Body painting

Last year I got one of those odd phonecalls, they are always the best ones, asking if I would like to have my body painted for BBC Radio Sheffield. And of course I said yes!

It was a party for the Naked Podcast and after I appeared as their guest, I was painted live during the show by the brilliant Julia from Julia Arts Body Painting.

We decided on an Egyptian theme around the scarab beetle. The Scarab is also known as the Dung beetle so it seemed fitting but they also symbolized the restoration of life and we thought that was a nice touch after so much illness and surgeries for me.

body painting sheffield

body paint sheffield ileostomybody paint sheffield woman positivity ileostomy

Julia was great and gave me plenty of rest breaks and kept asking if I was ok, she put me completely at ease which wasn’t easy being half naked in a room full of people whilst having someone paint your boobs!

I waited till it was finished to see the final artwork and I was blown away.  It was an odd feeling but I felt so empowered, I felt like a queen! I got quite emotional to see my body that I am so used to seeing scarred, sore and broken to be displayed as this beautiful, living, moving, celebration of who I am!

It was such a positive experience and I can’t thank Julia, Kat, Jen and Paulette enough for giving me such a wonderful feeling of power and celebration.

Sam x

Telogen Effluvium – Hair loss after surgery

I have had 8 surgeries related to IBD over the past six years and something that no one told me about was hair loss. Hair loss after surgery is known as Telogen Effluvium and today’s post is all about the T.E. I wrote a little about this in 2016, you can see that post here.

Hair loss after surgery

Usually around 3 months after surgery, I start to find my hair falling out. Firstly, it is more than usual in a hair brush. Then when I wash my hair I find lots more than usual coming out. I then start to find it on my pillows, coats, desk, everywhere! It is really distressing and I was shocked to find out how common it is. And how little people are told about Telogen Effluvium. This is when the stress placed on your body after surgery has interrupted the growth cycle of your hair.

As I always say, this blog is not meant to replace any medical advice and if you suddenly begin to lose your hair unexpectedly, then always speak to a medical professional. There are many other reasons why you could be going through hair loss and it’s important to rule out anything more serious.

red hair sam cleasby

I have had so many different hair cuts, styles and colours, it’s a running joke that people never recognise me as I can look so different. I have naturally very thick, straight, dark hair but I enjoy changing it up.

Shaving it off

But hair loss wasn’t something I thought about. So when it first thinned out and was coming away by the handful, I was terrified. But as my hair is so thick, others said that couldn’t tell. I was lucky that it thinned all over as opposed to coming out in chunks.

Last year, I found my hair getting very thin and coming out all over the place and so I decided to shave the lot off! Probably a bit drastic for some, but I have had a shaved head a few times and loved it, so off it went!

Sam Cleasby ostomy bag stopping smoking hernia telogen effluvium

Why Does it Happen?

The following information is from the Hair Sentinel website. and from The British Association of Dermatologists

During times of stress, the body will send its precious resources (vitamins, minerals etc) to the areas they are needed the most. This means that important nutrients are diverted away from the hair follicles and towards other parts of the body that need them more (for example, when healing after surgery). The name of the subsequent hair loss is telogen effluvium.

Telogen Effluvium Explained

There are three stages of hair growth:

  • anagen
  • catagen and
  • telogen

The anagen phase is the ‘growth’ phase, when the hair bulb forms in the follicle and grows into an actual ‘strand’ of hair.
This phase lasts anywhere from 2 to 8 years.

The catagen stage is the ‘transition’ stage. In this time, the hair stops growing and moves up in the hair follicle.
This stage lasts for about 10 days.

The telogen stage is the ‘resting’ phase, and this is where the hair stays until it’s shed.
This stage lasts for around 3 months.

When the body undergoes the physical stress of surgery, it enters the ‘telogen’ stage too soon, and is shed at the end of the stage, 3 months later.

What causes telogen effluvium?

What causes telogen effluvium

Increased hair shedding in telogen effluvium occurs due to a disturbance of the normal hair cycle.

Common triggers of telogen effluvium include childbirth, severe trauma or illness, a stressful or major life event (such as losing a loved one), marked weight loss and extreme dieting, a severe skin problem affecting the scalp, a new medication or withdrawal of a hormone treatment. No cause is found in around a third of people diagnosed with telogen effluvium.  

Will the Hair Loss Stop?

Telogen effluvium usually resolves completely without any intervention as the normal length of telogen is approximately 100 days (3 to 6 months) after which period the hair starts growing again (anagen phase). However, depending on the length of the hair, it may take many months for the overall hair volume to gradually return to normal. Telogen effluvium can return, especially if the underlying cause is not treated or recurs, and would be called chronic telogen effluvium if lasting more than 6 months.

It’s good to know that it’s extremely rare for hair loss after surgery to result in baldness. There is normally no treatment for telogen effluvium as the hair will start growing back once the trigger is removed. Medication does not speed up this process.

Where I’m at now

So as my hair started to grow back last year, I then had another surgery. Though I didn’t notice much hair loss after this one, I felt like my hair was getting back to some health. Weirdly, it has grown back much curlier than before though!! But this past week as I am now 3 months post op again, I am noticing more and more hair falling out in the shower. So I think it is all starting over again.

Sam cleasby

The emotions around hair loss

We talked about hair loss over on the So Bad Ass facebook page so you can head over to read other people’s experiences.

I know that for some, hair loss can be absolutely devastating. Just another kick in the teeth after a long journey of illness. For many women, hair feels like a big part of their personality and femininity.

Despite having shaved my head several times, the hair loss does really bother me. It is the lack of control of it all. It is scary to wash your hair and pull your hand away and see a big handful of hair there. As my hair is thick, others say they don’t notice and so it can feel a little like I am being dramatic when I say I feel upset by it. But whether anyone else sees it or not, it still is very real to me.

Have you been through hair loss, either through Telogen Effluvium or for another reason? How did you feel? What did you do to manage the situation? I’d love to hear your experience.

Sam xx

Glastonbury fun

I talked a bit about my Glastomadrama at Glastonbury. It was pretty stressful even though it did all end well. But I thought I would just share a few photos as we had a really lovely weekend.

I was unsure as to whether we would make it at all as it was only 7/8 weeks after my surgery. But as Timm and my son were working there, it would have been pretty lonely at home. I am so glad I made it, even if I did have to rest a lot whilst we were there.

Sam and Timm Cleasby at Glastonbury festival

We had just the loveliest weekend. It’s been a really stressful time and to get some one on one time with Timm was pure joy. Charlie came with us (Eli is in Australia and Thom didn’t want to come so stayed with his bff) but he is nearly 19 so didn’t want to spend the whole time with us. He mainly just popped back for food, drinks or cash! So it was brilliant to get some time with Timm that was about nothing but fun.

Glastonbury flags

Glastonbury

If you haven’t been to Glastonbury, it’s like another world. A whole city of over 200,000 people, it is absolutely huge! My first Glasto was in 2000 when I was 6 months pregnant and this was my fifth time there. If you have an impairment or disability, then get in touch with the access team as soon as you have your tickets. You can talk through your needs and ensure you have things put in place to support you. Whether that is PA tickets, accessible camping, accessible toilets, disabled platform access or more, don’t assume that you won’t be able to enjoy a festival, have a look into what they can do to make it accessible to you.

she wee at festivals ileostomy bags

For me, it was all about access to the toilets so I knew I could get there at a moments notice and have the space and facilities to change my bag if needed. I didn’t use the accessible toilets unless it was necessary or an emergency. When you are facing a stinky, overflowing festival toilet, having a she wee and an ileostomy was a god send!! Stand up wees and poos for the win!!!

Glastonbury with a teenager

I’ve always taken the kids to festivals since they were babies but it is so different with an adult child! I have to say it was lovely to not have to worry too much about him. It was also great to have time to see bands we like together. He is an absolute doll that biggest bambino of mine!

Camping with an ileostomy, festivals with a stoma chronic illness and festivals

It was a HOT one! Temperatures were well into the 30s which made my ileostomy bag a bit of a nightmare. It was hot and sweaty and trying to keep hydrated was tough. I took some rehydration sachets with me (I always keep some in my kit bag, theyre my number one recommendation!) They were so useful in staying hydrated and well.

Your festival, your way

The main thing for me is to not fall into the FOMO trap and to listen to your body. As I was recovering from surgery and also just living with the aches, pains and fatigue of chronic illness, I know I need to rest. It is easy to feel that you have to do festivals a certain way, that it’s about going wild and being out all night. Or feeling you have to see every single band there.

The reality is that you do your festival your way. Sure, make a list of the bands you’d like to see, but also know that you probably wont see them all. And the things you don’t expect to see that you fall upon will be the best things ever.

Listen to your body and do what you need to do. For me, that meant missing Stormzy as the crowds were too big and I got quite anxious at the thought of being knocked in my stomach. But instead we went and sat in the stone circle and had a drink and watched the whole beautiful festival below us.

It meant going to bed at 9pm on the Saturday night because I was exhausted and in pain. But it was lovely, I had a cup of tea and read my book whilst listening to the Killers playing in the background. My Glasto might not be everyone’s cup of tea, but it was right for me and that’s what is important.

relaxing at a festival chronic illness

The whole weekend was a joy and though at times it was tiring, I was so proud of myself for making it there.

Here’s to Glastonbury 2020!

Sam xx

My Glastonbury hero – there are still good people in the world

Let me tell you a story about how people are wonderful. A modern Glastonbury tale of social media and kindness.

In April this year, I had my 8th surgery in 5 years. We had Glastonbury tickets and I thought there was no chance of making it, I didn’t think I would be well enough to go.

But I did make it!! Thanks to the accessibility team for sorting me toilet and access route passes and my husband for tons of patience and support. If you are attending a festival, do check on their website for access information and get in touch with their team to discuss your needs. You can find Glastonbury’s Access information here. Also check out Attitude is Everything. Attitude is Everything improves Deaf and disabled people’s access to live music.

Anyway, I got there to the hottest glasto in a long time and my stoma started playing up. The stoma bags were peeling off and I went through 16 in 4 days. I think it was a mix of the heat, sweating, my still lumpy and uneven tummy and unfamiliar food.

Stoma problems

Usually I change my ileostomy bag every 2 or 3 days, so to be safe I packed 18 bags so I’d have loads spare. But by Saturday at Glastonbury I only had 2 bags left and my bag keeps leaking. I enter panic mode, how on earth have I gone through so many? Why didn’t I pack even more? Was I going to have to go home

We went to the medical tent but they didn’t have any ostomy bags. They suggested calling my supplier or going offsite to the nearest hospital and asking them. I called my supplier but they were closed till Monday. The thought of getting offsite and out to a hospital and then getting back seemed too much to bear.

So I decided to tweet my plight with the hashtag #glastomadrama and got 100s of retweets! Maybe just maybe, there will be someone here who has a few bags to spare? I’m panicking, this could be festival over. To get so far to get here then have to leave?! Gutted!

Then I got a phone call from BBC Sheffield – a woman has seen my tweet and called her dad. When he couldn’t get in touch with me, hed seen I present on the BBC and called them to give me his number!

My hero

He was at Glasto and has some spare ostomy bags! I can’t believe it, a knight in stoma bag armour!! We navigate a meet up, which anyone who has been to Glastonbury knows can take a long time and be a nightmare. We exchange text messages saying “I’m wearing a shirt with tigers on it and I’m outside the Caberet tent” and “I’m an old man wearing a flowery hat”!! Eventually we find eachother and he’s happy to give me the bags. But there’s a problem, the bags are in his campsite the other end of Glasto, maybe an hour or so walk. I feel a bit sick, I just don’t think I can manage the walk there and back.

So we went to the Welfare Site and asked for help! They called the A Team who came to our rescue and drove us both to his campervan to redeem the ostomy bags and saving my festival!!!!

Glastonbury A team welfare team disabled accessibility

Andrew spent a good few hours of his Glasto to help out a perfect stranger. He could have ignored the tweet, he could have realised I couldn’t manage the walk &not want to wait for the a team to drive us, he could have turned his head and pretended not to notice. He didn’t.

If not you, then who?

This is Andrew. He redeemed my faith in humans and saved my festival. He said to me ‘if you’re able to help someone, then help them, if not you, then who. If not now, then when?’

Glastodad glastonbury with an ostomy bag

Thank you Andrew, you’re a true gent!

Sam xx

My 6 week post surgery check up

This morning, I headed back to hospital for my 6 week post surgery check up. I had two hernias fixed in my last surgery, a parastomal hernia resolved, my stoma resited and abdominal reconstruction. It was a big operation and was my 8th surgery since 2013.

6 week post surgery check up

I’d been warned that it was going to be a very tough recovery. That I would need 2-3 months off work and to prepare for a lot of pain. Its been a tough 7 weeks but I am really pleased to say that everything has gone well and my recovery is right on track! I am still swollen and have some hard lumps of scarring but they are happy with the results.

The check up was with one of the surgeon’s team. The doctor examined my stomach and talked through all of my concerns. I felt very nervous that he was going to find some complications but he said I was doing better than expected. I am feeling really relieved. Thanks to Timm for driving me and being there . We talked through all the questions I wanted to ask before so that he could remind me if I forgot once I was in with the doc. If you don’t have someone with you at your appointment, I suggest writing a list as it’s easy to forget!

Timm and Sam Cleasby 6 week post surgery check up Sheffield northern general hospital

Back to work

I am signed off work till the end of June and they’ve suggested a phased return to work from July. I’m both nervous and excited about this. I work for the disability charity Scope and they have been so supportive to me during this time. They haven’t put any pressure on me and have supported me in taking the time I need to recover.

I also present a radio show on BBC Radio Sheffield on a Saturday morning from 10-12 called Nowt So Strange As Folk. I returned to that a couple of weeks ago thanks to Timm being my chauffeur. It’s only 2 hours a week but it’s mentally tiring. I have been coming home on a Saturday and spending the rest of the day in bed!

Exercise after surgery

We have discussed my recovery moving forward and at the 6 week post surgery check up. The doctor said they were happy for me to start an exercise regime. I am joining the gym and will be seeing a personal trainer as part of my physiotherapy.

I stopped smoking in February this year in preparation for the surgery and I’m happily now a non smoker. This is so important as there’s a link between smoking and recurrent hernias.

I am also aiming to lose weight and get much stronger. I’m currently classed as overweight and this can mean I’m more likely to get another hernia. It’s been an awful 6 years of recurrent hernias and so I need to do everything I can to reduce my risks. I’ll blog more about the exercises Ill be doing after I see my PT in July.

Mental health

I have been quite up and down mentally, it’s really tough to be stuck in bed unable to be independent. And even more so when it’s the 8th time in 6 years! I have slipped into depression before after surgery and so it’s at the forefront of my mind to take care of my mental health.

One thing that has been difficult is that I am reacting to certain things that make me feel right back in that hospital bed. The other night I was flipping through the TV channels and I happened upon a real life hospital show. .I paused and watched a patient in a bed writhing in pain. The doctors and nurses were rushing about, the machines bleeping, and I felt my chest tighten. I felt jittery and panicked and a fear washed over me. I was sweating and struggling to breathe.

A similar thing happened the other night. My ileostomy bag leaked in bed. It was only a slight leak onto my skin, I caught it before it went on my sheets. So I cleaned myself up and changed my bag and then saw a air freshner spray that had been in my hospital bag. I sprayed a couple of squirts to cover any poopy smells in my room. That smell of the spray immediately took me back to being in the hospital bed and I went into panic mode again. After talking to a friend I recognise that certain sights, sounds and smells are triggering me. This is common with people suffering from PTSD (Post Traumatic Stress Disorder).

So though I am feeling positive for the future, I am aware that my mental health has been affected by all of this. I have started back on my antidepressants and I am really focussed on looking after myself. From meditation to self care, planning to spend time and energy on myself is really important.

The future

How does the future look for me? I don’t know. I have to hope that it will be surgery and complication free. The thought of going through all this again and ending back in the same place is just too much to bear. I don’t think I could cope with more surgery and to be honest I don’t think they would consider another hernia repair as I have had so many now and my abdomen is such a mess.

But I cannot think about the worst as it would make me spiral. I need to think positively and plan for success. My goal is that by next year I will be strong enough to learn how to kayak. I want to spend the summer camping with Timm in our campervan, hiking, wild swimming and kayaking. It is a dream right now, but I am going to put all my effort into building as much core strength and muscle as I can. And all I can do is to try my best.

Peace and love

Sam x

I did something awful

Recently I did something really awful, something I’m quite ashamed of and that I really should know better. I judged someone on their social media and their chronic illness. I saw someone posting about going out to a social event and thought “Oh, I thought this week you were really ill?!”

Someone I see on social media has an invisible and chronic illness and shares their life to educate others about the impairment. They had been posting a lot about how difficult a time they are having and then I saw a photo of them heading out to a really busy social event. And I judged them.

I’m embarrassed about this and I’m not writing this post to make any single defence. But to talk about how we all can sometimes judge others even when we truly do know better.

Feeling judged? I should know better

I publicly share a lot of my life, the highs and the lows of life with a chronic illness. And I have been judged many times. People making comments about me going for dinner when I have said I’m struggling with fatigue. Asking how come I can manage to go to a festival when I have shared my pain levels. People just openly telling me I don’t look sick with a suspicious stare as if I’m making it up.

So I’m shocked and ashamed of myself that I had this thought. I wondered how they were going to manage going to an event when all their posts that week had been about extreme pain and inability to walk. How very dare I?

Because the reality is that you have no idea what someone is going through by just looking at them. And when you feel judged, it just makes life feel worse.

I have managed to work a full time job whilst living on painkillers with horrific pain, insomnia, depression and awaiting surgery.

I have been on a night out despite feeling like death because I was fed up of letting friends down so much and not wanting to cancel. I’ve shit myself on a night out, cleaned myself up, changed and then smiled for an instagram selfie.

On my wedding renewal day, I was bleeding from my jpouch so heavily that I had to wear a pad. Yet my photos wouldn’t give that away.

timm and sam cleasby wedding

Festival and travel

I’ve been to festivals whilst being desperately unwell because I didn’t want to lose the ticket money and ruin other people’s plans.

I’ve travelled the world whilst recovering from major surgery, feeling terrified, fragile and had to carry a case filled with medication. On one trip I had to inject myself every single day into my stomach. But my holiday photos don’t tell that tale.

india with an ostomy taj mahal in a wheelchair sam cleasby travel blog judged

I have had people write comments on my social media criticising my for these things, saying I don’t look sick. People saying to my face or online that if it were really as bad as I say, then I wouldn’t be having a social life like this.

And it’s a crippling feeling of judgement, a weighty slump of worry. Not feeling believed, supported or understood. It’s devastating.

So I have no idea why this mean spirited thought popped into my head when I saw someone doing something fun despite their illness. I can only say that I didn’t comment to them or to anyone else and as soon as I thought it, I caught myself and gave my head a wobble.

Perhaps it was jealousy more than anything (not that it makes it ok). I’m 5 weeks post op and still in an awful lot of pain. I’m exhausted all the time and though I’m getting better, it’s still really tough. And maybe I just wished I could be doing what they were.

Be kind yo

I suppose the reason for this blog post is a reminder that sometimes we all can judge others unfairly. That we can think the worst and make unwarranted and negative assumptions. But those thoughts and assumptions are on us and we all need to remember that everyone is fighting their own battles and you have no idea what they are.

If you find yourself judging someone else on something that you have no idea about, then keep it to yourself! And then think about the damage those negative comments can make to another person.

We have all done it. But if we’re aware of how wrong it is, then hopefully we can make the world a little kinder.

Be kind quote everyone is fighting their own battle

We seem to live in a world where social media tells us we can never make a mistake. We can never slip up, say or think something out of character. The truth is we all fuck up from time to time, but if there is no room for self recognition and allowance to learn, educate yourself and make positive changes, then where are we left?

To err is to be human, and in my poor thoughts I have realised that we can all mess up. I’ve been judged in the way I judged someone else. And it made me realise that maybe we need to speak up a little more when we do something wrong. And maybe society and social media need to be more open to allowing people to make amends for their mistakes?

✌🏽 & ❤️

Sam xx

Happy birthday me!

Today is my birthday and I reach the grand old age of 38! I swear in my head I’m only 19…

Happy birthday me!

It’s been a hell of a year, two surgeries, losing my nan, our American adventure, depression, a break down, a new radio show, lots of pain and plenty of struggles.

I’ve learnt a lot this year. I’ve learnt that you just never know what is around the corner. That we need to care for ourselves. Hold the ones we love close and let go of the negative bullshit in our lives.

Love my narwhal birthday cake

Feeling positive

For the first time in a long time, I’m actually feeling positive and hopeful. I have the most amazing friends, a loving and supportive husband, jobs I adore. I also have brilliant kids who are setting off into the world on their own paths. We are crossing everything that this last operation will be the one to make it all better.

I feel like I’m able to make plans for our future. To really assess the things that bring me joy and go after them.

I’m planning to get strong. As soon as I’m able I’ll be working with a physio to get my body as strong and healthy as I can and I can’t wait!

Timm and I are so lucky to have our friends Caroline and James in our lives. They are our family and have been there for us every step of the way through some of the toughest years we’ve ever faced. We are forever grateful to have such amazing people with us.

So what am I hoping for the year ahead?

I want to get back to work as soon as the doctors agree. Camping trips in our campervan with fires and countryside and dogs. I’m going to get strong and fit enough to get walking, to be able to go and hike and be in nature. Also I want to learn to kayak!!!

I wish the greatest happiness to my son who starts University this year. Love and strength to my child who is off travelling for two months and all the best for our youngest in everything he wants. It’s big changes to us as a family unit with C leaving home but I hope it makes us all very happy.

I hope to have the strength to do more blogging, more raising awareness and to expand So Bad Ass.

Mainly I just hope we can have a happy year filled with kindness, laughter and love.

So happy birthday to me! I hope 38 is the year it al starts going right!

✌🏽& ❤️

Sam xx

Smoking and Hernias – do you know the connection?

I know this isn’t a popular thing to say, but I do love smoking. I know how bad it is, I know it’s stinks and is dangerous, expensive, stupid etc etc etc. But I love a good old ciggie! I have smoked since I was about 14. I’ve stopped several times, didn’t touch them whilst pregnant, breastfeeding and after surgeries. But every time I go back to it because I thoroughly enjoy smoking. But learning about the connection between smoking and hernias has shocked me into giving up the fags.

I saw my new surgeon Mr Adam in February. He told me I have a very high risk of complications during the surgery, around 75%! Mr Adam said I could drop that risk by 10% if I stopped smoking, even just changing to the e-cigarettes. Also he told me that there is a very real link between smoking and recurrent hernias. I was devastated to find this out.

On the 6th of February I had my last ever cigarette! I bought an e-cig and that was really useful to get me through the cravings of nicotine. Then I stopped using that in April and now I am officially a non-smoker.

Missing the smoke

I have to say that it’s still not easy. It’s been four months since I had a cigarette and 6 weeks since I used the e-cigarette. I still think about it all the time. I would say around twice a day I really crave a cigarette. If it weren’t for what I have learnt about the connection between smoking and hernias I would have started again.

Sam Cleasby ostomy bag stopping smoking hernia

Smoking and hernias

So smoking and hernias, what is the connection? After getting numerous hernias over the past five years since I started on this surgery journey for the Ulcerative Colitis and having multiple hernia surgeries I am so disappointed that the link between smoking and getting an hernia has never been pointed out.

Smokers develop hernias at a higher rate than nonsmokers. Smoking causes a decreased rate of collagen formation. This is due to the effect of nicotine, which weakens the abdominal wall. Patients who smoke are four times more likely to develop a recurrent hernia as a result of the effect smoking has on wound healing. This information comes from the Hernia Centre.

Cigerette smoking and risk of hernias

I think this is something that should be told to every single smoker who has abdominal surgery. Getting my stoma and ridding myself of the effects of Ulcerative Colitis saved my life. It made it so much better. But then having 6 hernias over the past five and a half years has ruined it all. The hernias have stopped me from doing so much, I’ve had repair after repair. Months of pain, so many tears and honestly, I feel devastated. I could have been doing something that has caused the recurrent hernias.

The cost to the NHS

It’s not even just the personal effects, I have had multiple surgeries to repair these hernias. The past two surgeries have been high risk, long, complicated surgeries. I’ve spent time on the HDU and weeks in hospital. How much does that all cost?

I have had to have so much time off work, my kids have suffered. My whole family has had to struggle through having a mum who is in constant pain and then having operations and then months of recovery. And maybe, just maybe, I wouldn’t have got these hernias if I had stopped smoking earlier. And I would have done, if I had been told.

I accept my own responsibility in this. Of course I knew smoking was bad for me. But it was in that general way that we all do things that aren’t good for us. Some smoke, some drink alcohol, take recreational drugs, eat too much red meat and sugar etc. If I had been told that skoming has a direct link to the recurrent hernias that have ruined the past five years of my life, I would have stopped.

I am not preaching, I’m not trying to tell anyone what they should do, but I wish someone had told me about this after my first surgery in 2013. So I just want to pass the favour on so everyone has the information and can then make their own educated decisions.

Sam x

Let’s talk about… vaginas

Today I wasnt to talk about vaginas. In an article in the Guardian it states that one in five young women in the UK has experienced bullying about periods. It also discusses how boys should be taught about menstruation in school. “If men don’t know about periods, how can they take period poverty or the tampon tax seriously. Or even sympathise with someone in pain once a month?”

Everyone should be given proper menstrual education. Chella Quint created the project Period Positive. Chella “believes menstruation education should be free, unbranded, objective, inclusive of reusables (like menstrual cups and cloth pads), and easy to understand.” They say “We strive to ensure that no matter what your gender, whether you menstruate or not, that you’ll feel more confident and comfortable talking about menstruation publicly and privately.”

100 vaginas

But how do we expect menstruation to be discussed openly when vaginas themselves seem to be such a taboo subject? I watched 100 Vaginas recently, a documentary by artist Laura Dodsworth. Laura “photographs women and hears their moving, powerful or funny stories about how their vaginas have shaped their lives.”

It’s a brilliant documentary that I really believe should be shown in schools. As a 37 year old woman I watched in awe, wishing I’d have seen this as a young teen. It really smashed some myths around vaginas and vulvas and seeing so many was an eye opener! I realised I have only ever seen my own vulva, one other woman’s and vulvas in pornography. So the views that I held on what’s ‘normal’ we’re so skewed!

Just hearing women celebrating their vaginas was wonderful. It made me realise how much negative language you usually hear about vaginas. Women talking about the beauty of their vulva, the joy of their vaginas and the pleasure they bring. It was a powerful and surprising documentary that I would recommend to anyone.

Does my vagina smell?

There was a part where they talked about smell and it hit me in the gut taking me back to being 13 years old. Some boys in class were laughing and talking about someone having a “fishy fanny”. I specifically remember these phrases including one about her vagina smelling like a garbage truck. They weren’t talking about me and to my shame I didn’t stand up for anyone. I laughed along whilst inwardly panicking if my vagina smelt right!

Then I went home and got in the bath washing myself thoroughly with soap and bubble bath. Sadly spraying my knickers with perfume and tried to desperately hide the natural smell of my vagina. I used to clamp my thighs together, wear knickers, then tights, then another pair of knickers on top!

Unsurprisingly, I then got thrush. I’d basically stripped away all the good healthy things in my vagina and caused a heavy dose of thrush. There was too much embrassment to talk to my mum about it. It wasn’t something we would ever discuss, I never had a period or sex talk with her. We also didn’t have google!

So after thinking I was dying, I went to the library and read a medical book. Then went to a newsagents and read a woman’s magazine and diagnosed myself. Even then I was too ashamed to tell anyone. I didn’t eat school lunches all week so I could spend my dinner money at the chemist on some thrush cream! Having thrush then made me more embarrassed and self conscious of my vagina, stuck in a vicious circle!

It’s funny though, as I haven’t thought about that in over 20 years. But watching the show brought up thoughts about the internal shame we get about vaginas from society, the media and our peers and how talking about it can rid us of these fears and shame.

blogger sam cleasby talking about taboos and vaginas

Vaginas and Disability

Vaginas seem to even be a taboo when it comes to medicine. I have had jpouch surgery. Subsequently having the jpouch and my rectum and anus removed. I had so many worries about my vagina and sex life. The surgeries were deep in my groin and had created issues with the pouch pressing on the vaginal wall causing it to start to prolapse. Yet when I asked questions about how this could affect my sex life, nurses and doctors were quick to brush it off. Concentrating on the recovery leaving me feeling like a freak for asking if it would affect my ability to orgasm!

I speak to many people who say that Inflammatory Bowel Disease plays havoc with their periods. Either making them heavier, not regular or more painful. Yet there seems to be so little research done around this area and doctors don’t seem to have an answer.

If the vaginas of non disabled people are taboo, then if you add illness, chronic illness or disability into the pot, the discussion shuts down completely. The desexualisation of disabled people is everywhere. The feelings, fears and questions of disabled people remain unanswered and unspoken.

What do you call your vagina?

And I suppose that’s why today, I wanted to talk a little about vaginas. Or the many different names we have for them; fanny, pussy, tuppence, tutu, front bottom, cunt, foo foo, flue, vagjayjay… Isn’t it odd how for so long we were almost afraid to use the words vagina or vulva to young children to describe their body parts?

So here ends my little chat about vaginas. May we talk about them, may we celebrate them, may we educate and teach the world about the magnificent and wonderful vagina!

✌🏽 & ❤️

Sam xx

What they don’t show you on TV

Today’s post is about how surgery is shown on TV and in films versus the realities. And how that perception can mean you’re in for a huge shock when you have an operation in real life. Surgery recovery is different for everyone, but it’s certainly very different to how it looks on Casualty!

It’s all blue lights flashing, being seen immediately and running down corridors with a patient on a bed. There’s the tense music and drama of the overhead scene in an operating theatre. Whilst sexy, brooding doctors heroically slice and dice.

Recovery is a brief montage that flips from patients laid covered in tubes to them bravely walking through physio, brows furrowed and swiftly back to normal.

This isn’t what it’s like in real life.

I mean, I get it! Of course things are dramatised and only the most exciting or entertaining parts are shown and have to fit within time limits. But it’s interesting just how far from the truth the scenes we see are. From movies to medical dramas to the fly on the wall real life medical shows, the thing I think that is the most lacking is the waiting, the boredom, the time it all takes.

Sam Cleasby surgery blogger

My experience of surgery and recovery

I’ve had 8 surgeries for things related to Ulcerative Colitis. From my experiences, it’s hard to relate to what you see on TV. And it’s not something we really talk about so it’s important to think about what expectations people have when they go into hospital for surgery.

Firstly the waiting times, in the medical dramas patients seem to go from diagnosis to surgery in a matter of hours. Most ops are planned in and you are waiting weeks or months for a surgery date. Even when it’s an emergency, it still takes a lot of time!

But the one that gives the most false expectations is about recovering from surgery. I remember a couple of days after surgery saying to Timm whilst I was crying and off my face of pain killers that I just wanted a montage of recovery and to be all better!

It takes time!

It takes time, so much time to recover from an operation. Just having a general anaesthetic is a huge amount of pressure on your body and takes months to be out of your system properly. My hair always falls out by the handful in the weeks after surgery and this is to do with the GA.

All the medication can really effect you, not just physically but mentally too. Confusion is really common after surgery and something that isn’t really discussed. Doctors and nurses tell me how common it is for patients to be extremely confused and even be delusional after surgery. Especially if they get infections. This is a big subject and I’ll be doing a separate blog post on it.

hand with cannulas in it and wires and tubes in the high dependency unit in hospital

Boredom

It’s so boring. Of course, TV shows don’t want to show the boring parts and as viewers we don’t want to see the boring parts! But man, it’s dull! Being unable to do all the usual things and having to so much time in bed or sat down is dull. It can be really hard to concentrate too. Just reading a book or watching films is really hard so the usual ways you relax can be out of reach in the early days.

And then the weeks that follow are a balancing act of moving about enough to keep your body ticking over. Keeping your muscles happy and lungs and breathing a-ok and not doing too much that you will harm your recovery. After abdominal surgery I’ve been told to lift nothing heavier than a kettle… it’s amazing how much in life is heavier than a kettle! It can be so frustrating to not be able to do all the things you usually would.

And the tiredness!!!! No one explains just how tiring it is, how your body is using so much energy in healing. A 10 minute conversation results in a 20 minute nap! I am unbelievably exhausted at the minute, and listening to my body is key. The body is hard at work even when just sat still, so tiredness is to be expected after any surgery.

Obviously I have no medical training and can only go on my own experiences. But it got me thinking about how we can better prepare people for surgery to combat all the things we’ve seen in the media? And I suppose for me it is speaking about it honestly and openly here on my blog.

Tell me about your experiences of surgery and how they compare with TV and film, you story might just help someone else struggling right now.

✌🏽& ❤️

Sam xx