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

It takes guts

It Takes Guts is a new campaign by Crohns and Colitis UK. I was honoured to be asked to be part of it. They say:

It takes guts to talk about Crohn’s and Colitis. But no one can see it until we say it. 
It’s time to speak up and break down the stigma.
One conversation at a time.

Sam and Eli Cleasby in Crohns and Colitis UK It Takes Guts purple tshirts

Part of their campaign is an animated video. I was asked to provide the voice for part of this along with two other people with Crohns or Colitis and the result is just brilliant.

Sam Cleasby Sheffield ostomy and IBD blogger animated in Crohns and Colitis UK It Takes Guts campaign

Please take a look at the It Takes Guts website, there is so much brilliant information and support and you can share your own story too.

Sam Cleasby Crohns and Ulcerative Colitis blogger in Crohns and Colitis UK It Takes Guts campaign

Or maybe you’d like to create your own emoji poster to start the conversation and share on social media?

Sam Cleasby ostomy blogger Crohns and Colitis UK Living with Ulcerative Colitis It Takes Guts

Crohns and Colitis UK

I have been a huge supporter of Crohns and Colitis UK for many years. I have received so much support and information from them in my times of need. It is a real honour to be able to give back to them now.

Also a big thank you to my child Eli who came along as my support and help for the filming and voice overs. They carried my bags, helped me with travel and was a great support all day. I wouldn’t have been able to go without help and my brilliant 16 year old was a rock all day. They even joined in on the photo shoots!

Sam Cleasby IBD blog Crohns and Colitis Uk It Takes Guts campaign

You might also recognise Timm on the website offering some words of wisdom around speaking to children about Crohns and Colitis! I’m so pleased that all my family are so supportive and help me to raise awareness like this!

Sam and Timm Cleasby in their allotment in Sheffield with a chicken

I hope you love the It Takes Guts campaign as much as we do!

✌🏽& ❤️

Sam xx

Surgery number 8

On 30th April, I went into hospital for my eighth surgery related to IBD. It was a big operation to repair a parastomal hernia and an incisional hernia. Also to resite my stoma and to deal with all the adhesions in my abdomen.

I was terrified about it, believe me, it doesn’t get any easier with experience of surgery. If anything it is more scary to know what’s coming.

We headed in for 7am and checked in, after waiting for a couple of hours I had bloods checked. Then I met with the stoma nurse to mark me up for the new stoma. Next was meeting the anaesthetist and registrar and going through the consent forms. Finally it was time to go down to theatre.

I spoke at length to the anaesthetist about my fears about pain relief post op due to past experiences. She was wonderful and put me at ease. We went through her plan to leave me on epidural for longer and what would be put in place after that. It really helped to calm my nerves.

Sam Cleasby in Sheffield Northern General Hospital ready for parastomal hernia and bowel surgery

The surgery

Timm walked with me to the theatre doors, kissed me goodbye and left. I was so wary and fearful, I honestly thought this could be the one where my luck ran out. I told him I’d written a letter just in case I didn’t make it, that I loved him and to tell my babies how much I adored them.

Into the theatre, they set up my epidural (in on one attempt thank god! Last time it took 5 or 6 goes!) and off I went to the land of nod.

The surgery took almost 5 hours, the adhesions were terrible. It took a lot of time to pick everything apart. They repaired both hernias and moved my stoma back to my right side. Then put a lot of biological mesh into my abdomen to try and strengthen it all in place.

I woke up and felt very hot and sick, I vomited a few times and was quite out of it. Then I was taken to the High Dependency Unit (HDU). I was very dehydrated. They said they had to push 7 litres of fluids through me during the surgery and that my lactate levels weren’t right. They called Timm who came over and was with me though if I’m honest I don’t really remember too much.

In HDU you’re in a room alone and have a one to one nurse. There were tubes and wires everywhere and lots of machines, it was quite frightening! I had two cannulas in my hand and an arterial line, heart lines stuck all over my chest and back. Plus oxygen mask, drains in my tummy, the epidural and a catheter in my bladder. I could barely move for tubes and wires!

Arterial line in hand after surgery parastomal hernia

Everything went a bit wonky!

Throughout the night I was pretty out of it. But the HDU nurses were amazing and looked after me so well. I had a few tears through the night just from fear and feeling overwhelmed but got a couple of hours sleep and when I woke at 7am I actually felt ok! They got me out of bed and into a large chair a bit like a lazy boy. Timm came in first thing in the morning.

Then everything went a bit haywire. And I don’t remember a lot apart from being so scared.

I started shaking a lot, my muscles all cramping and my chest hurt and I felt like I couldn’t breathe. My mind was spinning out. I felt like everyone was against me and they were going to make me have another operation. Feeling frightened but totally out of it, not knowing what was real and what I was imagining.

At first I thought I was having panic attacks but I couldn’t gather my thoughts to figure anything out. I was wild and not myself.

The staff were so kind, patient and supportive though and Timm was there every second. He started panic googling and realised all my symptoms were potential side effects from Fentanyl which was in my epidural. He asked the nurses about this, they agreed I was probably reacting badly to this and they changed the epidural.

Sheffield Northern General hospital high dependency unit after surgery

Reactions

Once it was taken down I was still reacting badly but they said it takes hours to go out of your system. During this time I used meditation, mindfulness and visualisation to calm myself and get on top of it. I haven’t quite processed it all. One visualisation in particular had a profound effect on me that was physical as well as mental. But I’ll write about this in another post.

All the terrifying symptoms slowly stopped and I could get a hold of myself. All day had been so scary, I was just losing my mind and it was terrifying. I can’t thank Timm enough for being there every second even though he was as scared as I was! He was calm, loving, patient and thought outside the box. Playing gong sounds to help meditate, going through mindful body scans or just holding my hand and repeating positive mantras. I can’t recommend getting in touch with your mind body connection enough. It’s not airy fairy or hippyish, the science behind it is real and fascinating. Again, I’ll do another blog post about that.

Onto the ward after surgery

The following day I went onto a normal ward and the anaesthetist visited every day along with the pain team. They followed through with their plans keeping me comfortable at all times. I’ve had poor experiences of pain relief on the wards post surgery. All I can say is that being vocal and firm in my needs paid off. It’s certainly not about being rude. But you need to be a responsible participant in your health and recovery. Making your needs clear and insisting on proper care is vital to receive the best support.

In the past I wanted to be a “good patient” and not bother the nurses. I didn’t want to be demanding or complain but it meant I wasn’t giving them the opportunity to understand my needs. It’s so important to speak up and explain your needs, and if they aren’t being met, ask for explanations why.

You deserve proper care and if you are left in pain or your treatment isn’t being delivered then your recovery will be longer. You’re more likely to experience complications and it can have such a negative affect on your mental health.

Coming home early

After 6 days, I was off the epidural, my surgery drains and catheter were removed, stoma working and off all meds apart from pain relief and so they asked if I’d like to go home. I jumped at the chance! I hate being in hospital and I know I recover better in my own bed.

Coming home after surgery Sam Cleasby Sheffield hospitals

It’s been a tough week at home. Helped along by lots of pain killers and the love of Timm, the kids and the doggies. I’m so glad to be here. I’m still very emotional and tearful. It’s only been the past few days where I have felt more like myself and up to visitors. The new stoma is working well. My old stoma site is still open and being packed daily to heal from the inside out. And my 48(!) staples have been removed!

Thank you

We have been overwhelmed by the lovely messages of support. Though I haven’t replied to every one, I have read them all and thank you so much!

A huge thank you too to our amazing friends who have been so lovely. Cooking for us, helping out and just being there for all of us. And thank you to my aunty Jenni for the most amazing hamper!

It’s been tough as we havent got a lot of family support. My sister lives in Australia and though she is always there to chat, especially through the night when everyone here is asleep, she’s not here to hug or to visit. Timm’s sister and dad live in Lanzarote. But family doesn’t mean blood. Family are those who are there for you and love you and so in that case, we are very lucky.

My recovery is going well but I’m still very very tired. I’ve been told to try and walk a little every day. Yesterday we went to the shops for an hour, I then slept all afternoon! We also had a trip out at the weekend to collect our new campervan so I’m very excited for that!

As I said, I’m still quite fragile emotionally, very tearful and very tired. I’m really pleased with my progress but I still have a long way to go.

I just hope and pray that this will be the last ever surgery as I really don’t think I can go through this ever again!

✌🏽& ❤️

Sam xx