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Helpline We’re here 24 hours a day: 0800 328 4257

Empowering you to own your journey

01 March, 2021

This is a sponsored feature from Hollister.

“My Name is Victoria Danson and I have lived as an Ostomate for seven years. I have shared my story in alliance with Hollister to empower other ostomates.  Hollister care and strive to make life more rewarding and dignified for people living with a stoma.”

Q – Before your surgery did you have any misconceptions about stoma surgery and how that would be, life with a stoma?

I thought people would treat me different having a stoma and that worried me. I had never seen a stoma bag before, I thought they would be big and ugly.

My consultant was fantastic, he took my hand and drew me a picture of what he was going to do, he drew the bowel, what was going to cut out, he drew a bag and where that was going to be. The stoma nurse showed me different bags and she gave me the option of where I wanted the stoma and she absolutely put it spot on as I wear high waisted jeans and bikinis.

The last thing I said before I went to sleep was “please can you make sure you give me a neat scar,” that was the least of my worries when I woke up!

The aftercare was fantastic, the stoma nurses were empathetic and sensitive. My new life involved getting used to emptying the bag, changing the bag, and even the small things like having the catheter removed, having the oxygen removed, the nurses were always there to be with me. The stoma care nurses were always supportive and still now they are fantastic. The stoma care nurses invite me along to stoma education days. I have done guest speaking for the NHS, they are a big part of my life, they are fantastic and do a wonderful job!

Q – Is there anything that really made a difference to you in the early days after surgery?

After surgery on the ward, the stoma nurses arranged for two girls who were living with a stoma to meet me. I had not washed my hair for two weeks and I had lost lots of weight, I felt awful. They had their makeup on, looked good, were working, and leading an active family life with children. The girls shared their experiences of being in hospital and that was a bit of lightbulb moment for me to realise how important talking is. I then knew that I wanted to set up a support network to bring together people of Lancashire who are on the same journey, living with a stoma.

This support group became my focus. When I was discharged from hospital, I was still weak, only six stone with little muscle mass, I could not walk up the stairs. I moved in with my grandma and grandad to use their stair lift, which was comforting as this was the family home, I grew up in. I remember staring out the window, the same window that I used to look out when I was a child when I had hopes and dreams. I knew that I wanted to raise awareness about having a stoma, bring people together, empower them and prove to everyone It is nothing to be afraid of and living with a stoma is not a terrible thing.

Q – How did you deal with stoma related self-image, body image?

At the start it was difficult, I would only wear baggy t shirts which I had never worn before.  I was so conscious about people seeing my stoma bag, I was anxious about people seeing the outline.  When I set the support group up, I told people my story, people told me I was an inspiration, that built my confidence and now I will wear anything I want to. Support wear is important giving you the confidence to wear what you want.

When I came out of hospital, I had a lot of time to think and I thought do you know what, I am going to be who I was always meant to be!

My long hair was dyed blonde, it had been for years, it was not in the best condition and I spoke to my mum, I said “I’m going to reinvent myself.”  We went to the hairdressers; I had my hair cut short and matched to my natural colour. I remember walking out with my stylish short hair thinking goodness, have I done the right thing? I took one look in the mirror and I thought YES, I HAVE! I loved it, I can finally be me, I do not have to hide behind this mask, I do not have to hide behind this image anymore, I can be who I want to be.

Q – How was the first time you put on a swimming costume after you had your surgery?

It was daunting, I remember shopping around everywhere to try and find a swimming costume that would cover the bag and I managed to find one. It was a swimming costume with an extra piece of frill round the front, that was perfect because that gave me the confidence that it covered the bag, but it still looked pretty.

I took my son swimming when he was nine weeks old, there would be six of us in the class. It would be quite daunting having to walk round the pool past people in the viewing gallery, but I knew that if I did not get in the water with my son, he was going to miss out and now he is an excellent swimmer! It is good to put yourself out of your comfort zone, that is how you grow.

Q – Have you ever had somebody say something hurtful that was either deliberate or as an ignorance and how did you deal with it?

I remember on one of my first nights out, I was in a local bar and I needed to change my bag, so I went to the disabled toilet, I had a Radar Key with me which allows access to any disabled toilet in the UK, however this toilet was locked from the outside. I advised the staff member that I needed to use the toilet, to which I was advised that I did not look disabled enough to use that toilet. I got my bag out and showed him and I said I think I will be the judge of that, he did not know what to say and did not know what a Radar Key was either. I told him I had a Radar Key and he said what is that? I was in shock really at the ignorance and the lack of communication and training those staff members, if they are going to be staffing a disabled toilet then they should be more sensitive.

It is taking will power and strength to try and get my life back on track, doing things that I was doing previously, for someone to try and knock me down. I refused to let him ruin all the challenging work that I was doing to build myself. I went to the manager behind the bar and made a complaint and told him the conversation that had gone on and I advised they need training as not every disability is visible and not every illness is visible. Somebody might not look ill, but you cannot judge somebody based on the way they look.

To anyone who is struggling to adjust to life with a stoma, please give yourself time, do not expect just after surgery that you are going to feel like everything is going to be amazing. People say to me now, you are so strong and amazing. This was a result of my path and my journey. I always say when you are struggling with anything in life, body image or the way that you are feeling, “find a passion that you love, keep building on that passion, invest your time, energy and effort into that and you become good, you then grow as a person and that builds confidence and with it, it changes how you feel about yourself. Beauty does not come from the way that you look, it comes from how kind your heart is.”

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