Mentally, physically, emotionally how do I prepare for surgery? – doubt creeps in

On Tuesday I had my pre assessment to remove the last of my inflamed colon and make me and my stoma inseparable forever.

not my surgeon but an internet pic

not my surgeon but an internet pic

If I’m honest I’m not sure how I’m feeling. Last time I didn’t have to go through all of this waiting and worrying. I feel a bit like I’m awaiting sentencing for some sort of crime. Almost like being bailed by police and awaiting my day in court. I can’t stop thinking about what will happen on the dreaded day and the horrific recovery time following me waking up in that horrible hospital bed.

Let me clarify…I don’t think having an ostomy bag is comparable to serving a prison sentence, but from my experience the recovery period can be hellish, mind numbing and frustrating.

I’m feeling torn. I can’t wait for life without the constant pain of IBD – the blood, fatigue, sleepless nights and none stop illness – and I can’t wait to be rid of my leaking fistula, but in the same breath I’m apprehensive about life following my operation, frightened of the operation, waking up hooked up to monitors and machines, and even life never being free from my bag.

I left the hospital on Tuesday, not feeling reassured or positive, but feeling confused and slightly angry. While I was there, sat on my own, I was treated with and witnessed the normal incompetence you hope not to see in the people who you are entrusting with your life. If I wasn’t so confident in my surgeon I would have run out of there screaming, cancelled my operation and jumped on the next plane abroad so they could track me down. I was directed to departments I didn’t need to visit, taken for a blood test with a non nurse who dropped things on the floor before trying to put them in my arm, and then proceeded to put my extracted blood on top of a warm radiator – hmm I’m no medic but even I know that isn’t how it’s done!

Two and a half hours after walking nervously into the hospital I left to head back to my normal working day. I felt well and truly messed around, emotional and unsure. It took all my will power not to turn around, walk back to the desk and tell them I no longer wanted the op. Instead I composed myself and attempted to pull myself together enough to drive to Crown Court to get on with my job, shockingly enough I found it difficult to function for the rest of the day.

Tuesday was the first time I really started to doubt I’d made the right decision about having my ostomy permanently. Now I’m worried that I’m getting cold feet. I’m sure it’s just nerves talking but I’m really starting to wonder if I will regret my decision in years to come. I know my health really must come first, and I know it’s fear talking, but there are real issues which are playing on my mind. What if I come to hate my body; what if the scars are ridiculous; what if the fistula doesn’t go away despite the operation; what if I lose my confidence; what if something goes wrong and I end up unable to have children? I just don’t feel like these questions have been addressed.

Instead one thing stuck in my mind – it was something the nurse dealing with me said when I asked to speak to the colorectal specialist nurse to get some of these questions answered. She said: “she is currently dealing with someone who is having a serious operation” – then realised what she’d implied and made matters worse by saying “not that yours isn’t serious dear”.

Having my ostomy on a temporary basis has been fine. But I worry perhaps I have coped so well because there was always the tiniest option one day I might live life without a bag, if I have this operation that slight chance will be gone forever.

But now I’m used to Winnie and I’ve embraced her it would be silly to have her reversed, knowing that one day I would have to go under the knife yet again to get her permanently. If I don’t do this now I’m just delaying the inevitable.

I guess what I need is some advice. I need to know how to prepare myself for this massive thing I’m about to face. What should I do to get ready for my operation, mentally, physically and emotionally. Last time I was an emergency, there was nothing I could do but hope and pray, this time I have just over a month, yes a month packed with a trip to the Mirror and other exciting things, but a month to worry myself sick no less.

Please if you have any advice let me know, things to ease recovery, make me smile when I wake up and things to look forward to. I’m not going to live like a nun in the weeks before my operation, I want to calm down but still see friends and enjoy life – after all there will be months of sitting around bored shitless afterwards.


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.