Hi, my name is Talya and I am a 26 year old ostomate from Coffs Harbour who is terminal with cancer and making the most out of the cards dealt to me. Here is my ostomy surgery from 2012 to today and how I turned a difficult and isolating time in my life into a way to help ensure that others empowered and supported as they navigate life with an ostomy!
Why I need a stoma?
In March of 2012 I lost my dad Rick to stage IV metastatic colorectal cancer, he was just 41. Later that year I had what I thought to be a routine colonoscopy, but instead I learned that at 21 I had early stages of colorectal cancer and I needed to have my large bowel and half of my rectum removed in order to survive colorectal cancer.
It was a pretty difficult stage of my life, it was incredibly hard on my family too given it was the first Xmas without my dad. Seeing how much everyone was grieving and missing my dad, I couldn’t bring myself to tell anyone about my diagnosis and I kept it to myself … I didn’t want to cause them more pain.
I was tremendously terrified and what was worse was I felt so alone too.
Normally if something went wrong the first person I would call would be dad, we were close and spoke countless times a day. Dad always knew the right thing to say or had the best advice to give.
I was handed resources from my stoma nurse to read over the Xmas/New Year break so that I could process the surgery. But after reading the pamphlets and guides I felt even more alone and had so many questions.
You see, everything showed those in their golden years living and enjoying life, and I felt I couldn’t relate.
What lead to starting a blog?
I had no idea what life as a young married woman with an ostomy would be like and I didn’t know anyone personally with a stoma I could ask or engage with either.
I had questions pertaining to intimacy, body image, lifestyle and more; I didn’t know if my career could ever be resumed too; then there were those burning questions I felt too embarrassed to ask such as periods/female stuff if anything would change, if you can smell the contents of the pouch, if I could have children, being prepared for leaks, what it could be to study on campus with a stoma, or if being active with a stoma is possible – so many burning questions indeed.
I sought out local stoma support groups, but at the time the person who was closest to me in age was 40 years my elder and I just felt I couldn’t relate to their circumstances.
I then turned to the internet – particularly social media- and struggled to find anything to help me prepare or understand navigating life going forward with a stoma. There was very little information out there on the inter-webs and what I had found so far were terrifying pictures of prolapsed stomas, I was so scared of everything and wondered if that is how a stoma looked or if it were normal.
I realised in that moment that if I was struggling to find relatable content to help me as a young 21 year old to navigate Stoma life that surely I wasn’t alone.
I decided I would start a blog sharing the real, the raw, the good and the shitty times, in the hopes that it can help someone else to feel less alone and relatable. Thus my blog Feeling Ostomistic began! I started sharing my journey pre & post surgery along with what I had learned along the way (tips, tricks, hacks, lessons learned).
My post ostomy surgery journey:
It took 5 weeks in hospital recovering post my colectomy and it took approx 8-12 weeks to adapt to ostomy life and get through the constant leaks. Once I found the products that worked best for me through an extensive trial and error phase, I soon realised that having an ostomy gave me my life back!
I found I was able to get 7-10 days between leaks and I was able to do things I hadn’t done for a long time due to constant need to be close to a toilet! I went travelling interstate on a train for 3 days, I went to Pink’s 2013 concert, I felt the happiest in myself and I felt confident too with my body and my stoma.
12 months after my surgery I learned that there was now a large tumour sitting where my bowel used to be, it had made itself quite at home; 6 months later I was told that I now had thyroid cancer and a second tumour in my abdomen/mesentary.
As my health took different directions and I was diagnosed with multiple primary cancer diagnosis’, I decided to write about this and expanding on what I had already experienced.
The gift my ostomy gave me:
I was receiving emails from people who had an ostomy saying that I was paramount in their recovery and adaptation to ostomy life; I had nurses reaching out to me to thank me for helping them to understand how to help and care for young people with a stoma better; I was even receiving invitations from leading researchers at university into better improving health access to those under 25, a study on young people with an ostomy and a study on young people with hereditary cancer genes.
My blog has also gifted me some amazing and close friends too – often leaning on each other. Having cancer sucks but there are some beautiful moments to come from cancer, I know it is weird to say but I strongly believe that life gives us so many opportunities everywhere we look and it is what we do with these that make up our lives.
I am also proud of the community I have created through my blog, I have some wonderful and supportive readers who at times feel like my own personal cheer squad – each day their comments and support encouraging me to get through the day can make the incredible amount of difference to my happiness too.
My blog is growing with readers each month too, average reach is approx 10,000 views a month and I am often getting emails from folk to say thank you for something I had written!
It makes my day to know I am helping to add my mark on the world.
Launching a magazine for young people with an ostomy:
By mid 2015 I was noticing that there were more and more websites/blogs and social media accounts being established with the aim of helping those with an ostomy or to remove the stigma attached. Now that there were more active voices in the online community it gave me an idea of creating an online magazine ‘The Ostomistic Life’. Through creating a magazine it has given me the opportunity to collate the wealth of information out there into one place.
So I started working on the magazine and had so much encouragement from the community, my stoma nurse and also contributors keen to participate too! I felt extremely passionate and excited for those trying to navigate ostomy life and hoped my magazine would be a valuable resource.
My magazine idea was (and is) so important to me as I am a firm believer in that representation matters and I needed to make it as accessible as possible as I wanted people to be able to gain from the information. This was the reason behind my decision to offer this as a free magazine, so that even those living ‘below the line’ or disadvantaged could access this resource and the wealth of content contained within. Through also having it purely online means that overheads are kept to a minimum and it meant that I could then offer it for free – as well as giving more people the opportunity to read and access the magazine…. So online it was!
But then I had to put a pause on the magazine and the launch as I learned I would be starting chemo in September 2015. It was a difficult decision to make, but until my chemo had finished and I were of better health I knew I had to… I couldn’t dedicate 110% of myself to this much needed magazine as I had no idea how or what would eventuate with chemo.
What came next and dealing with the unexpected:
In the meantime I continued to blog (when I was able to and when my health permitted) about: chemo; chemo with an ostomy and how it affects my stoma; other topics to help support a loved one who is going through chemo or who is unwell; topics about ostomy life; I also began open dialogue about end of life planning and the importance of a will, an enduring guardian, power of attorney, as well as letting your loved ones know your wishes!
In the New Year of 2016, I was hospitalised for a fever and also due to one of my abdominal tumours (it was the size of a rockmelon under my stoma) had turned necrotic and the infection spread to my skin’s surface and now there were ulcers around my stoma. My stoma nurse was amazing! She was calm and comforted me when I was a wreck, she was so knowledgeable in how to help dress the wound and to get a perfect seal on my stoma.
It was a difficult time for me and I couldn’t have done this without her help and guidance!
The tumour was removed around Valentine’s Day in hospital 800km away. I wasn’t prepared to wake up with a new stoma, I was accustomed to my stoma for 3 years and it was a huge part of who I had become.
My new stoma was horrible!
Due to the massive watermelon sized tumour in my abdomen it meant that my stoma now sat 5-7cm under my skin’s surface, this wasn’t expected and not the fault of my surgeon, but because my tumour is attached to ALL of my stomach, kidneys (both), my liver, lower ribcage, as well as what is left of my small bowel it has instead added pressure to my stoma and pulled it down.
This was incredibly painful and horrific. My stoma leaked 20 times a day (no exaggeration) and I struggled with adapting to my new stoma.
I grieved the loss of my old stoma!
I now had no confidence, I struggled with the constant leaks, it was so painful, no matter what I did my skin was always raw and exposed, the new position of my stoma was much higher than my old one.
Adapting to ostomy life since the surgery was a lot longer than the time it took with my first (original) stoma. It was hard to get used to knowing that THIS was my new normal, just how much it leaks daily means that I often experience very public and embarrassing stoma leaks.
Despite how much this new stoma has taken from my life and grieving over my old stoma, I haven’t let it stop me from trying to live my life. It took time to get used to days with 3 leaks being normal – knowing that my old stoma I got 7-10 days between each bag change – it was a massive adjustment period.
I had to learn to navigate ostomy life differently this time round:
With the challenges over the last 18 months, I couldn’t have done this without my stoma nurse or my husband, both never made me feel embarrassed or less than, they always treated me with respect and compassion.
One thing that was as hard (if not harder) than adapting to the constant several daily leaks, were that I learned a lot about myself and those around me. I stopped being invited to stay over due to the risk of making a mess at someone else’s house, I stopped being invited out socially as it was embarrassing for others dealing with my stoma leak issue and it got too hard for others to face.
I became alone (with the exception of my husband, stoma nurse, family) and I was housebound, my depression was at it’s peak and I lost all desire to get through as it was just too hard knowing I will live like this the rest of my life.
Then in late 2016, I finally resumed the magazine work and was working towards a February release which was really successful, thousands of views within hours of the launch and stoma nurses worldwide have given their feedback and thanks too! It has made me feel appreciated and that all of this hard work has been for an incredible reason – knowing how much people loved and gained so much from the magazine – has helped me to keep going and be inspired despite how hard each day was, I knew that there was someone out there who needed me to do this for them, so I did!
This magazine (just like my blog) means so much to me and I hope it is to be my legacy that it can continue to help others long after I’ve passed from cancer.
I’d always lived my life with this inner desire that it’s my destiny to help others, I thought it could be achieved through nursing or social work… but instead I think that it was taking the courage to start a blog and later a magazine to fulfil my heart’s desire to help make a difference to someone else’s life.
As Gandhi says “be the change you wish to see in the world” and each day I am trying to be the best version of myself I could be despite the challenges faced.