I thought Id do a little update, later when I’m fit and well I’m planning some posts, vlogs and helpful stuff re stomas and ileostomies etc
I’ve also had some amazing offers to do some work and events to raise awareness and money so I’m very excited.
But I’m still recovering and so trying to not take on any stress. So my post today is just a little update.
Recovery from a major operation is hard slog, man. Your whole body has taken a beating and it’s a slow and steady recovery. You are taking so many different drugs, have lines in and out of your body. Your legs are bound in surgical stockings and you are laid up in a hospital bed.
The pain is a toughie. For the first three days I had an epidural in that I could top up as and when I needed it. Ill be honest, I didn’t think it was doing that much… I thought I was a proper bad ass.
Seriously, I was walking to the toilet two days after surgery thinking ‘I am so hard’
Then they removed the epidural.
And I cried.
Oh my god! I’ve never felt pain like it!!! My wound felt like it was blazing on fire and my whole stomach area felt like I’d been beaten by a rhino. My back was sore, my head hurt, the passage of food through my gut felt like a thousand snakes…
Now I’m getting on top of the pain, I’m on strong painkillers but the time between them is widening each day. Last night I didn’t wake for pain relief which is the first time since the op so I’m starting to feel like I’m turning a corner.
I’ve had a lot of issues with my ileostomy bag leaking since the op. This is hard to deal with. The first time it happened I cried a lot. I felt so embarrassed. I felt like a baby. I looked down and there was just waste everywhere and I flipped. I got so upset and my mum was here. She got really upset too. Not that it had happened but that I was upset.
Since then it’s happened a few times and though difficult, it get a little easier each time. Well perhaps not easier but less shocking, I’m more adaptable and I know how to deal with it now.
Yesterday morning the stoma nurses tried me with a different bag. It’s a two piece system and has so far been a massive success. It feels really solid and has had no leaks – I feel quite confident on using it.
I’ve had a couple of set backs in the last few days too. The first is I developed thrush in my mouth and throat. This is gross. It’s apparently quite common after surgery and also due to the large dose of antibiotics I received after surgery. It sounds like not that big a deal but because its so bad, it’s stopping me eating and drinking. My throat is so sore and feels like its full of bits and my mouth tastes disgusting. Because I’m not eating and drinking, my weights dropping fast, my blood pressure is low and my output from my bag is just green fluid which is not good!! I am on a remedy for the thrush though so hopefully it will clear up soon.
The other setback was a bit of a weird one. I had a full blown panic attack.
I’ve not had a panic attack before and kind of thought it was mental rather than physical thing so it was a total shock. I was sat with my stoma nurse and she was cleaning my stoma, it was a little sore but ok. I started to feel really queasy and thought I was going to vomit. All of a sudden I just couldn’t catch my breath, she got me to lie down on the bed and my hands, lips and legs went numb. I lay there gasping and my hands froze into claws – I had no control over my body, it was like I was frozen in fear.
After five minutes it passed and I was totally back to normal! They said my body was reacting to stress and it was a panic attack. I’ve never felt anything like it, and at the time I didn’t feel particularly stressed out or panicked. It was terrifying and I hope it never happens again. I feel for anyone who experiences anything like this now – so scary!
Alongside recovering from surgery I am still on the dreaded steroids. I have to taper off from the IV high dose steroids I’d had the week before surgery. So I’m dealing with all the nasty side effects of the evil prednisolone too!! Palpitations, insomnia, anxiety, hairiness and many more. It is shit but necessary. My body will have stopped producing cortocoids and so I have to taper off in order to allow it to start producing them naturally again. Because I take the steroids I also have to take two other medications, one is a calcium supplement the other is a gastro tablet to avoid ulcers.
But I AM off all my Ulcerative Colitis meds which feels AMAZING. Once I have tapered of the pred, I can come off the other meds which means apart from any pain killers I may need, I could be totally med free!!!
This is an awesome thought…
So tonight I was finally released from hospital – it’s been 7 days since my surgery. I pushed to be discharged as I had just had enough of being in hospital!! Also I knew I had a great support system in place here at home and that I believe ill recover better here. Timm and I run our photography business from home – The Picture Foundry and so he is about every day. He is doing all the school runs and taking card of the kids and so is here to cook and help take care of me. For times when he needs to be away for work I have my amazing, wonderful kind friend Caroline taking over and looking after all of us. I call her my back up Timm because she is so much more than just a friend. She is someone I can rely on for everything. I just hope in the future I can support her as much as she is doing me right now. I am blessed to have her and her partner Jamie in my life.
My mum is also on call to help out. She has been great in having the kids, helping Timm with cooking and cleaning and visiting me. It’s been a relief to know that Timm has had support from others. And mums cooking meals in advance for him has been just fab!!!
Getting home was a tough slog. The walk to the exit of the hospital exhausted me so much I thought I’d fall asleep! We picked the kids up from Caroline’s on the way back – I wanted to go in and collect them and it was good. But it totally took it out of me. We stayed a few minutes and then I was done! I just couldn’t concentrate and needed to be in my bed.
So I came straight home and home felt WEIRD after two weeks away!!! I came to bed and Timm sorted all my meds and put the kids to bed. Then he came and we just had a quiet cuddle.
Though I’ve seen him every day we haven’t had a second alone. So the best feeling in the world today was laying in Timm’s arms, eyes closed and enjoying the quiet, sure and calm feeling that I was home.
Love Sam xxx