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

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