And sometimes you need to wear sequinned knickers…

Today I wore clothes for the first time in almost three weeks!

Three weeks of jamas!!!!

And to make me feel better I just had to wear the sequinned knickers…

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You can see the top of my scar here now the staples are out. It’s pretty big but scars are cool, right?!

My bag is HUGE, they give you the biggest easiest ones to learn how to deal with them in the early days. I’ve seen the ones I could move onto and they look tons better, easier to disguise, easier to fit under clothes.

And sometimes you just need to wear sequinned knickers…

Love Sam xx

Self Pity Vs Staying Positive

I think in general I am a fairly positive person. I really try not to wallow in self pity and I always try and find the silver lining. Not always of course, but on the whole I really try.

I’m struggling at the moment. I want to shout and scream like a toddler. I want to bang my hands and feet on the floor and get all Chinese crying baby. I want to say ‘ITS NOT FAIR!’

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I feel like I’m a fairly decent chap, I’m kind and caring and I love my friends and family. I try hard to be a good person, I think of others before myself and I try to put more niceness into the world than badness. So it’s hard when I feel like I’m getting dealt a shitty hand! If I believed in a God if be thinking that he had something against me right now!!!!

Part of me would find it so easy to sink into self pity. Part of me wants to lay in bed with my curtains closed, Alanis Morrissette on full blast, a bottle of red wine and a box of tissues… Crying, weeping, wailing. A good chunk of drama, hand to forehead, perhaps some swooning.

But you know what? Logically I know that’s not going to help ANYTHING! It won’t make me feel better. It won’t stop me being in pain. It won’t take away my stoma, it won’t heal my body from surgery. It won’t bring back my doggy.

It won’t stop me feeling sad. It won’t stop this deep grief inside. I’m grieving Elvis. But I’m also grieving my bowel – that’s an odd one!!! I’m grieving a ‘normal’ life without a bag.

So I make a choice. Every day I make a choice that however this day goes, I’m going to try to deal with it positively.

Don’t get me wrong, I still have my moments. When I’m sad I will have a cry and a bug cuddle with Timm. We talk a LOT. About how I’m feeling, how Timm is feeling. About how I am physically, mentally and emotionally and that helps so much.

I’m not suggesting I’m a bundle of sunshine!! I think it’s really important that I talk about the negative things as well as the positive. This blog is helping me so much to be able to pour my emotions onto the page.

But I think the most important part of my recovery is going to be an emotional one. So I try. Every day I try to stay positive. To be mindful. To think of the good things in my life. To stay centred. To take ten minutes to meditate (yes really!!!!). To appreciate. To be grateful. To love. And to be loved.

Being happy is an option. No matter how shit life may seem, whatever is thrown at you. You can make the decision to try to be happy. Take control of whatever you can, no matter how small. I’ve realised control is quite important to me, I realised that when I lost it and suddenly was post op in a hospital and couldn’t move, couldn’t clean myself or do anything. But I can control how I react to it. So I try to realise that though I have had to rely on other in the last two weeks to do things that I wish I could do myself, that Blimey, aren’t I lucky to have people around me who are willing to help me!!!

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I can’t control that Elvis, my awesome dog has died. So suddenly he is just gone!! I feel in shock. Timm has been to get his body from our neighbours and Ive had a few minutes with him this morning. He looks perfect, there is not a mark on him. If you don’t have pets, you may not understand just how heartbreaking it is to lose an animal. He was part of my family and we all loved him so much. I miss him. He has been by my side since I left hospital, I think he did know that I was in pain (either that or he was just enjoying the warmth and my allowing him in my bed!!) I feel like its so unfair that he is gone, and for it to happen now when Im already dealing with so much bloody sucks.

Its hard to find any positivity in the situation because there isn’t any. But I can make a choice, I can cry and say its not fair (and I have done that for a while!!) or I can cuddle my children and encourage them to talk about all the things we loved about him. About the funny way he scrunched up his nose so he looked like he was smiling. About just how greedy he was and how he’d do anything for a treat! About his soft ears, his helicopter tail and his big wide eyes. I know the kids will mirror our reactions, so its important that they see us smiling. We have all had a cry together. We have talked about how it is ok to cry, ok to be sad. But important that we think about the things we loved about him. The things that made us happy.

This weekend Timm had to work away again, he took our two eldest children and my amazing friend Caroline came to stay. We had our two youngest kids with us and she has cooked, cleaned and cared for me. She is an awesome person and just a truly beautiful friend. How lucky am I? I cant be grumpy and sink into self pity when I have people around me who are so caring and wonderful.

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I’ve said before and ill say again. I am BLOWN AWAY by the messages, cards, gifts, flowers, texts, phone calls and visits I have had from you all. Every single one genuinely makes me feel better. With all the support and care I have had from so many people, I choose to stay positive…

Thank you for reading and for caring.

Love Sam xxx

Bad times

I’m so devastated to post this. Our darling little chihuahua, Elvis was hit by a car on Saturday tea time and was killed instantly.

I’m distraught, our poor boy is gone.

On Saturday I was recovering at home, Timm was working away for the weekend and taken the older two kids with him. Our youngest was with me and my friend Caroline came to look after us for the weekend with her youngest son. Our neighbour Tracy came to the door and spoke to Caroline who then came in and told me.

Where we live is very rural and our dogs have always just run in and out of the house as they please. The boys were playing in the garden and I let the dogs out for a wander. They would usually play in the garden or watch the kids.

Minutes later, Elvis ran up the lane. Another thing he used to do. He loved seeing our neighbour who lives at the top of the lane and would walk up to shout at the horses or play chasing the pigeons.

It’s difficult to explain as this may sound that they were running wild. Which to a point they were I suppose! But they always came straight back and I loved that they could explore!

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So it seems our boy ran straight into the road into the path of a van. The lady driving the van was taking two disabled people to the supermarket. Both she and her passengers were distraught. It was an accident, she wasn’t at fault and I’m just glad that none of them came to any harm. She went to the nearest house for help and luckily that was our wonderful neighbour Tracy.

Tracy has been the most kind and considerate neighbour ever since we moved here. She is just a joy to have round. When she walks her dogs past our house twice a day she always gives the dogs a treat and if the doors aren’t open so the dogs are in and out, she posts the treats through the letterbox!! I’m so sad she had to deal with this but so grateful it was her.

I went to see him, he is in Tracy’s garage on a blanket. He hasn’t a scratch on him. He looks like he is just sleeping. I’m devastated. Tracy told me she loved him like he was one of hers which made my heart swell. My poor pup is no longer here.

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When I came home from hospital on Tuesday, Elvis ran straight to me in bed, he scrunched up his nose like he was smiling which is what he’d do when he wanted to get up and then leapt in bed, snuggling into my neck. He’s spent the week right by my side, it’s like he knew I was ill and needed him near me.

He was naughty when he first came to us, he still was sometimes! But he had the BEST character, a proper cheeky little boy who made us laugh all the time. He had the softest ears and was turning into a portly young man (Timm called him the barrel)

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He was just an awesome dog. I’m so so sad. If you’ve never had a pet it’s hard to explain that he was a part of my family. We’ve had him for two years and he was a Cleasby!!! He will be greatly missed and never forgotten.

We told the kids and they’re devastated. We’ve talked about what an awesome dog he was and how much we loved him.

Thom wrote a poem…

I loved Elvis when he sat down next to me

I loved Elvis when we used to play

I loved Elvis when we walked down the woods

We all loved Elvis as much as we could.

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Sleep tight gorgeous pup xxxx

My Surgery – Subtotal Colectomy and End Ileostomy

After chatting with my mum, I realised that as I natter away about my surgery, that it can be quite confusing as to what I have had done, so with the help of google I thought I would do a little post about the surgery.

I had a subtotal colectomy and end ileostomy.  This is an operation to remove the colon, leaving the rectum behind. It is most usually performed for patients with inflammatory bowel diseases.  The surgeons removed my colon (also known as large intestine or large bowel) and then formed an ileostomy which is an operation to create a stoma or an opening in the ileum (last part of the small intestine), which is stitched to the skin.

Before

subtotal colectomy ulcerative colitis

 

After

 

end ileostomy ulcerative colitis

 

 

So I have no colon.  My food goes from my small intestine out through a hole in my stomach (my stoma) and I wear an ileostomy bag attached to my skin at all times which collects all the poop.  I still have a bum but it isn’t attached to anything!! Which means I no longer fart or poo from my butt…

In the next 6-12 months I have a decision to make.  That decision is whether I have a further surgery that will remove the rest of my rectum and means I will have the ileostomy and wear a bag for the rest of my life.

Or whether I have an internal pouch made out of my small intestine which over the course of two operations would be reattached to my anus.  This would mean I no longer have the bag and that I would poo from my butt again.

I am currently not going to make that decision.  My goal right now is to recover from this surgery, get off all medications and get myself strong, fit and healthy.

Some people decide that the stoma and bag are just so convenient and easy for them to live with that they would rather not have more surgery and deal with all the consequences of reattaching the bowel.  For others it is entirely the right thing to do.

For me? Im not too sure right now.  I can’t even begin to think about these things and so Im not going to stress about it.  Ill make that decision in the coming months with the support of my doctors, nurses and family.

So I hope this helps a little to explain what I have had done!  For more information take a look at the NHS website or feel free to ask my any questions and Ill do my best to answer them!

 

Love Sam xx

 

Home!

Two weeks ago I went into hospital.

One week ago I had my colon removed and an ileostomy put in place.

One week ago almost to the hour I was in the High Dependency Unit.

Tonight I’m in my own bed with my doggy.

The body is an awesome thing!

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Love Sam xxx

Recovery

Hello everyone

I thought Id do a little update, later when I’m fit and well I’m planning some posts, vlogs and helpful stuff re stomas and ileostomies etc

I’ve also had some amazing offers to do some work and events to raise awareness and money so I’m very excited.

But I’m still recovering and so trying to not take on any stress. So my post today is just a little update.

Recovery from a major operation is hard slog, man. Your whole body has taken a beating and it’s a slow and steady recovery. You are taking so many different drugs, have lines in and out of your body. Your legs are bound in surgical stockings and you are laid up in a hospital bed.

The pain is a toughie. For the first three days I had an epidural in that I could top up as and when I needed it. Ill be honest, I didn’t think it was doing that much… I thought I was a proper bad ass.

Seriously, I was walking to the toilet two days after surgery thinking ‘I am so hard’

Then they removed the epidural.

And I cried.

A lot.

Oh my god! I’ve never felt pain like it!!! My wound felt like it was blazing on fire and my whole stomach area felt like I’d been beaten by a rhino. My back was sore, my head hurt, the passage of food through my gut felt like a thousand snakes…

Now I’m getting on top of the pain, I’m on strong painkillers but the time between them is widening each day. Last night I didn’t wake for pain relief which is the first time since the op so I’m starting to feel like I’m turning a corner.

I’ve had a lot of issues with my ileostomy bag leaking since the op. This is hard to deal with. The first time it happened I cried a lot. I felt so embarrassed. I felt like a baby. I looked down and there was just waste everywhere and I flipped. I got so upset and my mum was here. She got really upset too. Not that it had happened but that I was upset.

Since then it’s happened a few times and though difficult, it get a little easier each time. Well perhaps not easier but less shocking, I’m more adaptable and I know how to deal with it now.

Yesterday morning the stoma nurses tried me with a different bag. It’s a two piece system and has so far been a massive success. It feels really solid and has had no leaks – I feel quite confident on using it.

I’ve had a couple of set backs in the last few days too. The first is I developed thrush in my mouth and throat. This is gross. It’s apparently quite common after surgery and also due to the large dose of antibiotics I received after surgery. It sounds like not that big a deal but because its so bad, it’s stopping me eating and drinking. My throat is so sore and feels like its full of bits and my mouth tastes disgusting. Because I’m not eating and drinking, my weights dropping fast, my blood pressure is low and my output from my bag is just green fluid which is not good!! I am on a remedy for the thrush though so hopefully it will clear up soon.

The other setback was a bit of a weird one. I had a full blown panic attack.

I’ve not had a panic attack before and kind of thought it was mental rather than physical thing so it was a total shock. I was sat with my stoma nurse and she was cleaning my stoma, it was a little sore but ok. I started to feel really queasy and thought I was going to vomit. All of a sudden I just couldn’t catch my breath, she got me to lie down on the bed and my hands, lips and legs went numb. I lay there gasping and my hands froze into claws – I had no control over my body, it was like I was frozen in fear.

After five minutes it passed and I was totally back to normal! They said my body was reacting to stress and it was a panic attack. I’ve never felt anything like it, and at the time I didn’t feel particularly stressed out or panicked. It was terrifying and I hope it never happens again. I feel for anyone who experiences anything like this now – so scary!

Alongside recovering from surgery I am still on the dreaded steroids. I have to taper off from the IV high dose steroids I’d had the week before surgery. So I’m dealing with all the nasty side effects of the evil prednisolone too!! Palpitations, insomnia, anxiety, hairiness and many more. It is shit but necessary. My body will have stopped producing cortocoids and so I have to taper off in order to allow it to start producing them naturally again. Because I take the steroids I also have to take two other medications, one is a calcium supplement the other is a gastro tablet to avoid ulcers.

But I AM off all my Ulcerative Colitis meds which feels AMAZING. Once I have tapered of the pred, I can come off the other meds which means apart from any pain killers I may need, I could be totally med free!!!

This is an awesome thought…

So tonight I was finally released from hospital – it’s been 7 days since my surgery. I pushed to be discharged as I had just had enough of being in hospital!! Also I knew I had a great support system in place here at home and that I believe ill recover better here. Timm and I run our photography business from home – The Picture Foundry and so he is about every day. He is doing all the school runs and taking card of the kids and so is here to cook and help take care of me. For times when he needs to be away for work I have my amazing, wonderful kind friend Caroline taking over and looking after all of us. I call her my back up Timm because she is so much more than just a friend. She is someone I can rely on for everything. I just hope in the future I can support her as much as she is doing me right now. I am blessed to have her and her partner Jamie in my life.

My mum is also on call to help out. She has been great in having the kids, helping Timm with cooking and cleaning and visiting me. It’s been a relief to know that Timm has had support from others. And mums cooking meals in advance for him has been just fab!!!

Getting home was a tough slog. The walk to the exit of the hospital exhausted me so much I thought I’d fall asleep! We picked the kids up from Caroline’s on the way back – I wanted to go in and collect them and it was good. But it totally took it out of me. We stayed a few minutes and then I was done! I just couldn’t concentrate and needed to be in my bed.

So I came straight home and home felt WEIRD after two weeks away!!! I came to bed and Timm sorted all my meds and put the kids to bed. Then he came and we just had a quiet cuddle.

Bliss.

Though I’ve seen him every day we haven’t had a second alone. So the best feeling in the world today was laying in Timm’s arms, eyes closed and enjoying the quiet, sure and calm feeling that I was home.

Love Sam xxx

My hero

My hero isn’t someone wearing a cape and fighting crime.

It isn’t the person with the biggest muscles taking down the ‘bad guys’

It isn’t someone who is fighting fires or saving lives.

My hero sits and watches me sleep even though he knows he doesn’t have long to visit me in hospital as he has to rush back for the school run.

My hero tells me I’m beautiful when I’m in a hospital bed and haven’t brushed my hair for days.

My heroes eyes shine with tears because sometimes it’s all a little much for him.

My hero sees my stoma and in it sees a future healthier me and it makes him happy.

My hero cares not about the blood, shit and tears when he kisses me and tells me he loves me.

My hero takes home my bags of washing as he knows I couldn’t deal with anyone else seeing the state I have been in.

My hero is running our business, caring for our children, running the house, pets and everything…

My hero doesn’t treat me like I’m sick. He takes the piss out of me, he makes me laugh and he says inappropriate comments to make me giggle.

My hero supports me in this blog. He knows how important it is for me to talk about this and helps me do it.

When I say I’m worried ill be embarrassed in public with some of the noises my stoma makes, my husband tells me he will lift his leg and take the blame!

My hero makes sure that when I’m too hurt and not strong enough to stand up for myself, that my voice is heard and my corner is stood.

My hero will spend the next few weeks nursing me back to strength. He does it with love, kindness and a sense of humour.

My hero is Timm

Xxx

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