What they don’t show you on TV

I was thinking 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.

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

I’ve had 8 surgeries for things related to Ulcerative Colitis and so 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 and even when it’s an emergency, it still takes a lot of time!

But the one that I think gives the most false expectations is about recovering from surgery. I actually 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, 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 I was told that was 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.

It’s so boring. I get that 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 things you’d usually be doing and having to spend most of your time in bed or sat down is dull. I found that it’s really hard to concentrate too, so 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, 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 tells you just how tired you will be, how your body is using so much energy in healing that a 10 minute conversation results in a 20 minute nap! I am unbelievably exhausted at the minute, and I have to listen to my body and go with it. Your body is hard at work even when you are just sat still, so tiredness is to be expected.

Obviously I have no medical training and I can only go on my own experiences but I just got 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 and 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.

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.

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.

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

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 and 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, and they even joined in on the photo shoots!

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!

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, 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, 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 and having bloods checked, meeting with the stoma nurse to mark me up for the new stoma, meeting the anaesthetist and registrar and going through the consent forms 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 and she was wonderful. She put me at ease and 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.

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 and it took a lot of time to pick everything apart. They repaired both hernias, moved my stoma back to my right side and 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, 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. I had 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, oxygen mask, drains in my tummy, the epidural and a catheter in my bladder. I could barely move for tubes and wires!

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 and Timm came in.

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. I was frightened but totally out of it, not knowing what was real and what I was imagining.

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 and they agreed I was probably reacting badly to this and they changed the epidural.

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 but 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.

The following day I went onto a normal ward and the anaesthetist visited every day along with the pain team and 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 and 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 and 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.

After 6 days, I was off the epidural, my 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.

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 but I’m so glad to be here. I’m still very emotional and tearful and it’s only been the past few days where I have felt more like myself and up to visitors.

My 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!

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 and been 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 and 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 and 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