Happy Birthday Timm

It’s my boy’s birthday today and I just wanted to tell my amazing husband that he is awesome.

Happy happy birthday to the best bloke in the world, he is my hero and I just couldn’t have got through the last 2 years without him.

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Timm supports this blog and all my campaigns wholeheartedly with advice, help and of course his amazing photography.

He is just so inspiring, he is the hardest working person I know, he is a bloody wonderful dad and Charlie, Ellie, Thom and I couldn’t love him more.

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Happy Birthday Timm!

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Love Sam x

Op update

After my latest hernia surgery 2 weeks ago I have tried to rest and recover as well as fitting in quite a lot of work! I know people say to take it easy but both my husband and I both run businesses where if we don’t work, there’s no wage!

I wore a corset whenever I was up and about to support my stomach but found after a week, a large hard lump formed behind my scar. I was scared that the hernia had come straight back through but it feels different to that.

As always I have been trying to tell everyone around me that I’m fine and just power through and deal with it. In reality I feel gutted that there is yet another setback.

Mr Brown doesn’t think it’s anything to worry about and suggested it was a seroma. A seroma is a pocket of clear serous fluid that sometimes develops in the body after surgery. When small blood vessels are ruptured, blood plasma can seep out; inflammation caused by dying injured cells also contributes to the fluid.

He has booked me in today for an appointment to take a look at it and so I will update as soon as I know anything more.

I just want to be healthy and to not have any more issues. I know this sounds really minor and it is in the grand scheme of things but it tough when you feel that it’s just one thing after another. I want to know when I get a break from all this, you know?

I’m so fed up of hospitals, doctors and medical crap! I just want to be healthy! It’s not too much to ask is it?

Anyway rant over, I will update soon.

Sam xx

Exposed Magazine's Local Hero

Thank you so much to Sheffield magazine Exposed for featuring me in the April issue as their Local Hero.  I am blown away and so grateful that my work raising awareness and dropping the taboo around IBD as well as my campaign for Invisible Disability Awareness #MoreThanMeetsTheEye has been recognised.

exposed magazine local hero sheffield

 

I work really hard to keep spreading awareness, positivity, information and support and it means so much to be recognised for this.  All I have ever wanted is to make life easier for others and I try to do this by shining a light on my personal journey to lead the way for those behind me.

 

exposed magazine local hero sheffield

 

Thank you Exposed Magazine, it’s an honour!

 

Sam xxx

My boy is raising money for Crohns and Colitis UK

My youngest son Thom is 10 and has beautiful long hair that he has been growing for a few years.  He has decided to raise money for Crohns and Colitis UK by cutting all his hair really short!

I have Ulcerative Colitis and in 2013 I had a colectomy and ileostomy, in 2014 I had more surgery to form a J-Pouch.  It has been a really difficult few years and as family we have had a lot to deal with.

A chronic illness doesn’t just affect the person who is ill, the ripples spread through the family and friends and my children have had a stressful and upsetting time seeing me go through surgeries and treatment.  I am so proud of the way they have dealt with it all and couldn’t be happier that Thom has decided to raise some money for CCUK.

Crohns and Colitis UK provide advice, support and help to the almost 300,000 people in the UK with IBD – they are a great charity and we are pleased to raise money for them.

crohns and colitis uk

 

A message from Thom

Please donate some money because my mum has suffered with lots of pain with her surgeries.  It’s been very hard for me because I didn’t get to see her much and when I did she was feeling ill and it made me sad.

Im cutting off my long hair to raise some money for the charity that helped my mum so they can help lots of other people too.

Love Thom x”

 

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He is hoping to raise £100 and so please head over to his Just Giving page now and give what you can!

 

Sam xxx

Hernia Surgery Update

I had my hernia surgery two weeks ago and realised that I hadn’t posted an update here (though I have been on facebook and twitter).  I have had a super busy week working with the amazing arts group Responsible Fishing and so have just not had a minute!

So to the hernia surgery!  Our fab friends Caroline and Jamie had the kids for us the night before as I needed to be at hospital at 7am and so it made life loads easier to not have to get three kids up and out for 6am.  I had to stop eating at midnight the night before and no fluids from 6am.  I arrived at the hospital and was taken up to my room where Mr Brown came to see me along with the anaesthetist and nurses.

I was second on the morning list and so went down to theatre at around 9am, and after just a couple of hours was back up on the ward feeling pretty sore and very sleepy but not bad at all.  I was very relieved to not feel sick as after the last operation I awoke vomiting and felt nauseas for days.  That was when I discovered that I have bad reactions with the anti sickness drug Cyclozine and so I was quite anxious this time.

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The first night I had quite a bit of pain but was able to control it with just paracetamol and codeine and I was allowed home the following morning.  The only issue was my sleepy bowel… I just couldn’t go to the toilet.  It was the oddest feeling as since my jpouch surgery last May, I go to the toilet and poo AT LEAST 6 times a day and so to just not go at all for nearly 3 days was bizarre!!!

I was a little worried but was told it was very normal after surgery and just to keep an eye on it and to call them and potentially go back to hospital if it didn’t ‘wake up’ after 3 days.  But sometime on day three, my small intestines awoke with some ridiculously loud grumbles and I eventually went to the loo.

paralysed ileum

The first couple of days I had some soreness, but nothing compared to the last two surgeries!  It was well controlled with codeine and paracetamol and I also wore a corset to feel a little more supported.  By day 4 I was up and pottering around the house and day 9 saw me go away with work for 4 days!

I had been very nervous about the op, but it all seems to be going well.  There is a lot of hard swelling behind my scar and I have a little soreness by the end of the day but I am feeling ok.  I am still very tired, I think perhaps its the general anaesthetic that takes it out of you, but with the odd nap and lots of early nights I am doing very well.

hernia ostomy incisional scar

Thanks for all the lovely messages of support, it means so much!

 

Sam x

Crohns and Colitis – more than 'just' a poo disease

I talk a lot about Crohn’s Disease and Ulcerative Colitis, trying to demystify the diseases that come under the umbrella of Inflammatory Bowel Disease because being diagnosed with these things can be confusing, scary and very upsetting.  I try to be positive yet honest, to share my journey, the ups and downs and try and describe my life without scaring the bejesus out of any newbies.

The LAST thing I want to do with this post is to scare anyone, but what I do want to discuss are the realities  of IBD.  For many people, the conditions can be controlled really well with medications, with long periods of remission being achieved but around 2 in 10 people with UC and 7 in 10 people with Crohn’s will have to have some form of surgery in their lifetime.   All have to deal with the medications and treatments for the diseases having side effects, some of which can potentially be life threatening.

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Initially, especially if the UC is mild, medical treatment is through aminosalicylates (or 5-ASA drugs) such as mesalazine or sulphasalazine, immunosuppressant drugs, such as azathioprine or mercaptopurine may be prescribed for people with UC who continue to have frequent flare ups or ongoing symptoms.  For more severe UC, treatment with steroids given intravenously may be necessary. If this does not work, you may be given another immunosuppressant, ciclosporin. Biologics such as infliximab are now also used for severe UC.

Treatment for Crohn’s also depends on which part and how much of the gut is affected.  Mild inflammation may be treated with steroids or 5-ASAs such as mesalazine or sulphasalazine. Immunosuppressants such as azathioprine, mercaptopurine, or methotrexate, may be used for more persistent Crohn’s.  Biologic drugs, such as infliximab or adalimumab, are available for more severe Crohn’s Disease which has not responded to the usual treatments.

This information comes from Crohns and Colitis UK, a great charity with tons of information and support. Do take a look at their website www.crohnsandcolitis.org.uk

All these medications, especially when you move from mild to moderate or severe disease have side effects and some of them are life changing, life threatening and pretty scary.  The medication we take to make us better can be almost as difficult to deal with as the disease itself.  Immunosuppressant drugs do exactly what they say on the tin, they suppress the immunity which leaves the patient open to all sorts of other diseases and infections.

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd

Other meds have high risks of allergic reaction, cause weight gain, moon face, hairiness, increase your risk of cancer, can cause issues with mental health and so many other side effects.  I don’t want to scare people out of taking the medication, but I do want to speak honestly in the hope that others will understand the impact of IBD.

Then there is the scopes, the procedures, the surgeries… All of which carry risks.  And I haven’t even mentioned that IBD sufferers have a higher chance of getting bowel cancer.

I know this is all upsetting and scary, and I promise you that my intention isn’t to be frightening people.  But there isn’t a month that goes past without seeing another member of the IBD community has passed away, the tributes from friends and family filling my Facebook and twitter feeds.  I think it is important for people to realise that IBD isn’t “just” a poo disease, that what we face every day through the illness itself, the medication, the diagnosis tests and the treatments is hard work.

This isn’t about having a “bit of diarrhoea”, it can be life threatening and living with Inflammatory Bowel Disease is so tough at times.  It isn’t the same as that time you had a tummy bug, you don’t understand because your aunty’s neighbour’s sister has IBS when she eats milk.  IBD is serious.  It is life changing and I just wish more people could understand the gravity of living with this chronic illness.  There is no cure, it is a lifelong condition that can affect every single part of your life.

And the sad fact is that people die from it.  From the disease itself as well as from side effects from medications and complications from treatment and surgeries.

So next time you hear someone talking about Crohn’s or Colitis, please try to understand that it is not an easy cross to bear.  People with IBD truly are warriors, they have to be brave every single day to live with diseases that not only can be physically painful but can also be emotionally and mentally crippling.  The embarrassment and humiliation of a “poo disease” is isolating, but the burden of self care, of learning how to manage your illness and medication independently is tiring and mentally draining.  These things teamed with physical pain, incontinence and a socially difficult disease make life tough.

When you see us smiling, laughing and being ‘normal’, know that this is DESPITE dealing with all these issues.  So if you know someone with IBD, please try to be understanding, ask questions, care, love and try and make life just a little easier through your own kindness.

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And if you are the person with Crohns or Colitis, I am sorry if this post is a tough one to read.  I’m sorry that you have to deal with all this.  But don’t let it crush you, be strong, fight on and allow the illness to teach you lessons.  Live harder, when you have times of remission, when your meds are working or when your surgery and treatment is helping, do the things that you want to do, follow your dreams.  When times are tough and your health is suffering, be kind to yourself.  Allow yourself time to heal, take the meds and follow your treatments, be strong and just keep swimming (thanks for that life lesson Finding Nemo!).

I apologise once more for such a heavy post.  Please don’t let this fill you with fear, let it fill you with information and the desire to find out more.  Take control of your health by finding out as much as you can about your own illness and remember that IBD doesn’t define you, it is a small part of who you are and you are an amazing, unique and wonderful human being.

You can get some great advice and support from Crohns and Colitis UK and also IA Support… Click on the images below to go to their sites.

crohns and colitis uk Ileostomy Support

 

Remember that your doctor is always the best place to get advice on your own personal circumstances and that though IBD is tough, we all still have the ability to stay positive and to make the most of the hand we are dealt.

 

Love Sam x

Give someone a #BagofLife

Which would you choose?

colostomy association bag of life

The Colostomy Association are launching a crowdfunding campaign for Stoma Aid.  You can change the lives of thousands of people with a stoma across the world by helping spread the word about Stoma Aid by pledging a Facebook post or Tweet in our Thunderclap campaign.

Millions of people worldwide have a stoma – where an opening has been made on their abdomen which allows waste to pass out of their body. For these people, a stoma bag is necessary to securely, conveniently and safely collect output from their stoma.

However, thousands of people with a stoma across the world are forced to use tin cans, carrier bags and bits of cloth because they are unable to afford the cost of a stoma bag. In Papua New Guinea there are only two stoma care nurses in the entire country; in the Philippines a single bag costs a week’s wages.

For people with a stoma in developing countries, infection and hernias are extremely common as a result of them having to use tin cans and carrier bags. Many people are left unable to work or leave their home because of embarrassment and medical complications.

Each month, tens of thousands of stoma bags are thrown away in the UK as they are no longer needed. We will collect these unused bags and distribute them to people in need in developing countries across the world.

It will only take £22,000 to change the lives of thousands of people across the world. Help us spread the word about Stoma Aid and give someone a #BagOfLife.

Please get involved.

The last two years have been so hard, yet I am lucky enough to live in the UK and the NHS has supported me fully both with the actual surgeries but also with a constant free supply of ileostomy bags and a trained stoma nurse on call.  Sometimes I wonder how different my life would be if I lived in a country where I had to pay for my treatment and supplies.  But then I cannot even IMAGINE how it would be to have no access to ostomy bags, to live in a country where I had to make do with bags, plastic, cans or bottles.

It is heartbreaking to think about the people who are dealing with this every day.  To lose your bowel and have to have an ostomy is tough enough, but to then deal with feeling dirty, smelly and humiliated and have to create a bag out of rubbish is unbelievable.

Please pledge a Facebook message and a tweet.  It takes two minutes and means on 1st May when this campaign launches, it will do so with a huge boost on social media.

 

Thank you

Sam xx

Why I feel sorry for Katie Hopkins

I am a fan of The Apprentice, I am interested in business and marketing and also like watching people doing ridiculous tasks running around London.  I adore Nick Hewer’s unimpressed face and can’t help but get drawn into the drama of it all!  The contestants tend to be pretty much the most egotistical folk ever and the quota of all the dickish management speak you can imagine is high.  It is all good, entertaining, finger pointing, you’re fired, TV fun.

Yet it spawned the most hated woman in the UK, Katie Hopkins.

For a few years, I have tried to ignore the woman, her pantomime baddy character seemed needy and pathetic.  I thought her brand of bitchy, sour faced meanness would quickly fizzle out, yet she is just getting bigger and more offensive as time goes on.

I strongly believe in kindness.  I think kindness is the key to a happy life and I don’t think we need to be hard faced bitches who slag others off to be successful, it pains me to write this post, as try as I might, I can’t help but resort to name calling as this woman is just so vile.

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I think you should ignore the trolls, and that is what Katie Hopkins is, a troll.  She is making a living out of saying the most controversial and hurtful things she can manage, she is a bitch for hire and it seems she will abuse anyone to get her name in the media. She makes money from upsetting people, which must be a bloody awful job, and this comes from a woman who literally talks shit for a living!

I have ignored her as much as possible, through her fat shaming, woman bashing and racist comments.  I have turned the other cheek when she has bullied, berated and hurt so many.  I switched off Celebrity Big Brother when I found out she was appearing on it and I ignore her twitter rants when they appear in my feed.

This week I have had to pay the deposit for my daughter’s school trip, our dryer broke and the scouts fees were due, it’s a tough month money wise and all I can think is that it must be the same in the Hopkins household.  The bank balance must be low and so Katie dips into her pot of insults, closes her eyes and then randomly points at a celebrity news story and comes up with some tweet to offend the maximum audience.

Where I grew up if you spoke so badly about those around you, you’d get a pasting! Has Hopkins never heard the saying ‘if you’ve got nothing nice to say, say nothing’? She seems to relish in picking apart the flaws of the rest of society whilst skipping along, ignorant of all of her own.

Her comments on overweight people are so simplistic, her ego filled rants of eat less, move more are just another slap in the face to anyone who struggles with weight due to medication, illness or disability.

Not only did she throw out some mightily offensive racially abusive stereotypes, she then turned her malice on Angelina Jolie.  Now I am sure Jolie isn’t sat in her multi million pound home, with her beautiful children and most handsome man in the world as her husband weeping about the words of a two bit troll, but Hopkins’ words really upset me.

Angelina bravely spoke out about her decision to have her ovaries and fallopian tubes removed earlier this week, revealing that the mutation of her BRCA1 gene meant that she had a 50% chance of developing ovarian cancer.  As someone who talks about personal health issues, this struck a chord with me.  I thought she was courageous to use her position to speak out about ovarian cancer and her words about her children were really touching.  ‘I know my children will never have to say, “Mom died of ovarian cancer.”’ she said in the NY Times piece.

Talking openly about illness and treatment helps so many people.  When you have an illness, one of the worst things is feeling isolated and alone and to be able to read about other’s experiences really does help.  I know this because it helped me, and it is the reason why I keep blogging, keep writing and keep talking about IBD and invisible disabilities.  I do it knowing that I open myself up to nasty comments, to judgement and laughter, but I will keep doing it because I know I am doing good in the world.  No one should try to shame you into staying quiet, don’t be ashamed of your story, it will inspire others.

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I suppose we could all make a lot of money from mocking others, I don’t think there is much skill in being a total bitch, just a huge lack of morals.  But at the end of the day, I know I do a good job, I help people deal with a really shitty time in their lives and I make a difference.  I am proud of what I do for a living, I wonder if Katie Hopkins can say the same thing?

It must be very sad and lonely to live your life making others miserable, I always tell my kids that those who bully and shout the loudest are usually those who are hurting the most and so I can’t imagine what pain Hopkins must be in to make a living out of vitriol and hate.  I feel sorry for the woman and hope one day she will realise that success isn’t about money, it is about happiness, love and respect.

Perhaps rather than regarding the woman with the hatred that she seems to thrive on, we should feel sorry for her.  

After all, it must be difficult to wake up every day and be Katie Hopkins.

 

Sam x

 

#MoreThanMeetsTheEye – Cassidy Little

Did anyone manage to catch Comic Relief People’s Strictly?  It was won by a great bloke called Cassidy Little, he was a Royal Marine who was seriously injured by a bomb in Afghanistan and though I am not usually a fan of Strictly, it was a great show and did a lot of good…

Anyway Cassidy lost a leg in Afghanistan and walks with a prosthetic limb, he quite rightly has a blue badge to enable him to park in accessible places.  I was sent this image from his Facebook page that is being shared around the globe as we speak and I just thought it was yet another great example of why campaigns like #MoreThanMeetsTheEye is so important.

He was parking outside the BBC after doing some filming, he had his blue badge on display yet when he came back to his car, he found this note accusing him of parking in a disabled bay when he wasn’t disabled.    “Photograph taken” they declare! Because of course, if you can’t see a disability in the flash of a photograph it can’t be there, right?

 

cassidy little disabled parking more than meets the eye

 

I could rant and rave all day about the cowardice and sheer egotistical ignorance of the person who wrote this note, but instead I will hand over to L/CPL Cassidy Little of the Royal Marines himself.

“Dear Sir/Madam,

Yesterday, while doing some filming with the BBC, I parked my vehicle in a designated disabled parking spot in front of the Meadows Park. I parked there because I do, in fact, have a blue badge, which is in date and registered to my name. This blue badge was on display for the ticket warden, other visitors, and indeed the world to see. Both Aspects of the blue badge were displayed, and I was parked between the lines.

The entire scene was 100% legal.

You can imagine my surprise when I returned to my vehicle after the shoot to find the attached note, from an anonymous local, lying on my windscreen. I have searched the note thoroughly for a return address or contact detail, but I am afraid that the coward left no such details. So I ask that I may respond with a very public note to him/her about my feeling on the subject.

If you could ‘Share’ my thoughts to this unknown ‘Parking Anorak’, I would be very much in your debt.

I think it is important to point out that the reason I went to Afghanistan was to support the western word, and its way of life. The entire reason that people are able to take advantage of a government for things like Blue Badges, Education, DLA, Tax benefits, Public services, police, NHS, Fire service… etc… is because people like me go to war to stop the bad people who want to rip that way. So when one of our brave soldiers, like me, returns barely alive, missing a leg, and finds himself in a position where he might need a blue badge, I don’t expect the recipients of these government benefits to act like spoiled little brats. Please remember that your way of life has cost ‘life’ to maintain, and in this case, ‘limb’.

Now, I have spent the last 4 years trying to behave like a fully-able person, because that is what you strive for when you have parts of your body traumatically ripped from you. You want it all to go away and for things to return to normal.

So if you happen to see me in trousers (which I have only recently become comfortable wearing), walking without a limp (which I have spent years trying to perfect) please keep in mind that my leg has not grown back, and the discomfort I live with every single day does not go away.

And if the writer of this letter wants further evidence of this, I will happily send them a picture of me, cleaning the blisters on my stump, for their next birthday.

Thank you for your time,
Sincerely,
L/CPL Cassidy Little
Royal Marines

 

 

Please click on this link to the original post on Facebook and share the heck out of this story.

We salute you Lance Corporal, let us all remember that there is #MoreThanMeetsTheEye

 

Sam xxx

"Feminist" underwear

I saw this post last week about ‘feminist underwear’ and was immediately intrigued.  “Feminist lingerie is the body positive underwear we’ve been waiting for” screamed the headline, now as you know I am both a proud feminist and also a big champion of women being body positive and so I clicked on the link, unsure as to what I was about to see.  Neon Moon is a kickstarter fund to create a feminist lingerie brand that does not sexualise or objectify girls.  All good so far, right?

“By taking the time to support Neon Moon’s campaign you are making a statement to the world that you want change, and your voice will be heard!” – Hayat Rachi, CEO and Founder of Neon Moon… Ok, fab, tell me more!

Using ‘real’ models these bra and knickers are supposedly promoted with an ethos of empowerment, body confidence and the non-objectification of women.  Models were asked not to shave and were chosen for their average sizing and there is no photoshopping in the adverts.

Neon Moon lingerie feminist underwear

Photograph – Via Pinterest Neon Moon

The premise of the bras sounds great, yet I have a few issues with the actual products.  They have no underwires and use soft cup bamboo fabrics and disturbingly the size Large is just a UK 12-14.

As a size 16 myself I am upset and to be honest, appalled, that this ‘feminist brand’ is not including women who are at the UK average size.  I think part of the issue with body issues and fashion is feeling that you are not catered for.  This brand can’t profess to be about body confidence whilst telling their audience that being a size 12 is large and if you are a 16 or over that you cannot buy this product.

The collection “does not incorporate any padding, push-up, or wired attributes, the Bamboo fabric and shape is designed to work around the body, instead of the other way around.”

I have a huge issue with the idea that underwired and more supportive underwear is in some way against feminism? I have massive boobs, these puppies need support.  Not to make me attractive to other people, not to present my breasts in a certain way, but because the flesh in my breasts feels better when it is in a supportive, underwired bra.

When we come to the idea of advertising in a way that doesn’t sexualise women, I feel a little confused.  Who is decided what is sexualised these days? If you are showing items of clothes that fit around genitals and breasts then you are probably going to get someone who finds any image a bit sexy.  Asking the models not to shave seems a bit patronising to me, as if hairy pits are the epitome of what a feminist is.  I am a huge fan of using models of all different sizes and shapes but it feels awkward for this company to have used women who aren’t a typical model 6 but then not cater to the larger women out there.

My other issue is that I feel the brand is suggesting that if you wear lacy or silky undies, that you are in some way not a feminist.  I can assure you that the style of my knickers does not affect my beliefs that men and women should be treated equally.  Women’s rights are about choice, and if I choose to wear a black satin bra or a ruffled lace knickers and stockings, it is not because I want to perform sexually for men.  I wear them because I want to, because they make me feel beautiful.  The idea that I have to wear bamboo, ugly, ill fitted underwear to be a strong woman is laughable!

This feels like a company using the idea of feminism to sell a product and that kind of sucks.  The company have reached their goal on the kickstarted page and so perhaps they will develop their ideas and sizing further, but I am afraid currently Neon Moon is not for me, not only because I can’t fit my ass in their pants and that I would knock out small children if I attempted to wear their bras but because I just don’t like the product.

I am ALL about the body confidence, but that means choice.  I can choose to wear the sexiest underwear out there, it is not a reason for others to make a judgement on me.

Size wise, all companies need to realise that they can’t refuse to cater for a large section of society without pissing those people off!

What do you think?

 

Sam xx