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.

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7 thoughts on “Mentally, physically, emotionally how do I prepare for surgery? – doubt creeps in

  1. Good luck hun. I haven’t seen you in years, since high school I think. I’m sorry that you’ve been given a poor hand when it comes to health but you look fabulous and it looks like your career is going well. I hope your opp goes well and know that I’ll be thinking of you. xxx

  2. Hi,
    You’ve seen my scars and how bad they were they fade physically and mentally. I had my Stoma for a year till it was reversed I understand the trepidation involved with yet more surgery the disruption to your life and the permanence of Winnie. The best advice I could give you would be to re read your blogs from the last year see the things you have achieved that were not possible before Winnie and the things you will be able to achieve after the operation. Look at the comments and support from total strangers ( like me ) Does the Stoma change you? It does for the better! Winnie is you as you are Winnie whilst I understand acceptance is harder now it will be permanent would you rather be as you are now or as you were pre Winnie ?

    • Thanks for these kind and wise words. I have taken your advice and read through what i’ve done over the past year, and you are totally right, I have done things which would never have been possible a few years ago. I’m so tired right now and I think It’s starting to cloud my judgement. I’m getting gradually iller and it is never going to go away no matter what I do. The only solution to carry on living a real life is to actually to have this done.

      Thank you for making me see sense through all this self doubt.

  3. I can give advice what to take to the hospital that will make your recovery easier. Take lots of little snacks you can eat and enjoy, cellphone, books or magazines to read (it gets so boring in there), some people hire tv’s or take a laptop and watch movies etc. Also, take something really nice smelling to make you feel girly again, shampoo and conditioner and anything else that will make you feel good. I met a lot of interesting people in hospital so spent some time chatting, and because I was a nurse ended up answering some of their questions when staff were busy. Take your own pajamas or dressing gown to wear once you’ve been able to shower etc and a hot water bottle or similar which is great for pain relief. Once you have the bag you get used to it after a while and everything kind of becomes routine, and your pain should also be gone. Hope this isn’t too wordy, and feel free to ask me more questions.
    I also have a question: have you been offered j.pouch surgery where they remove your entire colon and rectum, then use your small intestine to make a pouch. It allows you to live without a bag. I wondered if they can do this with Crohn’s? Lisa x

    • Hi Lisa. Great advice I will have to remember to pack the luxury shower gel etc. I always take the cheap stuff and it makes me feel really yucky. This time I’ve got a kindle so it should be better than having loads of books around me.
      No I’ve not really been given any other option. My colon is screwed up and they’ve finally decided it’s ulcerative colitis ~ so they worry if I have the reversal that bit if bowel will get worse and I will have to have another lot of surgery almost straight after.

  4. I was well enough to hold down my full time job despite years of feeling ill before I got the news that I really needed a permanently ostomy. Never had had an op before for my crohns even though I’d had it for 18 years. So to say it was a shock when I was otherwise feeling ok, was an understatement. It was a case of either look to the positives and hope for the best or sink into a depression and tourture myself with self pity for the rest of my life. Of course I chose the former option and so glad I did. Although I still have healing issues with my recto-vaginal fistula 2 and half years on, do I regret the operation? Hell no. Having a bag for the rest of my life is so worth finally feeling like a normal person and living like a normal person for the first time since I was 8- I’m now 30. Sure, it must be very hard for you to make the decision to go for a temp ostomy and end up with the problems you’re having. But you must allow yourself hope and the opportunity that further surgery will bring of making your life better in the long run. It’s a hard road to take, and painful and frustrating. But if it makes your life better overall, then it will be so worth it! Even if it doesn’t fix ALL of your problems better, just as mine didn’t fix all of mine, then I hope it makes a noticeable difference to you for the better 🙂 and if it doesn’t? Then we carry on fighting for other options. Because at the end of the day, what other choice do we have? It grows our mental strength. So stay strong and positive. Allow yourself times to get upset when you need to and trust your surgeon! I wish all the best for you!

    • Hi Michelle.

      Thank you so much for sharing this with me, it makes me feel more positive to know that despite the fact everything hasn’t been perfect for you, you are weller than ever – and more importantly happy.
      I’m having days where I feel positive about what is about to happen, and I’m having low moments where I want to cry and not talk to anyone at all.
      Right now I’m trying to keep busy so I don’t have time to worry about the operation – it seems to be mostly working.
      Your positive attitude has already filled me with confidence that things can already get better. I have to embrace this just as I embraced life with a temporary ostomy – I coped until now right? It has to be better than a life of pain, tears and restrictions with colitis xx

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