Posts

Shit happens…

“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 

Coloplast Care

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.

#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.

stoma ileostomy femininity #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.

stoma ileostomy femininity #stomaselfie woman with stoma ileostomy ostomy stoma images

 

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.

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

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!

#stomaselfie sam cleasby stoma ostomy photo shoots sam cleasby

 

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.

nasty Facebook comments trolling internet keyboard warriors #stomaselfie

 

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

 

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?

20140703-102856-37736478.jpg

 

 

Love Sam xxxx

It's my 8 month stomaversary!!

Eight months ago today I had surgery to remove the whole of my large intestine.

It’s been a busy and at times stressful 8 months but throughout it all I remind myself that life with an ileostomy bag is SO MUCH EASIER than life with Ulcerative Colitis!

20140502-170758.jpg

 

There have been good times and bad in the past few months, I have traveled to Vietnam and Australia and I have faced difficulties with developing a hernia and making the decision to go ahead with pouch surgery.

They tell you it can help to deal with the process of having a stoma to name it, my sister came up with the name Barack Ostoma which I think is brilliant, because my stoma, like me, is no regular boring one, it is an all singing, all dancing bad ass!!

In 11 days I will have my pouch surgery and wave goodbye to Barack, and though this feels like the right decision for me I will be ever grateful to these 8 months of living with an ileostomy bag, not only has it allowed me to come off all the many meds I was taking, but it has rid me of all the awful symptoms of Ulcerative Colitis that I had suffered with for ten years.  20140502-171128.jpg

 

It did something else though, it made me reassess the things that were important to me, the way I see myself and the way I want to live my life.  It made me a more confident person and it gave me the opportunity to share my story with all you dear readers, to make a difference to people with IBD, to raise awareness in the general public and to push myself into making decisions to speak in public and put myself out there as a mouthpiece for those suffering and living with chronic diseases.

It has made me a better person.

So on my 8 month stomaversary, I raise a glass to everyone living with a stoma, dealing with IBD or anyone living with chronic illness.  You all kick arse, you are braver than you think, stronger than you can imagine and are so bad ass.

 

Sam xxxxxx

Ulcerative Colitis and Stoma poetry

 

There was a pain inside me, it couldn’t be cured or healed

It ate away at the person I was, taking my time and my energy

It pulled me into the smallest room in the house and held me prisoner

The pills to fix were a poison, they give with one hand but take with the other

When even the soldiers no longer fight for you

The time comes, they will take the pain away

Remove the offending item, halt the bleeding, stop the war

My life changed at the hands of another

Suddenly there is light, there is a glimmer of joy

a feeling warms slowly, a hesitant smile plays on my lips

the battle is over, though there is still work that needs to be done

the person I thought had gone, was only hiding

She returns.

 

Sam Cleasby

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.

exceptionallyawesomehusbandsobadass

Thanks for reading

Sam xxx

Parastomal Hernia

Over the past couple of months I developed some swelling behind my stoma, I thought it was due to the heat, the humidity and the amount of activity I was doing whilst we were  in Australia.  But since we got back, the swelling didn’t really go down.  It is worse in the evening and goes up and down, its causing me some discomfort but not really painful.

I spoke to my stoma nurse who thought it was a hernia, but as I was due to see my surgeon she suggested that I refrained from any lifting and saw what Mr Brown said.  He confirmed that he thought it was a hernia and that he could repair it surgically but as I am probably planning the pouch surgery it would be worth just trying to deal with it and wait till the takedown surgery when my stoma will be removed anyway.

A hernia is when there is a weakness in muscle tissue that causes the intestine to bulge through.  Because a stoma goes through the abdomen it becomes a compromise in the muscles and hernias can be common in people with a stoma.  A hernia behind the stoma is called a parastomal hernia.  The term parastomal hernia is used to describe a bulge or swelling around or under the stoma that leads to problems with stoma function and appliance security. This usually occurs gradually and the hernia may increase in size over time.

Its probably a good idea for you not to google this term though… Some of the photographs are fairly graphic!

There are many factors that contribute to the development of a parastomal hernia including:

  • Coughing and sneezing.
  • Straining: this can happen when lifting heavy objects or duringstrenuous activities such as gardening.
  • Infection at the site of the stoma or abdominal wound.
  • Muscles becoming weaker with age.
  • Being overweight.
  • Poor siting of the stoma.
  • Emergency surgery.

The treatment differs depending on the extent of the hernia, mine appears to be relatively minor and so Im happy to wear a hernia support made for people with stomas.

parastomal hernia support

Exercise or Pilates, aimed at strengthening the core muscles, may help too.

For others the treatment will be surgery;

A tissue repair at the site of the hernia is a relatively simple procedure, but there is a high risk of the hernia recurring.

Repair and re-siting of the stoma to another location on the abdomen is a bigger operation involving a larger incision, but the chance of the hernia recurring is lower.

Repair and reinforcement of the hernia site with mesh carries a very small risk of infection but the chance of the hernia recurring is lower.

This information comes from the Colostomy Association.

As always with this blog, I am not a medical professional and all my thoughts here are entirely my own and in no way replace medical advice.  If you are worried you might have a parastomal hernia, then get in touch with your stoma nurse, doctor or clinic.

Love Sam xx

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.

20140117-222104.jpg

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