishing I could be a petite lady rather than a gallumping giraffe. STOP SLOUCHING! My height is awesome and gallumping giraffes are just as beautiful as petite sparrows.

Two of my friends told me about the advice they would give to themselves. “I would tell my 18 yr old self to be more confident in my body and be less self-conscious and to stop comparing myself to photoshopped celebs because they aren’t real” said Charlotte. Rebecca adds “Stop buying stupid women’s magazines!”

The overwhelming message when I ask any female friends this question is one of love, we all wish that we had wasted less time worrying about comparing ourselves to others, we all wish we could have had more confidence and less anxiety on fitting in.

I think it’s a great message for women at any age. Care less about other’s opinions, love yourself more and celebrate your uniqueness.

Sam x

He.

3rd March 2016/28 Comments/in Blog/by sam

It was 1995. I was 14. I met him in Meadowhall, he called out to me and said I was beautiful. I was flattered as he was older. If an older man thought I was attractive, then I must be pretty cool, right?

He caught my hand as I walked past him and his friends, pulling me towards him. I blushed and looked at the floor. He called me gorgeous and said all the things that men in movies say to women.

He asked for my number and I got flustered, I told him I was 14 and he couldn’t call my house as I’d get in bother with my mum and so he gave me his and told me to phone him.

I did phone him. That means I wanted it, doesn’t it? He said he was glad I called as he’d been thinking about me all day. I was flattered.

He asked me to his house, I asked if his mum would be in and he laughed and said he lived alone. He was 20, he said. I told him again I was 14 and he laughed and said I was really mature. I felt proud.

I got dressed up. I wore a short skirt, a top and my denim jacket. I put on make up. I want to look pretty for my date.

I went to his house alone. I wasn’t dragged or threatened. I’m a stupid girl, aren’t I. He had a room in a shared house and so we had to go to his bedroom. I thought we were going to talk.

He pushed me back on the bed, I panicked and tried to sit up. He tells me that I’m gorgeous. He says I came for sex. I’ve never had sex before, I snogged a boy once. I’m scared. I try to act like a grown up in a film, I toss my hair over my shoulder and laugh. I say let’s take it slowly. Let’s go out.

He gets angry. He says I’ve led him on. What am I? A dick tease? He thought I was a proper woman, not a stupid little girl. Why did I come there if it wasn’t for sex?

I’m scared. I start to cry and try to get off the bed but he pins me back. He says I’ll enjoy this. He is on top of me, pulling at his jeans as he pulls up my skirt. I freeze. I don’t fight.

Before anything else can happen, there’s a knock at his door, it opens and his housemate laughs and says he’s sorry to disturb us. I get up and run.

I run out of his room and down the stairs. I run out of the house and down the road. My chest hurts but I don’t stop running till I’m home.

I don’t tell anyone. I’m ashamed and blame myself.

I talked to a stranger. I phoned him. I wore a short skirt and lipstick. I went to his house. I went to his room. I didn’t fight.

I never knew I’d been sexually assaulted. Because I was taught that rape was a scary man in a mac who drags women off a street corner. I always believed that I’d made a huge mistake, I blamed myself entirely.

It was only recently that I could actually accept that this man had deliberately used me as a young girl. Isn’t that sad. I didn’t know. I thought it was just a rubbish experience that I had put myself through.

I read about Adam Johnson and that he has been found guilty of sexual activity with a child and hear he will be imprisoned and I sigh, thankful that life is getting better.

Then I read the comments in the news and on social media. That girl was asking for it. She got in his car because she wanted to. She was loving it. What was she wearing? What sort of girl is she? And I realise that we still live in a world where victims are blamed. Where children are used by adults yet we still look to the actions of the child.

Where thousands of girls in Rotherham were groomed and abused, brainwashed and hurt, yet society didn’t protect them because they weren’t women dragged off the street, screaming and fighting by a man in a dirty mac.

We need to open our eyes, see the many shades of assault, that it’s rarely black and white. That although no always means no, sometimes it’s too scary to utter that word because you’re frightened of what will happen.

For years, I carried this with me and always blamed myself for putting myself in that situation. I didn’t tell anyone as I was sure they’d say I was stupid.

Enough. I wasn’t to blame. I was a child taken advantage of by an adult.

Let’s speak out and end the cycle. Teach our children that they aren’t to blame and they can speak out.

No more silence.

If you need support, get in touch with The Survivors Trust.

Is ulcerative colitis contagious?

2nd March 2016/3 Comments/in Blog/by sam

I was googling something earlier and typed in ‘is ulcerative colitis’ and these were google’s suggestions of what I may be searching. I was truly shocked at the first one. Is Ulcerative Colitis contagious?

It saddened me to think that this is what people are thinking about people with IBD, that they are concerned that they could catch this from us. It shows to me that although awareness is improving massively, that there is still a lot of work to do.

For the record, Ulcerative Colitis and Crohns Disease are NOT CONTAGIOUS, you can’t catch this from being near to someone who has these diseases.

“Ulcerative Colitis is a condition that causes inflammation and ulceration of the inner lining of the rectum and colon (the large bowel). In UC, tiny ulcers develop on the surface of the lining and these may bleed and produce pus.

The inflammation usually begins in the rectum and lower colon, but it may affect the entire colon. If UC only affects the rectum, it is called proctitis, while if it affects the whole colon it may be called total colitis or pancolitis.

It’s one of the two main forms of Inflammatory Bowel Disease (IBD). The other is Crohn’s Disease.

Ulcerative Colitis is a chronic condition. This means that it is ongoing and life-long, although you may have periods of good health (remission), as well as times when symptoms are more active (relapses or flare-ups).” – Crohns and Colitis UK

There is still a huge taboo around bowel disorders, people are embarrassed to talk about any disease or symptoms that are about poo. This is something I fight against all the time and what formed my hashtag #StopPooBeingTaboo.

Yes, it can be embarrassing but I always think that poo is the great leveller, it is something that every single person on the planet does in one way or another. I do it in a bag, but that shouldn’t be a reason for me to be ashamed.

Your poo is a wonderful indicator of health and should be something that you notice. Changes in bowel habits, losing blood or mucus, loss of continence or drastic change in your poo can show that you have health issues. Seeing blood and having diarrhoea can be a sign of cancer, but it can also be all manner of health problems from the very minor to something more worrying. If you’ve had any of these things for a few weeks, you should absolutely see your GP. A lot of us ignore these signs because of embarrassment, but your doctor has seen more butts than you can imagine and will not be freaked out, I promise you!

The other suggestions from google were asking if UC is curable and deadly. The answers are no and sometimes. There is still no known cure, some people say that if you have the colon removed then you no longer can have Ulcerative Colitis and it is therefore a cure. I don’t subscribe to this thinking at all as UC is an auto-immune disease and it has effects on the rest of the body too, from issues with the skin and eyes to fatigue. I no longer have a colon, but I still class myself as having UC.

Is it deadly? Well, deadly is an emotive and strong word. Do people die from problems occurring from UC or from issues with surgery, yes, absolutely. I would probably word it as life threatening, it isn’t common, but there are risks to your life from medication, surgeries and symptoms.

It got me thinking about what other questions people may have about Ulcerative Colitis, ostomies or life with IBD. I am always happy to answer any questions, though obviously I am not a doctor and can only give you my opinion. If you are concerned about your own health, please do seek medical advice.

Sam xxx

Letter to my children

1st March 2016/4 Comments/in Blog/by sam

Hey bambinos,

It’s momma here, I thought I would pen you a note as you are all old enough to spend your days with your noses stuck to a phone/ipad/laptop and I know you sneak a peek at So Bad Ass from time to time.

Firstly (and always), mannnnn I love you guys so much. Like, my heart swells and twists and pumps a little harder when I think about you. You are my three proudest achievements, nothing I can do in my life will ever surpass the pride I feel when I know that a little bit of me and a little bit of dad managed to make these three human beings that are as mind blowingly awesome as you.

People talk about how I have coped with the past few years, all the surgeries, the hospital stays and the life changing additions and subtractions and I think they forget that you guys have been through it all too. My heart breaks when I think about how my illness has hurt you all. I am truly sorry that this has happened to us all, if I could have hidden it from you, I would. I can never give you back the past few years and all the time we have lost with me in bed, I can’t replace the time you have spent visiting me in hospital, the hours that slipped away as I rest and heal and sleep.

But I can thank you for it. Bambinos, you are the best. Thank you, thank you, thank you.

Thank you for taking everything on board, for being accepting and loving and caring.

Thank you for asking hilariously awkward questions about my stoma and butt (never stop!)

Thank you for not being embarrassed of me (even when your friends saw a photo of me in my knickers on the internet)

Thank you for the endless cups of tea.

Thank you for the hugs. Every one healed me a little faster.

Thank you for bringing your friends to see me in my sick bed at home and not being ashamed of me.

Thank you for giving up your free time to sit in bed with me watching terrible TV.

Thank you for making me laugh (even when it hurts my stitches) you three are the funniest human beings in the world.

Thank you for understanding.

Thank you for being you, you weird, bizarre, ridiculous, smart, funny, wonderful babies.

Thank you. Thank you. Thank you.

I wish none of this had happened and that we could just be a normal, happy family, but I can’t change it and I just have to hope that we can gain some positive things from it all. I know we are closer as a family, I know that your relationships with your dad have deepened so much and when I see you all together, it makes me smile.

I hope this situation has made you more open minded and accepting, I hope it has taught you patience and care and a knowledge to not judge a book by it’s cover. I hope you are tougher for coming through the past few years and that you will learn to be more resilient, stronger and always try to find the silver lining in any situation. (Even if that silver lining is a terrible joke, a meme about llamas or a memory of a good time).

It means so much to me that my bag doesn’t frighten or upset you, I know it was a shock in the early days, but I am so glad that you fully accept my ileostomy bag for what it is, a life saver. After surgery, when you were all a little scared to come to close incase you hurt me, it shook me, I worried you would never want to hug me again, now I love the fact that you barely think about my bag and aren’t afraid to touch it, talk about it and even warm your hands on a very cold nighttime walk on it!! (Hahaha)

I want you to know that I am so proud of you all and the way that you have dealt with everything. I know it was really scary that I had to go in to hospital again and it wasn’t nice to visit me and see all those tubes and wires everywhere, I know it was frightening when I wasn’t really with it because of all the medication. You guys were awesome though, you made me laugh when you wore the sick bowls as hats and made me wear one too. You brought me joy in those rubbish days when all I wanted was to be at home and every time I saw your faces, it reminded me to get strong quickly so I could get home to you all.

My bambinos, I know the past couple of months have been tough as hell. Between my surgery and recovery, our bereavement, mine and dad’s work, your school life and the most stressful house move known to man (we’re nearly there, I promise!!!), it has been really hard and I know you have all been freaking out. It makes me feel guilty to know you guys are stressed, I feel it is my job as a mum to protect you from stress, but unfortunately this is life and it’s a learning process for you to know that bad stuff happens, yup, even to good people. But that’s ok.

You don’t appreciate the great times without lulls of crapness, we have had more than our fair share of crap times, I know. But we also have something really special, we have us. Our family is awesome, me, dad and you three flipping rock, we are just the best and we have to celebrate that.

Let’s hope that after a bad start to the year, 2016 will be beautiful. I’m looking forward to our new home, to working in the allotment with you all, to parties and big dinners with the people we love, to your aunty, uncle and cousin visiting us from Australia, to a weekend in Manchester watching the Stone Roses, to visits to London, to galleries and exhibitions, walks in the park and cuddles on the sofa, to visits from nan and a house full of your friends, to hot tubs in the summer and ridiculous gatherings of our silly friends and especially to our family road trip to America!!

The thing I look forward to the most is seeing you lot grow and thrive, you are all getting so grown up and it is scary to think that you aren’t babies any more. Two of you are teens and one will start secondary school this year!! You are all dealing with your own struggles, and bambinos, I know it is SO HARD! You are filled with hormones and emotion and are learning who you are as people, you are becoming the best young men and women that I have ever met. Dad and I may be tough on you, we nag about work ethics and housework, manners and respect, it is only because we love you more than anything and we can see how close that horizon of adulthood is to you. We can see it nearing day by day that in no time at all you will be leaving school, going to uni, travelling the world and leaving home.

But let’s not rush it eh? Let’s enjoy our time together because after all the s**t (yes, mum swore) we have been through, we deserve something good.

I love you bambinos

Mum x

Jpouch removal – an explanation

1st March 2016/35 Comments/in Blog/by sam

I know that these surgical treatments can be super confusing, I have explained to lots of family and friends to help them understand what is happening and so thought I would explain on here too.

Firstly, what is a jpouch?

Well, you can have a good read of my explanation here, but in short, a jpouch (also called an Ileo-Anal Pouch or Ileo-Anal Anastomosis) is an internal pouch formed from the end of the small intestine that is attached inside to complete the gastro tube from mouth to butt. It is a ‘replacement’ for the large intestine and cannot be seen from the outside.

So this is what I had, I have no large intestine (colon) and my small intestine was formed into a pouch that was reattached to my bum. Jpouches are pretty rare, they are becoming more common though and are sometimes called a ‘reversal’ after having an ostomy.

So the surgery I had in January was to remove my jpouch, unfortunately for me, it wasn’t working. I had a lot of bouts of pouchitis (inflammation in the pouch) and issues with incontinence. Some people absolutely love their jpouch and find it gives them a whole new lease of life. For me, it wasn’t right and so the decision was made to remove it completely.

I had two options with my surgery, I could of opted for a temporary ostomy, where they would divert my small intestine away from the jpouch and out of a temporary loop ileostomy that would come out of my stomach. This would give my body a rest and allow the jpouch time off. I then could have a further surgery to reconnect it all again in the hope that the rest would have helped my jpouch and I would have returned to having everything connected internally.

Or my other option was the one I chose, I chose to have my jpouch removed completely along with my rectum and anus. So now, my digestive system starts at my mouth, goes down to my stomach and then into my small intestine. They formed a permanent end ileostomy on my stomach and that is the end of my system, I have no large intestine, no rectum and no anus.

This was major surgery and quite a risk but I was at the point where I didn’t want to save my pouch, I was scared that I could have the loop ostomy and rest my pouch and still end up having all the symptoms of pouchitis, I also couldn’t bare the thought of multiple surgeries.

This is a BIG choice to make and anyone facing it should speak to their doctors and get all information and support available to them. The bigger and permanent surgery was the right choice for me, I can only share my own experience but many other people make different options.

I feel a responsibility to try and share all choices when it comes to surgery and treatment as I know so many people read my blog and I would hate for anyone to not explore their own options. You should always speak at length with your own doctors, nurses and surgeons. The internet is a great place for information but it is not always helpful, I love that my little blog can be a tool in your kit to learn more about your illness, but make sure that no one place is your sole info source.

The jpouch didn’t work for me, but I am glad that I gave it a go as I think I would have always been wondering ‘what if’ if I didn’t. But it does work marvellously for so many!

I hope this has explained a little more about jpouch removal, as always, if you have any questions, hit me up! You can find me on Facebook and Twitter.

Phantom Rectum

29th February 2016/7 Comments/in Blog/by sam

Phantom Rectum. No, this isn’t a really great band name or a ghostly arsehole, but an actual thing that people without a butt sometimes have to deal with. Let me explain…

You know you hear about people who have had a limb amputated who have a feeling in said limb? It could be pain, itching or tingling. This could be due to damage to nerve endings or it could be activity within the brain as it struggles to deal with the fact that limb is no longer there. This phantom limb pain is very, very hard to treat.

So back to phantom rectum…

People with phantom rectum feel like they need to go to the toilet, even though they do not have a working rectum. This feeling can continue many years after surgery. Some people have found sitting on a toilet can help to relieve this feeling.

Some people also experience tingling, pressure, stinging, burning, pain, itching or aching. Despite the comedic name, it can actually be really miserable and affect self esteem, confidence and mental health in some people.

Sometimes phantom rectum syndrome is found in patients who still have a rectum, but don’t have it ‘connected’ as they have had ostomy surgery or other operations to divert stool away from it. They may experience phantom rectum because of a build up of mucus in the rectum. But it is also experienced by those who have had the rectum and anus removed completely, this could be because of scar tissue, nerve damage or a psychological effect.

I am only a few weeks out of surgery but I definitely get the old phantom rectum symptoms, I really do think mine is my brain telling my body to do something it can’t. For example, after a morning cup of coffee when you get ‘that’ urge, I still get that, but there is nothing down there! I can only poo through my stoma, I have no rectum or anus yet I get a real and true physical feeling that I need to pass stool through my butt. It is a very odd sensation though I am getting used to it. I do still have some pain there, but I think this is because I am still recovering and healing.

So what can you do?

If this is a problem for you, firstly, speak to your specialised nurse, GP or doctor to rule out any other issues. Self care involves sitting on the toilet, relaxation techniques, soothing skin with creams. Doctors may be able to prescribe medication or other therapies. Unfortunately, like Phantom Limb pain, it can be very difficult to treat.

For many people it is inconvenient and a bit annoying rather than life altering and I think I am lucky to be in that gang. Symptoms tend to resolve spontaneously in 50% of cases. Phantom rectum is relatively common but symptoms are usually mild and resolve in time. I refuse to be embarrassed by this though, and thought a blog post was in order to get people talking about their ghostly butt.

And for the record, I bagsy the name So Bad Ass and the Phantom Rectums for my band name!

Surviving and striving

28th February 2016/3 Comments/in Blog/by sam

Things have been tough for the past few years but specifically the past 3 months have been absolute shit.

I feel like I’ve been in a really dark time, between work, moving house, losing my grandfather, kids and my health, everything has been so overwhelming. Yet I’m starting to have hope that I’m coming through the darkness and like my favourite quote, I am remembering to turn on the light.

No matter how tough life is, you have to just keep getting up every morning, you have to just get through each day. There’s no real option is there? Everything that’s been going on has been so difficult, my last surgery was massive and such a bloody hard thing to come through. But I survived it.

And that got me thinking about surviving and striving. Survival is our basic instinct to get through shit times, it’s our fighting spirit, our adrenaline filled desire to live another day.

Surviving isn’t living though and it’s not enough for me. I want to strive to do more, I want to fill my life with excitement, happiness, laughter and experiences. And the thing that stops us from striving for what we want is fear.

I have notoriously itchy feet, I am forever searching for the next adventure, the next job, the next event, the next wonder. That’s not to say that I don’t appreciate what I have! I relish in my wonderful family, my exquisite friends and I find joy in pretty much every day I live.

But I think throughout my life fear has held me back. The lack of a father made me fearful of not being loved. I have a huge fear of disappointing those who I love, and sometimes that stops me from being myself.

I have a fear that people will think I’m stupid because I didn’t go to college or university and that becomes a chip on my shoulder that is forever with me and stops me applying for jobs, it stops me speaking to people I think are smarter than myself.

I have a fear of heights that stops me from doing the exciting things my husband and kids want to do. That teamed with my fear of vomiting in front of others means scary rides, roller coasters, sky diving, all these exciting daredevil things, are a complete no no!

But overcoming my surgeries, surviving 4 operations in 3 years, standing tall after years of health horrors and anxiety filled mind fucks have actually taught me something. It’s taught me that I have faced and overcome things that would break some people.

It’s taught me that I’m braver than I believe, stronger that I could imagine and a tough old badass.

It’s taught me that if I can deal with the shit hand I have been dealt, then I have no need to fear all the other stuff. It’s made me want to strive.

So this year (after full recovery, don’t have a fit Timm!) I am going to, more than ever, be brave. I’m going to strive to do more things that scare me, to enjoy more, to try new things and to embrace every new experience that comes my way.

This isn’t about being a daredevil. But about me stepping out of my own shadow and enjoying life. Because I could have died. I could not be here right now and I need to celebrate that I am.

I’m going to fully immerse myself in my new allotment, I’m going to try some classes, go to more galleries, find events that are interesting and try them. I’m going to say ‘no’ less and ‘yes’ more. I’m going to read more, go out more, call friends more. I’m going to be a better mother, a more patient person. I’m going to try and be the fullest version of myself that I can. No regrets.

I’m not just going to survive. I’m going to strive.

Sam xx

How we look and how we feel

26th February 2016/8 Comments/in Blog/by sam

Before 2013, I didn’t have the best body confidence. I was a size 16 with stretch marks and wobbly bits, I had carried, birthed and fed three big babies (9lb9oz, 8lb1oz, 11lb) with one c-section to boot. Before I had kids, I was a size 8, after my first I was a size 16 and that weight never really shifted.

I was constantly dieting, I would lose weight but then gain it all back again plus a little more. I hated my body, I thought it was flabby and ugly, it wibbled and wobbled and definitely didn’t look like the women in magazines. After years of this, it started to piss me off and I sort to find better role models, I stopped buying crappy women’s weekly mags whose aim in life is to point out the flaws of women, I started to think about the qualities that were important in life, rather than the physical appearance of a person.

But it was hard, and mainly I just felt a bit sad and disappointed in my body. I have been a size 16 for 15 years now and I have learnt that society views me as fat. I can’t always buy clothes I want as shops either don’t go up to a 16 or they don’t have them in stock. I know that on the BMI scale I am in the upper part of overweight and when I go out in town, I see people judging me. But I carried on, with the ever changing diet and dreams of skinniness.

And then in September 2013, I got so ill with Ulcerative Colitis that I had to have surgery to remove my colon and give me an ileostomy bag and everything changed. All of a sudden my focus wasn’t on the number in the back of my dress, or the size of my backside, it was on survival and recovery, of getting over the surgery and learning to live with a bag of poo on my tummy. All of a sudden, all those worries over calories and cellulite, fat bits and wobbly arses seemed silly.

I have been looking back at photographs of myself and I realise that the things I look at aren’t how big my thighs are, or my stretch marks but that I am healthy and happy. Even though these images were taken during the 10 years I had with Ulcerative Colitis, they were also during remission periods. I look at these now compared to my scarred and stoma’d stomach now and wish I had appreciated my body a little more!

The next photos were taken whilst I had my first ostomy, it had been a huge shock to me but I was happy to be feeling well. I went travelling three months after surgery to Vietnam and Australia, it was hard work but it was so important to me to take control of my life and not let my stoma stop me.

During this time in my life I just felt so happy to be alive! I started to love my body, I celebrated that my body had survived the surgery and began to love myself. I stopped giving a shit about my cellulite and I wasn’t concerned about my stretch marks, I was just grateful to have a body that worked.

The next shots are from after my reversal, I no longer had my ileostomy and had my jpouch, but the jpouch wasn’t working so well. I started to feel panic about my body failing me again. Thinking about my body physically stopped being about the parts society tells me are wrong, my weight, my scars, it was about my health. My concern was that my pouch wasn’t working, that I was having accidents and that I was going to have to have more surgery.

Honestly, it was a sad time and I think you can see that in these photos. I had accepted my body for it’s physical appearance but my health worries were a very difficult and heartbreaking time. I regretted my decision to have the jpouch and I was sick and tired of being sick and tired.

And we come to now… I am 6 weeks post op and I now have a permanent ileostomy, I have a bag for life! How do I feel now? To be honest, I think it is just too early to say, I am relieved to not have pouchitis any more, I am happy that I don’t shit myself, but the bag is something I still need to get used to.

I am being careful not to put my stress and unhappiness onto my stoma.

The past few months have been the hardest of my whole life, I had rejection over my book, I am moving house and have had 6 months of stress regarding this move, my grandfather passed away in January, I am feeling insecure in my writing and work and then I had major surgery!!!

I have so much on right now and life is very overwhelming, I take on so much and I think I need to step back from some things that aren’t vital. I am a parent governor, I run the South Yorkshire Crohns and Colitis group, I work for lots of different people as a freelance writer and life is hectic. My family is going through everything I am and my kids are stressed out, I am a swan, I am calm on the surface but paddling like fuck under the water.

So with all of this going on, I don’t want to put my emotional state solely on my stoma. I am struggling, I feel anxious, overwhelmed and ever so sad, but with so much going on, I think I need to give myself a break.

What I refuse to do now though is to berate my body, to feel bad about it. I refuse to diet, I refuse to conform to how society wants me to look. Everything I do regarding my body is going to be what I want, fuck everyone else. This is MY body and it has gone through a lot, I am going to celebrate the fact that despite 4 surgeries in 3 years, I am still standing.

So #effyourbeautystandards and rejoice that we are here, we are unique, we are beautiful. And I don’t need to be a white, size 6, able bodied 20 year old to be fucking awesome.

Clothes and Ostomies

25th February 2016/12 Comments/in Blog/by sam

One of the most common questions I get sent to me is about what clothes to wear when you have an ostomy. People asking if they can ever wear ‘normal’ clothes again, how to hide your bag, what underwear is best and how to still feel like themselves.

My answer is usually that you can wear anything you like! There are no hard and fast rules, it is about personal preference, some people don’t mind if you can see the bag, others want to mask it. I think the only thing that affects my clothes choices is comfort. I want to wear things that I am comfortable in and feel amazing. Amazing for me feels like wearing something that I love, that also fits well around my stoma and means I can go about my day without paying too much attention to my ostomy bag.

Now I am a permanent ostomate and will have this bag forever, it has meant a reshuffle of my wardrobe and some new clothes. I started by going through all my current clothes and chucking out EVERYTHING that doesn’t fit well around my stoma, this was pretty depressing and I have to admit, I had a little cry.

It all felt so FINAL to give away my favourite trousers. But those fave trews have a waistband that sit directly on top of my stoma, I tried wiggling them lower or pulling them over the top but neither worked. I had to accept that my stoma ain’t moving so what is the point in keeping the trousers?

Then I went shopping! YEY! Last time I had a stoma, I found that maternity trousers are awesome for life with an ostomy, especially those that have the stretchy panel attached to them and so I hit H&M and bought two pairs of maternity jeans and a pair of maternity leggings. I also find that a slightly longer than usual top makes me feel tons more comfortable and so searched for tops that made me happy.

So this was my going shopping outfit. A long stripy skirt, the waistband sits above my stoma and a longer black top with a scarf. It’s super comfy without being too casual and if you’re concerned about showing the bulge, the scarf hides everything.

Top – George at Asda

Skirt and scarf – Primark

Onto my bought items, this is maternity jeans and a tight fitting top that is just a bit longer than usual. I don’t mind if the outline of my bag shows and I am happy to wear tight fitting clothes. I know some people are more self conscious but I find that no one cares! And if anyone notices, I am happy to tell them about my bag.

You can see the panel and wear it sits with regard to my ileostomy bag. I love that it keeps everything tucked against my body and it feels safe. You can also see it from the side.

MAMA super skinny jeans – H&M £24.99

Conscious Long Sleeve Jersey top – H&M £7.99

I also went in for some maternity black leggings. Leggings are great for going under anything and these make me feel the bag is kept tucked against my body so when I wear a dress or top over, it’s not flapping about!

MAMA Leggings H&M £7.99

Outfit three was more maternity jeans, black this time and a loose fitting shirt. I love this outfit as I just feel like myself in it, I can see myself wearing it around the house or going out with the kids. It’s so comfortable too, I hate wearing joggers, I feel like Waynetta Slob in them and so a comfy, relaxed outfit that I feel like ‘me’ in is just brill. Again, it’s easy to shove a scarf over for those times when your bag fills up instantly and you look like you’re smuggling a bag of potatoes…

MAMA jeans H&M – £24.99

Cotton Shirt H&M – £14.99

Scarf Primark – £3

This next outfit made me smile, it is a dress I bought pre surgery and I wondered how it would fit me now. I teamed it with my new black maternity jeans and pumps and I felt like me again!

Dress M&S (About) £30

So there we go, my first post ostomy shopping trip. It may just seem like a couple of pairs of jeans but to me it was the start of getting back to feeling like myself. I have spent weeks recovering in pyjamas and to now be back in ‘human’ clothes feels amazing.

I really enjoyed sharing my clothes ideas and after receiving a few emails recently from women who feel they can’t wear what they want I think I may share some other fashion posts again. I am a size 16, 34 year old woman, I know I am no clothes horse but I love fashion and I want other people with an ostomy to know that no matter your condition, your size or your age, you can wear whatever the f**k you want. Fashion is about fun and expression, the only person it matters to whether your clothes look good is you.

Your style and fashion with an ostomy may have to adapt, you might have to think twice about where that waistband sits, but it is not the end of the world and you can still look and feel like yourself again. You may want to flaunt your bag, hide it or care neither way, but there is a style of clothes that will fit you and make you feel awesome again. You just need to look for it.

Sam xx

Scope’s #EndTheAwkward Romance Classics

13th February 2016/0 Comments/in Blog/by sam

It’s almost Valentine’s Day and the fabulous Scope are all about the romance. As part of their End The Awkward campaign, they’ve kicked off the most romantic time of the year by releasing swoonsome recreations of iconic Mills & Boon book covers – starring disabled people.

They created Scope Romance Classics in response to their new polling that shows just 6% of people in the UK have been on a date with a disabled person they met through an online dating site or app like Tinder. This is because too often people don’t see disabled people in romantic situations. So they made them the romantic leads for Valentine’s Day.

I love it! I love the whole End The Awkward campaign that aims to normalise disability by showing people with disabilities in everyday situations in the media. On Valentine’s Day, it is a great time to think about everyone in society, not just able bodied. How often do you see people with disability in romantic situations in the media?

I was really proud to be part of Scope’s A-Z of Sex and Disability last year which aimed to share the experiences of people, educate and support those struggling with their own sexuality due to illness, accident or disability.

For more information on Scope and End The Awkward, head over to their website now.

The body image advice I wish I could give my 18 year old self

He.

Is ulcerative colitis contagious?

Letter to my children

Jpouch removal – an explanation

Phantom Rectum

Surviving and striving

How we look and how we feel

Clothes and Ostomies

Scope’s #EndTheAwkward Romance Classics

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