Pouch surgery date booked!

I finally have my surgery date! On the 14th May I will be going in for pouch surgery and parastomal hernia repair!

Im terrified but happy that it is booked.  Im feeling extremely nervous about the operation and recovery but I am sure that it is the right thing for me to do.

So I have two more weeks with Barack Ostoma before I get my new pouch…

 

sam cleasby

 

 

I will blog more this week about how Im feeling about everything, thanks so much for all your kind words and messages.

 

Love Sam xxx

Time away in Spain

Last week I had some time away in Spain, the stress of dealing with my stoma, the hernia and the upcoming surgery was just getting too much.  I am a positive person but it was all getting me down, I was really weepy and just felt so down and sad.  After hearing that my surgery was being postponed yet again I just had a bit of a breakdown, I felt so out of control and things just seemed too hard.

So my lovely husband suggested I have some time away, I looked at flights and then spoke to my wonderful Aunty and Uncle who live in Spain who very ,very kindly said I could spend a week with them.

I put aside the guilt that all mums feel as I was leaving my kids for a week, but I knew they were home safe and happy with their dad and so I packed a bag and headed off for a week in the sun.

traveling with a stoma

 

 

My cousins were over with some of their friends visiting their mum and dad and so I had a lovely family break and really felt looked after.  It was so nice to not have to look after other people for a week and to just have time looking after myself.  I had such a fantastic, relaxing time.

I had a few times where I was really uncomfortable with my hernia but the joy of being away with no kids was that I could go and lie down and rest with no guilt at all!  I also had a few stomach pains and a little dehydration but nothing that rest, plenty of fluids, a few painkillers and diarolyte couldn’t help.

I have come home with a new sense of positivity, feeling so much better and ready to face the next few tough months.  My stress levels have dropped and I just feel stronger mentally and though Im still frightened about the surgery and recovery, a week away from real life has made everything seem a little easier.

Here are a few photos from my week away.

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So this explains my absence for the last week, thanks so much for all your kind messages and emails.

 

Love Sam xxx

 

Getting away from it all

Today I spoke to the consultants secretary again, she says that he needs to see me regarding the test results from the anorectal physiology test and my surgery now won’t be till May.

There are two dates, one the 14th and one the 28th May. Either way it sucks big time that it will be another 4-6 weeks till my pouch surgery.

I’m gutted. I’m crying all the time, the stress has really got to me. Worse than I thought it would. I think I’m a quite tough person but right now I feel so broken. The crushing disappointment of working myself up to be able to deal with major surgery and then being let down again and again is heart wrenching and it’s all just got a bit too much.

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Everything is just getting to me, I feel fed up and pissed off with the world. I’m sick of crying, sick of being a whingy moan bag.

So I’m running away from home.

Yes, really.

Ok well not running because you know, hernia. And the husband and kids know about it.

I booked (some ridiculously cheap) flights to Spain and I’m off to see my Aunty and Uncle who live in Malaga, no kids, no work, no thinking of hospitals or surgery.

I need some time and space for myself and Timm suggested I had a bit of time to just destress, chill out and have space and time to relax and think about myself. Man, he is awesome!

So I’m off on Friday for a week in the sun!

I know running away from your problems doesn’t work but I’m thinking a brief time out of real life shit is much in order.

You can keep up with me on Facebook (So Bad Ass) twitter (@so_bad_ass) and Instagram (Sam Cleasby)

Love Sam xxx >

Surgery postponed

I got a call today from my consultants secretary saying that the preliminary date of the 30th April is being postponed.

Mr Brown wants to see me to discuss some matters before the surgery and so everything is on hold right now and I’m not sure why.

I asked if it were anything to do with my pre op but she said that all came back fine. I’m waiting for her to call again to let me know an appointment date to see the consultant and hopefully a little more about what the problem is.

Today sucks ass.

I’m feeling totally broken and beaten down by it all. My hernia is uncomfortable every day, I’m exhausted and feeling crap. I just really want the operation over and done with so I can start recovering.

When I feel like shit, there is one person who makes it all better, Timm, my husband. And so this afternoon we snuck out for an hour to walk the dog and talked through how we’re feeling. We acted like teenagers and even had a couple of ciders in a field!

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Giving nurses a bad name

I came across this picture on Instagram by nurse_student, now whether she thought it cute or funny I do not know but I am fuming.

 

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Id like to say that I responded with a calm, witty devastating put down.  I can’t.  I said “Wow.  I hope you are never my nurse, because if you acted like you wanted to throw up and took the piss whilst doing your fucking job, I would kick your ass.  You give nurses a bad name.”

Id like to explain how it felt when I saw this ‘joke’, I know that nurses have to deal with a lot and sometimes having a sense of humour is the only way to get through a shift, but nurses are supposed to be carers, people who are patient and sensitive.  This ‘joke’ made me cry.

Let me take you back seven months.  I had been through ten years of illness, pain, humiliation, meds and treatments and then just come out of major surgery to remove the whole of my fucking bowel.  I was hooked up to an epidural and had a catheter, I was dosed up on all manner of pain relief and had zero control over my body.  I was having to deal with the fact I had a stoma emotionally and physically.  Having to learn a new set of skills to be able to change my bag and clean myself as well as ‘mourning’ the loss of my bowel and learning to accept my new body.

It was the hardest time of my life.  I have never felt so overwhelmed, exhausted, terrified and alone in my whole life.  I was entirely dependent on those around me and I felt like shit.

Then I had my first leak.  I was covered in shit from my chest to my hips.  It was everywhere and I was mortified, I couldn’t stop crying and I was so embarrassed.  I rang the bell and a nurse came.  She looked at me and said “Oh dear, you poor thing! Come on lets get you sorted.”

She cleaned my skin and dealt with this mess like she was washing the pots.  She smiled and chatted and batted away my embarrassed apologies and thanks.  She made this horrific situation a million times better.  She spoke of how awful she knew I felt but how each day life was going to get easier, she was kind, caring, sensitive and just amazing.

The second big blow out leak I wasn’t so lucky.  A nurse came and she tutted.  She cleaned me up but barely spoke and made me feel like I was an inconvenience to her.  When she left I cried myself to sleep.  I felt like a baby.  I couldn’t even clean myself, it was so heart achingly depressing.

The third time I got a nurse who just put a cardboard bowl of water on the table in front of me and said I needed to learn to do it alone.  I couldn’t sit up, let alone stand.  I had to clean myself up the best I could including washing shit out of the 7 inch stapled would on my stomach.

These nurses, like the woman who posted this ‘joke’ should be ashamed of themselves.  You know what? We all know that dealing with another persons shit isn’t nice, but when you become a fucking nurse then you have to suck it up buttercup! If you don’t like it, if it makes you gag and makes you want to share ‘hilarious’ memes on the internet, then you are IN THE WRONG JOB.

So today Im angry.  Im not weak and sick in a hospital bed right now, I have some energy and will stand up for myself and other people with an ostomy when I see these insensitive, vile jokes.

I just hope that people will read this and understand that what may be a silly joke to you, can devastate a person reading it.  It may seem funny and you may tell people to lighten up about it, but put yourself in the shoes of the person you are mocking.  Or imagine that person is your mum or child and see how funny it is then.

 

Sam xxxx

 

I have a (preliminary) surgery date!

I had my pre op appointment at the hospital this morning, I was nervous about what they would do but it was a really simple process of a few different health checks.

I had bloods taken, they are doing FBC, checking markers etc but also need to do a check on blood type as apparently if you have had a blood transfusion your antibodies can be very different.

They did swabs for MRSA and gave me a pack of swabs to do it again at home before the op.  This is because Im classed as a ‘regular visitor’ to the hospital… No shit Sherlock!!

They took my height and weight measurements, Im pleased to say I have lost just over a stone in the past three months.  Im aiming to try and lose a little more by the surgery date as the consultant says higher weight increases the risk of complications.

They then just asked A LOT of questions about my health and talked through my stay in hospital.

They also talked to me about having a high protein diet which apparently increases recovery rates and gave me these pre op drinks, it is a clear, lemon-flavoured, carbohydrate drink given as part of treatment before surgery.  “Undergoing surgery will put stress on the body. Research has shown having a carbohydrate drink reduces stress on the body. It has also been shown that it may reduce loss of muscle following surgery, which aids faster rehabilitation, and shortens hospital stay.”  Clever stuff!

My appointment took about an hour and a half and everyone was very nice, but had no idea on dates.

So I called my consultant’s secretary who let me know that a preliminary date of 30th April had been put in for me, they need to check all my pre op tests are ok and will be confirming it asap.

So I could have just 3 weeks left of being an ostomate!!!

Ill update as soon as there is any more news.

In the meantime, can I just take this time to say a very Happy Birthday to my most favourite bloke in the world, my awesome husband Timm.  Im sorry bubs that you had to spend your birthday morning in hospital with me!! We spent the rest of the day shopping, having lunch and then had a walk with the kids to our friends house for a gorgeous birthday tea.

Timm is just amazing, he takes everything to do with my illness and surgeries in his stride and just makes life better.  He is my absolute rock and I couldn’t live without him.

Happy Birthday Timm xxxx

timm and sam cleasby

timm and sam cleasby

When you feel life is dragging you backwards…

When you feel life is dragging you backwards with difficulties, this quote really hit home today.

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I came across this today and it made me remember to just stay positive.

 

 

Sam xxx

Things to do when you're feeling sad

As you may know I have had an anxious week of worry, my usual optimism and positivity failed me massively and I just felt sad.  Really sad.  Lay flat on you face, eat your body weight in Ben and Jerrys sad.

And so I thought Id do a post on the top ten things to do when you feel sad.

 

1. Comfort eat.

Contraversial Im sure, but sometimes there is nothing for it but to eat ice-cream or cake.  For me, though I do love a dollop of Ben and Jerrys, I like to cook something lovely for myself.  The act of preparing and cooking takes my mind off the stresses and strains that Im facing and I love to sit and eat something amazing.  Whether it is a gorgeous salad with avocado and marinaded juicy chicken or a perfectly cooked rare steak.

Comfort eating doesn’t have to be junk food, but from time to time you really need to fill your soul.

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2. Hide in your cave

My cave is deep under my duvet, curtains closed, fluffy feather pillows, occasionally an eye mask with my iPod and headphones on.  Sometimes I need to go there and lick my wounds and have a good old cry all alone.

I recently discovered a new cave in the hammock I set up in my garden! I take a pillow and blanket and I set it up so as I lay there I can only see sky and tree.  It is the perfect outdoor cave!

Cave clothes tend to be jamas or joggers and old tshirts for me…

 

3.  Watch some terrible TV

Netflix is my friend.  Seriously I love my netflix more than is natural.  When Im feeling particularly sad I like to hunch down in the aforementioned cave and watch Ru Paul’s Drag Race, or romantic comedies (my guilty pleasure is The Proposal with Sandra Bullock) or documentaries or hours and hours of TV dramas.

Sometimes life sucks ass so hard that you need to disappear into a world of TV.

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4. Get pampered

We can’t all afford to run off to a gorgeous spa for the weekend, but we can give ourselves a manicure and pluck our eyebrows.  A face mask can cost a quid from the supermarket and if all else fails, a good old soak in the bath with a fuck ton of bubbles.

Doing things to make yourself feel good can only help.  If you can get someone else to give you a foot rub or paint your nails then all the better!

 

5.  Listen to the music of your youth.

If my husband hears me wailing and warbling along to Alanis Morrisette he knows to stay away…  Feeling shit reminds me of being an angsty teenager and so sticking on some 90s indie takes me right back.

Put on some music that reminds you of good times or terrible times and sing/weep/laugh your way through your malaise.

 

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6.  Get talking

In all seriousness, if you are feeling shit then the old adage of a problem shared is a problem halved is generally true.  Speak to someone you love and trust and let it all out.  We all have crap times in our life and we need to  speak to those around us, asking for help and advise is not a sign of weakness.

 

7. Do something fun

Whether it is a girls night out or a night in on the sofa, an evening bowling or a night at the cinema.  Do something fun, something that you enjoy.  It may be an effort to get the oomph to get going but it will be worth your while in the end.

 

8.  Think of all the good things in your life

It is so easy to get bogged down with the bad things, the things that are going wrong right now.  Its easy to say ‘nothing ever goes right for me’ or ‘this isn’t fair’.  I certainly have been saying these things this week.

But the reality is that thinking of all the shite will never make you feel any better, make a list of the good things in your life no matter how small.  I know this sounds cliche and cheesy but writing it down makes you have to think about it.

 

9. Have a big cry

A big, snotty, wailing wall, woe is me sob fest.  Seriously, get it all out!!!  Get the tissues flowing, snot down your arm, arms thrown to the skies.  Shout LOUD, kick your feet, lay flat on your face.  Scream, swear like a sailor, call the cat a c**t.

There.  Feel better?

Our lives are so controlled, we keep our emotions in check and have that British stiff upper lip, but sometimes you need to just let all that emotion run free.

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10. Tell yourself that everything will get better

No matter how shit things are right now, things will get better.  We have a saying in Sheffield “It’ll be reight”  And you know? It will.  Life is all about the peaks and troughs and so you have to take the good times with the bad.

Sometimes it doesn’t feel like that, but our only choice is to believe everything is shit and always will be or to try and find that silver lining and think that things will get better.

 

it'll be reight

 

 

Love Sam xx

 

Are you ever embarrassed to talk about your illness?

This is the question my daughter just asked me. My answer was yes. Sometimes.

But I talk about it anyway to stop the embarrassment for other people. The more we talk about ulcerative colitis, crohns, stomas, pouches and just poo in general, the less it will be a taboo or something to be embarrassed about.

People don’t like discussing matters of the arse do they? And this is the reason that people will suffer needlessly in silence when they begin with symptoms of the bum variety.

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I understand those feelings but want to fight against them. Sometimes a mum at the school gate will say she’s read my blog. My mind works furiously thinking about what I’ve written about the past few days! And then I smile and thank them, for every person who reads may just have learnt something. Maybe I changed their thinking about something? Maybe I have taught them a way to have a discussion with someone else who has a chronic illness. Or maybe I just made them laugh.

Whatever their thoughts I am grateful that my website has delivered a message to so many people. It means so much to know I’ve had over 40,000 views in the last few months.  I get emails from all over the world from people telling me I helped them.

And so when the embarrassment begins to creep hotly onto my chest and face, I think about the people I have helped and that embarrassment becomes pride.

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This blog, my writing and public appearances, the photographs and the hours I put into developing programmes to help kids with body confidence and self esteem, all of that stuff gives my illness a purpose. And that makes things a little easier when I’m ill, exhausted, taking meds, having surgery or recovering.

I hope if nothing else I am teaching my kids to never be ashamed of their bodies. To embrace all parts of themselves and to be proud of themselves no matter what journey their bodies take them on.

Thanks for reading, please feel free to share this and join me in the fight to stop poo being taboo.

Love Sam

Packing for hospital

I thought I would do a post on packing for hospital as it has been on my mind recently. I’m due to go in for my pouch surgery in April though I don’t have a date yet and so I am getting organised.

My two week stay in hospital last time was unplanned and last minute and so I had to rely on my husband to bring things in for me.

This time I’m packing the things that will make my time in hospital just a tiny but easier. Of course these things aren’t essentials but the little things that will make my next two week stay a bit nicer.

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So I have 5 changes of nightwear, I know this may seem a lot when I can have things taken away to be washed and others brought in but last time I took two pairs and asked my husband to bring in more. He brought in my painting scruffs, you know the paint splattered joggers with a saggy arse and a band tshirt from the 90s that has hair dye on the neck line? Yes, those. That’s what he brought in.

This time he is only allowed to bring back the things I send in for washing…

I bought myself new jamas and nighties, I just thought I’ll be wearing them a lot for the next few months so it was worth treating myself to some kick ass ones!

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Big black pants – the comfier the better.

Comfortable bras. I bought three ‘gym’ bras that don’t have underwire and seams. Last time I hated sleeping in a bra as it was uncomfortable but didn’t feel nice without a bra at all. These were from primark and were £2.50 each.

Slippers – slip on, backless slippers. I didn’t have any last time as I don’t wear them at home and thought my slipper socks would be fine. But when you can’t bend to put them on its a pain in the arse! I ended up in my husbands old brown slippers. You do need something easy to slip on and off for if you need to go to other parts of the hospital or just to wander to the tv room.

Dressing gown for walking about or going to the loo/for tests.

Towels.

Wooly hat – i get a cold head and like to have a hat to hand. Also good for covering up terrible hair!!!

Books – a couple of good books I’ve been trying to get read for ages plus my kobo ebook reader. I also have a little book light for reading in the middle of the night if you don’t want your lamp on.

Puzzle book to pass the time.

Pens – pens are power in hospital. I have two and will be guarding them with my life!!!!

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Now on to toiletries…

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So I have the usuals of flannel, soap, shower gel, shampoo and conditioner, toothpaste and toothbrush.

I also have a comb, bobbles, hair bands and grips.

Moisturiser – my skin was so dry last time!!!

Dry shampoo – my hair gets greasy quickly and as it is dyed, thick and long it is a terrible faff to wash and so I bought this spray to help keep clean in the early days before I’m ready for showers or baths.

Lip balm, tweezers, deodorant, face cream, face wipes, baby wipes, hair serum, nail file.

A mirror! Such a small thing but If I wanted to check my hair or pluck my eyebrows or anything I had to go to the bathroom. So this time I have a small compact mirror.

Anti bac gel – I know this is everywhere in hospital but when my kids visit they’re constantly touching the floor then wanting a cuddle. Or running their hands on the wall then touching me. Hospitals are such germy places and so having a little bottle if OCD juice makes me feel better.

Mini straighteners! Now I’m not a vain person. But I am a person with wavy, wild hair and a fringe. I have no idea if I’d actually use these but they were a fiver and so I thought I’d stick them in the bag just in case!!!

Eye mask – this is a biggy for me! I can’t sleep with lights on in hospital and they never turn them all off. This eye mask means I can grab a few hours darkened sleep no matter how many lights they have to leave on!

Other things I’ll pack will be a coin purse with a few quid in it, head phones for listening to music or watching films and my phone and charger.

My mobile was a life saver in hospital. It meant I could call or text whoever I wanted, that I could keep up with friends on Facebook and twitter. I watched films on Netflix which was fantastic!!! And most of all I could write and blog my heart out.

I hope my list is of some help to people getting ready to go into hospital. I know some things may seem silly or unnecessary but when facing at least a couple of weeks inside it is nice to have things around you that make you happy.

The final things I’ll be packing are my penguin and koala. Yes I’m 32 years old, but my kids and husband bought me these and they mean a lot. I’ll be holding these tight on those long lonely nights and they’ll make me feel better!

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And my photos of the four most important people in the world. My husband and kids.

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So there we go, my guide to packing your bags for a hospital stay. I’m sure you won’t want all the things I take and that they’ll be other stuff that you will need but I hope it’s given you a bit of an insight and some help.

Love Sam

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