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

4 replies
  1. julie
    julie says:

    So good to hear you are on the mend, Sam. Everyone has missed you, cared about how you were doing, and awaited your first post eagerly.
    You are A True Warrior.

    Reply
  2. Carol Floyd
    Carol Floyd says:

    So glad to see you are back home and starting your recovery, you are so brave, I am a lot older then you 67yrs but need the same operation plus they want to give me a barbie butt, I like yourself have had lots of operation and the one for the j- pouch went a bit wrong and I nearly died, so as you can imagine I am very scared. when they disconnected my J-Pouch and gave me an end Ileostomy I thought that would be the end of any more operations. But now have a very large Hernia and problem with the old j-pouch but I keep refusing to have the operation my be I should be braver and have it before I get any older or get more problems with the hernia. I hope your recovery goes well, but try not to rush it. You have a wonderful family to take care of you. God bless. Carol .

    Reply
  3. Kathleen Casey
    Kathleen Casey says:

    I’m so glad and relieved to hear you’re on the mend. I’m amazed and inspired by your self-advocacy story and your husband’s ingenuity in figuring out the fentanyl reaction. I so look forward to future posts when you are recovered about your mind-body work on yourself. It is completely real in my experience too. Take care

    Reply

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