The Voice of Support I Needed

Since my stoma surgery in December last year, my key focus has been my physical recovery. It’s been a long journey that is not over yet, but my last open wound has FINALLY healed...hallelujah! Considering how far I have come, now feels like the right time to tune into my mental health and unpack everything I’ve buried away for nearly a year now.

For my October blog and the month of World Mental Health Day, I am going to share a part of this hidden side of my recovery. A part of this has been to think about the voice of support I needed from the doctors and nurses before my emergency surgery and whether this would have made a difference to how I adapted to life with a stoma. A part of me feels like nothing anyone could have said would have helped me feel ok about needing a stoma. My feelings towards having a bag (I never truly understood what a stoma was) have always been negative and my experience in hospital didn’t help. But here goes...

I know that you are scared, but you are brave enough and strong enough to face your biggest fear. The first step is unlearning everything you know about stoma bags and starting again. What would you like to know?

We can put you in touch with other young people who have gone through the same and who can support you better than us in the long term. I am not going to tell you that you can lead a normal life with a stoma because I don’t have one. But you will learn for yourself in time that you can, as all ostomates do. In fact, you will learn that you can lead a better one. Your stoma will give you the chance to live pain free, to enjoy everyday with your loved ones, so please take it. In your reality, a stoma is a gift and not a curse. It will give to you rather than take away from you, if you let it.

The operation won’t be easy. It will be painful and confusing when you wake up, but you will wake up and it will get better. There is no rush to get up, you will recover in your own time and we will be there to support you every step of the way. You might feel incredibly sick every day. You might not want to eat. You might not be able to get up when we encourage you to. You might panic over the severity of the pain. You might not want to look at your stoma at first. You might want to keep your curtains shut all day. You will be upset. You will feel vulnerable. You will feel grief and loss. All of this is completely normal. Let it all in and really feel it, don’t bury it.

When you are ready to care for your stoma yourself, things might go wrong. You might have a bag leak. We promise to be on hand and we promise not to break our promises. You might not like your stoma very much during these times, but try to view your stoma with kindness because it is saving your life. You just need to get to know each other a little better and that will come with time. We will manage your pain to make things easier for you to recover and we will celebrate the little wins with you as you recover. We will care for you, not because we have to but because we care about you.

The journey doesn’t end when you leave us. There will still be lots of learning and recovering to do at home with Adam’s support. At the beginning, you might not sleep. When you do, you might cry each morning when you wake up and face your reality all over again. You might have days where you are at a loss with it all. Although you won’t believe it, it gets easier with time, as your seemingly never ending pain improves and as you get to know your stoma. You will start to feel less sad and see more of the positives. You will still have challenges to overcome physically and mentally and work to do when you are ready. Don’t be hard on yourself when you are finding things difficult. Try to remember that this pain is temporary and it will all be worth it to get your life back. To get your beautiful life back.

This was a really difficult and emotional exercise for me. Not because I didn't know what to write, in fact it sprawled onto the page quicker than I expected, as though it was waiting to come out. It was difficult because I let myself feel all of the feelings I had buried. It was difficult to acknowledge that I felt let down after my surgery, when I was at my most vulnerable, by the nurses I had no choice but to rely upon. This was (and still is) a source of great sadness for me.

All this time, I buried these feelings because I didn't want to be ungrateful for our incredible NHS which gave me my surgery. The thing is, thinking about the voice of support I needed led to a realisation that it was more than a voice that I needed. I needed care, compassion and understanding from those trusted to look after me and the lack of these things led me to learn that I was unworthy of them. This was an important message that I was thankful and relieved to hear. It was not my stoma that made me feel unworthy. Wendy saved my life. My Crohn's disease had taken everything from me and she gave me my beautiful life back.

So that I can re build my self worth, it is time for me to say out loud that the hospital failed me after my surgery. Day by day, I was getting weaker, fighting a battle I was not supported to win. It just so happened it was the biggest battle of my life. I knew I needed to get home to be truly looked after so that I had the strength I needed to recover. Perhaps one day I will feel able to talk more openly about my time in hospital...but not today. For today, I am allowing myself to feel angry about how things were, compared to how they should have been. I am allowing myself to believe that I deserved better. To eventually know that

I am beautiful.

I am worthy.

I am grateful to be different.

Love Me &

My Friend Wendy.