Phantom Rectum

Phantom Rectum.  No, this isn’t a really great band name or a ghostly arsehole, but an actual thing that people without a butt sometimes have to deal with.  Let me explain…

You know you hear about people who have had a limb amputated who have a feeling in said limb?  It could be pain, itching or tingling.  This could be due to damage to nerve endings or it could be activity within the brain as it struggles to deal with the fact that limb is no longer there.  This phantom limb pain is very, very hard to treat.

So back to phantom rectum…

People with phantom rectum feel like they need to go to the toilet, even though they do not have a working rectum. This feeling can continue many years after surgery. Some people have found sitting on a toilet can help to relieve this feeling.

sam cleasby so bad ass phantom rectum

Some people also experience tingling, pressure, stinging, burning, pain, itching or aching.  Despite the comedic name, it can actually be really miserable and affect self esteem, confidence and mental health in some people.

Sometimes phantom rectum syndrome is found in patients who still have a rectum, but  don’t have it ‘connected’ as they have had ostomy surgery or other operations to divert stool away from it.  They may experience phantom rectum because of a build up of mucus in the rectum.  But it is also experienced by those who have had the rectum and anus removed completely, this could be because of scar tissue, nerve damage or a psychological effect.

I am only a few weeks out of surgery but I definitely get the old phantom rectum symptoms, I really do think mine is my brain telling my body to do something it can’t.  For example, after a morning cup of coffee when you get ‘that’ urge, I still get that, but there is nothing down there! I can only poo through my stoma, I have no rectum or anus yet I get a real and true physical feeling that I need to pass stool through my butt. It is a very odd sensation though I am getting used to it.  I do still have some pain there, but I think this is because I am still recovering and healing.

sam cleasby parenting blogger fathers self esteem

So what can you do?

If this is a problem for you, firstly, speak to your specialised nurse, GP or doctor to rule out any other issues.  Self care involves sitting on the toilet, relaxation techniques, soothing skin with creams.  Doctors may be able to prescribe medication or other therapies.  Unfortunately, like Phantom Limb pain, it can be very difficult to treat.

For many people it is inconvenient and a bit annoying rather than life altering and I think I am lucky to be in that gang.  Symptoms tend to resolve spontaneously in 50% of cases. Phantom rectum is relatively common but symptoms are usually mild and resolve in time.  I refuse to be embarrassed by this though, and thought a blog post was in order to get people talking about their ghostly butt.

And for the record, I bagsy the name So Bad Ass and the Phantom Rectums for my band name!

 

Surviving and striving

Things have been tough for the past few years but specifically the past 3 months have been absolute shit.

I feel like I’ve been in a really dark time, between work, moving house, losing my grandfather, kids and my health, everything has been so overwhelming.  Yet I’m starting to have hope that I’m coming through the darkness and like my favourite quote, I am remembering to turn on the light.

happiness quotes

No matter how tough life is, you have to just keep getting up every morning, you have to just get through each day.  There’s no real option is there? Everything that’s been going on has been so difficult, my last surgery was massive and such a bloody hard thing to come through.  But I survived it.

And that got me thinking about surviving and striving.  Survival is our basic instinct to get through shit times, it’s our fighting spirit, our adrenaline filled desire to live another day.

Surviving isn’t living though and it’s not enough for me. I want to strive to do more, I want to fill my life with excitement, happiness, laughter and experiences.  And the thing that stops us from striving for what we want is fear.


I have notoriously itchy feet, I am forever searching for the next adventure, the next job, the next event, the next wonder.  That’s not to say that I don’t appreciate what I have! I relish in my wonderful family, my exquisite friends and I find joy in pretty much every day I live.

But I think throughout my life fear has held me back.  The lack of a father made me fearful of not being loved.  I have a huge fear of disappointing those who I love, and sometimes that stops me from being myself.

I have a fear that people will think I’m stupid because I didn’t go to college or university and that becomes a chip on my shoulder that is forever with me and stops me applying for jobs, it stops me speaking to people I think are smarter than myself.

I have a fear of heights that stops me from doing the exciting things my husband and kids want to do.  That teamed with my fear of vomiting in front of others means scary rides, roller coasters, sky diving, all these exciting daredevil things, are a complete no no!

But overcoming my surgeries, surviving 4 operations in 3 years, standing tall after years of health horrors and anxiety filled mind fucks have actually taught me something.  It’s taught me that I have faced and overcome things that would break some people.

ibd warrior inner strength confidence ostomy ileostomy bag

 

It’s taught me that I’m braver than I believe, stronger that I could imagine and a tough old badass.

It’s taught me that if I can deal with the shit hand I have been dealt, then I have no need to fear all the other stuff.  It’s made me want to strive.

So this year (after full recovery, don’t have a fit Timm!) I am going to, more than ever, be brave. I’m going to strive to do more things that scare me, to enjoy more, to try new things and to embrace every new experience that comes my way.

This isn’t about being a daredevil. But about me stepping out of my own shadow and enjoying life. Because I could have died. I could not be here right now and I need to celebrate that I am.

I’m going to fully immerse myself in my new allotment, I’m going to try some classes, go to more galleries, find events that are interesting and try them.  I’m going to say ‘no’ less and ‘yes’ more.  I’m going to read more, go out more, call friends more. I’m going to be a better mother, a more patient person.  I’m going to try and be the fullest version of myself that I can.  No regrets.

I’m not just going to survive. I’m going to strive.

 

Sam xx

How we look and how we feel

Before 2013, I didn’t have the best body confidence.  I was a size 16 with stretch marks and wobbly bits, I had carried, birthed and fed three big babies (9lb9oz, 8lb1oz, 11lb) with one c-section to boot.  Before I had kids, I was a size 8, after my first I was a size 16 and that weight never really shifted.

I was constantly dieting, I would lose weight but then gain it all back again plus a little more.  I hated my body, I thought it was flabby and ugly, it wibbled and wobbled and definitely didn’t look like the women in magazines.  After years of this, it started to piss me off and I sort to find better role models, I stopped buying crappy women’s weekly mags whose aim in life is to point out the flaws of women, I started to think about the qualities that were important in life, rather than the physical appearance of a person.

But it was hard, and mainly I just felt a bit sad and disappointed in my body.  I have been a size 16 for 15 years now and I have learnt that society views me as fat.   I can’t always buy clothes I want as shops either don’t go up to a 16 or they don’t have them in stock.  I know that on the BMI scale I am in the upper part of overweight and when I go out in town, I see people judging me.  But I carried on, with the ever changing diet and dreams of skinniness.

And then in September 2013, I got so ill with Ulcerative Colitis that I had to have surgery to remove my colon and give me an ileostomy bag and everything changed. All of a sudden my focus wasn’t on the number in the back of my dress, or the size of my backside, it was on survival and recovery, of getting over the surgery and learning to live with a bag of poo on my tummy.  All of a sudden, all those worries over calories and cellulite, fat bits and wobbly arses seemed silly.

I have been looking back at photographs of myself and I realise that the things I look at aren’t how big my thighs are, or my stretch marks but that I am healthy and happy.  Even though these images were taken during the 10 years I had with Ulcerative Colitis, they were also during remission periods.  I look at these now compared to my scarred and stoma’d stomach now and wish I had appreciated my body a little more!

sam cleasby body positive plus size ostomy

sam cleasby body positive plus size ostomy

 

The next photos were taken whilst I had my first ostomy, it had been a huge shock to me but I was happy to be feeling well.  I went travelling three months after surgery to Vietnam and Australia, it was hard work but it was so important to me to take control of my life and not let my stoma stop me.

During this time in my life I just felt so happy to be alive! I started to love my body, I celebrated that my body had survived the surgery and began to love myself.  I stopped giving a shit about my cellulite and I wasn’t concerned about my stretch marks, I was just grateful to have a body that worked.

sam cleasby body positive plus size ostomy

sam cleasby body positive plus size ostomy

 

The next shots are from after my reversal, I no longer had my ileostomy and had my jpouch, but the jpouch wasn’t working so well.  I started to feel panic about my body failing me again.  Thinking about my body physically stopped being about the parts society tells me are wrong, my weight, my scars, it was about my health.  My concern was that my pouch wasn’t working, that I was having accidents and that I was going to have to have more surgery.

Honestly, it was a sad time and I think you can see that in these photos.  I had accepted my body for it’s physical appearance but my health worries were a very difficult and heartbreaking time.  I regretted my decision to have the jpouch and I was sick and tired of being sick and tired.

sam cleasby body positive plus size ostomy jpouch

nude beach stone balancing so bad ass sam cleasby

 

And we come to now… I am 6 weeks post op and I now have a permanent ileostomy, I have a bag for life!  How do I feel now? To be honest, I think it is just too early to say, I am relieved to not have pouchitis any more, I am happy that I don’t shit myself, but the bag is something I still need to get used to.

ileostomy bag stoma ostomy permanent ostomy after jpouch removal

I am being careful not to put my stress and unhappiness onto my stoma.

The past few months have been the hardest of my whole life, I had rejection over my book, I am moving house and have had 6 months of stress regarding this move, my grandfather passed away in January, I am feeling insecure in my writing and work and then I had major surgery!!!

I have so much on right now and life is very overwhelming, I take on so much and I think I need to step back from some things that aren’t vital.  I am a parent governor, I run the South Yorkshire Crohns and Colitis group, I work for lots of different people as a freelance writer and life is hectic.  My family is going through everything I am and my kids are stressed out, I am a swan, I am calm on the surface but paddling like fuck under the water.

So with all of this going on, I don’t want to put my emotional state solely on my stoma.  I am struggling, I feel anxious, overwhelmed and ever so sad, but with so much going on, I think I need to give myself a break.

What I refuse to do now though is to berate my body, to feel bad about it. I refuse to diet, I refuse to conform to how society wants me to look.  Everything I do regarding my body is going to be what I want, fuck everyone else.  This is MY body and it has gone through a lot, I am going to celebrate the fact that despite 4 surgeries in 3 years, I am still standing.

So #effyourbeautystandards and rejoice that we are here, we are unique, we are beautiful.  And I don’t need to be a white, size 6, able bodied 20 year old to be fucking awesome.

sam cleasby body positive plus size ostomy ileostomy colostomy

 

Clothes and Ostomies

One of the most common questions I get sent to me is about what clothes to wear when you have an ostomy.  People asking if they can ever wear ‘normal’ clothes again, how to hide your bag, what underwear is best and how to still feel like themselves.

My answer is usually that you can wear anything you like! There are no hard and fast rules, it is about personal preference, some people don’t mind if you can see the bag, others want to mask it.  I think the only thing that affects my clothes choices is comfort.  I want to wear things that I am comfortable in and feel amazing.  Amazing for me feels like wearing something that I love, that also fits well around my stoma and means I can go about my day without paying too much attention to my ostomy bag.

Now I am a permanent ostomate and will have this bag forever, it has meant a reshuffle of my wardrobe and some new clothes.  I started by going through all my current clothes and chucking out EVERYTHING that doesn’t fit well around my stoma, this was pretty depressing and I have to admit, I had a little cry.

It all felt so FINAL to give away my favourite trousers.  But those fave trews have a waistband that sit directly on top of my stoma, I tried wiggling them lower or pulling them over the top but neither worked.  I had to accept that my stoma ain’t moving so what is the point in keeping the trousers?

Then I went shopping! YEY!  Last time I had a stoma, I found that maternity trousers are awesome for life with an ostomy, especially those that have the stretchy panel attached to them and so I hit H&M and bought two pairs of maternity jeans and a pair of maternity leggings.  I also find that a slightly longer than usual top makes me feel tons more comfortable and so searched for tops that made me happy.

So this was my going shopping outfit.  A long stripy skirt, the waistband sits above my stoma and a longer black top with a scarf.  It’s super comfy without being too casual and if you’re concerned about showing the bulge, the scarf hides everything.

Top – George at Asda

Skirt and scarf – Primark

clothes and ostomy ileostomy colostomy fashion clothes and ostomy ileostomy colostomy fashion

clothes and ostomy ileostomy colostomy fashion

 

Onto my bought items, this is maternity jeans and a tight fitting top that is just a bit longer than usual.  I don’t mind if the outline of my bag shows and I am happy to wear tight fitting clothes.  I know some people are more self conscious but I find that no one cares! And if anyone notices, I am happy to tell them about my bag.

You can see the panel and wear it sits with regard to my ileostomy bag.  I love that it keeps everything tucked against my body and it feels safe.  You can also see it from the side.

MAMA super skinny jeans – H&M £24.99

Conscious Long Sleeve Jersey top – H&M £7.99

clothes and ostomy ileostomy colostomy fashion

clothes and ostomy ileostomy colostomy fashion

clothes and ostomy ileostomy colostomy fashion

clothes and ostomy ileostomy colostomy fashion

 

I also went in for some maternity black leggings.  Leggings are great for going under anything and these make me feel the bag is kept tucked against my body so when I wear a dress or top over, it’s not flapping about!

MAMA Leggings H&M £7.99

ostomy and fashion

 

Outfit three was more maternity jeans, black this time and a loose fitting shirt.  I love this outfit as I just feel like myself in it, I can see myself wearing it around the house or going out with the kids.  It’s so comfortable too, I hate wearing joggers, I feel like Waynetta Slob in them and so a comfy, relaxed outfit that I feel like ‘me’ in is just brill.  Again, it’s easy to shove a scarf over for those times when your bag fills up instantly and you look like you’re smuggling a bag of potatoes…

MAMA jeans H&M – £24.99

Cotton Shirt H&M – £14.99

Scarf Primark – £3

clothes and ostomy ileostomy colostomy fashion

clothes and ostomy ileostomy colostomy fashion

This next outfit made me smile, it is a dress I bought pre surgery and I wondered how it would fit me now.  I teamed it with my new black maternity jeans and pumps and I felt like me again!

Dress M&S (About) £30

clothes and ostomy ileostomy colostomy fashion

 

So there we go, my first post ostomy shopping trip.  It may just seem like a couple of pairs of jeans but to me it was the start of getting back to feeling like myself.  I have spent weeks recovering in pyjamas and to now be back in ‘human’ clothes feels amazing.

I really enjoyed sharing my clothes ideas and after receiving a few emails recently from women who feel they can’t wear what they want I think I may share some other fashion posts again.  I am a size 16, 34 year old woman, I know I am no clothes horse but I love fashion and I want other people with an ostomy to know that no matter your condition, your size or your age, you can wear whatever the f**k you want.  Fashion is about fun and expression, the only person it matters to whether your clothes look good is you.

Your style and fashion with an ostomy may have to adapt, you might have to think twice about where that waistband sits, but it is not the end of the world and you can still look and feel like yourself again.  You may want to flaunt your bag, hide it or care neither way, but there is a style of clothes that will fit you and make you feel awesome again. You just need to look for it.

 

Sam xx

Why Miriam Margolyes was wrong to judge a book by it’s cover

Miriam Margolyes is the wonderfully outspoken actress from Harry Potter and star of recent TV show The Real Life Marigold Hotel.  She spoke out this week about an incident at Waverley Train Station in Edinburgh, when a young man refused to give up his seat for her.

Miriam told the Daily Mail that she has arthritis and was carrying a backpack when she looked for a seat on the station platform, when a man refused to give up his seat and pointed to one further down the platform, she emptied a water bottle over his head.

‘I was really p****d off. It’s really hard being old — it’s horrible. I was in pain. I was really hurting,’ she says today. ‘So I just thought, ‘F*** you!’ and I took my bottle of water out, took off the lid and poured it over his head.’

Now, as much as I do like Miriam, and I think that if you are able, you should give up your seat to those who may need it more than you.  Older people, people with mobility issues, pregnant women, all those who may need a bit of assistance, but you can’t judge a book by it’s cover.

sam cleasby tut disabled toilets more than meets the eye

Last week I was at the coast, it was only 4 or 5 weeks after surgery and it was a scary feat to be away from home.  I was away with art group Responsible Fishing UK for a project with Coastival, I wrote a story that was transformed into an art installation, my words were carved into tubes and became floating lights in a story trail.  I am really proud to be part of this and though I wasn’t able to be part of the installation, I wanted to be there to see the finished product.

responsible fishing uk a light to guide

Anyway, we stayed in a big holiday home with our friends who looked after me and were just brilliant, one afternoon my friend had to nip to a shopping centre and I wanted to get out of the house.  It was good to just be outside for a short while, after 10-15 minutes though, I was struggling.  My stomach was sore and my back aching, so I went to sit on a bench whilst my pal finished her shopping.

As I sat, an old man came and sat next to me, then another.  Then I saw an old lady shuffling towards the bench and thought ‘oh crap’.  I knew it would be expected of me to stand and give up my seat and as she approached, I was panicking wondering how to deal with this.  I knew that though inside I was in pain and I was starting to worry about a bag leak, on the outside I looked like a young, healthy, able bodied person.

She got closer and the two men looked to me, I hesitated, embarrassed and then one man stood up to give his seat.  I could feel the judgement and so I bit the bullet and spoke up.

‘I’m ever so sorry for not giving my seat, only I’m recently out of surgery and I really need to sit right now’

All three were polite and kind and told me not to worry about it and to rest my legs and I have to say I was relieved, yet I was a bit embarrassed that I had to explain my personal medical issues.

more than meets the eye sam cleasby sheffield so bad ass

So when I read this story, I couldn’t help but relate my own experience to it.  The Daily Mail describe Miriam as “a 4ft 11in, 74-year-old — her bosom alone is the size of small hay bale — with a knapsack on her back, a wheelie case in one hand and hobbling in pain from an arthritic knee (she’s having a knee operation in May).” and only says the man was young and on his phone.

It is easy to assume the worst, but the reality is that we have no idea of his circumstances, perhaps he had his own, less visible, health issues.  Perhaps he’d had surgery, perhaps he had back issues, perhaps he had one leg! Maybe he had anxiety problems or autism.  We just don’t know and as the More Than Meets The Eye campaign shouts about, there are so many invisible or hard to see medical issues that millions of people deal with every day.

Does Miriam have the right to be pissed off that she doesn’t get a seat? Yes, if that’s how she feels.  But does she have the right to judge all those around her who aren’t 4’11 arthritic pensioners, does she fuck…

Scope’s #EndTheAwkward Romance Classics

It’s almost Valentine’s Day and the fabulous Scope are all about the romance.  As part of their End The Awkward campaign, they’ve kicked off the most romantic time of the year by releasing swoonsome recreations of iconic Mills & Boon book covers – starring disabled people.

They created Scope Romance Classics in response to their new polling that shows just 6% of people in the UK have been on a date with a disabled person they met through an online dating site or app like Tinder. This is because too often people don’t see disabled people in romantic situations. So they made them the romantic leads for Valentine’s Day.

I love it! I love the whole End The Awkward campaign that aims to normalise disability by showing people with disabilities in everyday situations in the media.  On Valentine’s Day, it is a great time to think about everyone in society, not just able bodied.  How often do you see people with disability in romantic situations in the media?
mills and boon scope

 

 

I was really proud to be part of Scope’s A-Z of Sex and Disability last year which aimed to share the experiences of people, educate and support those struggling with their own sexuality due to illness, accident or disability.

mills and boon scope

 

For more information on Scope and End The Awkward, head over to their website now.

 

Stoma skin problems – WARNING Graphic images 

I have had some issues with my Stoma post surgery. The stitches came away from the skin leaving me with a large hole into my stomach.

It was bloody awful to look at, it was really nasty and made me queasy. I documented the healing process though as in the beginning I couldn’t imagine it getting any better.

Be warned that the images in this post are really quite graphic.  If you don’t like images of open wounds and stomas, I really wouldn’t bother with the rest of this post!

The reason for this post is not to shock but to teach and comfort anyone who has had this happen to them, when it first happened to me, I panicked and was really upset and terrified.  I could see into my body!! I spoke to my stoma nurse (and I 100% recommend that you speak to a medical professional if you are having any issues!!!) and she told me that it wasn’t that rare, that I needn’t be too concerned and that with treatment, it would soon be sorted.

I used a paste to fill in the hole, it was the Convatec Stomahesive paste that does really sting for the first few seconds when you apply it, but it does the job.  It fills the hole so poo can’t get in and then heals it from the inside out.

Apart from the obvious need to heal the hole, what is important is that when you have a would like this, it stops your bags from sticking properly and when you don’t have a well fitting bag, you get extremely sore, wet skin which in turn, further stops your bag from fitting… It is a vicious circle that is miserable as if you don’t have a well fitting bag, you get leaks and leaks stop you from living a normal life.

I feel I have given enough warnings now, the photographs below could be upsetting if you don’t like seeing inside a body!! So scroll down if you want to see the healing process and I really hope it helps.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

*FINAL WARNING*

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

stoma problems my stoma has come away from the skin

Day 1 – 15th January –  the stoma has come away from the skin.  You can see the stitches still surrounding my skin.
stoma problems my stoma has come away from the skin

Day 3 – 17th January – you can see it has got worse here, this is before any treatment.  You can see right inside here!

 

 

stoma problems my stoma has come away from the skin

Day 5 – 19th January – I had been using the Convatec Powder but it wasn’t really helping.

 

 

stoma problems my stoma has come away from the skin

Day 7 – 20th January – it was really bad here, though the wound is starting to heal from the inside, you can see how my bags haven’t been sealing properly and therefore the skin around my stoma is blistering and burning.  This is from my very acidic poo getting on my skin and burning away at it.

 

 

stoma problems my stoma has come away from the skin

Day 8 – 21st January – still really bad! Those open burns and blisters are extremely painful.  I saw my stoma nurse on this day and she wasn’t happy with the powder treatment and started me on the paste.
stoma problems my stoma has come away from the skin

Day 11 – 24th January- after just three days using the paste, you can see the VAST improvement.  The wound is healing and you can see that my skin is healing too.  The paste goes around the stoma and fills in the hole, it means no poo can get on my skin.  You can also see that the last of my stitches have dissolved or come out.

 

 

stoma problems my stoma has come away from the skin

Day 14 – 27th January – my skin is almost completely healed after 6 days using the paste and you can see that the wound is almost completely closed.

 

 

stoma problems my stoma has come away from the skin

Day 21 – 3rd Feb – after another week using the paste, my skin is healed and the wound is well on it’s way to being filled and healed!

 

 

stoma problems my stoma has come away from the skin
Day 23 – 5th Feb – another two days and it is pretty much there!

 

 

stoma problems my stoma has come away from the skin

Day 29 – 11th Feb – the wound is completely healed though my skin is still slightly discoloured.  You can see how well healed the rest of my skin is as my bag is fitting perfectly and so I am having no seepage or leaks.

 

*********************************

So there we go, that was my process from wound opening to healing.  As I said, I have shared these photos and this post to help anyone going through skin problems and so I hope this has been of use.  It can be extremely scary when things go wrong and I think it is good to see other people’s experiences so you can see there is light at the end of the tunnel.

Don’t forget that your stoma nurse is the best port of call for any stoma issues, they have seen it all before and will have treatments and solutions.  My first treatment didn’t work for me but the second was brilliant, my stoma nurse told me there were more things to try if it didn’t work though.

I hope my openness helps everyone with a stoma to not worry, not be embarrassed and to speak out and get help if you have any issues.  And for all you who just wanted a gawk, I hope you enjoyed it!!!

 

Sam xx

The Plug and CCUK 

Last year, The Plug nightclub in Sheffield got in touch with me, they’d seen my blog and the work I do and wanted to help.

They choose charities and donate the income from their guest list donations. So basically, if you are put on the guest list to see a band at The Plug, you are asked on the door for a small donation. Seems fair if you’re blagging your way in for nothing!

Anyway, they asked me who I’d like to donate to and I, of course, chose Crohns and Colitis UK.  I volunteer for the South Yorkshire branch of CCUK and so the money will go directly to the people of South Yorkshire which is just awesome!

plug sheffield charity crohns and colitis UK

I would like to thank The Plug for an astounding £732.62! This money will make a big difference and I am super proud of being part of this.

If you live in South Yorkshire and either have Crohns or Ulcerative Colitis, or if you have a close family member or friend who does and you want support and information, then please do get in touch, attend the coffee mornings and get involved!

CCUK are a charity so close to my heart, it is well worth joining the national charity for support and info and then getting involved in the group in your area.

 

Sam x

Kintsukuroi – more beautiful for having been broken

It has been four weeks now since the big op and I am beginning to get used to life with my ileostomy, it has been a bigger change than I thought.  This is the second time that I have had a stoma, the first time was two years ago and then I went on to have a ‘reversal’ where I had a jpouch, when that failed, the decision was made for me to go back to have an ileostomy.

I really thought that as I have been through the shock of this surgery once already, that I would be better equipped to cope this time round.  And in many ways I have, the knowledge of how to change my bags and care for my skin have meant that I have been able to dedicate my time to recovering from the operation rather than learning the technical side of life with a stoma.  But it has still knocked my confidence.

stoma ileostomy femininity #stomaselfie stoma ileostomy femininity black and white photography creative shoot

I think it is the knowledge that this stoma is permanent, it is a bag for life.  It was a necessary move but one that I wasn’t entirely happy with, and so I have had some negative feelings about my bag.  I have felt self conscious, embarrassed and upset.  I am trying to remember all the positive things to have a stoma, the health benefits, the lifestyle choices, but it is still a blow to be back with my bag and I have been struggling to come to terms with it.

Today I read about a Japanese art form called kintsukuroi, which means “to repair with gold”.  When a ceramic pot or bowl breaks or cracks, it is put back together again using gold or silver to create something stronger and more beautiful than it was before.

kintsukuroi

It doesn’t hide or cover up the damage, it embraces the crack and acknowledges the history of the object whilst celebrating it’s imperfections and flaws.  It is the art of understanding that the object is stronger and more beautiful because it has been broken.

What a gorgeous sentiment!

It got me thinking about my stoma and reminded me that how we see things comes from our attitude.  I can choose to feel sad that my body is covered in scars, that it’s broken and damaged.  Or I can think of myself like Kintsukoroi, I have been repaired with something precious and I am stronger and more beautiful for it.

I think I’ll choose the latter.

Sam xx

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