Tag Archive for: ostomy

Shit happens…

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“So the decision is made? I’ll book you in for another ostomy”

Yep, the decision is made. This journey that started 2 years and 2 months ago when I had my colon removed and an ileostomy formed, is coming full circle and in early 2016, I will be going back under the knife and having a permanent stoma formed.  They will remove my Jpouch and make an ostomy from my small intestine and I will once again, have a bag. Though, this time it will be a bag for life. (Not the Tesco kind…)

I am still in hospital recovering from this latest bout of pouchitis and this week I have had to make some tough decisions. Do we continue to fight fires and keep having medication, hospital stays, exhaustion and generally spending 20% of my day on the toilet? Or do we go back to the ileostomy. 

I’ve had to be quite logical and unemotional about it all, thinking in terms of quality of life, work, family and prognosis of the jpouch.  I have been listing pros and cons till the early hours of the morning, imagining life with a stoma versus life with a Jpouch and all that comes with both scenarios. I have googled my heart out and spoken to Timm, the kids and to my fabulous consultant Mr Brown. 

And I have made the decision.  I’m booked on the urgent list for a pouch excisionand permanent stoma.  There will be no going back from this, I believe I’ll have the full on Barbie Butt! I feel relief in this decision, I know it is the right thing for me.  The pouch is fantastic for some people, but for me, it isn’t working. 

Only now, as I sit on the hospital ward, the lights dimmed and only the gentle hum of machines and whispers of nurses at their station, I feel very alone and very emotional.  

This isn’t fair. 

That’s how I feel. Like a bratty toddler. That I never signed up for a life of illness and surgeries.  I don’t want to live with a bloody ostomy bag stuck to me. I don’t want to spend so much time in hospitals. I don’t want to have to make life altering decisions that seem to have two crap endings. I don’t want to worry about being a burden to my family. I don’t want to be sick. 

And you know what, I’m totally allowing myself this rant. I think I’m entirely entitled to feel shit about all this. It’s ok for me to have a cry and feel sorry for myself. Because this is all not fair. 

It’s not fair that I’m looking at my fourth surgery in three years. It’s not fair that I have this illness, these complications. It’s not fair that my three kids are now used to seeing me in a hospital bed. It’s not fair that my husband has the options of a wife who shits herself or a wife with an ostomy bag. 

I have no positive spin today. No fun little meme with a quote by the Dalai Lama. 

Nope, I have pain. Raw, emotional, angry pain.  And that’s ok. 

Sometimes life throws absolute crap at you, we have to deal with rubbish situations that are difficult and make you sad and angry. Sometimes shit happens.  And it is completely fine to not be ok with that. 

Accept your sadness. Revel in your anger. Acknowledge your pain. 

Tomorrow is a new day and we can figure out the positive shit then… 

Sam x 

World Ostomy Day

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Today is World Ostomy Day! This is like my poo lady Christmas!

When I had my surgery, I never thought I would be celebrating my Ostomy but as I have learnt to accept my illness, I can recognise that my Ostomy was the start of a new life for me. It is a different life to the one I imagined but my ostomy has had so many positive effects on my life.


Writing about ostomies, jpouches, IBD and invisible disabilities is an honour and a privilege and I have heard so many stories both of struggle and of overcoming adversity.


Today lets celebrate our ostomies whether we still have them or not!  I now have a jpouch and so no longer have my ostomy but I loved my stoma that helped my body come through ulcerative colitis.


Having your body change so massively can be a huge challenge, both physically, emotionally and mentally.  It can be a very isolating experience and so talking out about life with an Ostomy is so important to help others.  I speak out in the hope that people following in my path will have a slightly easier time.


If you need support or help, here are a list of amazing people that I would highly recommend.

Colostomy Association

IA Support

Crohns and Colitis UK

Feel free to share my World Ostomy Day images with links to www.sobadass.me or make your own pictures to share and celebrate!

 

Sam x

Why you should go to support groups

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I do quite a bit of public speaking about life with IBD, stomas, jpouches and also self esteem and body confidence. I also volunteer with Crohns and Colitis UK and IA Support at events all over the UK.  And the one thing that tends to be the same at these events is the lack of younger people attending and I think it is a real shame.

I understand that there is so much support online nowadays, and I also get that going to a support event in person can be a terrifying experience, but I do believe that person to person support, that real life connection is irreplaceable by chatting online.

When I had my first surgery and had my ostomy, it was suggested that I attended a Stoma Open Day at the local hospital to meet other local ostomates and see all the different products available to me.  I went along and entered the room, so nervous that I was shaking.  I nearly turned back a few times, the idea of going into a room of strangers was almost too much to bear.

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I think I was the youngest person there by 20 years.  That sucked.

As I walked around the stalls I was asked twice who I was with, the assumption being that I was there to support an older relative.  It really dented my confidence and reasserted this awful feeling that I had an “old persons disease”.

It made me realise that it is a vicious circle.  A younger person attends these events and feels out of place and so doesn’t return, meaning the next younger person who arrives feels exactly the same.

This is why I feel the need to speak out, make a call to arms, to ask all you younger folk (and by younger I mean under 50!) to try out an event local to you.  It isn’t easy but I assure you that having attended many over the past two years, the feeling I walk away with after spending time with people who know exactly how you feel, after talking openly to people about things you may shy away from with your friends and family, that feeling is good.  It’s inclusive, it’s helpful.

That feeling I had at the first event made me want to make things better for others.  This blog, my talks, the things I discuss in the media is all part of a plan to raise awareness and make people be more understanding that chronic illness can strike at any age and that we need more support for all.

I will be at the Stoma Day this year as a volunteer for Crohns and Colitis UK South Yorkshire group, so if you are in the area, please come along, you are guaranteed to see at least one smily face and I would love to chat and help you make other connections.  It is terribly advertised and so you may not even be aware of it.

public speaker about self esteem ulcerative colitis crohns ostomies colostomy ileostomy jpouch ibd

 

It is on 5th October 2015 from 10am – 3pm at Hillsborough Arena in Sheffield and is organised by Sheffield Hospitals.  If you have an ostomy and live in South Yorkshire, do consider coming along.

As I said I volunteer for the South Yorkshire group of Crohns and Colitis UK, we are a team of volunteers who offer support to sufferers and their families, do fundraising and generally getting the name of CCUK out there, especially in South Yorkshire. The team can take up as little or as much time as you’re able to, we’re grateful for any help. So if you feel like coming along, even just to see what we’re about, then we’d love to see you.  We are having a meeting this Thursday 17th September in Sheffield, all are welcome if you are interested in helping out or hearing more.  You can find the event here.  We are ever so friendly and we are a laid back group so please think about getting involved.

I do a lot of this stuff because I really do care, I want to make a difference.  I honestly believe that through speaking out and talking at events, we can help all others who follow in our path.  What we go through as people with IBD is tough, we fight an illness that tries to ruin every part of our lives and the worst thing is the strangling silence that wraps itself around our throats and stops us speaking out.  Meeting others who are going through the same thing makes life a little easier, it stops that feeling of isolation, of feeling of being alone.

So think about it, have a look at local events to you and consider attending just one.  If we all do that, imagine the army of support we could create!

Helping others and helping yourself.  Get involved.

 

Sam xxx

Bad days. And good!

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I’m not having a great day today, I’ve had a stinking cold for a couple of weeks and I think my immune system has taken a battering and so I have been up a lot in the nights going to the loo. 

I woke this morning and my joints are absolutely agony.  My body is feeling broken and very, very old. I have been ignoring and trooping through for a while but today it is time to listen to my body and stop.  Today is about laying on the sofa and watching terrible day time TV.  My body is speaking and I am listening. 

I am pretty stressed at the minute and I don’t think that has helped.  Our car broke a month ago and we’ve been trying to get it sorted, it turns out it’s not worth spending the money on and so we have to buy a new one.  It’s money we could really do without spending/losing now.  Our rental house is going on the market at the start of next year and so we are house hunting.  Our work load has been HUGE over the summer and we are playing catch up.  And family stress of close relatives taking umbrage with something I have done (I have no idea what!) means I’m being deleted and blocked on Facebook and talked about behind my back. Part of me wishes they would just speak to me and tell me what’s wrong. The other part thinks I just don’t need the stress. 

I thought I would share this on here as it is how I have always dealt with my illness for the past two years. But then I thought about how I have been a little quiet of late on here about my health. And the reason for that is because it has all been loads better!  With a balance of meds, probiotics, diet and exercise things have been great and I haven’t had much to report. 

It made me think about how sometimes ostomies and jpouches have a bad reputation because we only talk about them when experiencing problems.  It made me want to try harder to write about all the positive things that have happened to my body since getting surgery, about how much better life is. 

And so I will try to remember to write about the good days as much as the bad days. 

Just not today as my hands and wrists have had enough. 
Sam x 

Coloplast Care

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The folk at Coloplast have developed a new support programme for people with an ostomy called Coloplast Care which is a fantastic idea and great development for ostomates everywhere.
Whether you are facing surgery, a new ostomate or had your ostomy for years, Coloplast know that each person is totally unique and therefore their needs for support are so different.  The great thing about Coloplast Care is that it is a bespoke and individual plan that aims to help in everything from the basic medical principles of an ostomy to the practical things you can expect as time goes on.  Offering information and support both physically and emotionally and giving you back a level of control to empower you in your new life.
I would have loved to have had this programme two years ago when I was facing surgery and think it is amazing how much ostomy support is moving on.  I remember the feelings of isolation, confusion and upset and just not having all the information.  Though my doctors and stoma nurse were wonderful, the questions I had always popped into my head at 3 am meaning I would find myself frantically googling away to figure out what I could do and sometimes felt very alone in the vast internet world of differing opinions.
coloplast care ostomy support
Whatever stage you are at, from complete newbie novice to old pro, we all still have questions, no matter how ‘sorted’ you are, a new situation can always pop up and create distress in not knowing how to handle it.  Coloplast Care advisors are there to guide you through stoma routines, ostomy accessories, check ups and so much more.

It’s not just for people who use Coloplast products; it’s open to anyone so do go take a look no matter which products you currently use.  It provides specific support and advice to each member based on your needs, whether your issues are emotional or if you have just had surgery, or perhaps you have had your stoma for 5 years but you are off travelling and need some advice, the programme tailors advice and support for the problems you are having right now.

So how do you join?

coloplast care ostomy support

It’s quick and simple, head over to the sign up page, fill in your name, email address and what sort of surgery you have had (or are expecting).

On the ‘Experience’ page, you are asked about any issues you may have with adhesion problems, skin irritation or pouch problems.

coloplast care ostomy support

The “Wellbeing’ page questions how you are feeling, with more in depth questions about your support, worries and emotional wellbeing.

coloplast care ostomy support

And that is the basic sign up done!  You can then go on to answer more questions about yourself and your situation if you like.  I would recommend this as they more information they have, the better and more useful support you can receive.  This includes more about you, how you live, your age, hobbies, activity levels and then information regarding your current ostomy products, shape and size of your stoma, position, how your body and skin is.  All this data is used to tailor your programme to you.

If you struggle with technology or are unsure on how to work the forms, do ask a friend, family member or a health professional to guide you through.  But it is very clear and simple to use.

The company’s ethos is to ‘listen and respond’ and so the website is chock full of advice sheets, support guides and problem solving information. It also includes a system to help ostomates identify problems that they’re having for example skin irritation, pancaking etc.  This means you can print off and discuss these issues with your stoma nurse, or request a call-back from an advisor, as well as the programme recommending some products to try and resolve these problems.  This isn’t to replace the advice from your doctors and stoma nurses but additional support that gives you the power to be informed and proactive.

It can be quite overwhelming when you see the amount of choice when it comes to ostomy bags and accessories, so to have a programme that goes through your needs and then shows you options is fantastic. You can also order free samples through the site to try out before committing to a new bag.

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd

 

Another part that is just great is the Ostomy Check, around 40% of people with a stoma have an issue that they are just putting up with, that they think is something they just have to live with.  The Ostomy Check is there for people to see what is ‘normal’ and what is an issue that they could do something about.  Coloplast support staff will send an email asking them to complete a checklist every couple of months.  I think this is a fantastic service that is patient centred, it is nice to feel cared for and sometimes after you have left hospital, you can feel isolated and not sure where to turn for support and advice.

I have met a lot of ostomates who have told me of issues, from slight niggles to huge problems, that they believed where part and parcel of life with a stoma.  This service allows people to see exactly what can be done to help and support them.  One person noticing an issue and recommending a product could change a person’s life!

As with everything, your stoma and ostomy needs change over time and the brilliant thing about Coloplast Care is that is adapts and changes with you.  This isn’t about a one size fits all support as that just doesnt work! The programme adapts and grows with your needs, tailoring advice to what you need, when you need it.

I have spoken to a few ostomates using the Coloplast Care programme and all have found it helpful, many saying they wished this was around when they first got their stomas.  I think we need to empower and educate ourselves about our health and this system helps you do that.

Head over to Coloplast now and check it out, it’s free, easy and if you don’t like it, you can opt out no problems!

 

 

Sam xx

 

This is a sponsored review, meaning that representatives of Coloplast Care have paid me for this post, but it is my own, honest opinions.  From time to time, So Bad Ass reviews products and services for companies, but I only share things that I believe benefit my amazing readers.

Pelican Live Your Life Roadshow – Preston

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I will be talking at the Pelican Live Your Life roadshow in Preston on Sunday 5th July talking ostomies and body image.

At Bartle Hall from 11-3, Come along and meet the Pelican team, chat to nurses, and attend some great talks. It’s a must for people with an ostomy, carers, family and friends. I’ll be doing my talk once in the morning and once in the afternoon so if you’re near Preston, do call in.

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Feel free to drop by with your family and friends, anytime between 11am and 3pm. If you have any queries, or would like to confirm your attendance, you can contact:

Email –
Freephone – 0800 318 282

The guys at Pelican are super friendly and so easy to talk to, it’s well worth getting in touch.

Sam x

Lift Plus 360 – ostomy adhesive remover review

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So those clever chickens over at Opus Healthcare have come up with this new product Lift Plus 360, a medical adhesive remover for people with ostomies.

When I had my stoma I always used an adhesive remover as taking the bags off were the trickiest part, that super great seal you yearn for when putting the bag on to ensure there are no leaks suddenly becomes a huge chore when you have to take the bag off, especially if you use extra flange extenders or those stoma donuts.  The adhesive removers act to pretty instantly stop the sticky.

It can be painful and really affect the skin around the stoma to pull the bags away and so I always recommend a good remover.

Now the Lift Plus 360 goes one step further, the new spray can be applied from any angle (hence the 360° name) meaning it is SO much easier to use.

lift plus 360 opus healthcare ostomy supplies

I no longer have a stoma and so I called on my lovely pal who has a permanent stoma to try out Lift Plus 360 and let me know what he thought.

“It really does work!” he said “whatever angle you spray it from, you get a great steady stream that is directed exactly where you need it.”

“The worst part of a bag change is pulling the sticky side away from your skin, especially if you’re a bloke who has hair on the stomach area.  With some sprays it doesn’t take all the adhesive off and I end up pulling my hair out, with Lift Plus 360 it was a breeze!”

Adhesive removers have been around for a while, but Opus have redesigned this to make it more user friendly.

Opus say:

Opus Healthcare, a division of Alliance Pharmaceuticals Ltd, has launched Lift Plus 360, the latest range of non-sting adhesive remover. Using the latest bag on valve technology, Lift Plus 360 is a highly effective range of medical adhesive removers that reduce the pain associated with the removal of stoma pouch adhesives. The new spray can be applied from any angle (360°) offering greater efficiency for the user and comes in two varieties.

The new range is an upgrade from Opus’s previous product, the Lift Plus. By removing the propellant to create Lift Plus 360, the product is no longer cold on the skin. It is also more environmentally friendly as the removal ensures less wastage due to greater product emptying.

Other benefits of using Lift Plus 360 include:

  • Reducing the pain associated with removing pouches and flanges
  • It will not irritate sore or broken skin
  • Dries instantly and no need to wash the skin
  • The spray can be applied from any angle (360 degrees), offering greater reliability.
  • The removal of the hydrocarbon propellant ensures:
    • The product is not cold on the skin
    • There’s more product in the can
    • Less wastage due to greater product emptying
    • It’s more environmentally friendly

To order a sample call 0800 458 7605 or for more information take a peek at the Opus website.

The site also has some great ostomy information so is well worth a look.

Sam x

This post was sponsored by representatives of Opus Healthcare.  I do a few paid reviews on this site but ONLY choose products and companies that I believe are a good fit for my awesome So Bad Ass readers and will always disclose when posts are sponsored.

A tin can or an ostomy bag – which would you choose?

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Remember a few months ago I told you about a crowdfunding campaign for Stoma Aid run by the Colostomy Association to give someone a #BagforLife ?

Millions of people worldwide have a 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.

What is Stoma Aid?

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.

Money raised with your help will help fund:
  • A dedicated staff-member to oversee and manage the Stoma Aid project as well as volunteers.
  • A warehouse where stoma bags can be collected and stored.
  • Education about stoma care in developing countries across the world.
The project is supported by the Colostomy Association – a national charity that supports people with a stoma throughout the UK.
Can you spare a few pounds today?  Your cash can help change this.  In the UK we are so lucky that we have the NHS to support and fund our bags, we don’t have to worry about it.  I can’t imagine having to choose between an ostomy bag and feeding my children, can you?
Even if you can’t give any money you can still help make Stoma Aid a reality.
  • Share our campaign on Facebook, Twitter, Instagram and other social media.
  • Tell your friends, families and colleagues about Stoma Aid.

Stoma Aid will change the lives of thousands of people across the world. Change someone’s life and give them a #BagOfLife.

 

Thanks

 

Sam xx

 

 

Pelican Healthcare Live Your Life roadshow – Birmingham

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I’m thrilled to let you know that I will be at the Pelican Healthcare Live Your Life roadshow this Saturday in Birmingham.

From 10.00 until 3.00pm at Millichip Suite, West Bromwich Albion Football Club

The Hawthorns, West Bromwich, West Midlands, B71 4LF

I will be doing a talk in the morning and afternoon about self esteem, body confidence and ostomies.

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There will be tons of support and information and other interesting talks through the day.
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Feel free to drop by with your family and friends, anytime between 10am and 3pm. If you have any queries, or would like to confirm your attendance, you can contact us by:

Email –

Freephone – 0800 318 282

Register now to receive a free goody bag on entry!

I look forward to seeing you there! If you live too far away do check out the Pelican website for details of other roadshows.

Sam

Sexualising disability or normalising life with an illness?

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As my photographs of an old photo shoot with my stoma have gone viral last week, I have been subject to a few comments about sexualising disability (and some just telling me that ostomies are gross and I should put it away, but that is a WHOLE other story!!!) and I wonder am I guilty of that?

The short answer is fuck yeah! And you know why?  Because my sexuality, my femininity and the person I am didn’t get removed along with my colon.  The long answer is about how disability is seen in our society and also how women are viewed in society.

In 2013 when I had my colectomy and an ileostomy formed, I did what we all do in times of uncertainty and I googled it.  What I found were some great charities such as Crohns and Colitis UK and I A Support, but what I wanted was a personal story, something that I could relate to.

Looking at images was even worse, there were either terrifying images of stomas that were infected or prolapsed or photographs of smiling old ladies… Nothing that I saw helped me, it frightened me, upset me and made me feel that life as I knew it was over.

And that is why a month or so after my surgery, I made the decision to have some photographs taken.  It helped that I lived with a super talented photographer! I wanted some images that represented ME.  The person I was before and the person I wanted to find under my scars, dressings and emotional pain.  I knew I was under there somewhere, and the camera helped me find myself again.

When I saw the photos I was so overwhelmed.  I saw some great images of me.  And then my ostomy.  It made me realise that I was still me, that my stoma was such a small part of me and all the other characteristics were still there.  It empowered me to speak out more, to share my photos and share my story.  And to this day, I tell you now, I am DAMN proud of every one.

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

People like to say that I did this for Facebook likes, for twitter followers or to boost my blog stats.  And I suppose they are right.  I share all my images because I want to reach as many people as I can who are feeling lost in their illness, who feel that the world has forgotten who they are and only sees their disability, to the people who want to know that life goes on after ostomy surgery.  I want to help as many people as I can and if sharing my images does that then bloody go me!

I would also like to point out that there are HUNDREDS of photos on this site and only a handful are what anyone could consider ‘sexualised’.  I wouldn’t say I sexualise my disability, I would say I normalise it.  I show photographs from every part of my life, there are photos of me playing with the chickens, hanging out with my kids, with my husband, my mum, in gym gear, at the beach… I show all parts of my life because my illness and my disability do not change all those parts of me.

I know that my audience feel that I help raise the profile of the diseases, that I support many and that I inspire others to speak out and to be brave.  I know this because they tell me so and I have to laugh at those who think this is simply an ego trip or a numbers boost!!

stoma ileostomy femininity black and white photography creative shoot

I don’t prescribe getting your hoo-hoos out to anyone, I do not suggest that taking your clothes off for a photograph is for everyone, in the same way that body building, dancing or wearing a bikini isn’t for everyone.  What I do talk about it self love.  I talk about body confidence and in taking positive steps to you living a happy, fulfilled life.  The path to this is different for everyone, for me as a photographer and a photographer’s wife it was through imagery.  I would have done EXACTLY the same shoots beforehand.

If I choose to show my sexuality alongside my disability and you don’t like this, then I suggest you click away, go look at a different site, or even better go read a book, talk to someone or make someone happy!  If my sexuality makes you feel uncomfortable, then please step away. It’s fine, honest!

But don’t slut shame me.  Don’t belittle my plight to make a difference in the world by judging me on the images that show my undercrackers.  It is so easy to use a woman’s body against them, to suggest that any showing of flesh is in some way a dart in the heart of feminists everywhere, to imagine that my professionalism is affected in any way by an image that shows my stoma.

I am a feminist in that I believe in equality for men and women, it is odd isn’t it that when we see the semi-naked photographs of men that there is no backlash, no one suggesting they are belittling the campaign by showing their bodies, yet when women do it, we are subjected to judgment and mocking.

sam cleasby stoma ileostomy photo shoot woman beauty

The facts are that I am a woman.  I have a stoma.  And I live in a country where I have free speech and the freedom to show images of myself.

The facts are that I make a difference.  I help many people and I do it in my own way.

The facts are that I am so bad ass and I will carry on raising awareness, supporting people and kicking ass!

 

Love Sam x