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

Post op resolutions

After feeling very scared and anxious about my op tomorrow I thought I’d try and think positively and make some plans about what I’ll do once I am fit, healthy, strong and recovered! So here are my post op resolutions.

1. Travel more!

We love to travel, but this year I want more camping with my boy, fires, outdoors, camper van cuddles and impromptu weekends around the uk.

2. More tattoos!

Just because I love tattoos and don’t have enough.

3. More friend time

Dinners and hang outs and lovely times with my favourite people.

4. Less stress

I have a tendency to take on too much and feel stressed out. Less of this please.

5. Say I love you more

I do it a lot, but I need to remember to tell the people I love often.

6. Spend more time in nature

It makes everything better.

7. Get strong

Walk, swim, yoga, garden, be strong. Oh and I want to learn to kayak!

8. Dance

I miss dancing, I’m a terrible dancer but I love it and I want to spend more time dancing in my kitchen with my favourite boy.

9. Date nights

Dates with my boy. As many as we can!

10. More So Bad Ass

Blogs, videos, reviews, merch. Maybe even write that book!

What would your resolutions be? We are all so different, what makes one person happy might be another’s idea of hell! So I would love to hear about the changes you would would make to improve your happiness.

✌🏽& ❤️

Sam xx

Why is pain not taken seriously in hospital?

There’s 6 days to go before my surgery and I’m terrified. But you know what sucks? That the thing I’m most scared about is being left in pain on the wards after surgery. It’s 2019 and I’m not afraid of the surgery but that I won’t be given pain relief. How is this OK?

On three occasions now I have been left in agony on the wards after having major operations. Usually in the day after the epidural is taken down. The pain relief is not adequate or more likely not given at the right times by nurses.

What is happening with the NHS and pain?

You know that I love the NHS, I feel so lucky and blessed to have free at the point of use medical care. It’s something we should be protecting but something is going majorly wrong here.

I have been left multiple times sobbing and crying in agony on wards. Just begging nurses to please get me some pain relief. Ive had nurses ignore buzzers, walk right by me whilst I’m writhing and hysterically crying.

I tried to discharge myself from hospital after my last operation just 3 days post surgery because the care was so dire.

Why is it that weekend wards seem to include some terrible nurses on the teams? Of course not all nurses, but I’ve found in each of the 7 previous surgeries that the care goes massively downhill at weekends.

Pressing the nurse buzzer in hospital pain relief

Despite putting plans in place last time and seeing a specialised pain team before they took down my epidural and warning them of my fears that I wouldn’t have adequate pain relief and having my husband there as an advocate writing everything down. But the following day the nurse seemed reluctant to give me the pain relief. She said she’d be back and left me for well over an hour sobbing. She kept walking past my bed and pretending she couldn’t see me.

And others tell me the same story, that their pain is not taken seriously. That nurses especially on weekends are either extremely late in giving pain relief or make excuses and they are left in agony.

So why is it that our pain isn’t taken seriously in hospital?

How is it that my biggest fear of a major op is that pain medication will be withheld? I’m so frightened of this happening that it makes me not want to go in for the surgery.

I spoke to the Pre op nurse about this, her advice? Kick up a fuss. Don’t be a “good quiet patient”. Demand to see the ward matron and if nurses won’t do that then phone the switchboard. Ask to be put through to the ward matron and tell them the bay and bed you are in and that the nurses are not giving you adequate pain relief. Then call PALS and put in a formal complaint.

Honestly this doesn’t sit well with me, I hate to be a bother. I know that the majority of nurses are so hard working, passionate and brilliant. I know they’re under paid and over worked. But there are a few rotten apples who are ruining it for everyone.

Being a “good patient”

There are many reasons that patients don’t complain. From a lack of knowledge to inability due to physical or mental health . Also a fear of how your complaint will affect your future care and wanting to be a “good patient”.

But being a “good patient” is not about sitting in pain because you don’t want to bother the nurses. Being a good patient is about being a responsible participant in your own health. I read a book that said that “good patients” die more than people who are active in their health and recovery. Struggling in pain worsens your recovery and outcome and so we should be ensuring we have proper care.

But if a confident and outspoken person like me has been failed with pain relief and post op care then how many others without a voice are there? How many older people who don’t want to cause a scene are laid in pain? How many people too anxious to press their buzzer more than once?

What can we do about pain?

When you’re in hospital after surgery you are at your weakest, you have little or no control and are completely vulnerable. Yet we are being let down.

This issue has given me panic attacks, I’ve had to write this in a few sittings as my hands are shaking and I can’t breathe when I think about my surgery next week. When I think about it, I’m taken back to the pain, the tears, the begging. I’m taken back to a vicious old bitch of a nurse walking past me several times. To her rolling her eyes as I cried in pain and finally stabbing me hard in the arm with the morphine jab. To phoning Timm and begging him to discharge me as I had no trust in the nurse now. And I’m terrified it’s going to happen again.

Timm did come last time, he demanded to see the matron and get some answers as to why we’d seen the pain team that morning and had a plan in place and why it was ignored. He got me moved to a new ward and a promise that nurse wouldn’t come near me.

He has said he will be there this time and make sure it’s all ok and I have a back up plan.

But it shouldn’t come to this when all we are talking about is some painkillers.

And I still can’t answer the question of why our pain isn’t taken seriously.

✌🏽& ❤️

Sam

Dehydration and your stoma

As we are having a bit of an Easter heat wave, it’s more important than ever to talk about dehydration with a stoma.

What the NHS say

The NHS says:

Dehydration means your body loses more fluids than you take in. If it isn’t treated it can get worse and become a serious problem.
Symptoms of dehydration in adults and children include:

  • feeling thirsty
  • dark yellow and strong smelling pee
  • feeling dizzy or lightheaded
  • feeling tired
  • dry mouth, lips and eyes
  • peeing little, and fewer than 4 times a day

Its bad news for anyone but if you have an ostomy, it’s far easier to get dehydrated than someone with all their intestines because the large intestine plays an important role in helping absorb water from food waste.

Severe dehydration can be life threatening, and any dehydration with a stoma can make you feel poorly causing tiredness, a feeling of sluggishness and more.  If your output loosens and you find you are emptying your bag more frequently then it’s worth upping your fluid intake.

Dehydration and your stoma

The NHS also say:

With an ileostomy, you will be losing more salt and fluid. This happens because your colon is not being used and therefore is not absorbing extra fluid. You will need to include a teaspoon of salt a day into your diet. Salt is an essential requirement for your body and low levels of sodium (the main ingredient in salt) can affect how well your heart works. Signs of salt depletion are tingling in the fingers.

If you are also a renal patient, you will need to discuss your salt intake in more detail with your Renal Nurse Specialist, as your salt and fluid requirements may be different.

Drink plenty

You will need to drink plenty of fluids to avoid becoming dehydrated. The recommended amount is 2-2.5 litres per day (a minimum of 8 cups per day). If you are becoming dehydrated it can generally make you feel very unwell.

We recommend that you have isotonic drinks, which are higher in salt and sugar. Isotonic fluids are better for you because of the higher sodium (salt) and glucose content. They encourage fluid to be absorbed into your gut, rather than passing straight through into your stoma bag.

These types of drinks include Dioralyte (which you can buy from supermarkets and chemists) and Lucozade Sport or Powerade, or you can make up your own rehydration drink using:
• glucose – 6 flat teaspoons
• salt (sodium chloride) – 1 flat teaspoon
• sodium bicarbonate/citrate – 1⁄2 teaspoon • make up to 1 litre with tap water.
You can flavour this with small amounts of fruit juice.

Tips to avoid dehydration with a stoma

Its so important to keep on top of hydration with a stoma, I would say it’s one of the most important things. The make up of your body has changed and you need to readjust how you look after it. I remember after my first surgery the shock of just how thirsty I was.

My tips would be to have a bottle and sip through the day. I always drink sugar free squash and water as I find water alone goes straight through me. I also take a jug to bed with me as I know I get so thirsty in the night.

Rehydration sachets are not just for when you’re ill! I have them in all the time, I have one in my handbag for emergencies and they’re part of my ostomy kit.

Theyre my go to solution if I feel more tired than usual or if I have loose output, if I have any alcohol, I have one before bed and one in the morning and I highly recommend getting some in! I like the ORS tablets available from chemists and supermarkets.

When the temperature rises either at home or if you’re off on your holidays, then be very mindful of dehydration.

And as always, I can’t give medical advice so if I’m doubt, speak to a medical professional.

✌🏽& ❤️

Sam xx

The best mental breakdown I ever had…

Five years ago, I was preparing for j pouch surgery. I had a date booked in (ironically 30th April which is the date of my next surgery!) and I was mentally preparing myself for a big operation. When suddenly it was postponed by 6 weeks. All that emotion and adrenaline bottomed out and I was left utterly devastated. But in these dark times I ended up finding the most wonderful friendship.

I was so wound up readying myself for this huge surgery and when the plans changed it really knocked me and was a mess. I was crying and shaky, I couldn’t sort my head out and it was all a bit much. So I decided to run away from home! 

I spoke to my aunt and uncle in Spain. I booked flights to go have a week with them on my own to try to sort my head out. It was such a difficult time and I was overwhelmed by everything. The pain, the fear of surgery, the unknown were just all too much and I went into shutdown.

traveling with a stoma

A week in the sun

A week of sun, relaxing and time out was just what I needed. My family were so lovely to allow me to come stay with them when I was so down in the dumps.

“Just so you know” my aunty added “the boys will be here too!”

The boys are my cousins and I was thrilled that I’d be able to see them.

“And do you remember J from primary school? He is coming with his girlfriend and her daughter!”

Oh. I thought. That’s a lot of people. People I don’t know. And another woman. A stranger woman who might judge me. How can I have a mental breakdown in the sun with a strange woman watching me?!

Then I met her. Wrighty. And instantly fell in love.

Sam Cleasby friendship Sheffield lifestyle blogger

Friendship

Five years ago because of having a total breakdown and running away from home. I met one of the kindest, funniest, rudest, silliest, most loving women and gained a new friend for life.

She is so open and generous, kind and caring. She has an awfully sick sense of humour that makes me cackle. I feel so honoured and blessed to have her in my life.

Sam Cleasby Sheffield blogger friendship

The break was just what I needed, I came home feeling refreshed, positive and ready to face the surgery.

Over the years I have told Wrighty that I was dreading meeting her. That I couldn’t bear the thought of a strange woman being there in my lowest ebbs. And funnily enough she said that she thought ‘oh great! Some random cousin awaiting surgery! What a laugh this is going to be on our holiday!’

But we met and instantly connected. Sometimes you meet someone and know immediately that you’re meant to be friends. And I knew from the very first evening I met her that we are meant to be in each others lives. That our friendship was so real.

Sam Cleasby at Tramlines Sheffield

Though our friendship was so new, it felt like we’d known eachother a lifetime. She visited me in hospital weeks later. Helped me, Timm and the kids out and was there in the dark times of recovery when I just needed someone to cry at.

Love

And over the past five years, we’ve become firm friends. I’ve learnt so much from her, she’s so open with her love (that sounds weird) in that she is a very touchy feely person (I’m not making this better am I?) She made me realise how important it is to tell and show your friends that you love them and just how I probably had these walls up before that didn’t allow me to show my love so openly.

We’ve both faced good times and bad over the years and I just hope that I have been there for her as much as she’s been there for me.

It’s not often that you fing this sort of friendship. That you meet someone who you connect with so intensely, so when you do, hold it tight because that is bloody special.

Thank you Wrighty for being my friend.

✌🏽& ❤️

Sam xx

Do you remember when you learnt fat=bad?

Social media, marketing, films and TV are putting more pressure than ever on people to feel they have to look a certain way. We also are in a time when there are many voices standing up for body confidence which was something very lacking as I was growing up.

I was born in 1981 and was a teenager in the era of Kate Moss, heroin chic and waifs. But I remember vividly the first time I realised that society equates fat with being bad.

Princess Diana’s cellulite

And ironically enough it was a story about Princess Diana that started it. Someone who later we found out battled eating disorders. She was considered to be the most beautiful woman in the world. And it was this story that first made me go on a diet and feel rubbish about myself.

It was 1996 and photos came out in the tabloid press of Diana leaving the Harbour Club fitness centre in London. She was wearing shorts and the story said she had cellulite on her thighs. One newspaper called her Princess Lumpy Legs. Wow, just wow.

It was literally front page fodder and was on the tv news, everyone was discussing it. So much so that the princess denied she had cellulite publicly. Saying the dimples on her thighs were imprints from a bar stool she had been sitting on.

Several tabloids then actually hired models. They attempted to re-create the photographs to prove or disprove whether the bar stool could cause these marks.

I’d never even heard of cellulite before this, but suddenly it was all anyone could talk about. I remember seeing girls at school squeezing the flesh on their thighs to check if they had it. I thought to myself that it must be a horrific thing to get. If the worlds most photographed woman had to speak out and deny it.

Body confidence

It was probably the first time I really started judging my body I was 15 and very skinny. But these stories told me that even the slim Princess could have cellulite and be totally shamed around the world for it, so what hope did I have?

In the weeks after, every newspaper, magazine and tv show was all about what diets and exercise you should do to avoid this dreaded scourge of cellulite and I took it all in. I went on my first diet and starting buying fitness videos. I never had an eating disorder but the story really affected me and changed the way I viewed not only myself but other women and I dieted for the next 20 years.

Nowadays I have learned to love my body, whatever size or shape it is. I’ve been very slim and currently due to two hernias and extreme pain stopping me from even walking very far, let alone exercising, I’m at the heaviest I’ve ever been. I’m not actually happy with my weight and shape right now, but that’s down to feeling out of control and weak not the weight itself.

After surgery I will be working on getting strong, but none of this is for anyone else nor any other reason than I want to feel strength in my body, I am so looking forward to getting back out and walking my dogs, in dancing in bars and my kitchen, in swimming and kayaking and gardening and just being a happy, active me! I have no aims to lose a certain amount of weight or to look a certain way, I just want to feel strong and like me again and I know I can feel that at a size 10 or a size 18.

sam cleasby ileostomy colostomy bag blogger body confidence

Does fat = bad?

I have learnt that fat does not equal bad or ugly or shame, it’s only hateful and hurtful words that make us feel those emotions. I have learnt that my body is beautiful and wondrous and my wobbly bits, my cellulite, my scars and my ostomy bag are all part of that. I’m beautiful because of those things, not despite them.

So though social media does expose us to so many more negative images and stories, I’m glad we live in an age where we hear the positive stories and body confidence too. Where we can see women of all shapes and sizes looking fabulous and telling their stories of self love.

Jameela Jamil instagram body confidence

I saw this photo of Jameela Jamil in her Instagram this week showing her cellulite and it made me reflect on how differently that image was accepted compared to the photos of Diana and it makes me feel like things are changing and it is becoming easier to love your body, however it looks. Her campaign of body confidence has been so inspiring.

I’d love to hear your stories, do you remember a time when a news story changed the way you feel about your body?

✌🏽& ❤️

Sam xx