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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

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

I got my date for surgery

So I have a date for the next, sorry I mean LAST surgery! 30th April I will be heading in for what I hope and pray will be the last operation I have.

Ive been referred onto a doctor who specialises in complex abdominal cases and he is going to repair the two hernias and move my stoma again. I have been warned that it is a major operation, that my case is complicated and will be difficult and that he won’t really know his plan until he opens me up.

The parastomal hernia is huge, the opening is very big and measures about 15cm on my stomach and they know I have a lot of adhesions, that everything is stuck together.

They said it will be around 6-7 hours of surgery, 10-14 days in hospital and 2-3 months off work recovering.

Ive been told it’s risky, that I have a 75% chance of complications and that is terrifying me. I have stopped smoking though, I’ve moved onto a vape and this reduces my risks by 10% so that’s one positive.

Ill be going straight onto the POSU (Post Operative Surgical Unit) with the chance that I may need some time in HDU (High Dependency Unit).

Sam Cleasby Sheffield blogger chronic illness hospital surgery

How am I feeling? Well it feels very real now, though I knew it was coming, having a date has set it in motion and I’m feeling panicky and anxious. I’m scared of the complications, I’m scared of the long hospital stay, I’m scared I won’t come home.

I know I can’t dwell on thinking negatively but man, I just feel so frightened that this will be the one that it too much. This will be surgery number 8 in the past 5 1/2 years and I can’t shake the feeling that it’s one too many.

I’m in so much pain every day, it feels like everything is going to fall out of my stomach every time I stand up. I am struggling to function, I’m always in bed. Doing one thing means a week of being unable to stand. I’m always medicated and drugged up and I know I can’t live like this and that I need this surgery.

And so I have to try and think positively, I’m reading a lot about the mind body connection and how meditation and visualisation can decrease pain, stress and anxiety and can improve mental health, shorten recovery time and help you heal quicker.

I feel like I’m on a narrow ridge, on one side is positivity, strength and happiness and on the other is a swirling mass of anxiety, fear, sadness and panic and honestly, I feel like I could lose my balance either way right now. I’m trying to slide into the positivity but there’s this weight pulling me towards to shit storm of crapness.

Planning

All I can do is fight. I’m doing everything I can to be as strong as I can mentally going into this. I’m meditating daily, I’m spending time outdoors, I’m planning my recovery.

But there’s still a part of me that is planning to fail. The chest freezer I bought and filled with food so Timm won’t need to worry too much about big shops when I’m in hospital is also a safety net of me thinking they’ll have food if I don’t make it. The days out and nice things I’m pushing myself to do are because I won’t be able to do much for a couple of months will also be nice memories for the what if.

Fuck, that’s dark isn’t it!!

The thing is that keeping those dark thoughts to myself gives them power, it allows them to take over my head and drown out anything good and so I say them out loud and yes, they’re depressing and horrible and messed up. But then I see them written down and can separate myself from them, I can see them for what they are; my anxious brain coming up with a list of what ifs and plans for the worst.

And once they’re out there, maybe I can let them go and go into this surgery as positive as I can be.

Wish me luck, I’m going to need it.

✌🏽& ❤️

Sam xx

I had my pre op!

This week I had my pre op assessment for my upcoming surgery. Pre ops are for when you’re having a general anaesthetic. You have a hospital appointment with a nurse to check if you’re fit enough for surgery.

They check your height, weight and blood pressure, take blood. Then they either take swabs to check for MRSA if you have your surgery date soon or send you home with a swab kit for you to do the week before surgery. It is an assessment to check whether you’re fit to have a general anaesthetic.

Its also an opportunity to discuss the surgery and any concerns you might have. As I’ve mentioned before my biggest fear at the minute is that I won’t receive proper pain relief after the surgery as this has happened to me twice before in this hospital.

After a big op like the one I’m having, I tend to have an epidural in place that delivers pain relief for the first few days after surgery. When this is taken down it can be a big shock to the system and good regular pain relief is a must.

My worries

Unfortunately twice now I have been left in agony due to the ward nurses not giving me appropriate drugs on time. Now I’m terrified it will happen again. So much so that I almost don’t want to have the surgery at all.

But I got time to speak to the nurse this week and share my fears. She told me that it was unacceptable that this had happened and that if it happened again, to immediately ask to see the matron who would sort it out and be majorly pissed off at nurses not doing their jobs.

As I’ve said so many times, I have huge respect for nurses and the vast majority are bloody wonderful! But there are some shockers.

Mind/Body connection

In a book I read this week (healing from the inside out, Nauman Naeem) it talks about how ‘good patients’ as in those who don’t speak up, press the buzzer, complain when needed are at much higher risk of complications and that rather than being a patient we should be a respant – a responsible participant.

The nurse also has arranged for the accute pain team to see me ASAP after surgery and has made notes for the anaesthetist to let them know how nervous I am and my past experience. She said they will be able to write me up for decent pain relief before they even consider taking the epidural down.

She has reiterated just how complex this surgery is going to be, around 7 hours in theatre and a high risk of complications. They have booked me into the post operative surgery unit (POSU) for straight after where they’ll keep a closer eye on me and if I need to be transferred to the High Dependency Unit they can do that quicker and more easily.

Feeling scared

I will need to be in hospital for at least 10 days and recovery will be 2-3 months.

They will be repairing the huge parastomal hernia, it’s a massive opening about 15cm and the incisional hernia on the other side and moving my stoma again. I have adhesions everywhere and so these may cause problems.

Its fair to say that I’m terrified.

Im trying very hard to stay positive, I have a new mantra (again from reading the book above) that I tell myself every day to fight against the feelings that everything is so tough right now and I hope that having more open and positive thoughts will aid in my healing.

“I am open and welcoming to healing, strength, love, joy and happiness”

✌🏽& ❤️

Sam xx

Good news and bad

Last week I had some good news from the gynae hospital.  I’ve had a large cyst on my ovary that been monitored for a few months, along with some worrying blood test results, there was a concern about ovarian cancer.

I’ve been given the all clear, the cyst had gone down, the blood test results a lot closer to normal so it’s all great news!

Then this week I met with my new surgeon Mr Adams, I’ve been referred to him by Mr Brown as he deals with more complex abdominal cases so Timm and I went to see him yesterday.

We looked at my scans and he went through my history and said that he would operate. This I was expecting, I have one large parastomal hernia and one hernia in my old stoma site so I knew that surgery was definitely on the cards.

What I wasn’t expecting was just how complicated and high risk it was going to be. Because of having so many surgeries, the multiple hernias and the sheer size of the parastomal hernia, he says it is going to be very complex and difficult.

I have a 75% chance of complications, this is really frightening.

Ill need a 1-2 week hospital stay and 2-3 months off work recovering.

I was in shock and had a bit of a cry, it’s all just a bit overwhelming and scary right now, I am terrified that I’ve used up all my luck and this is going to be the one where it all goes tits up.

Yesterday was a bit of a blur, I cried a lot, shouted at the sky, said it’s not fair. It all just feels very real now, and hearing those odds of things going wrong has put the fear in me. Though I can reduce that by 10% by stopping smoking or going onto e-cigarettes so yesterday was my last fag and today I have a big stupid vape thingy!! But needs must!

Today I’m a bit less emotional, certainly less weepy. But deep down I’m just scared.

The thing is that it’s not the surgery itself that scares me the most, it’s the recovery and the fear of more god awful nurses who won’t follow instructions and give me the planned pain relief. The last hospital stay was a nightmare with two of the most uncaring, horrible nurses I’ve ever met who left me in agony for over an hour after my epidural was switched off (you can read about it here.)

Whenever I think about surgery, it’s this moment I’m taken back to, this feeling of panic, pain and the complete free fall of no control and I panic. My chest tightens, I can’t catch my breath, my head spins and I feel like I’m right back there. I’m so scared!

And so the thought of having 2 weeks in hospital, potential complications, a big old cut in my belly, potentially another stoma move and then months of not being able to work, of needing so much rest, it’s just too much.

Because I had two surgeries last year (and a handy mental breakdown) I have no more paid sick leave left at work and so although they are really supportive, financially it’s a worry.

Timm says that whatever we need to do, we will, that he’ll look after me, to forget the money, that we will get through it together, that he’ll be with me every step and won’t leave hospital till he knows pain relief is sorted.

I also know we have some wonderful friends who will be right by our side and so that makes me smile.

But all in all, this is a bad time, I paste the smile on but underneath I’m absolutely done in, scared, weepy and upset.

Will update when I’m feeling brighter

✌🏽& ❤️

Sam xx

 

Health update

I thought I would give a bit of a health update as I feel like I am just constantly complaining on social media about how grim I feel.

I have two large hernias (I know, I know, I’m as sick of hearing that word as you are!), one is a parastomal hernia, this means it is sat right behind my stoma and one is an incisional hernia in one of my many surgery sites.  The parastomal one is the most painful, it is quite large and gets bigger throughout the day.  It is a constant feeling of pressure behind it and it feels like all my insides are going to burst out at any minute! The second hernia is not painful all the time, but a few times a day it is an awful stabbing pain, it takes my breath away and so between the two I am really struggling with pain.  I’m on codeine and nefapam for the pain which help but also make me super groggy.

The other issue is I have a large ovarian cyst, at the last CT it had grown and was around 7cm big, I am having weird periods (long gaps and random bleeds) and a feeling like constant bad period pain.  I also apparently have a large, fluid filled fallopian tube (because why not throw another thing at me!!) and so I am waiting for further scans and tests for this.  I think it is due to the huge amount of adhesions in my body, basically everything is stuck together and altogether unhappy in there.

So the plan is for the gynae surgeon to take out the cyst at the same time as they fix my hernias if possible. Mr Brown wants to get another surgeon involved, he specialises in complex abdominal cases and I have an appointment to see him at the beginning of February.

And so I am just still in limbo waiting for a surgery plan and date. On one hand, it just cant come soon enough, I am getting to the point where the pain is getting too much, my nerves are shred and every ounce of patience has been used up.  I am short tempered, pissed off and struggling to not lose my shit.

Talking of losing my shit, the parastomal hernia is making my stomach a very weird shape and so bags are not wanting to stay put, so I am leaking really often which is just making life all the crappier.  This is my parastomal hernia, the pic was taken after a day of rest and so is actually not as big as it usually is.

parastomal hernia

Most days I look about 6 months pregnant and so that’s not much fun at all…

I dropped my work days down to three days a week a couple of months ago as I was finding it so hard to keep up with everything whilst feeling so ill, exhausted and in pain every day.  This has helped a lot, but to be honest, even part time work is a real struggle right now.

Also because I had two surgeries last year and subsequent time off to recover, I am out of paid sick days so I am panicking about how much time I will need off after this next op. If it goes to plan and they do the two surgeries in one go, it will be a big old op and I will need a lot of time off afterwards to allow myself to heal. But I also won’t be paid for this time.  Of course, my health has to come first and I will take as much time as I need and the doctors recommend but adding the financial worry to the mix isn’t helping.

And so I think that is everything up to date health wise. Basically my body is broken and I’m waiting to see if docs can make life a bit less shit!

I know I have been a right whinging bag on facebook and twitter, but honestly I don’t even apologise for it! Life with chronic illness isn’t all positive quotes over images of clouds, it’s not all high fives for celebrating our awesomeness and shiny, happy selfies with puppy noses.  Sometimes it is dark and miserable, lonely and scary and the one thing I promised myself over 5 years ago when I started this blog was that I would be honest about the highs and the lows.

Thank you so much for all the kind, lovely messages I have received over the past few weeks, I try my best to reply to everyone but don’t always have the energy, but I do read them all and each one means the world, so thank you.

Sam xx

Hernia update

So after seeing Mr Brown last week and being sent for a CT scan, a hernia has been confirmed.

Obviously after two hernia ops already this year, I’m devastated.

Its behind my new stoma and is sore and swollen, it’s awful news yet again and to be honest I don’t know how to feel about it all.

It just feels very unfair and I’m really cross with life at the minute. But I will pick myself up and plod on!

Im here, I have an amazing husband, I’m blessed with wonderful kids and friends and it could be worse!

Parastomal hernia

What to do next? Well the good news is that it’s not bowel poking through the hernia right now, it’s fat and tissue so though uncomfortable and unsightly, it’s not an emergency.

So I’ll continue seeing my physio, I’m going to try and lose some weight and I’ve stopped smoking so we’ll see how I go!

Sam x

Surgery number 7!

If you follow me on social media, you’ll know that I had my big op a couple of weeks ago, it’s been a really tough time so I’m only now just well enough to blog about it.

So a bit of background, I had developed a hernia in the incision of my old stoma site and had surgery to operate in March to fix this. After that operation, my surgeon told me it was worse than expected and there was another hernia behind my stoma.

Over the next few weeks, these hernias grew and developed and were extremely painful and getting in the way of day to day life and so the decision was made that I’d need yet another surgery to fix these.

Parastomal hernia

It was decided that I’d try and wait till after August for this op, both to give my body time to recover and also as we are going on an American road trip in August and I wanted to make sure I was well for this.

The pain was getting worse week on week, I had a weeks holiday at the end of May to have some time at home around my birthday and I ended up spending that whole week in bed in agony. My birthday was spent having a bbq with our two best friends in a quiet evening at home where I could lay down and rest. Beautiful but disappointing to feel so poorly.

My beloved nan also took a turn for the worse and so I was trying my best to visit and spend time with her.  On Sunday 3rd June, we went and spent the day with her, she was very tired and on medication but it was lovely to spend time with her and lots of my family.

On Monday 4th, I was in a lot of pain, I could barely stand and my hernia was really stuck out, the decision was made that I needed to get into hospital the following day and have emergency surgery. It was a huge shock and I was frightened about it all.

And then I got the worst phone call. My beautiful, incredible nan had passed away. We rushed straight to her house and spent a few hours with her, holding her, kissing her and just being in her presence. I felt everything crashing away from under me. I can’t say much more at the minute, it’s too raw and painful.

The following morning, Timm took me into hospital and on Thursday 7th I had my surgery.

I had repair of two hernias and resiting of my stoma on the left side. It was quite a long and complex operation as I had a lot of adhesions, mesh and scars to deal with. I believe it took around 5-6hours and honestly has been the toughest one so far.

Perhaps it’s my age or the previous scars etc but either way, this one has floored me.

It was a bit of a shock really to wake up from such a big op, I hadn’t been expecting it and I was still reeling from loss and so my head was all over the place. The first day was a haze of morphine, I had very low blood pressure but I was feeling ok.

The pain team came to see me and explained the plan in place for taking me off the epidural, I told them that I was quite scared as I knew from previous experience what a shock it can be coming off the epidural. I was assured that everything would be in place and I wouldn’t have any pain.

The following morning I was given paracetamol codiene and eventually Oramorph, I’d asked Timm to come in to advocate for me as I knew it was always tough coming off and getting it right. We were told I could have oramorph every hour and that I’d be fine. Happy with this, Timm left to sort the kids out.

The pain started to grow and I saw a nurse who gave me paracetamol, she offered codiene but said I couldn’t have codiene and oramorph together and so I requested the oramorph. She went to get it.

Twenty minutes passed and the pain was blooming through my body, I pressed the buzzer and was told they’d let the nurse know. Another twenty minutes passed and I was in tears, I couldn’t breathe, I was sweating and moaning. I pressed the buzzer and told them I’d take anything just please give me pain relief. Again they went away saying they’d tell a nurse.

Another twenty minutes passed. I was crying hysterically and pressing the buzzer. No one came. Another patient came over and said ‘can I hug you? You’re in so much pain and I can’t believe they’re ignoring you’.

Eventually the nurse came over, she asked what all the fuss was about. I said ‘please just give me the fucking drugs!!’. She was angry and said she didn’t have to be spoken to like that. I begged her ‘please just give me the drugs!’  She angrily jabbed me in the arm leaving a painful red lump and stormed away.

Ten minutes later she returned saying I could have another injection, she was fuming and said I was a disruptive patient. I tried to explain that I was in agony and I’d been promised that I wouldn’t be left in pain. That I was sorry I swore but I was terrified and the pain was too much and I’d been left for an hour. She rolled her eyes at me and was so cold and rude. I said she was being really uncaring and she just rolled her eyes and so I said that my husband was coming in.

Honestly I was in shock, I couldn’t believe that I’d been left in that state. It was less than 48 hours after a huge surgery where I have two big wounds and a new stoma. I was left crying on a ward for an hour whilst they ignored me.

After this, I was laid in bed sobbing. I was in shock, distressed and as the pain relief took effect I was shaking. My arm was red and swollen where she rammed the injection in and I felt so low and just not human.

You all know I love our NHS, I wouldn’t be here without it, it’s amazing. But sometimes people let it down. This nurse was the coldest most uncaring person I’ve ever met. She looked at me like I was shit, she hurt me, she made me feel like I didn’t matter.

We complained and the matron came to see us, she was lovely and listened. She understood and apologised. I apologised for swearing, that i wasn’t like that but the pain was so much. She said it was totally understandable. We will be taking this further.

Thankfully I have a voice, and I have a husband to come and fight my battles with me but there are many who don’t and it’s for them that I must take the complaint further to make sure this doesn’t happen to anyone else.

Sam Cleasby surgery blogger

Once the pain relief was under control, the rest of the stay in hospital was quite normal. Timm came every day, he was my hero. I was struggling as I had no appetite, but the nurses were wonderful and really supportive which was a relief after such a poor start.

My blood results weren’t great though and there was concern about infection but then they dropped to within normal limits and I was let home on Tuesday 12th June.

Sam and Timm Cleasby

As far as we know, the surgery went well. I have a large scar up my middle and the old stoma site has been left open and is being packed every day by the district nurse. It’s a bit of a shock to see a big hole in your tummy though!

This has ended up being a super long post and so I’m going to end it here and I’ll do another post about recovery at home AKA it all goes tits up and Sam thinks she’s going to die… (spoiler, I obviously don’t die)

Adios!

Sam xx

Hospital update *spoiler* it’s not good news

I had my 6 week post op check up today with Mr Brown, Timm took the morning off work to come with me as I had a sneaking suspicion that it wasn’t going to be good news.

My stoma and stomach is still very swollen and with exertion it really pops out and my stoma disappears inside my body. I have New deeper convex bags which are really helping with the leaks but it’s still not great.

So Mr Brown said that the op didn’t go as planned as he was thinking it was going to be a really simple incisional hernia repair but when he opened me up, the hernia was originating from the stoma and had spread up to the incision site. He fixed it as much as possible but unfortunately things haven’t solved the issues.

And so I’m going to have to have another operation.

I’m absolutely devastated. I really thought the surgery 6 weeks ago was going to be my final one and now I’m heartbroken at the thought of more.

The options are to have a parastomal hernia repair, this is the easiest op but carries a 50% chance of reoccurrence, or we can totally resite my stoma on the other side, which is a much bigger op but only has a 10% chance of reoccurrence.

I decided I need some time to think about it, we have a big holiday planned for August this year and so I don’t want to do anything before then. So I’m going back to see him in July and we’ll look at scheduling it then. We all think that the stoma resiting, though a scarier op is probably the better option but I’ll give it some real thought and research over the next few months.

Im really tearful now, I just can’t believe I’m going to have to have another surgery. I can’t believe my husband and kids are going to go through it all again. I’m worried about work, taking more time off for yet another surgery, and Timm’s business which is in the first stages of expansion and the effects my illness will have on us.

I know in the grand scheme of life, this is small fry. It’s an operation to fix a problem that isn’t life threatening. I know I’m lucky to have the health that I do have and so don’t want to be too ‘poor me’, but man, I’m gutted.

I had a big cry in the hospital car park and then another big cry in the car. Then an even bigger, snotty wail at home.

It’s not bloody fair! I’ve done my share of hospitals, I want some time off now!!!

Work have been great, I spoke to my manager when I came out of hospital and he’s told me to take the rest of the day off. So I’m going to have a bath, take some meds and get in bed and read a book.

Im going to take today as a mardy day, wallow, eat pancakes, cry and feel sorry for myself.

Then tomorrow I’ll pull on my big girl pants and get on with it…

I read a quote recently, it said:

Life and death quote

And it made me realise you have to make the most of your time here.

Things are pretty shit with my family relations, but I have the best husband, wonderful children and some really loving and supportive family members.

I have THE best friends in the world, so many friends who are bloody brilliant. Especially our Caroline and Jim who are the best friends Timm and I could ever wish for, they’re always there for us and make us so happy.

I have a great job who are understanding and supportive with my illness, Timms business is thriving. I have a lovely home and an allotment which is my happy place.

So if I have to have another op, then I think I’ve got this. Maybe we’re only sent the shit we can handle, and maybe that shit sometimes teaches us we can handle more than we believe.

 

Love Sam xx

Next surgery date

My next surgery will be next Monday, the 12th March and it’s for the hernia above my stoma from my old stoma site.

Im feeling really nervous for this one, I know it’s not the biggest or longest op I’ve had by far! But I think because I had mentally prepared myself for no more surgeries this one is freaking me out a bit!

I think my main concern is that the hernia is so close to my stoma that it’s a worry that if it’s too close, they may have to resite my stoma which is obviously a much bigger op with a tougher recovery.

The scans we are going off are from last summer and I know the hernia is much much worse than then.  So I suppose I’m just really apprehensive that going into a simple op may mean I wake up with a much harder surgery to recover from.

I’ll be heading in first thing Monday morning and it will either be a 1-2 night stay or a bit longer if the surgery is harder. And then home for a few weeks rest and recovery.

Work have been fantastic and have told me to take as long as I need, they are really supportive and it’s lovely as this is my first op where I’ve had sick pay!! After all my other ops we knew that it would be weeks and weeks of me earning nothing which obviously puts so much more pressure on us as a family and so it’s great to know that the pressure is off and I can actually concentrate on getting better without the voice in my ear telling me to get back to work and earn some cash!

Going into any surgery is scary, and I need to try and calm my nerves and ignore the dread in my stomach that something is going to go wrong.

Its not great timing, Ell starts mock GCSEs on the same day and I’m hoping that they can concentrate on their exams and not worry too much about me. The kids hate me being in hospital and I know they’ll be stressed next week. I hate that I cause them hurt and fear but we’ve talked about it and they’re feeling as ok as they can.

So I will let you know how things go next week!!

Thanks for all the messages of support

 

Sam xx