The nerves set in: My emotional week before my ostomy op

For the first time I have really broken down. After years of holding in emotion, grief appears to have suddenly hit me like a brick wall. It appears to have come out of nowhere and now the gates have opened, rather like this year’s onslaught of food waters, I just can’t seem to get the tears to stop.

just before the tears

just before the tears

I just don’t understand what’s happened to me. A month ago my surgery to make my ileostomy permanent couldn’t come soon enough. I was literally begging to be taken into theatre. Now the thought makes me feel sick.

Perhaps it’s just nerves. Perhaps I’m starting to feel like a blushing bride the night before her wedding. But now I’m starting to worry it’s more than just nerves. I’m starting to think I’m rushing into this and I’m simply too unprepared to have this operation. Perhaps I should have considered the other options, such as a J-pouch, instead of rushing in head-on to the full-blown forever stoma.

I guess the big D – doubt – has started to set in.

IMG_3347Ever since I returned from London I seem to have lost the ability to be happy. I can’t seem to think a positive thought. Every joyful moment seems to flit past me, racing away from me like a bad smell. It’s a shame as I’m really trying to enjoy my last few days of freedom. I think I’m feeling a little depressed, but I’m not sure if it’s the prospect of the long road of recovery ahead of me in the next few weeks, my frustration over my career, or the fear of going under the knife again which is forcing me to plaster this fake smile on my face.

Yesterday I was just doddering along getting on with my perfectly normal weekend when I suddenly broke down. I looked in the mirror and realised that this was it, this was what I was going to look like forever. And I just buckled. It was suddenly as if all my problems – concerns about going under the knife, fear of the pain, the time off work, the recovery – bubbled  to the surface. I wept and wept. I thought about my life and everything that had happened and I just couldn’t stop crying. I felt like the tears would never stop.

I don’t understand what’s happened. Even sitting at work today I felt my ostomy start to fill up and I felt the overwhelming urge to bury my face in my hands and start weeping. I held it in until I left work, but the moment I got out the door I just broke down.

This new wave of emotional vulnerability has totally flummoxed me. I’m a naturally emotional person, but I don’t think I was even this upset when I needed the first operation a year ago. I was frightened (actually petrified), upset, but I wasn’t a blithering wreck, but there again maybe I was just too weak and helpless by then to even have the strength to think about it let alone cry.

I don't want to go this thin again

I don’t want to go this thin again

This past year has been one of the best of my life. I have felt healthier, fitter, more energised, and had more success than I dreamed possible. Yes there have been a lot of challenges, and, yes it hasn’t been entirely pain-free or easy, but it has been better.

I’m surprised I suddenly feel so bothered about the way my ostomy makes me look. So far I think I’ve accepted my new body with open arms. I have welcomed my scars, bag and even (to some extent) come to terms with my horrible fistula. I admit I still struggle with the N word and haven’t worn a bikini in public, but I know everything will look so much better when I don’t have a fistula bag filled with blood and mucus leaking everywhere every couple of hours.

I know I’m still beautiful and I know that I should be proud of my life saving bag. But something about these past few days has made me think this is not my life should be like. It’s made me wonder if I will come to regret not trying other options in the next few years, decades etc. I’ve suddenly realised that I will still have this bag when I’m 80 – if I live that long.

I guess it’s all becoming a little bit real, and I need some support. The excitement of working at the Mirror is over now and I have too much time to think, worry and frighten myself out of having the operation. I know I have to have this operation, but I worry that this time the hospital hasn’t done me any favours. Before it was my only option, without the operation I would probably now be dead. This time they left me cold turkey and who knows if I could have ‘survived’ with a shed load of medication to try and bring my inflamed rectal stump back under control.



I know this is my chance and I need to push my worries aside, but will I regret this choice in the future. Will I wish I had tried the other option first. A permanent ostomy, having my back passage sewed-up, it all seems so final, so irreversible – I suppose that’s because it is.

So I now have nine days to worry and bite my finger nails down to the cuticle.

Part of me wishes I hadn’t given up drinking yet.



6 thoughts on “The nerves set in: My emotional week before my ostomy op

  1. Hello there,
    Your nerves and fears are totally understandable. And this surgery IS much different because last year was a do or die situation, now its a choice. I went through a similar situation in ’12/’13. Take down done 1/2013. I have extreme Crohns and have had ostomies twice in my ife, this last one being the longest 9 mo. I now learn about stem cell clinical trials as treatments and new different type drugs going before the FDA for approval in June (I’m in the US). That’s means HOPE to me. I dont regret a day that I don’t have my ostomy I’m glad my doctors fought with me to regain that option. Before my surgery I visited and was treated at 4 top-notch hospitals and ended up at Stanford. I pushed for options instead of “permanent” and they figured something out. My life and bowel sitch will never be perfect or normal but I’m grateful I have the choice and am hopeful more drug and treatment options are on the horizon within our lifetimes.
    If there is a doctor or PA you can speak to prior to surgery to make sure you have eliminated all other options, it will give you piece of mind and heart.
    You will be beautiful with either decision, your a fighter, a leader and an inspiration. Let the tears and emotion come, its a huge decision.

    I’m welcome to share more of my story or prescriptions and trials if you have questions or interest. Hang in there!


  2. I can say ” I know how you feel ” I was in a stunned emotional state as you are , nothing I say will help much , but some of us travelled that road you are on to a better life , we would never chose to have such invasive surgery , but when the choice is live a reasonable life with a few added bits and bobs or continue with lots of discomfort and pain and lets face it , to not be around any more , I made the choice 45 years ago and have had a great life , like 17 years of marriage , playing in the jungle in Thailand , snorkelling on the barrier reef , and seeing my Goddaughter come into this world and grow up , as I say no one can feel as you do , but we can feel real empathy with you , sending lots of supportive hugs to you young lady …. mel….

    • Sounds like you are making the most of your life. You are totally right once this is all over I can get on with my adventure through life. I have so much I want to do which I should hopefully be able to once this all sorted.
      Thanks Mel.

  3. I read your blog and tweets and admire how strong you seem.
    I’ve had Crohn’s for 21 years and despite numerous operations
    I have fought against a permanent stoma and if I’m honest
    I think I have restricted my life so much by not being able to deal
    with the thought of it.
    Whichever decision you make the best of luck.
    I also live in Chester so I hope the hospital treats you well xx

  4. Oh Rachel, I really feel for you. It’s so scary leading up to surgery isn’t it, I still remember. You could try a J-pouch if you really don’t want the permanence of everything, I have one and am on waiting list for reversal (I’m scared too). You are still a wonderful and bubbly person regardless. Just make sure they take away the rectal stump. Take each day as it comes, do what you want to do and maybe treat yourself a glass of wine. Lisa

  5. Rachel,
    Your still here doing the things you choice to do,that’s the best thing life gives us.
    Around 14 months ago after 22yrs of crohns struggling I had to have an emergency illiostomy ( permanent stump removal)
    Although scary to deal with at the time I knew my life generally would be greatly improved,and it is,there’s no doubting that….
    Once back on my feet, I knew things were only going to get better,no more months of exsiting,now I had my live back.
    For me that is all I’ve ever wanted.
    I can only hope you find in your mind and heart the strength for you to choose the
    right answer…be as strong as you’ ARE’ you’ve still got a lot of living to do.

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