MAD awards 2014

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This blog has been a life saver for me in the last year, it has been cathartic for me to share my experiences and I have been so overwhelmed by the response I have had from an ever growing audience.  The emails I get daily mean the world to me and I can’t tell you how important it is for me to know that I am helping others.

The MAD awards 2014 are currently open for nominations.  If you would like to take a few minutes to go and nominate me I would be chuffed to bits.

MAD Blog Awards

I have been told Ive been nominated for Best new blog, Blog of the year and Best writer.

If this blog has helped you at all this year and you feel Im worthy I would be so grateful for your nomination.

Whilst you are there be sure to nominate your other favourite blogs.  Time is short as nominations are only open for another week or so.

Love Sam xx

What to do when bad things happen

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When bad things happen it is so easy to get into a spiral of feeling down, whether its something big like illness, relationship troubles or a relatively minor thing like your car won’t start or your best top gets boil washed and comes out small enough for a Barbie…

Feelings of sorrow, sadness, anger and frustration are normal but are they helpful?  Focusing on the things that are going wrong in your life feeds the negativity.  Try to focus on what you want rather than what you don’t want.

Here are 10 things to do when bad things happen.  Will they make everything better? Probably not, but will they make YOU feel better in that moment, I hope so.

1. Remember that you aren’t alone

Whatever your issue, you are not alone.  The internet is a big place and there will always be someone else going through or come through what you are.  I blog about my illness so much because when I was sick it helped me to read other peoples experiences.  It gave me practical tips and ideas on how I could manage but it stopped me feeling quite so alone.

Talk to family and friends if you can, but if not there is a whole world of support waiting for you online if you just look.  Asking for help is not failing, it is being sensible and accepting when you need a hand.

My one caveat to this is that forums can be depressing… people like to write about the bad times but are less likely to write about positive experiences, so if you feel that reading a forum is not helping just switch that shit off!

2 Take a deep breath

I would have titled this ‘Meditate’ or ‘Practice Mindfulness’ but those words turn off some people, they thing its hippyish or a bit silly.  The reality is that focusing solely on your breathing clears your mind.  Close your eyes and think about your in breath and your out breath.  Are you breathing through your nose or mouth? Control your breathing, inhaling slowly and the gently release that breath…

This simple act WILL calm you down.  I try to do this a couple of times a day, I find it really focuses my thoughts and makes my day calmer.

stoma ileostomy photo shoot woman beauty

3 Knowledge is Power

I really believe that knowledge is power, it gives you control and allows to to make informed choices and rational decisions. If you feel out of control, everything seems worse.  Google it.  Go to the library.  Ask someone.  But learn about what it is you are going through.

4. Be kind to yourself

When life slaps you in the face you need to be kind to yourself.  What makes you feel better? Is it a night out with the girls or a movie in with the kids? Do the thing that relaxes you and makes you feel good, whether that is cooking an amazing meal for yourself, going to the library and hiding there reading all afternoon, a deep bath with oils and bubbles or a pamper of painting your nails or having a facial.

I don’t know what makes you feel better, you do, so do it.

5. Hide away

Its ok to feel you need to hide away, as long as its only temporary.  When things are bad I like to make myself a nest of cushions and duvets, I bring a picnic of foods to the nest that are easy to eat and need no cooking.  I climb into my nest with a remote and watch films or tv series… I love Netflix (my friends laugh at me, because I talk about it a lot!) My hideaway means slobbing in a corner and allowing myself to switch off.

6. Things will get better

I saw this quote that said “Everything is ok in the end, if its not ok, then its not the end”  Perhaps things won’t get better in the way you think they should but even the darkest night has a sunrise.  Be open to new experiences, be positive and grateful for the things you have and things will get better.

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

7 Look for the love and kindness around you

No matter what the Daily Fail wants you to think, people are generally good.  Of course there are arseholes in this life but most people have a heart filled with love and kindness if you just look for it.

Give out love and kindness to others and you will receive it back.

8 Get moving

I know its a cliche, but thats because it works.  When you exercise, your body releases endorphins that trigger a positive feeling in the body.  It is proven to reduce stress, ward off anxiety, boost self esteem and improve sleep.  You don’t have to go to the gym or run a marathon, but a long walk in the woods with my dog always makes me feel a bit better about the world.

walking dog exercise for when things go wrong

9 Get organised – gain control

You might not be able to control what has happened, but you can control how you react and deal with it. Making lists or having a clear out is a physical way to help your mind feel organised.  I know that control is a big thing for me, if I feel out of control I get frustrated, angry and like Im in free fall.  Organise your space, use pinterest, get a note book, anything that helps you feel organised is going to help.

10 Know that you always have a choice.

No matter what happens, you do have a choice in how you react. Accept responsibility of your own actions, educate yourself, take a deep breath and know that you can face the worst things in the world, your reaction to them is your own doing.

EE Cummings said “remember one thing only; that it’s you – nobody else – who determines your destiny and decides your fate.  Nobody else can be alive for you; nor can you be alive for anybody else”

Sam xxx

Ulcerative Colitis and Stoma poetry

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There was a pain inside me, it couldn’t be cured or healed

It ate away at the person I was, taking my time and my energy

It pulled me into the smallest room in the house and held me prisoner

The pills to fix were a poison, they give with one hand but take with the other

When even the soldiers no longer fight for you

The time comes, they will take the pain away

Remove the offending item, halt the bleeding, stop the war

My life changed at the hands of another

Suddenly there is light, there is a glimmer of joy

a feeling warms slowly, a hesitant smile plays on my lips

the battle is over, though there is still work that needs to be done

the person I thought had gone, was only hiding

She returns.

 

Sam Cleasby

IWD – Inspiring Women

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Over on Team Honk for International Women’s Day they are celebrating Inspiring Women and asking others to share which woman inspires them.  They chose Davina McCall who I think is a great choice, but I would like to talk about the women who inspire me, and they are my two oldest friends Tania and Hannah.

best friends inspiring women iwd

Im so lucky that I had to think long and hard about who to choose, I have so many awesome women in my life and could blog forever if I had to list them all.

I met Tania and Hannah when we were all 11, it was year 7 of secondary school and I sat alone in my classroom and saw these two girls giggling.  They were total opposites, Tania is Chilean and dark haired and Hannah is pale with red hair and freckles.  I didn’t know it at that point, but they were to become my closest friends.

best friends inspiring women iwd

Can you spot us?

21 years later these women inspire me, they support me, lift my spirits and are just there.  Always there, even when they physically aren’t.  It doesn’t matter how long it is between the times we see each other, its just easy.  The amazing thing about women who have been friends for so long is that we know each other inside and out, these girls have supported me at my worst and celebrated with me at my best.

best friends inspiring women iwd

Tania is a real enigma, if you met her briefly you would say she is confident, beautiful, loud, the boss… But she has so many layers to her, 21 years and she still has the ability to surprise me.  She is so intelligent, spiritual and has such a kind heart.  She comes up with these crazy ideas and has the ability to get anyone on board, one minute we will be having dinner, the next she will have orchestrated a photo opportunity with us taking on the roles of the 12 disciples.

best friends inspiring women iwd

Hannah is the strongest woman I know.  She is this petite, quiet woman but man this girl kicks ass.  She is hard working, tough, brave and a truly wonderful mother.  She is also loving, caring, thoughtful, hilarious and flipping stunning!

Both of them are amazing and I love them more than I can say, when the shit hits the fan, they are two people who I need, not even want.  I need their guidance, their love and their uniquely, wonderfully bizarre friendship in my life.

best friends inspiring women iwd

When I am low I think of them, of Hannah who works 13 hour shifts as a nurse then cares for her two children whilst her husband is working away, all with a smile on her face.  Of Tania who astounds me with her drive and passion, her love of her family is unrivalled.  Of both of them and their ability to make me howl with laughter and bare my soul within the space of an hour…

best friends inspiring women iwd

My inspiring women are my friends.  Tania and Hannah.  Here’s to friendship, nurture your relationships with the people who matter, celebrate the amazing women in your life and tell them often how much they matter to you.

Inspiring Women Blogging Prompt

Love Sam xx

A massive f**k you…

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This week a friend told me that someone she knew had just had a colectomy and ileostomy.  One of his ‘friends’ had this to say on the matter…

“If I had to have one of those bags I would shoot myself.”

Really? Wowzers.  Im not going to explain all the reasons that this is totally messed up so Id just like to send that person these…

queen fuck you

Love Sam xx

Everything you need to know about IBD in one handy place

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Information

IBD is Inflammatory Bowel Disease and should not be confused with IBS (Irritable Bowel Syndrome) which is a completely separate condition.  The two main types of IBD are Ulcerative Colitis (UC) and Crohn’s Disease.

Ulcerative Colitis (UC) and Crohn’s Disease are chronic (ongoing) conditions, which are not infectious

The most common age for diagnosis is between 10 and 40 (although diagnosis can occur at any age)

In both UC and Crohn’s there is a higher chance of developing either illness if you have a close relative who has the condition.

UC affects up to 120,000 people in the UK, that’s about 1 in 500

Between 6,000 and 12,000 new cases are diagnosed each year
Crohns Disease affects approximately 60,000 people in the UK, that’s about 1 in 1000

Between 3,000 and 6,000 new cases are diagnosed each year

sam cleasby ulcerative colitis

UC affects the rectum and sometimes the colon (large intestine). Inflammation and many tiny ulcers develop on the inside lining of the colon resulting in urgent and bloody diarrhoea, pain and continual tiredness. The condition varies as to how much of the colon is affected.  In addition, UC can cause inflammation in the eyes, skin and joints.  If the inflammation is only in the rectum it is known as proctitis

Crohn’s Disease can affect anywhere from the mouth to the anus but most commonly affects the small intestine and/or colon. It causes inflammation, deep ulcers and scarring to the wall of the intestine and often occurs in patches.  The main symptoms are pain in the abdomen, urgent diarrhoea, general tiredness and loss of weight. Crohn’s is sometimes associated with other inflammatory conditions affecting the joints, skin and eyes

For both illnesses the severity of the symptoms fluctuates unpredictably over time. Patients are likely to experience flare-ups in between intervals of remission or reduced symptoms.  The cause or causes have not yet been identified in either illness. Both genetic factors and environmental triggers are likely to be involved

For UC most patients will be treated with drugs, including 5-ASA therapies (eg: mesalazine) and steroids, to control or reduce the inflammation. Suppressants of the immune system (eg: azathioprine) are used to maintain remission. Some people need surgery to remove the whole of the colon if their symptoms do not respond to treatment with drugs. If the colon is removed, the small intestine leads to a stoma (opening on the abdomen or ‘tummy area’) for emptying of liquid stool (faeces). Or a replacement colon (ileo-anal pouch) is created by the surgeon reshaping the end of the small intestine

In Crohn’s the drug treatment is similar to that for Ulcerative Colitis. In addition, various antibiotics can be used; and a new range of drugs are being introduced called monoclonal antibodies (eg: infliximab). Crohn’s Disease can also be helped by special liquid feeds which rest the bowel. Surgery may be required to remove narrowed or damaged parts of the intestine.  Smoking has an adverse effect on Crohn’s Disease, so patients are discouraged from smoking

UC and Crohn’s are relapsing, remitting conditions. Most patients remain under hospital follow-up. Urgent consultation or hospital admission may be required for ‘flare-ups’.  There is no cure for UC or Crohn’s at present (except for UC, if the colon is surgically removed), but treatment can control the disease in most cases.

UC and Crohn’s can affect young people during their education or as they become established in their career. Most sufferers can be maintained in remission for most of the time and are able to lead a full working life. However, some who have severe disease do not achieve their educational and career potential.

This information is taken from Crohns and Colitis UK.

A stoma is an opening from either the digestive system digestive system or urinary system . This opening is the exit point for faeces or urine and is formed, surgically, to treat serious, often life threatening, diseases and medical conditions such as bowel or bladder cancer, inflammatory bowel disease (ulcerative colitis or Crohn’s Disease), diverticulitis, congenital abnormalities or injury.

There are 3 types of stoma – colostomy, ileostomy and urostomy.

• Colostomy
A colostomy is the result of an operation where part of the colon (large intestine) is brought out onto the surface on the abdomen.
Food waste exits the body via the colostomy rather than from the anus. This waste is collected in an appliance that is worn on the abdomen, over the colostomy. These appliances are usually referred to as stoma bags.
A colostomy operation might be done because a section of bowel has had to be removed due to bowel cancer, inflammatory bowel disease, or injury.

• Ileostomy
An ileostomy is the result of an operation where part of the ileum (the last section of the small intestine) is brought out onto the surface on the abdomen.
Food waste exits the body via the ileostomy rather than from the anus. This waste is collected in an appliance that is worn on the abdomen, over the ileostomy. These appliances are usually referred to as stoma bags.
An ileostomy operation is done to treat medical conditions such as bowel cancer, ulcerative colitis, Crohn’s disease, Familial Adenomatous Polyposis (FAP) or injury.

• Urostomy
A urostomy is the result of an operation to divert the flow of urine from the usual route. In most cases a urostomy is formed by a section of small bowel being removed from the digestive system, and then attached to the ureters (which are the tubes leading away from the kidneys).  This section of bowel is then brought out onto the surface on the abdomen to form a urostomy.
The urine will then flow from the kidneys, along the ureters, through the section of bowel and out of the urostomy.  As it is passed from the urostomy the urine is collected in an appliance that is worn on the abdomen, over the urostomy. These appliances are usually referred to as stoma bags.
A urostomy operation is done when the bladder has to be removed, or bypassed, due to cancer, congenital or neurological disorders or injury.

This information is taken from Ostomy Lifestyle.

Links

A list of places you can get help and support with Ulcerative Colitis and Crohn’s.  Remember that your first port of call for advice should be your Specialised IBD nurse, consultant or GP.  The internet has a wealth of information but don’t be an ass about it – ask the experts!!

http://www.ulcerativecolitis.org.uk/  Ulcerative Colitis Support and forum

http://www.crohnsandcolitis.org.uk – Crohn’s and Colitis UK aims to improve life for everyone affected by Inflammatory Bowel Disease (IBD), the most common forms being Crohn’s Disease and Ulcerative Colitis.

http://www.meandibd.org/ – Support for young people under 25 with IBD

0845 130 3344 – Crohns and Colitis Support line

http://www.inflamed-and-untamed.com/ – American IBD support blog

Disability Benefits advice – These guides have been specially written for people who have IBD and will help you through the minefield of applying for support.

Radar National Key Scheme – You may not be aware that you can purchase a disabled loo key along with a guide to over 9000 toilets in the UK.

http://www.the-ia.org.uk/ – The ileostomy and internal pouch support group.

Its my six month no coloniversary!

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Can you believe it? It has been six months since I had my colon removed, on 3rd September 2013 I had a sub total colectomy.  Six months of having my ileostomy bag, six months of no going to the toilet for a poo, six months of no farting!!

Six months ago at this time, I was waiting on my ward nil by mouth.  I had told Timm not to come in as I wanted him to take the kids to school and wanted him to be there when I woke up after the surgery.  I sat alone terrified.  I knew it was the right thing for me to do but the future seemed so frightening, so unknown.  What would life be like with a stoma? How would my family and friend react? What would my kids think?  Would I feel like less of a woman after?

All these questions circled around my mind as I lay in that hospital bed waiting for the call.  Finally I was taken down to theatre and had just the best care and support before the op, my final thoughts as I drifted off with the anaesthetic were of laying on a beach in Australia with my sister…

ulcerative colitis surgery sub total colectomy with end ileostomy

I woke in recovery, tired, in pain but relieved to be waking up.  Timm was there, he leant over me and hugged and kissed me and though I was in this entirely alien environment, it felt ok because he was there with me.  There were issues from the surgery, concern over blood tests and infection and so I spent my first night in HDU.  One small room where my bed was in the centre, I had so many wires, tubes and bandages all over me.  I had one nurse all through the night who watched over me and kept checking, rechecking and checking again.  It was scary but I felt safe and that everything was going to be ok.

recovery from sub total colectomy and end ileostomy

I can’t believe that was all six months ago!  There have been ups and downs in my recovery but in the last six months I have felt better than I have in the previous ten years.  My Ulcerative Colitis has gone and I no longer live in pain and on the toilet.  For anyone going through the surgery at this time, just hold on in there, it is a hard slog but things will get better.

In the six months since my surgery I have been to Vietnam, on boat trips and cycled round a Vietnamese island, I have snorkelled with fish and rays in Australia and hiked the Blue Mountains.  I have gained an enormous respect for my body and my confidence has gone through the roof.  I’ve realised who my true friends and family are and seen the best in human nature in those around me, I have been supported by the kindness of others and Ive helped people going through life problems by blogging my journey so far.  I have had a realisation of the frailty and briefness of life and it has made me want to do all those things that I dream about, in my work life, home life and with Timm.  It’s made me braver, the things that scared me before suddenly seem so small and easily overcome, after all I had an organ removed and have marched on from it so how can anything else stop me?

Who knows where the next six months will take me.  Despite a great recovery so far I am struggling at the moment with a hernia behind my stoma, I do feel like this week has put me a couple of steps back in my recovery.  This has hit me emotionally as well as physically, Im frustrated that Im back on bed rest and need to learn the best way to deal with this hernia and the issues around it.

Im planning my pouch surgery with my consultant, Im also moving house, starting a course to improve my writing skills and renewing my wedding vows!  All this plus work, running our photography business, a summer tour with arts group Responsible Fishing and raising three kids!  It will be a busy year and Im sure there will be ups and downs but in the words of a true Sheffielder, it’ll be reight….

So Happy Six Month No Coloniversary to me!!

no coloniversary

Love Sam xx

Woah! Eventful Friday night!

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It’s all gone a bit dramatic here tonight, it started with a total bag blow out.

One minute I was cooking dinner with Timm, the next I heard a popping noise and felt a huge whoosh as the contents of my bag spectacularly emptied out down my legs and into the kitchen floor.

With an ‘oh shit’ from me, the husband realised what was happening and we both leapt into action. Well for me it was more of a legs together weird shuffle to the bathroom whilst Timm followed with my supplies and then he went to clean up the poonami in the kitchen.

I’m a lucky woman to have such an awesome husband to look after me. If I’m honest, I bloody hate that he has to deal with my shit (literally) I find it embarrassing and upsetting. But he deals with it all in a way that makes life so much easier and I find it easier to allow him to help me because he’s just so cool about it all.

sam cleasby blogger writer stoma ibd

After Id showered and sorted out a new bag I rejoined Timm and we finished making dinner and all was well in the world…

Then after dinner we headed out to the supermarket, we’re trying out meal planning and so we wanted to shop together to get next weeks groceries. As I got in the car I started to have stomach ache, by the time we got to Morrisons I was in quite a lot of pain. It kind of felt like trapped wind so I tried to ignore it.

Then it got worse, I went to the loos and I thought I was going to pass out from the pain. It felt like my stomach was bursting open, I’ve not hurt that bad since I was in labour. I came out and was sweating, pale and thought I would faint from the pain.

A lady sat me on a bench and I called Timm who was walking round with the trolley to tell him I needed to go home.

He practically carried me to the car and drove me home whilst I was grunting, shouting and swearing. I honestly thought something had burst inside me. It was agony.

I got home and laid in bed and removed my bag. My stomach was really swollen and my hernia really pronounced. My stoma was large and dark coloured. I was crying in pain as Timm got me painkillers, I really thought I needed to go straight to hospital.

As I laid flat my stomach started to relax and then I felt a weird feeling and my hernia seemed to shrink back into my stomach. And the pain just went.

It was the weirdest thing, one moment I was rolling round in agony, the next I just had a slight ache.

We’re thinking it must be the hernia?! That it came out a lot and then as I relaxed and laid flat, it sank back in. Who knows?! I haven’t eaten anything different today than I’ve had before. I haven’t drank quite as much as usual but just got no idea.

I felt quite embarrassed at the drama I caused and how much grunting and swearing I did!!! I’ve had painkillers and going to stay in bed now and relax.

parastomal hernia recovering from ileostomy surgery and hernia

Excuse the mess in my room! We are moving house in a couple of weeks and there are boxes everywhere!!!

I’ll speak to clinic/stoma nurse as soon as possible to see what they think it was. If any ostomates have any ideas I’d love to hear them! Perhaps I’m doing too much, I’m packing and cleaning our current home. I have no idea, I’m just glad I don’t feel like an alien is bursting through my stomach any more!!!

Thank you Timm for dealing with all my stoma dramas tonight, you are my hero and I couldn’t deal with all this without you.

exceptionallyawesomehusbandsobadass

Thanks for reading

Sam xxx

I got 99 problems…

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but a bowel ain’t one…

99 problems but a bowel aint one colectomy ileostomy ostomy stoma funny jokes

Weight loss for surgery

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At my surgical appointment this week it was suggested that I should lose some weight to increase my chances of my pouch surgery going well.

Since the birth of my kids I gained a lot of weight and then have yo yo-ed since then. I’ll lose weight during flares then gain it back. Last year I had months of steroids which caused me to gain a lot and surgery where I lost weight. Then during my recovery where I couldn’t do much physical exercise and being unable to eat much fruit or veg but encouraged to eat white bread, pasta and rice I then gained more!

I have been looking at my weight since January and I have lost 10 lbs, but I know I’m still probably two and a half stone overweight.  My BMI is currently 28 which puts me near the top end of overweight.  Ill be honest, it doesn’t bother me massively, I like the way I look, I know Im not stick thin but I think I look fucking good! (and Im SO modest!) But I do want to be fitter, healthier and stronger.

stoma ileostomy photo shoot woman beauty

The doc was really nice about it and was simply telling me how to increase my chances of a better outcome.  I know a lot of crohnies really struggle with being underweight but for me it’s the other way.

So I need to get on it, it feels very much like when I stopped smoking.  I liked smoking, I know that sounds bad and isn’t the right thing to say these days, but I did like it.  I knew it was bad for me and I knew that Timm and the kids hated me smoking but I never really wanted to stop.  Then my consultant told me that I was five times more likely to have a flare up of ulcerative colitis if I was a smoker.  I quit that day.

Id been a smoker for 15 year and I just stopped. I felt that if I continued smoking after Id been told this and then had a flare up, that it would be my own fault.  Every time I put a cigarette to my lips I thought about how sick I was during a flare up, I thought about being on medication and having to stay in hospital and funnily enough, it made me not want to have that smoke!

I feel the same now, I know that by my BMI I am overweight, I know that my health could be better and I could be fitter if I lost some weight.  I have dieted over the years and never really got on top of it.  Ill lose a stone or two and then slowly gain it back.  Also whilst I was ill, my weight just didn’t seem like a priority. But now I feel that if I don’t lose weight and something goes wrong with the surgery or my recovery, that it will be my own fault.  I feel that I have to do this now to give myself the best chances of an easy recovery.

I know it isn’t as simple as that and that complications can arise whatever your weight, but now I have heard it, I feel its something I must do.  It feels easier to say no to that slice of cake or takeaway because the fear of surgery going wrong is far higher than my desire to eat fatty foods or chocolate and sweets. I have six months to lose the weight, so Im just getting back on the healthy eating, going to the gym and getting more exercise.  Wish me luck! getting fit after surgery

I think a lot of this has to do with control too, I have little control over what happens with my body at the moment, the surgery isn’t what I planned for my life but I need to have it and so it is out of my hands.  I can’t control the disease or treatment, but I can control how I treat my body, what fuel it gets and how I exercise and so that is what Ill do.

I need to know I am going into the surgery match fit and so if that means cutting out the cake and hitting the gym hard, that is what Im going to do.

Sam xx