ostomy Archives - Page 5 of 6

#stomaselfie – going viral again!

12th April 2015/40 Comments/in Blog/by sam

I am very proud of the photographs I had done with my stoma and ileostomy bag and last week, they went viral! Appearing in the Metro, Daily Mirror, BT online and The Independent as well as media outlets around the world including lots in Scandinavia, my photos went a little crazy under the hashtag #stomaselfie.

The purpose of the photographs were to lift the veil, so to speak, on what is under the ileostomy bag. When I was in hospital before my surgery to remove my colon, I googled images of stomas and I was horrified, all the images were very medical, many stomas that were having issues with prolapse or infection and my fear was intensified.

What I wanted was to show stomas in a way I hadn’t seen before. To show that my stoma didn’t remove me of my femininity, sexuality or who I was. I wanted to show the world that it was nothing to be ashamed of, that I was proud of my ostomy and that it really wasn’t as terrifying as I had once imagined.

I have received many messages of support of these photos, telling me that I am helping to reduce the taboo and stigma. For that I am very proud and though I was afraid to first show these, I am happy to know that by sharing the images, that I am making a positive impact to the lives of those with stomas.

I know it is a little controversial and some people don’t think I should be showing my stoma, some think it is akin to photographing your bum hole and so it is inappropriate. Some think it is just a little gross… But the truth is that millions of people worldwide live with a stoma, and if me showing these photographs help just a few of them, then I am happy.

Unfortunately, some media outlets have got the information wrong and say I have crohns, a colostomy and that these images were inspired by Bethany Townsend’s bikini shots, the truth is I have Ulcerative Colitis, I HAD an ileostomy (I now have a jpouch) and these shots were taken and shared in October 2013 well before the shots of others with ostomy bags went viral!

Thank you to the Metro, Daily Mirror, BT.com and especially The Independent for sharing the photos and spreading awareness, pride and support for people with ostomies around the world!

Unfortunately, there have been some nasty comments, but I know that putting yourself out there with images like this will always divide opinion. I know that showing my stoma will bring out the worst in some, but it is so important to share to try and change the opinions of those who think it is “disgusting”. I receive thousands of amazing comments filled with lovely words and I know I make a difference. I don’t do this to get attention or for likes on Facebook!! Hahaha!!! I do it to make a difference and I believe that I do.

Nice, huh? But then you get comments like this that make it all ok…

“Certainly brave, and since the photos have popped up online I’ve shown my son – 4 years old why he has such a large scar across his tummy and what used to be there. It’s not something I’d ever Google to show him, but because it had popped up I thought it would be helpful for him to see and understand why it’s there”

“The whole point of these photos is to empower and take away any found shame about having a stoma! People will never ever feel the depth of pained shame to having a stoma and just how much it affects people’s lives and how it affects confidence in relationships and families. Complaining about such fickle things as people’s levels of decency is, to me, insulting! … and above all ignorant!”

“a stoma is like having an artificial leg you would never turn round to someone on the beach and say eeww put that away…I’ve not long had mine and at the start I was devastated as I had always been aware of my figure but my stoma saved my life and when anyone says anything negative about it…I just think I had hours to live and that was my only option…it saved my life”

“Amazing wonderful beautiful strong brave are just a handful of words I would use for these people. Much more than I ever will be! Some of the comments on here are just disgusting, but I dont expect anything less from uneducated morons who havent got a slightest clue on what a “real” issue really is! The models in these photos are heroes in my eyes!”

You can see more of my shoots here, here, here and here. All photos are by Timm Cleasby at The Picture Foundry and are copywrited, please don’t use my photos without permission as it makes us a bit sad. Get in touch and we can discuss usage terms.

Love Sam x

Give someone a #BagofLife

31st March 2015/19 Comments/in Blog/by sam

Which would you choose?

The Colostomy Association are launching a crowdfunding campaign for Stoma Aid. You can change the lives of thousands of people with a stoma across the world by helping spread the word about Stoma Aid by pledging a Facebook post or Tweet in our Thunderclap campaign.

Millions of people worldwide have a stoma – where an opening has been made on their abdomen which allows waste to pass out of their body. For these people, a stoma bag is necessary to securely, conveniently and safely collect output from their stoma.

However, thousands of people with a stoma across the world are forced to use tin cans, carrier bags and bits of cloth because they are unable to afford the cost of a stoma bag. In Papua New Guinea there are only two stoma care nurses in the entire country; in the Philippines a single bag costs a week’s wages.

For people with a stoma in developing countries, infection and hernias are extremely common as a result of them having to use tin cans and carrier bags. Many people are left unable to work or leave their home because of embarrassment and medical complications.

Each month, tens of thousands of stoma bags are thrown away in the UK as they are no longer needed. We will collect these unused bags and distribute them to people in need in developing countries across the world.

It will only take £22,000 to change the lives of thousands of people across the world. Help us spread the word about Stoma Aid and give someone a #BagOfLife.

Please get involved.

The last two years have been so hard, yet I am lucky enough to live in the UK and the NHS has supported me fully both with the actual surgeries but also with a constant free supply of ileostomy bags and a trained stoma nurse on call. Sometimes I wonder how different my life would be if I lived in a country where I had to pay for my treatment and supplies. But then I cannot even IMAGINE how it would be to have no access to ostomy bags, to live in a country where I had to make do with bags, plastic, cans or bottles.

It is heartbreaking to think about the people who are dealing with this every day. To lose your bowel and have to have an ostomy is tough enough, but to then deal with feeling dirty, smelly and humiliated and have to create a bag out of rubbish is unbelievable.

Please pledge a Facebook message and a tweet. It takes two minutes and means on 1st May when this campaign launches, it will do so with a huge boost on social media.

Thank you

Sam xx

Talking ostomies and self esteem – Pelican Healthcare

20th February 2015/0 Comments/in Blog/by sam

I was invited to the Pelican Healthcare Life Your Life roadshow in Cardiff to talk about living with an ileostomy and self esteem. It was a great day, there was a ton of information stalls and products as well as dietary advice, a reflexologist, the Get Your Belly Out team and lots more. The super friendly team at Pelican Healthcare were on site to welcome the ostomates, family and friends and to chat and guide them through the day.

My talk was filmed and you can take a look here… Enjoy!

If you want me to talk at your event, then get in touch!

Pelican Healthcare provide ostomy products to people all over the UK, as well as giving advice, support and developing a community for people with ostomies. You can like them on Facebook and follow them on twitter.

Sam x

Too Ugly For Love? Why this isn't ok…

15th January 2015/12 Comments/in Blog/by sam

The people who brought you Katie Hopkins show My Fat Story have outdone themselves with their latest show “Too Ugly For Love?” a show about… well let me directly quote the TV channel for you.

“For most people looking for love can be daunting. But for singles with a secret physical affliction the search to find ‘the one’ can seem almost impossible.

This series follows 10 unique singletons,ordinary people living with extraordinary medical conditions, on their quest to find love. All these conditions can be kept secret during a date,and with that comes a whole world of dilemmas. From alopecia, missing limbs and colostomy bags to medical anomalies such as hyperhidrosis (profuse sweating) and pyoderma gangrenosum (a rare form of skin ulcers), the singletons are agonising over the problems that these conditions are causing in their love lives.

How can you find love when you are hiding your true self? Where do you find the confidence to play the field? When should you reveal the truth to someone that you really like? And how will they react?

The longer you leave the truth, the harder it can be to come clean and the more dramatic the revelation. Follow the singletons through the ups and downs of the dating game as they adopt different strategies to hide their conditions.”

There are so many things wrong with this that I barely know where to start! So let’s begin with the title.

Too Ugly For Love? When I saw this yesterday and spluttered and swore profusely all over Facebook and twitter about it, a few people responded saying ‘Ahhh but see the question mark? They aren’t calling them ugly, they are just questioning it!’ Ohhhhh that’s ok then!! They are just asking whether the audience thinks these people are too ugly…

As I read the the biographies of the people on the show (all of whom I have no doubt are lovely, genuine people who I have NO beef with at all) I was just appalled. There is a lady with alopecia, two gents with amputated limbs, two with ostomy bags (the biog of the show calls them colostomies but as we know, the media refuse to accept the existence of ileostomies and so who knows which they are!), a woman with keloid scarring, one with a disease that causes excessive sweating and a woman who was burnt badly. As you read through that list, is there any part of you that would question their beauty based on their circumstances?

The title of the show is just to grab headlines, and I am not that surprised coming from a company who works with a woman who feeds off negative publicity like a grotesque leech, but I am so offended by it.

My blog is all about celebrating our inner awesomeness, about loving our amazing bodies whatever they look like and however poorly, wounded or damaged they have become. It is about trying to show my audience that my scars, my ileostomy bag, my illness never defined me, I have openly written about my journey and how I learnt not only to accept the changes I went through, but to embrace and love my brave, heroic body that keeps going despite illness and surgery.

The idea of a show that labels people with an ostomy ‘too ugly’ is just heartbreaking. We all have that horrid little voice in our heads, you know the one that tells you that you’re too ugly, too fat, too stupid, too (insert shit feeling here)… Seeing a TV show like this just makes me feel like everyone thinks that about me too. The idea that it is a question makes me think “Do people think I am too ugly for love??”

As someone who had an ileostomy bag and now has a lot of scarring including large keloid scars, I hit two of their categories. A little voice inside me thought ‘Blimey, am I doubly ugly?’

And that is when the anger struck… I am a confident woman who does this for a living, I write about body confidence, self esteem and chronic illness and so I KNOW there are so many people out there who feel crap about themselves because of illness, scarring, surgery and more. I am so furious that there will be people out there now questioning YET AGAIN (because believe me, we do it ALL THE TIME) how people judge them.

I haven’t watched the show and I won’t be. I know some people will argue that I shouldn’t judge a show that I haven’t seen. But really, I can’t bring myself to watch it, I know for a fact that when they were asking people to apply they didn’t say “Do you want to be on a show called Too Ugly For Love?” It just feels like a way to point at the people different to you, it is that sympathy porn of The Undateables, making struggling people easy fodder for the masses and it doesn’t sit well with me.

This line in the TV show’s bumpf gets me straight away…

“follow the singletons through the ups and downs of the dating game as they adopt different strategies to hide their conditions.”

I understand the feeling of wanting to hide your illness/disability away, but that is a negative thing. To hide something means to be ashamed of it and not want the world to see. Surely we should be helping others to learnt to accept the thing they want to hide, as a society shouldn’t we be saying ‘we are all different and that is a wonderful thing’ not watching people adopting strategies to hide their conditions!

And so I wanted to write about it, I have had so many messages on Facebook, twitter, instagram and email from people who are just disgusted by TLC UK. I hope TLC will take on board the comments from people all over the UK who they have upset and offended by the title of this show.

And my message to anyone reading this who is less than perfect (that would be all of you!) is this…

We are all so different, some of us slim, some muscly, some obese, some carrying a few extra pounds. There are those of us who have had surgeries that alter us in some way, who take medication that changes the way we look, there are those of us in wheelchairs, with ostomy bags, with scars. Some of us have very visible diseases and illnesses and some have ones that are entirely invisible but make our heads and hearts hurt with the struggle…

Beauty is not perfection. Ugly is not imperfection.

Our bodies are the only ones we have and they are with us for life, we need to learn to accept, love and celebrate the body we are in, no matter how poorly or broken it is. I always think of my scars as the hieroglyphs of my journey, they don’t show weakness, they show what I battled through and that I came through the other side a lot stronger, wiser and filled with so much more empathy and kindness for others.

If you are surrounding yourself with people who question your physical appearance, or there are people in your life who believe you are ugly, it is not yourself you need to change, it is the people around you.

Nice, kind, good people won’t judge you for your difference. Your true friends will love you for being you, your physical appearance means fuck all to the right people.

The person you want to fall in love with is out there, and they don’t care about whether your body is perfect, they care about whether your heart is true, your laughter genuine, your nature kind and your soul happy. If you have to hide away who you really are, they aren’t the one.

We are all amazing beings and we need to learn to celebrate and love one another not point fingers and question their perfection.

If you are looking for perfection, you will have a long wait. Every one of us has so many delicious imperfections that make us the person we are.

Fuck perfection. Let’s celebrate the best parts of us and know that we are all a little broken.

I would LOVE to hear your opinion on all this, please leave comments.

Peace and Love

Sam x

Dehydration and ileostomies

4th December 2014/12 Comments/in Blog/by sam

I was warned when I was in hospital that dehydration is a massive problem for folk with ostomies and pouches, this is because your large intestine absorbs water from your food and a lot of the salt your body needs so if you don’t have a large intestine, you are in for a bit of trouble.

This means that I am always thirsty and drink litres and litres of fruit squash a day, I find water goes through my system too quickly and was advised by a doctor to try adding dilute squash to it as the body has to digest it and so hangs on to the fluids for that little bit longer. I keep a store of squash in my ensuite bathroom as I drink two or three pints just through the night and so it stops me having to go downstairs at 2am.

Ostomy Lifestyle recommend this…

“People with ileostomies, particularly if the stoma is formed higher up in the bowel, can have more difficulties with their fluid intake. This is because it is the role of the large bowel to absorb water (and salt) and for people with ileostomies this is no longer being used. The small bowel will, with time, adapt to absorb more water and more salt, however careful attention should be paid to ensure that you are drinking an adequate, varied fluid intake (e.g. water, juice, cordial, herbal/fruit teas, etc) to maintain kidney health. Remember, you are aiming for light straw coloured urine.

For those who are more active it is even more important to pay attention to your fluid intake. Fluids lost through sweating contain electrolytes, so it is important to replace those with specialist sports drinks.

Everyone should bear in mind that alcohol is a dehydrating fluid in the most part and caffeinated drinks such as tea and coffee cause you to lose more fluid in your urine. The majority of your fluid intake should therefore be from fluids such as water and fruit cordials.”

The other issue is salt. As you don’t absorb salt well it is recommended to increase your salt intake at least for a while after surgery. I find I crave salt and add it to pretty much everything since having my bowel removed. I am a big believer that if you are craving something, it tends to be because your body needs it.

“Salt is important for nerve and muscle function and is found naturally in most food and drink. There are risks associated with both having too much and too little salt in our diets. Too much salt can lead to high blood pressure, which can make you more likely to develop heart disease, or have a stroke, while too little salt can cause headaches, cramps and fatigue. While there is some evidence that people with ileostomies can lose between 35-90mmol of sodium per day (equivalent to up to a teaspoon of table salt) because this would normally be absorbed in the large intestine, each person with an ileostomy will differ in terms of the amount they lose. There is also evidence that the small bowel of someone who has an ileostomy adapts over time to compensate for absorption issues. But, in the first few weeks after surgery you may need to add salt to your food and have additional salty snacks. There is conflicting information about long-term addition of salt to diet but evidence shows that most people have adequate salt in their diet to make up for what is lost through their ileostomy and there is no need to add more.”

Stomawise says…

“It is important to know the signs and symptoms of dehydration as well as preventative measures. These symptoms can include thirst, dry tenting skin, abdominal cramps, rapid heart rate, confusion and low blood pressure.

Dehydration can occur after ileostomy surgery as the purpose of the large intestine is to absorb water from the indigestible waste and then expel the waste material from the body through bowel movements.

During ileostomy surgery, a part or all of the large intestines is removed, which prevents the body from absorbing water from the waste before it is excreted from the body. Dehydration can occur when the person does not drink enough fluids to replace the fluids lost as the waste moves through the stoma and into the attached bag.

Your Daily intake of fluids should be 8-10 (8 oz.) glasses per day and can be of any liquid containing water (soda, milk, juice, etc.) to help meet your daily requirement.

Dehydration can also upset your electrolyte balance (especially potassium and sodium) When the colon (large intestine) is removed, there is a greater risk for electrolyte imbalance, Diarrhoea, excessive perspiration and vomiting can also increase this risk.

You should be aware of the signs and symptoms of dehydration and electrolyte imbalance. Dehydration and electrolyte imbalance is more common with an ileostomy as opposed to a colostomy.

Dehydration
Increased thirst, dry mouth, dry skin, decreased urine output, fatigue, shortness of breath, stomach cramps.

Sodium Loss
Loss of appetite, drowsiness and leg cramping may indicate sodium depletion.

Potassium Loss
Fatigue, muscle weakness, shortness of breath, decreased sensation in arms and legs, and a gassy bloated feeling may indicate potassium depletion.”

I am researching Himalayan Pink Salt at the minute for a future blog post, I’m not sure what I think yet but will write about it asap!

These are issues that most people don’t even think about, I thought I would bring it up as I recently spoke to two different people who highlighted to me that there are so many other issues and side effects to having Inflammatory Bowel Disease, a stoma or a pouch that people just do not know about and so thought I would share.

So next time you see an IBDer downing a pint in one or having an extra shake of the salt, you may just understand a little more. And if you have a stoma or jpouch, take note and keep an eye on your hydration as the effects can be grim and we don’t need any other reason to feel crap!

Love Sam xx

Christmas Gifts for people with an ostomy or IBD

20th November 2014/2 Comments/in Blog/by sam

It is coming up to my favourite time of the year, I LOVE CHRISTMAS!!! And so I thought I would pull together a few ideas for christmas gifts for friends or family with IBD, especially those with an ileostomy or a jpouch.

SPA TREATMENTS

I love a massage and adore a relaxation day in a spa, but with an ostomy there were a few alterations I needed to make. I could never feel comfortable laying on my front, the weight pressing on the bag made me nervous about leaks and the pressure on my stoma was uncomfortable. But there are tons of other treatments that would be great. Just be aware that some treatments require you to fill out medical forms before hand and may not offer treatments if surgery was recent. It is best to give them a call and chat with the therapist.

I would definitely recommend the Clumber Park Hotel and Spa, there are a variety of spa packages to all different budgets and the setting is gorgeous. I have been invited to spend the day at their spa and so look forward to giving you all a full review of the experience soon!

FOOD AND DRINK

A christmas hamper, bottle of fizz or box of chocolates are usually an easy gift, but it is worth considering that some people have to alter their diet quite a lot with IBD. Many people with an ostomy avoid nuts, some avoid carbonated drinks, some avoid dairy and some really struggle with fruit and veg.

It is such a minefield that it may be worth asking them first if there is anything they don’t eat or drink.

CLOTHES

If you are buying for someone with an ostomy, you need to be aware of waistbands, and unfortunately not all stomas are in the same place so it can be difficult to gauge. When people have asked me for advice I tend to go for the simplest option, so when asked which pyjamas to buy for a woman with a stoma, I suggested a nightie instead. For men I would go for a dressing gown and slippers.

Again everyone is so different, I didn’t mind wearing tight fitting clothes where you could see the outline of my bag, for others they may prefer something baggy and loose fitting.

GIFTS TO PASS THE TIME

For someone who is often ill and sometimes spends time either as an in patient or at many hospital appointments, items to pass the time can be a life saver. I bought myself a kobo e-reader last year and people bought me kobo vouchers so I could buy whichever books I wanted. It was fantastic to be able to have so many things to read on hand in a package that fit in my dressing gown pocket!

Other things could be a magazine subscription, my favourites are Psychologies (currently £22.85 for 12 months with a great free gift!) and National Geographic (currently just £19 for 12 months with a free fleece jacket)

App vouchers

Itunes vouchers

PAMPER TIME

For women I don’t think you can go wrong with some great beauty products, I ADORE L’Occitane hand creams, they are a bit of a luxury treat that always make me smile.

Lush also do some amazing ranges and I find the staff instore so helpful, go in and ask for help and advice. When I had my stoma I was very careful about using any bathing products or cream around the ostomy that could dry out or irritate the skin but found their products really lovely to use. Plus any gift given to me that is wrapped in a gorgeous scarf will always be a winner!

USEFUL GIFTS

I recently spoke to a reader by email who wanted to do something nice for a friend who was in hospital after having an ileostomy formed. She asked for advice on a gift and I suggested an IBD Hospital gift hamper including the following;

Eyemask and earplugs – Essential for getting any sleep in hospital!

Nice hand cream

Organic, non carbonated dilute squash

Notepad and pen

Slippers – the ‘slip on’ kind as you don’t want anything that you need to bend down to put on

A home made voucher offering a cooked meal/house cleaning/babysitting/movie night – just to remind them you will be there when they get home.

FUNNY GIFTS

I would definitely laugh at a poo based joke gift. Only you know your friend/family member and so if you think they have a sense of humour about it all, what about something a little bit funny?

52 Things to Do While you Poo perhaps?

A Bristol Stool chart mug?

Anything from poopsoap.com…

POO POURRI

Yep, you heard me… Poo pourri is a toilet air freshener with the BEST EVER ADVERT…

A MEDICAL ALERT BRACELET

Read about why these are a good idea here, I especially like the ones from Twisted Typist.

And finally…

If you have a spare £500, how about a heated toilet seat bidet magical loo thingamabob? Yes, really…

With a hot seat, bum wash, massage and a blow drier, this is the ultimate toilet for your IBD mate!

If you have any comments or suggestions, please let us know by using the comment box below.

Happy shopping!

Love Sam x

I <3 MY STOMA

3rd July 2014/6 Comments/in Blog/by sam

After a year of blogging here at So Bad Ass I am OVER THE MOON to see so much about IBD, Crohns, Colitis and living with an ostomy in the media. It is a really exciting time and Im so pleased to see stories and pictures in the news and going viral. As you may know my aim is to #stoppoobeingtaboo and so it is fantastic to see the disease and treatments being talked about.

Im loving the bikini shots doing the rounds, I have been open and shared my photos for the last year as I think it is so important to demystify and show the reality of having an ileostomy or colostomy bag and so I think the other people sharing their pictures are just brilliant.

I am now 7 weeks post pouch surgery and so I am learning to live without my ileostomy after 9 months with my stoma and bag but it got me thinking about how that bag changed my life so massively. After ten years of ulcerative colitis and endless hospital stays, medication and different treatments I had surgery to remove my large intestine and an ileostomy formed.

For the first time in so long I suddenly felt like I had some control back in my life. Don’t get me wrong, it was major surgery and the recovery was tough but I was no longer going to the toilet 20-30 times a day, I wasn’t bleeding or in pain and it changed my life in such a positive way.

It was a big decision and a terrifying one, but it was the right thing for me and I honestly did love my stoma. It was a funny little thing, I had no control over it and it bubbled and trumped whenever it felt like it. I named it Barack Ostoma (no real reason, I just love a pun and it made me laugh!) and it allowed me to go traveling to Vietnam and Australia just three months after surgery, something I couldn’t imagine trying to plan whilst being ill with Ulcerative Colitis!

And so today I just want to celebrate my stoma and ask you to share my post, let’s show the world what is under the bag. It isn’t terrifying or ugly, it isn’t dirty or something to be ashamed of, it is a surgical alteration to the body which changes lives and helps people live again.

I <3 my stoma.

What do you think of it?

Love Sam xxxx

Giving nurses a bad name

10th April 2014/19 Comments/in Blog/by sam

I came across this picture on Instagram by nurse_student, now whether she thought it cute or funny I do not know but I am fuming.

Id like to say that I responded with a calm, witty devastating put down. I can’t. I said “Wow. I hope you are never my nurse, because if you acted like you wanted to throw up and took the piss whilst doing your fucking job, I would kick your ass. You give nurses a bad name.”

Id like to explain how it felt when I saw this ‘joke’, I know that nurses have to deal with a lot and sometimes having a sense of humour is the only way to get through a shift, but nurses are supposed to be carers, people who are patient and sensitive. This ‘joke’ made me cry.

Let me take you back seven months. I had been through ten years of illness, pain, humiliation, meds and treatments and then just come out of major surgery to remove the whole of my fucking bowel. I was hooked up to an epidural and had a catheter, I was dosed up on all manner of pain relief and had zero control over my body. I was having to deal with the fact I had a stoma emotionally and physically. Having to learn a new set of skills to be able to change my bag and clean myself as well as ‘mourning’ the loss of my bowel and learning to accept my new body.

It was the hardest time of my life. I have never felt so overwhelmed, exhausted, terrified and alone in my whole life. I was entirely dependent on those around me and I felt like shit.

Then I had my first leak. I was covered in shit from my chest to my hips. It was everywhere and I was mortified, I couldn’t stop crying and I was so embarrassed. I rang the bell and a nurse came. She looked at me and said “Oh dear, you poor thing! Come on lets get you sorted.”

She cleaned my skin and dealt with this mess like she was washing the pots. She smiled and chatted and batted away my embarrassed apologies and thanks. She made this horrific situation a million times better. She spoke of how awful she knew I felt but how each day life was going to get easier, she was kind, caring, sensitive and just amazing.

The second big blow out leak I wasn’t so lucky. A nurse came and she tutted. She cleaned me up but barely spoke and made me feel like I was an inconvenience to her. When she left I cried myself to sleep. I felt like a baby. I couldn’t even clean myself, it was so heart achingly depressing.

The third time I got a nurse who just put a cardboard bowl of water on the table in front of me and said I needed to learn to do it alone. I couldn’t sit up, let alone stand. I had to clean myself up the best I could including washing shit out of the 7 inch stapled would on my stomach.

These nurses, like the woman who posted this ‘joke’ should be ashamed of themselves. You know what? We all know that dealing with another persons shit isn’t nice, but when you become a fucking nurse then you have to suck it up buttercup! If you don’t like it, if it makes you gag and makes you want to share ‘hilarious’ memes on the internet, then you are IN THE WRONG JOB.

So today Im angry. Im not weak and sick in a hospital bed right now, I have some energy and will stand up for myself and other people with an ostomy when I see these insensitive, vile jokes.

I just hope that people will read this and understand that what may be a silly joke to you, can devastate a person reading it. It may seem funny and you may tell people to lighten up about it, but put yourself in the shoes of the person you are mocking. Or imagine that person is your mum or child and see how funny it is then.

Sam xxxx

2013 – what a year!

30th December 2013/0 Comments/in Blog/by sam

This year has been filled with highs and lows. I got sick, lived in an amazing house, held our Cleastonbury festival, laughed a lot, cried quite a bit, had my colon removed, got an ileostomy bag, had some big disappointments but also some fantastic highs, I have visited Vietnam and I’m ending the year in Sydney with my big sis!

I’ve faced my biggest challenges this year, two weeks in hospital, IV steroids, moon face, mood swings, pain, fear and the ‘decision’ – I had a subtotal colectomy with an end ileostomy and spent the last four months living with an ileostomy bag.

It has been one of the hardest years of my life, there were times when I felt so low, that life was unfair and that I didnt want to have to deal with all this. But through the support of my friends and family I got through it. I founded this blog as a cathartic way to express my feelings while I was on this rollercoaster ride and was amazed that so many of you read it. Over 30,000 views since I started!!!!

As tough as this year has been, I have come through stronger and with a sense of what I want from life. Im more adventurous and open to change, I want to make the most of every second, Im braver than I thought and stronger than I seem.

I am covered in battle scars that remind me of what I have been through, Im not ashamed of them nor do I feel the need to hide them or cover them up. I wear my ileostomy bag with pride as it is a symbol of wellness for me. Before my operation my life was ruled by the toilet, my quality of life was suffering and I just couldnt see a happy future. Now my bag lets me lead a better life.

Im travelling at the moment, I am been to Vietnam and Im in Australia now. This is something I couldnt dream of doing before as the fear of having a flare up would have ruined it all. In the last 3 weeks I have been swimming, snorkelling, rode a bicycle around a Vietnamese island, travelled over 12,000 miles, hiked through Aussie bush and LIVED.

2013 has made me realise that who you are is not what your life throws at you, but how you choose to deal with it.

So that was 2013, lets see what 2014 brings!

Happy New Year to you all!

Love Sam xx

Vietnam with an ileostomy

19th December 2013/0 Comments/in Blog/by sam

Cin ciao from Vietnam!!! Hello!!

After my surgery in 3rd September this year to remove my colon and create an ileostomy I was nervous about our planned trip to Vietnam and Australia but here I am and all is going well!

The flight was fine, I avoided the (free) alcohol which is always a bit depressing as I knew that dehydration was a possibility that could affect me badly. I took an Imodium in the morning and took two large bottles of water onto the flight with me to make sure I had easy access to water.

It was an 11 hour flight so I had to empty my bag a few times during that time. I figured out which was the slightly larger loo and made sure I went for that toilet. I packed most of my supplies in my hand luggage but made sure I had a small bag with a set of everything I needed so I didn’t have to take my big bag.

One tip is to put loo roll down the pan before emptying your bag as otherwise the output can be difficult to flush. I also packed a mini spray of ostomy scent and some anti bacterial hand gel which made life a little easier.

Despite drinking tons I did end up feeling quite dehydrated so I drank a couple of cokes and had some salty snacks. I did have some diaralytes packed too to replace the salts and fluids lost.

All in all the flight was ok, I was worried but it all went fine. And no, my bag didn’t swell up with air when I was flying!!!

So onto Vietnam – it is an amazing place!!! I have been blogging on our family travel blog so if you want to read more on our trip take a look here

We are staying in Ho Chi Minh City and we are having a fantastic time, my bag is not stopping me doing anything though I am aware of it and conscious of looking after myself.

I have been on boat trips, walked all over the city and even cycled around an island!

The heat and humidity has caused my stoma to swell, which in turn has caused some soreness and bleeding of my stoma. I have increased the size of the hole in the flange to compensate for this.

I’ve also had some soreness of my skin around my stoma due to the glue on the flange and general sweating in the 32 degree plus heat!!

Regarding clothes I found shorts that fitted comfortably under my ileostomy bag before we came and I’m wearing those with long vests or tshirts. I have occasionally felt a little self conscious about my bag. It was peeking from under my top as I got out of a boat and I saw a group of men staring but it’s been fine.

The food in Vietnam is amazing and I have enjoyed eating everything I have wanted. I’m aware of general cleanliness and only drank bottled water, not eaten street food and used anti bac gel before eating.

There have been a couple of times where I have been in some discomfort due to my stoma being swollen or my skin feeling sore but I was adamant that it wasn’t going to ruin our trip. It is really important to me that I live a normal life and I don’t want my bag to negatively affect my experiences.

This has been an amazing trip, I have had the time of my life and I’m glad I didn’t let the surgery put me off coming. It has meant thinking some things through and making my health a priority but it really hasn’t affected our holiday.

Vietnam is crazy but beautiful – it is one of the most fantastic places I have ever visited and I’d recommend it to anyone!

This morning I have woken with some stomach cramps and diarrhoea – something I ate yesterday hasn’t agreed with me. So I’ve taken Imodium and I’m drinking plenty. This could happen bag or no bag so I won’t let it get me down!!

I’ll keep an eye on things and make sure I stay hydrated, I’ll take some diaralyte and enjoy our last day in Vietnam!!

Tonight we fly to Australia, I’ll update next week!

Anyone with an ostomy, I really hope this inspires you to know that your stoma and bag are no reason to stop you living life to the full – your ostomy is there because it saved your life – so live it and live it well.

Gam hon!!! Thank you!

Love Sam xx

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