I am an IBD Warrior, hear me roar…

When I was in hospital after my surgery I happened upon the hashtag IBD Warrior and seeing and reading other people’s IBD journeys, their struggles and ultimately the way they overcome what is such a shit illness inspired me and gave me the strength to move forward and to blog about my own journey.

So when I had my stoma photo shoot, we also did quite a few other photos with different styles.  The last few months have been tough but through it all I have tried to stay strong, keep fighting, be a kick ass woman and an IBD Warrior.

We all have an inner strength, sometimes that strength shows itself through having to fight for your life, sometimes its in a quiet confidence, at other times it is having to speak out for what is right or in being strong enough to just get through bad times one day at a time.  Even when we feel weak and defeated, we have within us the ability to adapt, to change and to move forward.  Sometimes it is easier to find than others.  Sometimes its so hard to find that we have to speak to friends or family and borrow a little bit of their strength till we can remember where our own warrior is hiding.

The next time I feel frightened and like the world is against me Ill look at these shots and remind myself of how far I have come and that I am an IBD warrior.  Hear me roar…

ibd warrior inner strength confidence ostomy ileostomy bag

ibd warrior inner strength confidence ostomy ileostomy bag

ibd warrior inner strength confidence ostomy ileostomy bag

ibd warrior inner strength confidence ostomy ileostomy bag

ibd warrior inner strength confidence ostomy ileostomy bag

ibd warrior inner strength confidence ostomy ileostomy bag

All photography by Timm Cleasby at The Picture Foundry

Love Sam xx

Illness and Ileostomies

Last night I started with a stomach bug, I felt queasy and then the output from my stoma turned to water. My bag was filling extremely quickly, I was emptying once or twice an hour and I felt awful.

I had a google and thought I’d try some Imodium (loperamide) to deal with the very watery output from my Ileostomy. I went to bed after puking with a hot water bottle and feeling sorry for myself. I had stomach pain and felt awful. I was a little worried that it could be a blockage, but from dr google I realised that even if it were, the best things to do were drink hot drinks, massage my stomach and try different positions to sit and lay.

I woke this morning after a really restless night feeling terrible. Still awful diarrhoea, nausea and stomach pains. But worse than all that was my mood. I just felt so down, like this was a setback in my recovery. I don’t think I’m generally one to feel sorry for myself but today I’ve been such a Debbie Downer…

eeyores gloomy place

I hate feeling sick. I’d rather have pain that nausea, that queasy feeling is the thing that drops me to my knees. So today the nausea teamed with tiredness, a leaky bag, soreness and pain has made me a proper mardy arse!

I try to keep chipper through all this but this has knocked me, I’m feeling low and fed up. Tonight we were meant to be having a few friends over, a bonfire, fireworks, good food and sparklers! Instead we had to cancel and Timm had taken the kids to the local bonfire, so I’m sat at home listening to other people’s fireworks feeling pretty sorry for myself.

feeling ill and miserable

The plan is Imodium, plenty of fluids and rest. I’m hoping it will be over soon and I’ll be feeling better. Sometimes we need to go to bed with a hot ribena, a hot water bottle and have a little pity party.

And so I’ll do that, and then pick myself up, shake off the grumpiness and smile…

Sam xx

#gettingstrong

I blogged recently about joining the gym and also swimming with an ileostomy bag and wanted to do a catch up post about the first week in my quest of #gettingstrong – the hash tag is what Im using for both instagram and twitter.

I just want to explain a little more about my reasons behind this lifestyle change.  I laugh and joke about shedding the fat and getting skinny, but I have to admit my main reason is fear.

Im scared, man!  After my surgery and during the first few weeks of my recovery I was shocked and so frightened by just how weak my body was.  I *know* it’s normal to be wiped out ofter surgery and that was explained to me but the reality of it was extremely difficult.  The total lack of control was the hardest, the inability to even walk to the toilet, the need for help in the shower and the extreme tiredness freaked me out.  Im an independent woman and Ive always done everything for myself.  I moved out of home at a young age, and then once married I spent 9 months of the year raising the kids alone as Timm’s job took him away from home so much.

post surgery ibd ulcerative colitis colectomy ileostomy

Post op

So to suddenly have to entirely rely on other people was HARD.  Timm stepped in and did so much, along with help from family and friends (for which Im so grateful) I didn’t need to raise a finger.  The first weekend after I came out of hospital Timm had to work away for the weekend and so my mum and best friend Caroline came and looked after me, they cooked, cleaned, helped me shower, changed bedding and just cared for me.

The weeks of laying in bed were really difficult, as much as I knew it was necessary to allow my body to heal, meant that my muscles became even weaker.  After the hardship of the ulcerative colitis, then the huge amounts of medication pushed into me and then the surgery itself, I have never felt so completely drained, weak and helpless.  The steroids I had been taking for months had made me gain weight and made me feel like crap.

I know that whatever decision I take in the next year, whether I keep my ileostomy bag or have the take down pouch surgery, I will have to have at least one more surgery.  The thought of this terrifies me, not so much the surgery itself (though that’s pretty scary too) but the recovery… The idea of being reduced back to a weak, out of control being is kind of heart breaking.

And so I have two options.  I can spend the next year worrying, panicking and being upset at the thought or I can take control of the situation and do everything I can to ensure that going into that operating theatre I am as strong, healthy and fit as possible.  I know that this won’t stop me needing to recover and that Ill still feel like shit after the op whatever I do, but if I can go in feeling strong, I have a better chance of an easier recovery.

This week I joined the gym, I have been swimming, been to the gym twice, once with a personal trainer, done an aqua fit class, a deep water fitness class and a Pilates session!  My ileostomy bag held up for all of the activities and I have been careful and made sure Im not straining myself too much.  All of this just 8 weeks after surgery!!

getting fit after surgery

In my gym gear – can you see my bag?

This surgery saved my life, it has improved my quality of life vastly and meant I could come off the vast amount of medication I was taking before.  In stopping the meds I already feel a million times better.  I realised that I have been taking my body for granted for so long.  Now Im missing my colon I need to use this time to start looking after myself.

And so that is what Im doing.  I refuse to choose fear.  I choose #gettingstrong

Love Sam xx

Stoma and Ileostomy photoshoot

When surgery became a possibility I did what we all do these days and googled it… THAT was a mistake (seriously don’t google stomas, you’ll give yourself nightmares!!)

Many images are medical, none are particularly flattering, most are terrifying.

Since having my subtotal colectomy and ileostomy I have realised that neither is anywhere near as frightening as I thought they would be.  My bag is barely noticeable and my stoma is kind of cute to be honest!

I had two separate emails from women recently, one saying she had a stoma and an ileostomy a few years ago and didn’t leave the house for six months till she had the takedown surgery.  And another from a woman due to have surgery who spoke of her fears of being ‘ugly’ and ‘disgusting’.  Both emails broke my heart.  I feel so sad that this life saving operation has such a bad reputation when it comes to looks and self esteem.

I understand the feelings.  When I first had my surgery I was to scared to look at my stoma.  The thought of my intestines being on the outside horrified me and from the images I had seen online, I believed my femininity and any form of attractiveness would have been removed along with my diseased bowel.

Since then I have been googling A LOT – I wanted to find some powerful, beautiful images of women with ileostomy or colostomy bags and stomas to share on this blog.  I struggled…. There are some model shoots for stoma products that I found cheesy.  There are plenty of medical photos and quite a few selfies!

So I decided that as I live with a photographer and Im not really a wallflower that I may as well do a photo shoot to show off my bag and stoma and hopefully to create a series of photos that show femininity, sexuality, creativity and beauty.

I would LOVE your feedback as Im feeling quite nervous about putting these out there…  I wanted to show others the true face of stomas and ileostomies.  Im obviously not a model, Im a normal size 16 woman with wobbly bits and stretch marks.

I have a stoma and I wear an ileostomy bag but they are such a small part of what I am.  I hope this can inspire others who have had or are due to have the surgery.  Your body is awesome.  This surgery saves lives and that little bit of intestine doesn’t change who you are – be proud, be confident and be amazing.

Love Sam xx

All photography is by the awesome Timm Cleasby of The Picture Foundry.

stoma ileostomy photo shoot woman beauty

stoma ileostomy photo shoot woman beauty

stoma ileostomy photo shoot woman beauty

stoma ileostomy photo shoot woman beauty

stoma ileostomy photo shoot woman beauty

stoma ileostomy photo shoot woman beauty

stoma ileostomy photo shoot woman beauty

stoma ileostomy photo shoot woman beauty

stoma ileostomy photo shoot woman beauty

stoma ileostomy photo shoot woman beauty

stoma ileostomy photo shoot woman beauty

stoma ileostomy femininity black and white photography creative shootstoma ileostomy femininity black and white photography creative shoot

stoma ileostomy femininity black and white photography creative shoot

stoma ileostomy femininity black and white photography creative shoot

stoma ileostomy femininity black and white

woman with stoma

ileostomy and stoma photos

ileostomy and stoma photo shoot black and white female woman with colostomy bag

ileostomy and stoma photo shoot black and white female woman with ileostomy bag

ileostomy and stoma photo shoot black and white female woman with ileostomy bag

Swimming with a stoma

I’ve been swimming tonight for the first time since the surgery. I was really nervous about going in the water wearing a bag but after 8 weeks and with our trip to Australia coming up fast I thought it was literally time to take the plunge.  It was definitely a psychological barrier, but it has been one that has played on my mind since my op as I knew I would want to be in the water in Australia so I wanted to face my fear as soon as possible.

I read up a lot on swimming with a stoma and found that it was recommended as a great gentle form of exercise, the information assured me that my ileostomy bag will hold out in the water and wouldn’t end up floating past me.  The adhesive on the flange (yep, its still ok to laugh at the word – I still do!) is designed to stay on in water, in fact the water strengthens the adhesive.  It is all well and good reading about it though, I still didn’t believe it!

Just-Keep-Swimming

So I used my usual dansac bag but added extra sticky patches around the edge to give me added confidence.  These were actually more of a hindrance that a help as I found the water went underneath it on the side closest to my belly button and it lifted.  But my ileostomy bag itself held perfectly well, no leaks, no lifting on the edges and no problems at all! So pleased!! I decided not to eat for a few hours before swimming in the hope that output would be to a minimum and that was helpful even if just to my head.

My other worry was that the bag would be really visible through my costume,  Im not too worried when we are on holiday and I am planning to wear a bikini on the beach, but I felt I wanted it covered at my local pool.  You can buy specialist stoma swimwear from a few places (just google!) which have pouches sewn into them to keep your bag tight against for body and protected, but to be honest Im still to find one that looks nice!  Some have a nice design but are in vile fabrics, others are in inoffensive fabrics but look poorly made.  Ill be damned to pay £40 for a bikini that doesn’t make me feel fab!  I wore my own swimsuit tonight which is black with a heavy floral pattern and my bag was barely visible.  I suppose if you really stared you’d see the bottom of the bag but that would be weird…

Changing afterwards worried me a bit, but I made sure I had all my stoma stuff with me.  I was hoping to not have to change the bag but as the extra stickies I applied had lifted, they had gone sticky and when I took them off, they lifted the flange on the bag. So I did a full change and despite my concerns, it was all fine!

During the swim I took it easy, we went as a family and so I swam lengths slowly with my daughter.  I felt the muscles in my stomach and chest really stretching, not painful but a good stretch.  I made sure I didn’t over do it and would have stopped if I felt any pain.

I feel really good tonight, it feels great to be exercising and even better to feel more in control of my body.  I would highly recommend it to anyone with a stoma.  I know it is so scary but now I have done it once, I am looking forward to more swimming, aqua fit classes and mostly a holiday on the beach in and out of the sea with no worries and no stress!

Love Sam xx

Joining the gym

Before I had kids I was skinny, I was a size 8 and then after having my first son I was a size 16. Since then I have gone up a bit and then down a bit but always ended around a 16.

I’m ok with this, I know I’m not skinny but I think I look alright! I have curves and boobs and hips and though I do still have the odd down moment, usually when shopping for clothes, I’m not desperately unhappy with my weight or figure.

However, since the op I have realised that I probably take my body for granted and don’t take care of it as much as I should. Though I do think about diet and love to cook, I don’t always eat as healthily as I could and my post surgery enforced diet with barely any fruit and veg hasn’t helped at all.

gym funnies

It has been almost 8 weeks since the operation and now is the time to start building my strength back up so I’m joining the gym. I’m a bit scared, the gym is obviously not my natural habitat but after all I have been through I think I owe it to myself to look after my body. I have five sessions with a personal trainer so I can be sure I’m doing the right exercises to aid recovery rather than do any damage to myself!

Timm and I are going for a family membership so we can both get fit and encourage the kids to do so too. We’re planning a weekly swimming session with the kids and then I’m going for a mix of gym sessions and classes. There’s aqua classes, low impact classes, yoga and Pilates for me to start with to ease me in and not be too much on my scar and stoma.

My eldest will also be able to use the gym which is a good way to encourage exercise and caring for his body from a young age. Despite being thin and having an athletic build, he dislikes group sports but does enjoy the gym at school and has weights in his room so it will be nice for him to get used to that environment from his youth.

My friend was telling me about her lifestyle changes in diet and exercise and how it’s changed her attitude so much. She feels strong and in control and I must admit to feeling a little jealous! So I’m joining the gym crowd, I’m taking control of the situation and have to make time for myself.

Whether I decide to keep the bag or to have the pouch surgery, I will have to have at least one more surgery and so I want to make sure that I’m the fittest I can be to face this. Recovering from surgery is bloody hard work! So I need to give myself the best fighting chance of coming out of all future ops strong and well.

mind-2-body-pilates-gym-inspiring-fitness-quotes-sayings-take-care-of-your-body-exercise-motivational-statements-famous-quotes

It’s too easy to make excuses. I don’t have time. I can’t afford it. It’s too difficult. But in reality if you really want to do it, then you have to make yourself try, you have to make time. If you can’t care for your own health and body, no one else is going to!

As a fully paid up member of the excuses club, I know them all. But in reality it comes down to a desire to start getting healthy, will power to keep going and hard work. There’s a quote I saw that said “no matter how slow you are moving, you are lapping the people on the coach” So I’m going to start, slowly at first but hopefully in a few months Ill be feeling stronger, fitter and healthier than ever!

So wish me luck!

Sam xx

I forgot about my bag!

I can often be forgetful.  I once found our house phone in the vegetable drawer of the fridge but today I did some good forgetting.

forgetful

 

We went out today to look at new cars, I changed my bag this morning and now Im getting more adept at it, it took just a few minutes.  I got dressed in clothes from a wardrobe that I have removed EVERYTHING that doesn’t work with my ileostomy bag and so it was stress free and fast.  Then we went out.  A few hours later we stopped with the kids for some lunch at McDonalds, I ordered my food and sat and ate…

Then all of a sudden I remembered about my bag.  For the first time in almost 8 weeks I had forgotten all about it, I hadn’t thought about it once since I had changed it in the morning!  I know this may not sound like much but when you spend so much time thinking about it, cleaning, changing, worrying about leaks, feeling it to see if its full and needs emptying, worrying if others can see it, or even worse smell it, the realisation that it hadn’t crossed my mind for a few hours was amazing!

I have changed bags and Im using Dansac Nova 1 EasiFold Convex (Ref 841-25) and it is amazing, it fits so well and is the only bag that has worked for me.  My stoma is quite close to both my belly button and to my scar which makes it very difficult to find a bag that sticks properly to my skin.  This bag has a diamond shaped flange that is fabric and so it fits snugly and perfectly around my belly button.  The leaks from the other bags were really affecting my confidence and self esteem as well as my sleep!  So to finally have a bag that works is life changing.

If you had told me a few weeks ago that I would go out for the day and actually forget that I had a stoma and bag, I would have laughed in your face.  Im just so glad that within two months I am able to start having something of a normal life back, that it is so much easier now and that I have my confidence back!

 

Love Sam xx

Objectified or flattered?

This is an article I wrote for parenting website Bad Mothers Club a few years ago, for more information see my PR friendly page.

funny parenting quote

The age of innocence seems to be ebbing away in my house. When asking my seven year old son what he thought of his new teacher, I did not expect him to answer:

“She’s OK, not as fit as Miss Smith though.”

My poor naive brain thought he must be referring to the amount of time she spends on the treadmill and I mumbled a sheepish reply that Miss Smith did indeed seem quite sporty. After bursting into giggles he put me right by letting me know that the general consensus at school was that she was a ‘Fitty’.

When did my sweet innocent child turn into this hormonal creature?? He’ll be reading some God awful lads’ mag and wolf whistling at girls in the playground next.

The left wing, lentil munching hippy came out in me and I tried to discuss how we shouldn’t objectify women in this manner, how Miss Smith was a highly trained, intelligent woman who was a wonderful, caring teacher.

“I agree mummy, but she’s still a hotty!” Charlie happily replied.

This contrast between the grown up phrases coming out of his mouth and the little boy stood in front of me who cried yesterday because he couldn’t finish the last level on his Spongebob game is confusing to say the least.

I thought I was doing so well at sex education, my husband and I decided we would be open and honest and answer any questions they may have with no embarrassment or fibbing about storks. We have talked about how babies are made, about vaginas (though I still hate that word) and penises (or is that peni??). We have looked through a variety of sex ed books aimed at children with the minimal amount of pointing and giggling. I have also had the pleasure of explaining to my then five year old why his willy gets hard sometimes.

But I hadn’t even thought about the social side of sex. Yet in an age where they are completely surrounded by sexual messages, and when they hear older children imitating language they hear on TV, is it any wonder we have a generation of seven year olds who are teens before their time?

So we sit down for a chat, he senses immediately that something is not right and wriggles restlessly, casting a yearning eye towards his games console.

“Son” I say, “when you get older you may start to feel attracted to girls” (The thought that he may be attracted to boys crosses my mind but let’s not complicate things for now.)

“Don’t worry Mummy, I’m always going to live with you,” he says.

“Well, no, you probably won’t,” I say. “When you grow up you will find a girl who you fall in love with and you’ll might want to get married and have your own house. And er, well, the point is that you may find girls attractive but you must treat them with respect. They may not like being referred to as ‘Fitties’.”

“Mummy” he sighs, looking at me as a patient father would an idiot. “Is this because I called Miss Smith a fitty?”

“Well yes. I understand you may hear these phrases but they are not really appropriate.”

He gets up, pats me on the thigh, kisses my cheek and says,

“Don’t worry, Mummy, I think you’re a fitty too!”

Did I feel objectified or flattered? I’m still working on it.

Love Sam xx

Do you dare to go bare?

I keep seeing articles about “brave” celebrities being seen out and about without any make up on.  Is this what being brave means as a woman? Is it vanity or just what is expected of celebs these days?

I know a lot of women who would not dream of leaving the house without makeup, they feel their slap gives them confidence and makes them feel better about themselves.  Now whilst there is nothing wrong with wearing make up to boost your confidence, I do worry that if make up is linked entirely with your self esteem then perhaps it’s not that healthy.

I do wear make up when Im going on a night out, I generally don’t wear much day to day – but I rarely leave the house without mascara, if my lashes are done then I feel ready.

A friend will even wear lippy and mascara when she goes to the gym or out running… though I do laugh, I get that its her safety blanket.

This photo shows me straight from the shower, when I look at it I see dark circles under my eyes and I feel my eyes lack definition.  But I also feel I look like myself – Im a 32 year old mother of three, I see reasonably clear skin, a nice mouth and a twinkle in my eye.  Sadly I do feel a little uncomfortable putting up a photograph of me not looking my best but I thought I’d dare to bare and honestly describe how I feel I look.

no make up bare face

 

A recent survey found two-thirds of women feel that facing the world without make-up is more stressful than a job interview.   I do find it sad that so many women feel that showing their natural self can be so stressful.

One of my all time favourite people, Zooey Deschanel was featured in People Magazine with no make up, rightly or wrongly, it made me like her more.  She seemed more approachable, more girl next door and more like a ‘real’ person.

 

So do you dare to go bare?  Or is your make up your confidence boost??

Love Sam xx

Update

Sorry I have been away from the blog for a week or so, the downside to feeling better and stronger is that you have to start doing all the things you were doing before illness!! I am back to work, which to be honest feels GREAT.  I run a photography company called The Picture Foundry with my husband and getting back on track feels really good.

sam cleasby

I am driving again (AT LAST!!!!) I felt really isolated and out of control not being able to drive for so long.  We live out in the sticks and have no buses, we don’t even have pavements – so being literally back in the driving seat is a big move forward to me feeling like myself again.  Im also back into the grind of housework and the like.  That bit I could do without!!

All this has meant that I haven’t had time to update the blog, so I am very sorry and I promise to try and be a better blog keeper!  You can always take a peek over at The Picture Foundry’s blog to see what we are up to.

Ive been getting some fab comments this week though about the blog – it still surprises me how many of you are reading.  Thank you!!

One comment that made me laugh…

‘I love reading your blog! Its just like that 50 shades of Grey!!’

‘Ermmmm are you sure you are reading the right one?!!’

‘Ohh I mean I just can’t put it down, I read it as soon as I get in from work!’

 

I have also had quite a few comments from people who want me to write more about life affirmation, positivity and how to improve your life.  That seems like a big thing to do, but Im willing to give it a shot, so look out for some new posts soon.

In other news, I have been asked to speak at an International Women’s Day event in Barnsley next year.  It’s such an honour to be asked and though I am nervous, Im definitely going to do it… Id better get planning!

I still feel a little in shock about the events of the last two months, sometimes I can’t quite believe that it all happened.  Physically I am healing really well, though I still feel tired easily and Im not back to 100% – I am feeling almost back to normal.  I have eventually found what seems like the right ostomy bag for me.  I was having a lot of issues with leaking and the flange not sticking properly (Its ok, you are allowed to laugh at the word ‘flange’) but after trying out a few different products I have found the DanSac diamond shaped one piece is working brilliantly for me!

I had a bit of a tummy bug last week and had diarrhoea (how can you tell? asked a lot of people – it was like water and there was a lot of it!) and so decided to try the marshmallow trick that was mentioned in hospital.  Apparently a few marshmallows really slow down the output and can stop you getting dehydrated.  I found these bad boys!! The BIGGEST marshmallows I have ever seen!!

mega marshmallows

I attended a Stoma Open day last week.  My friend said they should rebrand it as the Ideal Stoma Show – y’know sex it up a bit! Anyway, it was good to see the different companies and products but if Im honest I found the whole thing quite difficult.  Id say I was one of the youngest people there by a good few years.  Most were over 65 and so the event was aimed at that age range.  It made me feel a bit out of place.  Stall holders seemed to assume I was a carer and didn’t interact with me as they were the other folk visiting.  The thing is, I KNOW that there are a lot of people with stomas through IBD in the 20s to 40s, so it just made me wonder, where are they? Do they just not want to attend these events? Is it because they don’t need them or because they seem so keyed to older patients?

If you have a stoma I would love to know if you attend events like these and if not why not?  If you do, then let me know your experiences of them.

Love Sam xx