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Healing an old stoma site from the inside out!

Just a word of warning, this post has lots of graphic and medical images of my old stoma site healing and may not be suitable for everyone.

So after the last surgery where they resited my stoma, the old site was left open. I was gobsmacked when I first saw it as I’d never seen an open wound like this before.

They explained that they heal better if they’re not sewn up and they want it to heal from the inside out and so it was packed with dressing and I saw a district nurse every day for just over a month till it healed up.

I had a big cry when I first saw it, it was 3.5cm deep and looked like a gunshot wound, they said it would take around 4-6 weeks to heal and I couldn’t believe that could be true!

So I took photos of the healing process as I found it intriguing and I thought it might help others going through the same situation.

What follows are the images of it healing, as previously warned, they may be upsetting to some so don’t scroll down if you don’t want to look!

 

 

 

 

 

 

 

 

Here we go…

Open stoma wound healing

12th June – 5 days post op

Open stoma wound healing

21st June – 14 days post op

Open stoma wound healing

27th June – 20 days post op

Open stoma wound healing

29th June – 22 days post op

Open stoma wound healing

1st July – 24 days post op

Open stoma wound healing

2nd July – 25 days post op

Open stoma wound healing

5th July – 28 days post op

Open stoma wound healing

11th July – 34 days post op

15th July – 38 days post op

18th July – 41 days post op

Open stoma wound healing

11th August – 65 days post op

So there we go! Isn’t the body brilliant!!!

I hope this helps anyone who is facing this sort of healing process to know that it does get better.

 

Loce Sam xx

She conquered her demons and wore her scars like wings

I saw this quote today and it felt very apt. It’s been a rough old road at times but I finally feel like I’m conquering those demons and feeling pride in my scarred body.

Conquered demons scars like wings

 

Chronic illness has taken it’s toll on me over the years, there are times when I just feel so defeated. I have this happy and positive online persona and in real life I always try and see the best in any situation but sometimes my heart breaks at the life that has been thrust upon me.

I was once asked at an event, if I could wave a wand and make my illness all go away, would I?

I felt a huge pressure to say no, that I would keep the life I have, but in reality, I would do it in a heartbeat.

sam cleasby so bad ass IBD blogger and writer

I know that my illness and what I’ve gone through has made me the person I am, it’s shown me I’m stronger than I ever imagined, it’s brought a bond with friends and family that can’t be surpassed and it’s also shown me other people’s true colours.

Its led me to having a blog that’s been read almost 3 million times (!) and has given me some amazing opportunities to be on TV, the radio anc in newspapers and magazines all over the world. I’ve spoken at events the length and breadth of the UK and travelled to Spain and soon Germany.

sam cleasby public speaker

Its brought new people into my life who I’d never have met otherwise. I’ve been to parliament. It led me to a job with Scope that I adore. I’ve met Philip Schofield for Christ’s sake!!!

But it has stolen so much from me.

It robbed me of precious hours, days and weeks with my babies. It’s taken it’s toll on my relationship. It forced me into missing days out, nights with the girls, holidays, events. It took my career.

It made me weak and fearful and exhausted. It stole a part of me, both physically and emotionally. It hardened me to the fuckwittery of others (wait, that’s actually a good thing!) but it also toughened my armour and made me push people away.

sam cleasby ibd and children

 

It caused my babies to be stressed and scared, making them fearful yet far too familiar with hospitals. It made them into young carers and forced them to face worries way beyond their tender years.

But we are here and we still stand strong.

Those feelings of guilt, fear, depression, anxiety, anger and a deep sadness that took a tight grip on my soul, all those feelings still linger yet they don’t have a hold over me.

My body that changed so much bears the scars of multiple surgeries but you know, I kind of love it. My scars show my journey, they are the proof that I survived. My ostomy bag is not worn with shame but pride and love and hope.

My demons will be waiting in the shadows for the rest of my life, but I’m finally feeling strong enough to face them, to fight them and to win.

Much love

 

Sam xx

Why I’m a proud flasher

Don’t worry, I don’t have a mac and follow people around at night flashing my boobies. But I am a very proud flasher of my osteomy bag and here’s why…

I have had many comments about the images I share of my ileostomy bag, most of them are positive but I get the occasional one that says ‘why are you doing this? We don’t want to see it! Is nothing private any more? Won’t somebody think of the children?!!!’

OK, I may have made the last one up! But the point is that people do seem offended by the fact that I happily flash my bag, and these comments always seem to come from a person in the position of priviledge who have never had to face the scary event of surgery to remove your bowel and being fitted with a colostomy or ileostomy bag.

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

So why do I do it?

I remember sitting in a hospital bed, having just been told that I had to have surgery and they were going to remove my entire large intestine and I would have a stoma, they were going to give me an ileostomy bag and I was in tears.  I was terrified, I couldn’t imagine how my life would be afterwards and though I was in part relieved to see an end to the severe and excrutiating pain, diarrhoea, accidents and misery of ulcerative colitis, I was also devastated.

I thought my life would be over, how would I ever feel beautiful or sexy again? What would my husband think of my new body? Would I ever wear a bikini again? Would my new body inspire disgust from others? Would I be able to love myself?  I sat in bed weeping and I felt so lonely.

I googled ostomy bags and it came up with frightening, medical images of sick, old people in bed wearing huge bags on their stomachs looking sad and frail.  And I felt numb.  Was this the end of life as I knew it?  This was in 2013 and there were no UK bloggers talking about this, no one sharing their images of a happy life, no positive, joyful photos, just misery and illness.

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

And that is why I started this blog. And that is why I am proud to flash my bag.

You see, though life can still be tough now, my ostomy bag changed my life for the better in so many ways, it gave me back a sense of control over my body, it made me feel well again, it stopped the pain and the isolation that 9 years of ulcerative colitis had caused.  And once I had the surgery, I realised that rather than fear and sadness, when I looked at my bag and my body I felt pride! I felt strong and powerful, I felt like I had dealt with a huge surgery and my body was still standing.

I realised that I never wanted another person to sit alone, frightened and crying in a hospital bed, wondering what their life would hold for them with a stoma.  I wanted to be the image that came up when they googled that showed them happiness, a fresh start, a normal life, damn it an EXTRAORDINARY life!

sam cleasby blogger ostomy ibd woman with a colostomy ileostomy bag stoma

I wanted to be a small ray of light in an otherwise frightening time that could show someone that life with an ostomy bag is a positive and wonderful thing.  That they could be what they wanted to be with their bag, that it wasn’t something to be feared or disgusted by, but to be proud of.

I wanted to show the world that my ostomy bag saved my life and that I am proud of it and myself.

I wanted to show that I can feel beautiful, sexy, strong, powerful and like ME.

I will never stop flashing my bag because every time I do, I get messages from people thanking me, saying that it helps to see others with a bag, that it inspires them to be proud of their bodies, that even if they don’t want to show their own bag, that they share my images to explain to their friends and family what they have.

ileostomy bag and fashion swimwear

Should everyone flash their bag?

No, of course not! It is a totally private and personal decision, I am happy to flash my bag but that doesn’t mean that everyone should.  I hope that showing my bag off will help those people who want to wear a bikini on a beach to do it with pride, to show them not to be scared of being themselves.  But some people are very private and don’t want to have their ostomy bag on show and their privacy is as important as my desire to flash mine.

sam cleasby chicken keeping allotments kiveton sheffield

The stigma around talking about poo is part of day to day life, generally if we talk about toilet habits, it is done by making fun about it.  We find it hard to have an honest and open conversation about our bowels and that needs to change.  This fear of talking bums stops people from accessing medical help when they have bowel issues, it stops them from asking for help and that can have a hugely negative effect on our health.

The aim of my blog has always been to help others, to stop poo being taboo and to raise awareness of IBD, Crohns, Colitis, Ostomy bags and invisible impairments as a whole.  If I have to continue flashing this scarred body of mine and showing off my ostomy bag to keep the conversation going then I will do this till the day I die.

Sam Cleasby blogger ostomy ileostomy colostomy stoma

I am a flasher and proud!

 

Love Sam xx

On BBC Breakfast talking about Blue Badges

So there has been an announcement that Blue Badge rules are going to be looked at to make it easier for people with an invisible disability to get them.

I think this is great news, and Scope have said it is “A victory for common sense.”

sam cleasby at bbc breakfast blue badges invisible disability

I was invited onto the BBC Breakfast couch on Sunday 21st January to talk about my experiences of the blue badge and why I think it is a good idea.  It was an honour to go on BBC Breakfast again, I was there a couple of years ago talking about accessible toilets and so it was great to be back!

make up room bbc breakfast backstage at bbc breakfast sam cleasby blogger bbc media city

Timm came with me and filmed some of the day and put together a great video, apologies for the quality of the interview itself as we had to use one recorded by a family member off her TV!

Take a look here

 

If you want to have your say then please take part in the Blue Badge consultation, you need to do this before the 18th March.

For more support on this matter, you can head over to the Scope Community and chat with other members about how this will affect you.

You can chat with me about this on my facebook page or on twitter.

 

Sam xx

The Ostomistic Life

Earlier this year, I was asked to feature in the quarterly online magazine The Ostomistic Life and I totally forgot to share it with you guys!

Take a look here, I am on pages 12-15.

the ostomistic life sam cleasby ostomy blogger IBD health invisible illness chronic illness magazine

What do you call your stoma?

When I first had a stoma, the nurse told me that lots of people name theirs and it helps them to come to terms with it.  I believe I wanted to tell her to f**k off, though I held my tongue.  I just wasn’t ready to have that conversation.

I am comfortable with my stoma now, but at the time I remember being laid in HDU and not wanting to look down. I just didn’t want to see it or deal with it, it was such a huge ordeal to know that my body had changed so much.  I remember laying in the bed and turning my head to the window, counting the slats of the blinds as they checked my wounds and changed my bag.  I couldn’t look…

When I did, I was shocked.  A stoma (when we are talking about an ileostomy or colostomy) is the end of your bowel that is pulled through your abdomen wall and stitched to the skin.  It looks like a red or pink, wet, soft lump with a hole in the middle.  So it is a big shock when you see your insides on the outside for the first time!

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

But over time, I got used to it quite quickly, I realised it was my life line, that it had saved my life and it was nothing to fear.  It was part of my body and I started to understand that people name their stomas as part of the idea of coming to terms with their new body.  Naming it can feel like you are welcoming it into your life.

I named my stoma Barack Ostoma… I wanted something funny but also quite grand!  I then had jpouch surgery and so Barack left office, as it were.  After 18 months of chronic pouchitis, I had stoma number two.  I only have one stoma now, it is a permanent ileostomy, but in numbers I have had, it is the second one.  This one is called Babadook, due to the weird creaking, farting noises it sometimes makes and the fact that baba and dooky are terms for poo, so it seemed to make sense.

sam cleasby blogger ostomy ibd woman with a colostomy ileostomy bag stoma

 

So my question is, what, if anything do you call your stoma, and why did you want to name it or why did you choose not to name it.

 

Sam xx

Body Positivity with an Ostomy talk

My talk for the Steel Belles WI in Sheffield about body positivity, ostomies, feminism, body hair and being fat.

 

Probably NSFW due to my sweary Northern gob…

 

 

You can buy the t-shirt I am wearing here and £2.50 from every sale goes to Purple Wings Charity.

India with an ostomy bag

In November last year, I did something ridiculous, like really, really stupid.  I can’t believe I actually did it! Two weeks after having a MASSIVE double hernia operation that cut me from sternum to pelvis, fixing an incisional hernia that had come out and got twisted and stuck and a parastomal hernia that involved completely resiting my stoma, I went traveling to India.

Do not try this at home! I am a big fan of travel and your illness shouldn’t stop you doing the things you want to, but two weeks after major surgery is a bit flipping moronic to be honest!!

The surgery was an emergency, I knew I had the hernias and there was an op to be planned for later in the year, but one day I sat on my bed and all of a sudden my hernia in my middle just fell forward and stuck there and was AGONY.  I could barely breathe, I called my husband and told him to get home from work, I knew something bad had happened.  I got to hospital and was sent straight for scans where they told me that I needed an emergency surgery.

It was scary as hell, but what was playing on my mind was that we had a trip to India booked for two weeks time.  My grandfather passed away last year and as a family we had planned a huge trip to scatter his ashes in my grandmother’s hometown.  He was a goalkeeper as a young man and the local football team had planned a memorial service to him with members of my family playing a game against them!! It was a three week trip that I couldn’t comprehend as I couldn’t even walk, but I knew I had to make it.

And you know what? I am so glad I did.  It was one of the most beautiful and soul warming times of my life, twenty odd family coming together and remembering, singing, laughing, crying.  Being there with my grandmother and my kids was so special, it is something I will never forget.

Was it tough? Oh, hell yes.  My surgeon allowed me to go but I had to give myself blood thinning injections every day for the whole time we were away.  I could barely stand let alone walk and so we got a wheelchair. I was on painkillers and all manner of meds and was high as a kite some of the time.  I was exhausted and there were times when I slept where I fell.  But luckily I had my awesome Timm and the kids right by me, they pushed my chair, they held my hand when I had to inject myself, they let me rest and had fun with me when I was awake, they made it possible and I am so grateful.

india with an ostomy taj mahal in a wheelchair sam cleasby travel blog

So the trip itself, we flew to Delhi where we met up with a cousin who looked after us whilst we were there and took us all over this breathtaking city.  We had a day trip to the Taj Mahal (in a wheelchair!) and we explored some amazing sites.  It was hot, dusty, sometimes smelly and quite overwhelming but it was an experience.  As a bolshy feminist woman, I have to say that Delhi isn’t my favourite spot, I found most men either dismissive of me, or aggressively suggestive and I found that really difficult.  It’s the only place I have ever been where I felt that I couldn’t walk down the road on my own, there was a point where I felt so uncomfortable by a group of men surrounding me that I latched on to my cousin’s male friend as though he was my partner.  That doesn’t sit well with me and I hated that I felt so powerless and vulnerable.

india with an ostomy taj mahal in a wheelchair sam cleasby travel blog

From Delhi, we flew to Goa for a week’s relaxation in the sun and it was heavenly! Goa (and India in general) is not wheelchair friendly, accessibility is not a key feature in anywhere we went and if nothing else, it made me appreciate living in a country where at least we are trying!  Goa also gave me chance to wear my awesome cat swimming costume from Vanilla Blush, who make ostomy underwear and swimwear.

vanilla blush ostomy swimwear

It was beautiful and I would love to go back.  In Goa I had an issue with my stoma that got a bit scary, it sank in completely and disappeared into my body meaning that every bag was leaking everywhere, that meant my skin was red raw and bleeding and I couldn’t move as bags were literally slipping straight off me.  In a 24 hour period, I used 12 ostomy bags!!!

I was in a panic, but I texted my stoma nurse who calmed my nerves a little and advised me to take lots of loperamide and ensure I wasn’t getting dehydrated by taking dialyrites.  I felt so shit, here we were in this amazing location and I couldn’t leave the bathroom!

Luckily Timm came to my rescue.  He took the mattress from a single bed and dragged it onto the balcony, he layered it up with bed mats, towels and pillows and made me a day bed where I laid looking out over the most perfect beach and sky, bag off, catching poop in a tissue and getting air to my skin.  It was a moment where I could have felt really sorry for myself, but instead I thought about how my view could have been a hospital bay and if recovery at this point meant laying in front of this vista then life couldn’t be too bad!

india with an ostomy travel chronic illness goa

From Goa we headed to our family home in Mizoram, Aizawl to a fabulous family welcome.  Family had flown in from all over to congregate in this very special place to celebrate a very special man.  From start to finish, it was almost overwhelming in it’s wonder, the football match was emotional beyond belief but watching his ashes hit the pitch where he had played 70 years earlier was astounding.

aizawl football club herbert vaughan match memory Sheffield

The family parties, food, singing, laughing, crying, the sites and sounds, the connection and the wonder was all pretty much the best experience of my life.  Sitting with my cousins in a land so far from our own homes but seeing where our grandmother was born was awe inspiring.  Seeing so many family members coming together to fulfil my grandfather’s dying wish was spectacular.

aizawl football club herbert vaughan match memory Sheffield

Ostomy wise, there was a rather horrific hiccup.  You know the warnings of Delhi Belly? Well, we got Aizawl Arse… I have no idea if it was the food, water, a bug or all of the above but I got the worst belly of my life.  I sat on a toilet with the bottom of my bag open into the loo and watched poo run out of it like it was coming from a tap for about 25 minutes…

It was at this point where I was glad I was a seasoned stoma owner as I think I would have panicked if not.  I knew that if this passed in 24 hours then it was travellers tummy and I would be fine, but I knew that at the rate I was losing output that it would be dehydration that would be the ruin of me, and so I made up 2 litre bottles filled with dialarytes and sipped on the constantly, I was sat on the toilet drinking them, gagging, puking and shitting but I kept going.

sam cleasby ostomy travel blogger india ileostomy ibd

Dehydration is so underrated, especially if you have a stoma, it isn’t about being a bit thirsty, it is about your body shutting down because it doesn’t have enough hydration.  Remember that water is not the best thing in these situations, a rehydration solution is needed, if all else fails, it is sugar and salt in water or even Coca Cola! Just drink, little, often, the whole way through.  It was the worst 24 hours ever, that bathroom was a hellish place but luckily it soon passed and my litres of rehydration did the trick and I was straight back up on my feet!

Timm got it the following day and he said he has never in his life been so ill, he wouldn’t listen to me about drinking and ended up being vaguely ill for weeks.  I honestly think it is because he puked and shat out ever electrolyte in his body!

baskets of chillies india

Travelling with an ostomy so soon after surgery means being hyper aware of your body and your needs.  I knew I needed to listen when I had to rest, I ate well and drank plenty, I made sure I avoided local water and ice and rinsed fruit in bottled water.  I enjoyed myself but also allowed myself time to recover.

sam cleasby mizoram aizawl

My other advice is to be prepared.  This. is. vital.

Ostomy bags – take at least twice as many as you think you will need.  I usually change my bag every 2 or 3 days at home, but planned for once a day for the trip and then doubled it.  If I hadn’t, then the Goa experience of 12 bags in one day would have screwed me completely!!!

Plenty of supplies – dry wipes, any creams, pastes, rings etc that you use. Pack anything you COULD need, so if you occasionally use paste but not often, definitely pack it.

Medication – All your usual medication, in it’s original packaging with either a letter from your doctor or your repeat prescription.

Ostomy Card – I got one of these travel cards from my stoma nurse, it has an explanation of your stoma in several different languages.  We realised that it was in Hindi and so used google translate to print it out in the native language of the country we were visiting.

Lots of waste bags – obviously needed for bag changes, but also good for sticking soiled clothes in till you can get them washed.

Dialaryte (or any other type of rehydration powders) – LOTS of them! They are small and easy to pack in and can be a literal life saver!!!

A readiness to listen to your body and a sense of humour!

mizoram aizawl india

I look back now and I can’t believe we actually managed this, but though it was crazy, I have to say, I am so pleased we did and I am proud of myself.

sam cleasby rovi hmar vaughan

Love Sam xx

“Oh, I don’t know how you cope!” (sad face)

I get this from time to time, the sad face, head tilted to one side, sometimes there are actually tears in the eyes.  The look of full on pity, perhaps a hint of ‘thank fuck it’s not me’ mixed with horror. 

“Ohhhh, I do t know how you cope!” 

I cope because I have no other choice.  I actually hate the word ‘cope’. It’s nonsense isn’t it?! Coping simply means getting through each day, each hour, each minute.  There’s no opt out in life (well, there is but let’s not go there), you can’t choose to not be ill one day, you can’t pop off your stoma and reattach your arsehole.  So asking me how I cope sometimes feels like you’re asking how I am still alive.  How I’ve chosen to live even with this disability. 

Perhaps I’m being over sensitive, but sometimes I can’t fucking stand the sad looks I get, the pity, the tilted headed frown.  

When I talk on here, in public, on social media, it’s not because I want your sympathy. I just want you to understand a little more. I don’t want to feel like you are appalled by the realities of my illness, I just want you to know what they are. 

I had a big leak recently and someone saw what had happened and the aftermath. They said with utter horror and sadness “ohhhh Sam, it’s just awful!!! I don’t know how you can live with this! How do you cope?! I couldn’t do this!”

I don’t think they meant to be hurtful, I don’t think they realised that their words hurt me far more than the blockage that had caused my bag to block up and push away from my skin.  


Perhaps I’m being unfair in expecting understanding without sympathy, care without pity.  After all it’s hard enough to understand my own feelings let alone expect others to know how I need them to react. 

Just remember for the future though that I really don’t want you to feel sorry for me.  We can talk about it, we can say that it’s shit (with every pun intended!), we can discuss how it’s sometimes really, really fucking hard to have a chronic illness and a disability. 

Take my lead, if I’m crying then please care for me and give me a hug. But if I’m just dealing with my usual day to day life, be aware that your pity can make me feel like I’m a second class citizen, it makes me question your thoughts on me and my life.  Your tilted head sad face may be well meaning but feels patronising as hell. 

✌️ & ❤️ 

Sam XX