Tag Archive for: ileostomy

#stomaselfie – going viral again!

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.

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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.

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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.

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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!

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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.

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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

Which would you choose?

colostomy association bag of life

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

2014 – what a year!

What a year! I started 2014 in Sydney with my sister and our families, we travelled up the coast and had an epic road trip.  It has also brought me a hernia, a house move, surgery to create my jpouch, a couple of weeks in hospital, a new life learning to live without my colon or ileostomy bag and one more hernia!

I have been on the radio a few times, done talks all over the UK, hit my 100K views on So Bad Ass (now up to 160K) and started a writing course.  I also visited my aunty and uncle in Spain and honeymooned in Lanzarote with Timm  I made a new friend who has a stoma… we made friends because we have no colons but stayed friends because we are awesome and he makes me laugh in a rather unladylike fashion and knows, like really knows…  I made new friends without stomas who I now feel like I have known forever and I hung out with so many old friends who made every tough part of my year easier and every lovely part of my year happier.

We bought a hot tub, I got a big tattoo, I met Chuck D and Flavor Flav, went on a nudist beach and my sister came over to the UK to visit with her family.

I renewed my wedding vows to the best husband in the whole world in the BEST WEDDING EVER surrounded by all my absolute favourite people and married by one of my best friends Violet.

2014 has had it’s ups and downs.  The wedding was amazing, it was just the most beautiful and perfect day and to get to marry my perfect bloke for the second time was the best thing ever and my total highlight of the year.

The surgery was tough, 10 days in hospital after a long, difficult surgery and now 7 months later I am still recovering and learning how to deal with my jpouch.  The past 18 months have been the toughest of my life.  Being so ill and having life changing surgeries have been at times almost too much to bear, there were times when I felt so low, so broken and in so much pain that I just didn’t know how I would cope.

I learnt that coping is the only option.  Every day, no matter how hard it is, you have to just keep plodding, just keep swimming, just keep going… Having fantastic people around you helps and I am lucky enough to have some of the best.  My amazing husband, family and friends make it all bearable in those dark moments and I can’t thank them enough.

This year has seen So Bad Ass turn from a small personal blog into something that is read all over the world and (hopefully) helps people.  All I ever wanted from this blog is to make a difference to other people, to use my pain and my journey to help other people with IBD, to use it to raise awareness, raise money for Crohns and Colitis UK and to help people everywhere to have better self esteem, body confidence and to love themselves.

You are all amazing and I thank you from the bottom of my heart for every read, every like, every tweet, every share, every kind word.  You are awesome!

Enjoy and I will see you in 2015!

 

xx

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Thanks again for an amazing year, if you fancy doing something wonderful please go to my Just Giving page and give whatever you can to Crohns and Colitis UK.

 

Have an amazing christmas and a brilliant New Year!

 

See you in 2015

 

Sam xxx

Dehydration and ileostomies

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

I <3 MY STOMA

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.

 

 

ileostomy bag and fashion swimwear

 

 

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?

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Love Sam xxxx

First ever vlog! How to change your ileostomy bag video

I have been threatening to do this video for months and never got round to it, so here it is.  My first ever vlog, a how to video on how to change your ileostomy bag.

Enjoy!

 

Love Sam xx

A massive f**k you…

This week a friend told me that someone she knew had just had a colectomy and ileostomy.  One of his ‘friends’ had this to say on the matter…

“If I had to have one of those bags I would shoot myself.”

Really? Wowzers.  Im not going to explain all the reasons that this is totally messed up so Id just like to send that person these…

queen fuck you

Love Sam xx

Woah! Eventful Friday night!

It’s all gone a bit dramatic here tonight, it started with a total bag blow out.

One minute I was cooking dinner with Timm, the next I heard a popping noise and felt a huge whoosh as the contents of my bag spectacularly emptied out down my legs and into the kitchen floor.

With an ‘oh shit’ from me, the husband realised what was happening and we both leapt into action. Well for me it was more of a legs together weird shuffle to the bathroom whilst Timm followed with my supplies and then he went to clean up the poonami in the kitchen.

I’m a lucky woman to have such an awesome husband to look after me. If I’m honest, I bloody hate that he has to deal with my shit (literally) I find it embarrassing and upsetting. But he deals with it all in a way that makes life so much easier and I find it easier to allow him to help me because he’s just so cool about it all.

sam cleasby blogger writer stoma ibd

After Id showered and sorted out a new bag I rejoined Timm and we finished making dinner and all was well in the world…

Then after dinner we headed out to the supermarket, we’re trying out meal planning and so we wanted to shop together to get next weeks groceries. As I got in the car I started to have stomach ache, by the time we got to Morrisons I was in quite a lot of pain. It kind of felt like trapped wind so I tried to ignore it.

Then it got worse, I went to the loos and I thought I was going to pass out from the pain. It felt like my stomach was bursting open, I’ve not hurt that bad since I was in labour. I came out and was sweating, pale and thought I would faint from the pain.

A lady sat me on a bench and I called Timm who was walking round with the trolley to tell him I needed to go home.

He practically carried me to the car and drove me home whilst I was grunting, shouting and swearing. I honestly thought something had burst inside me. It was agony.

I got home and laid in bed and removed my bag. My stomach was really swollen and my hernia really pronounced. My stoma was large and dark coloured. I was crying in pain as Timm got me painkillers, I really thought I needed to go straight to hospital.

As I laid flat my stomach started to relax and then I felt a weird feeling and my hernia seemed to shrink back into my stomach. And the pain just went.

It was the weirdest thing, one moment I was rolling round in agony, the next I just had a slight ache.

We’re thinking it must be the hernia?! That it came out a lot and then as I relaxed and laid flat, it sank back in. Who knows?! I haven’t eaten anything different today than I’ve had before. I haven’t drank quite as much as usual but just got no idea.

I felt quite embarrassed at the drama I caused and how much grunting and swearing I did!!! I’ve had painkillers and going to stay in bed now and relax.

parastomal hernia recovering from ileostomy surgery and hernia

Excuse the mess in my room! We are moving house in a couple of weeks and there are boxes everywhere!!!

I’ll speak to clinic/stoma nurse as soon as possible to see what they think it was. If any ostomates have any ideas I’d love to hear them! Perhaps I’m doing too much, I’m packing and cleaning our current home. I have no idea, I’m just glad I don’t feel like an alien is bursting through my stomach any more!!!

Thank you Timm for dealing with all my stoma dramas tonight, you are my hero and I couldn’t deal with all this without you.

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Thanks for reading

Sam xxx

Pouch surgery after ileostomy – making the decision

I had my first surgery on 3rd September and that was a subtotal colectomy with ileostomy.

My options from that point are…

To keep the ileostomy permanently, this would mean one more surgery where they remove all my rectum and anus and sew everything up! (Barbie butt…)

To have a pouch made out of my small intestine that is attached to my butt so that I can then empty my bowels through my bum and not have an ileostomy any more. This is two more surgeries.

To wait. There is no immediate need to make the decision. I can wait till I’m entirely sure. They like you to make the decision within 3-5 years as the risk of cancer in the rectal stump (least attractive words ever…) increases after this point.

There are pros and cons to all options. I’m dealing with my bag well now, but I just don’t know whether I’m happy to have it forever. The surgery is so FINAL…

But the pouch surgery can be a difficult recovery. They say to give yourself a year to recover. The muscles in my arse haven’t worked for do long that it takes a while to re learn how to use them. The pouch is also quite small and so learning how to use it can take time.

There’s also the thought of two more surgeries which is pretty terrifying.

I’m scared of going back to hospital, I’m scared of being helpless again and I’m scared that the recovery will break me.

BUT I think I have made the decision.

I’m not ready to give up on my arse, as much as my bag is now easier to deal with I just don’t think I want to keep it forever without even trying the pouch surgery. So I’m going to see my consultant in a couple of weeks to let him know that I’d like to move forward.

My life is currently crazy busy, between our family photography business, family stuff, planning our wedding renewal, a summer working with our arts group Responsible Fishing around the UK and a million and one other things, I’m hoping that the surgery could take place after September when things should calm down a little!!

The decision is a big one and I’ve spent a long time deciding what I want to do as well as talking to my husband and a lot of people on forums around the net. Who knows if it’s the right one? If the pouch surgery didn’t work or just wasn’t the right option for me, I now know that I could deal with keeping my bag forever, but I think I’ll regret not trying to regain a more normal life and having the pouch.

I’ll post more after my hospital appointment!

Sam xxx

Struggling with a swollen stoma in the heat

Sorry it’s been a couple of weeks since my last post! We’re having such an amazing time in Australia that I haven’t had the time or energy. It has been non stop in exploring, visiting family and generally just having an amazing time!

My stoma and bag have been doing ok but the last few days I have been struggling. My stoma swells in the heat and when I’m exerting myself, I don’t want to miss a thing so I’ve been snorkelling, swimming, walking and doing everything I can. The problem is that my bag has to fit snugly around my stoma and so when I cut it to fit my swollen stoma, as the swelling decreases it leaves a gap and that gets the acidic output on my skin so I’m left with a Red raw ring of skin.

If I cut my bag to fit my normal sized stoma, when it then swells, my bag cuts into the edge of my stoma. It is now ridged, bleeding and very tender.

I’m in catch 22! If anyone has any advice it would be greatly appreciated. I have texted my stoma nurse for help and I have arranged a clinic visit for when I’m back in the Uk. We fly home on Tuesday, I can’t believe it’s been almost 6 weeks!!

Apart from the issue my stoma and bag have been entire dealable. I’m really glad we came traveling and would recommend anyone with a stoma to not be put off by the idea of travel.

This trip would have been impossible during a flare up. My bag meant I have had a trip of a lifetime and been able to enjoy things I never thought I would.

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Love Sam xx

UPDATE – I spoke to my stoma nurse who suggested using a donut (a sticky , mouldable ring) around my stoma before I put my bag on. This didn’t solve all the problems, but it definitely helped!!

When in doubt call your super stoma nurse!!!! Xxx