Surgery date looms – just over a month until my ostomy become permanent

Tomorrow I’ve got my pre assessment for my surgery and to tell you the truth I’m terrified. It’s been almost nine months since I had my first ever operation and to say last time I wasn’t worried would be lying. I avoided surgery for almost 13 years through misinformation, hope and fear, but when I realised I had no other option but having an ostomy, I didn’t look back….I grabbed the surgery with both hands knowing that anything was better than living life looking through permanent black spots of agonising pain and wanting to die.

Last time was an emergency, I was too weak to really understand what was going on. Yes I dreaded it, and yes I was afraid. The week before the operation I was frightened but I had resigned myself to a life with a permanent ostomy. I thought that was the only option, so when I woke up with a temporary ostomy I was angry. I’m still angry. Perhaps that sounds unreasonable, but I told my surgeon if there was any sign of colitis in my rectum they should remove it all once and for all – it was bad, it’s still bad and he left it in.

I know there are all sorts of reasons for that, but nine months down the line I’m not well, I wouldn’t describe myself as ill either, but I’m living with the consequences of my surgeon choosing to leave that rectal stump in. My fistula causes ripping pain through my stomach (nothing like when my colitis was bad), squirts out foul mucus and bags full of blood and leaks causing my skin to blister and bleed. I still struggle with the bathroom (but not half was much as before) and infections. And I’ve just about had enough.

But despite currently having two bags, it’s not all bad news. Since I got Winnie (Stoma) I’ve had the taste of what life could be like without a colon. Yes, there are good and bad things and it’s not been the easiest thing in the world to get used to, in fact it’s been tough and at times upsetting, but life has never been better. Most days I barely think about my ostomy, yes the same can’t be said about my fistula, but most of the time my ostomy gives me absolutely no problems. And if all it takes is for me to have that forever to have a life free from fear and pain and torment I’ll give it a go thank you very much.

I guess I’m not worried about having my ostomy made permanent, I’m frightened of the surgery, but I’m even more frightened of the recovery. Last time a lot of things went badly wrong, there were a lot of mistakes made in my aftercare and a lot of things happened which I have made an official complaint about. It’s sounds wrong but I no longer trust the hospital who treat me, I have lost confidence in their ability to help me recover. These are not unfounded fears I have kept to myself, they are based on real things that happened; my stomach bursting open; my epidural placed wrongly causing my leg to feel paralysed; being given milk for breakfast constantly despite being lactose intolerant; food going missing; pain killers not being administered; being left in dirty clothes – the list goes on.

So I’m frightened. I know I have to have this operation if I want to get on with my life. Despite everything I still trust my surgeon with my life. I know I have to face the surgeons if I want a life free from colitis. I just hope I have the strength to do it.

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2 thoughts on “Surgery date looms – just over a month until my ostomy become permanent

  1. The nine months you have spent with your stoma have prepared you for this, without doubt you possess the strength to deal with and embrace this change. I wish you well.

  2. This has really struck a chord – with the exception of the fistula, it’s like reading a chronicle of my own experiences.

    I am having my completion proctectomy done at the end of March alongside an abdominal wall reconstruction to repair a dehisced surgical wound from my ileostomy op.

    Like you, I am scared. Like you, it’s not so much the operation, but the recovery. Like you, I want to trust the surgeons and the nurses, but past experiences have obliterated the faith that I ought to have in the medical profession. I empathise with you completely on that.

    Having followed you on Twitter for a while now, it’s easy to see the strength you’ve shown to get through the last 9 months. You’ve got this far, you can beat this hurdle. You’ve said yourself above that ‘life has never been better’. If you can hold on to that, you can face this head on.

    I will be doing the same. Looking at what I’ve achieved in 3.5 years since my first op and with a gaping hole in my stomach. That is what will pull me through the fear, anxiety, anger and whatever else I’ll feel over the coming months.

    All the best with the pre-assessment tomorrow.

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