I can't believe that this is the 6th #UroStories already and today we have the amazing and beautiful Natalie Wicks who is 28 and from South Wales. Natalie has been through so much and still continues to have problems with her kidneys which requires stents and a nephrostomy as well as her urostomy. However, despite this, she will still help support and inspire other people with pictures in her bikini or her honest posts. It is an honour to share her story!
- Can you tell me a little about how you got your urostomy?
I had my urostomy due to cervical cancer after I had chemotherapy, radiotherapy and brachytherapy to treat this in 2012/2013. After a while, I became incontinent in regards to my bladder. They tried various ways to try and solve this but unfortunately, they found a fistula. My consultant referred me to specialists in London to discuss how to solve this, so I could lead a 'normal' life again. I was to have an operation called a Mitrofanoff which meant making a channel so that I could catheterise through a hole in my belly button. Sadly, I had a lot of various complications throughout the two year period, where I was at the hospital more than at home with my children. So I was down to only one option, a urostomy which I had formed in 2016.
- What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
I think being young is one of the toughest things to deal with when you have a stoma and that not many know about them especially a urostomy. So having it on show or mentioning it to people who are unaware of what one is can be quite daunting. When meeting new people during the dating process, I find getting it out in the open early on in the conversation helps as I'm not invested in the person, no feelings have developed before they 'decide ' if it bothers. So I wouldn't care about their reaction. It can be hurtful when the awareness and knowledge aren't there and people shy away from ostomates because it is the unknown to them. So telling people with a positive attitude helps overcome this. Helping to raise the awareness and educate people of stomas can help us ostomates in future experiences. Even though we worry more than needed, the ones worth your time won't be phased at all.
Alongside this, I found getting the right bag a tough process. A flat one-piece worked for me for quite a while until my scar opened up and caused my bag to leak constantly. My scar is deep with dips and caused my skin to be very sore. After trying a variation of bags I found a soft convex one piece with a barrier ring which enables me to wear my bag for 3-4 days. So stay patient and try all that's available until you find the right one for you.
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
From my own experience, try not to think you are alone, because you aren't! I didn't realise how common a stoma is until I had one. We all do such a good job hiding them under our clothes, nobody would ever know unless you told them. There is always someone there to talk too, so keep positive. It will be harder at first and on down days, but keep smiling. Also don't be afraid to ask questions. So many things go through our minds, write it down and ask away. We are a strong community of ostomates and all offer help and advise in the best ways we can. So keep your smile twinkling!
- I found Identification has been the key to my recovery after my ileostomy and urostomy surgery. Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
You were one of the first people I came across with a stoma when my story went viral on social media! Your blog Rocking2stomas has been very helpful. There is also the 'Urostomy Awareness Group' and various other groups on Facebook that offer a lot of support. For myself just knowing I'm not alone and the only one who has a stoma at my age helped me to accept it better. I also posted my story alongside pictures of me with my bag out and it felt like a weight had been lifted off my shoulders as I didn't feel I needed to hide it anymore. Showing the world and having strangers know bags are beautiful just like anybody else. My children also told me my stoma looked like a tomato, so we named it Tom and I feel that helped them accept the changes too.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
Yes definitely, the only ones that have the awareness and knowledge are the stoma nurses, who have been amazing and my urologists. When I get taken to A&E they have very little or no knowledge of urostomies. They also don't like to take in the information I tell them about it because I am the patient it seems.
So it would be great if all healthcare professionals had at least basic knowledge of all stomas to give the best care and advice. Urostomies are the forgotten ostomy and always get confused with the other stoma types. More awareness needs to be out there to educate as many people as we can about our urostomies.
- How do you feel we can raise awareness for urostomies within the general public?
Hhmmm... Good question. Having more coverage in the media. Getting our stories out there because we are all different. Bringing an understanding that just because we have bags doesn't make us any less beautiful. Being young more people seem to be more shallow about looks than older people. Let's see people with urostomies in shows, documentaries, posters, models and more... Taking the sense of abnormality to normality!! Maybe even having talks in schools so children are learning about stomas as they grow and learn. So when they are older it's not something that would phase them.
- When you are having a down day what one thing do you do to keep positive that you find helps?
I have suffered for quite a while with anxiety and depression, and more so when I first had my urostomy. Having someone to talk to that also has a bag has helped. I find listening to music and keeping myself busy helps me. Having a hobby and meditation may also help. When I feel down in the dumps just a simple bath with candles to relax then doing my hair and makeup makes me feel a little better in myself as well.
Wow, Natalie, thank you so much your answers were amazing and I know anybody reading this will feel the same. I love what you said about dating and being upfront and honest and the phrase 'Taking the sense of abnormality to normality' It has been a privilege seeing you grow and I felt very proud when I saw your article in the online papers. Also, Natalie took part in the Purple Wing's Catwalk a few months ago modelling some jeans which you can read about here and see some pictures from that day!
Next week we have Paedar's story, so please don't miss it. This gentleman has been through so much and how he got his stoma's isn't for the usual reasons.