That time I met Dynamo and made him sign my ostomy bag…

This year, Timm, the kids and I headed off for a week at Glastonbury festival and had a whale of a time! We hadn’t been with the kids in 10 years and so it was lovely to revisit such an awesome place with our now teenagers, it was a lot less stressful than taking three under 7s!

We saw a lot of bands and had a very chilled out few days in the sun (yes! No rain!!), one afternoon we headed up to the Kids Field where the children still weren’t too old for a lot of silliness and painting and a lot of time sat in a big tent listening to them trying a ton of different instruments.  Then our youngest pointed over to a little tent that had been hosting a variety of children’s entertainers for the day, “Look!” he shouted “Dynamo is playing there!”

We looked at the small space that currently had a man making balloon animals and told him that it wouldn’t be the REAL Dynamo!! He insisted we went in and as we squeezed cross legged into the tiny tent we waited for a low budget version on Dynamo to grace the stage and low and behold, out steps the one and only real life Dynamo! Thom’s smug face screamed ‘I told you so!’

dynamo glastonbury kids field

So we watched a world class magician play to maybe 100 kids in this little corner of Glastonbury and were blown away.  Apparently he plays it every year and only kids are allowed at the front, he doesn’t do it for money but to instil a bit of magic into the lives of children.  How beautiful is that??

So afterwards, Thom points over and says, we can go meet him now! So we joined a little queue and waited, and out came Dynamo!  The kids met him and gave him a hug and got things signed and then pushed me forward – ‘tell him about your blog mum!!’ they shouted.

dynamo crohns disease ostomy bag

 

Dynamo has Crohns Disease and the way he has spoken about it has inspired so many people to not be quite so embarrassed of the condition and so I told him about the blog and just how wonderful he was for speaking out and then (and I know this is super weird!) I asked him to sign one of my ostomy bags!

 

And he did!

dynamo crohns disease ostomy bag

I never thought I would meet Dynamo, and I certainly didn’t expect him to sign my ostomy bag!!!

Sam xx

 

So I have something to tell you…

I have been quite open on here about the ups and downs of this journey of mine, through meds, hospital stays, 5 surgeries, months of recovery and the multitude of things going wrong, I have documented the lot.  There are times when I feel positive and upbeat and other times when I feel thoroughly defeated.

You may have noticed that I didn’t blog for a good few months this year (from April to July) which is the longest time I have abandoned this place for.  The reason for that time away is that I am really struggling mentally.  And after months of hiding my feelings and plastering a smile on my face, I decided to start seeing a counsellor a few weeks ago.

I haven’t told many people this, I suppose I just wanted to keep it for me for a while, to try it out and see how I felt about it.  I suppose there is a small part of me that is a little embarrassed, I am not from a place or family that talks about needing support or showing any vulnerability or weakness.  I know this is bullshit, but I am fast discovering just how much crap my upbringing and environment has subconsciously taught me.

I don’t want to go into it too much, it is very much a private thing between me and her.  But I do want to say that just a month in, and I am feeling the benefit of it week on week.  Don’t get me wrong, it is HARD.  We are talking about things that hurt. A lot.  We are talking about things that bring a lump to my throat to just think about, let alone say them in front of another human.  But it is helping me to start to learn about myself, to pull things apart and think about them in a new way.

It is helping me to not only understand myself, but to start to think about the people in my life and how they are feeling and how their actions have affected me.

sam cleasby blogger mental health counsellor sheffield

It’s weird, I am quite controlled, yet when I am there, things come out of my mouth that I didn’t even know I wanted to say, that I hadn’t even thought about.  And her responses sometimes floor me.

I struggled with the very idea of counselling because I struggle with people who make excuses for their own behaviour (she has made me realise that growing up with alcoholics and drug addicts will do that to a person!). And so there is a big part of me that feels like I shouldn’t be there complaining, that I should just figure my shit out and deal with it myself.

But another part of me has realised that figuring my shit out requires the input of a very clever and compassionate therapist at this point in my life. And that’s OK.

I thought about whether to share this with you or not, and I came to the conclusion that if I do this, I do it honestly. I don’t want someone reading this blog and only seeing the Mary Poppins, sweetness and light, positive rainbow side of me and thinking ‘oh. why do I feel so shit and she is ok?’ I want to share the highs, and the lows.

I want to tell you all, and myself, that even when things are awful, even when you want to hide in bed or run away, when you feel like you are a burden to those around you, when you wonder what the point in carrying on is, when the world feels like a dark an scary place; you aren’t alone, I am here and I understand.

Love 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.

Convex Ostomy Bags – for the wonky, uneven, hernia’d or unique ostomy

Do you have an inny or and outie? That’s a normal belly button type question as we know that people are all different (I’m an inny just so you know, but with the amount of surgeries I have had, it is not the one that Mother Nature blessed me with!)

It’s odd as we totally get how unique and different we all are in every other part of our bodies, yet when we get a stoma, we assume that they should all look exactly the same and behave in the same way, when of course, they are all as unique to us as our bellybuttons are.

 

sam cleasby blogger ostomy ibd woman with a colostomy ileostomy bag

When I got my first parastomal hernia, I began to leak all the time.  My usual bags were just not fitting correctly, and I assumed that I must be doing something wrong.  It was only once I called my stoma nurse and not so bravely wailed down the phone to her, that I even heard of a convex bag.

Usual bags have a flat and soft flange that sticks itself around your stoma and to your stomach, a convex bag has a dome shape to the flange which pushes in around your stoma to make a better seal.  I originally turned to convex after my hernia, but there are a few other reasons you might want to try a convex bag.

After one of my surgeries, I ended up with a recessed stoma, it was kind of sunk in on one side and luckily I knew about the convex bags, so went straight to them.  If you have creases, dips or moats, or find yourself using a ton of paste or rings, you might really benefit from trying a convex bag.

I hear from far too many people saying they live with daily leaks or uncomfortable ostomy bags and it really saddens me.  We aren’t given that much information about the amount of choice we have in our bags, to be honest, I didn’t even know there was more than one brand when I first got mine as I just had what the hospital gave me.

We are super lucky to live in an online world where you can find out so much information, if you have an ostomy, even if you are happy with your current bag, then please go and do some research.  Take a look at ostomy brand websites and check out their full ranges, call them, email them, get samples and try them out.

convex ostomy bag

I tried the Aura Convex bags recently for exactly this reason, I want to keep up with all the latest technology and the newest bags that come out, so I am always sure of what is best for me.  I loved the super soft feel of these bags and the flange felt well stuck on helping with confidence.  Though it is convex, it sat really flat against my tummy meaning it was invisible even under a tight dress, the fit was nice and I had no leaks or issues whilst using them.

So inny or outie, flat, hernia’d, wonky or creased, just remember that you always have a choice with your bags, if you want to try something new, that is your right, speak to your stoma nurse or head direct to ostomy sites and trial your own.

Let me know your experiences of convex bags!

 

Sam xx

 

 

 

This post was sponsored by Clinimed, I occasionally work with companies, but I will only ever give honest reviews and every business I work with are personally trusted by me.  My audience is brilliant and so I only want the best for you guys!

 

My perfect family… Glastonbury 2017

“You have such a perfect family!”

I got told this after sharing photos of our trip to Glastonbury this year and so I thought I would share a few pics of my perfect family.  We never argue, the kids are always on perfect behaviour, our home is a sanctuary of calm, peace and love.  There is never a raised voice, never a curse word muttered.  We all just live in harmony.

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

glastonbury perfect family parent blogger sam cleasby sheffield

I mean, of course, that is all bullshit.  When I got told how perfect my family are based on these images, it made me think about how we come across on social media.

Yes, we had a wonderful time but I didn’t take photos of the guilt I felt when I had to nap every day. I didn’t take photos of the ostomy bag leak and me crying my eyes out. I didn’t take photos of the arguments the kids had or the time my eldest lost my youngest in a festival or the anxiety attack I had at 4am. I didn’t take photos of the difficulties of raising teenagers and the conflicts they are going through. 

I didn’t take photos of three kids in a car, arguing over who is manspreading leading on to a battle over why the term man spreading is or isn’t sexist and a discussion about who had the biggest balls.  Nor did I photograph the sheer anxiety of letting your 16 year old into a mosh pit alone, or the look on the youngest’s face when he found out the big two didn’t want to take him to see a band.

I didn’t take photos of my worries that my hernia was returning or the feelings of sadness and fear I had despite having this lovely family time. Or the struggles in keeping a relationship going through years of chronic illness.

I love my family, they are wonderful and I am so lucky to have them. But photos on social media only show the best of times so when you have those feelings of worry when you see everyone else having a seemingly perfect life, remember that we are all fighting our own battles and comparison to others is unhealthy and really doesn’t help!

Are my family perfect? Hell no!!!! But we get through each day and share the happy photos to celebrate the times it goes well.

  Sam

Loose Women!

A few weeks ago, Loose Women (the ITV daytime show) ran a campaign called #MyBodyMyStory after they all posed for an image in their underwear.  It was all about women celebrating their bodies, however we look and so of course, I decided to send in my photo and then hooted with laughter and giddiness when they went and showed it.

Yey #mybodymystory @loosewomen #ostomy #sobadass

A post shared by So Bad Ass (@instastoma) on

 

Yey!!!!! #mybodymystory @loosewomen #ostomy #sobadass #ibd #proud

A post shared by So Bad Ass (@instastoma) on

 

Any excuse to flash my bag, eh?!

 

Love Sam xxx

Reaching 8000 followers on Facebook!

I’m so thrilled to hit the 8k mark on Facebook!! For me, I love the communication and the feedback I get from my readers and so I love it when you follow me on social media and get in touch!

I try my best to reply to every person (apart from those weird ones who show me their willies or say mean things!) who gets in touch.  I get hundreds of messages and so if you are reading this and wondering why I didn’t get back to you, there is a chance that I missed it so please do try again.

sam cleasby ileostomy colostomy bag blogger body positive so bad ass

If you don’t follow me on Facebook, do head over and click like.  I am on there most days, so stop by and say hi!

You can also follow me on twitter, instagram and youtube.  I have a snapchat, but to be honest I never use it apart from to take pictures of me looking like a puppy and saving them to my camera roll!!

No, you're refusing to get out of bed and playing on Snapchat!! #allfilter #workingmagic #catfish 😂🙈

A post shared by So Bad Ass (@instastoma) on

Thank you all for the wonderful support

 

Sam xxx

Iron Infusions

I have finally been signed off from my surgeon!!! Hooray!!! It only took 3 and a half years! Though I am sad to not be seeing the wonderful Mr Brown any more, it is a huge relief to think that unless anything goes wrong, I shouldn’t be having any more surgeries!!!

I am not under the medical team in Sheffield and my consultant is Prof Lobo, who is a legend in the Sheffield IBD scene (SUCH a niche scene!) – I saw him and asked him about this fatigue and if there was anything we could do about it.  He said that fatigue in IBD patients is so tough to deal with as often they will not find one specific reason for the tiredness.

He did my bloods and found me lacking in ferritin and so he prescribed iron tablets, I was to take 200mg of ferrous sulphate three times a day for three months and then we could reassess.  Unfortunately, the tablets didnt suit me at all, they made me so nauseous and sick, I couldnt concentrate as the sickness was so awful. I ended up having time off work because I felt so rubbish.

So I spoke to the specialist IBD nurse and she said that she’d book me in for an iron infusion.  I had to go to hospital and have some bloods taken, then the first infusion took about 25 minutes.  A week later I went back for the second one but that only took 6 minutes.

The put a cannula in your hand or arm and then flush it with saline, then attach a drip bag to a stand and leave you to it.  There is a chance of reactions to the infusion, so you have to stay for around 30 minutes afterwards to check you are ok.  On my second infusion, I came over really faint.  I got really hot and thought I was going to pass out.  Embarrassingly, I had just missed breakfast and was a little light headed, so a cup of tea and a slice of toast and I was back on my feet.

Lots of people have told me that after their infusions, a few days after they have felt the full benefits and been filled with energy and felt a million times better.  Unfortunately for me this hasn’t been the case, I can’t really tell the difference.  I still am exhausted all the time, I finish work and go straight to sleep, Im mainly found hanging out in bed in my pyjamas!

But it is step one on the road to figuring out the fatigue, Im glad we tried it, but ready to look at what else we can do.

 

Sam xx

Ive been nominated for a Northern Blogger Award

Thank you to the kind folk at the Northern Blogger Awards for nominating me in the Something Different category.

northern blogger awards

If you’d like to vote for me, then head over to this link and find me in Something Different.

“So here’s how it works – you simply have to scroll through the categories below, find who you want to nominate from the drop-downs, select them and vote! You don’t have to vote in every category if you don’t want to, and you can only vote once! So don’t waste it 🙂

VOTING ENDS ON THE 31ST JULY AT MIDNIGHT!

Votes will then be counted and go towards 40% of the shortlisters’ score, with 60% coming from the judges score.”

northern blogger awards sam cleasby sobadass

Thanks

Sam xx

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