One of the biggest challenges for me over the past year has been the anxiety and worry I have faced with my diagnosis the whole way through to caring for my stoma. It has been so much change and an awful lot to think about. Plus particularly when you’re in hospital or chemo infusion you can feel like a robot connected to machines with lots being done to you – the lack of freedom was hard.

When I first got home from the hospital, I was really worried about my stoma itself. Was I going to get a blockage? Why was it going in and out? Is it going to prolapse? Why was it changing in colour? It was genuinely a rollercoaster, but I was really thankful to have the stoma care team available to call during the week to chat about any issues. It was funny though as the nursing service is only available weekdays until 5pm on Friday and you can be sure something would happen at 5:30! Was always the way!

My community stoma care nurse is amazing, she always asks what worries I have so we can deal with them together. For instance, at first, I was concerned about running out of bags but she got me what I needed and I have a top-up drawer now. That took any anxiety around that away. I have had times when I’ve experienced pancaking and ballooning, I have had leaks, but I know I can talk to her and we can work through it. Now I know what to do if something occurs – it’s a learning curve but there’s always a solution.

My partner and family have been so supportive too – I feel incredibly lucky. My partner in particular would do anything to help me, even if that’s running out to the supermarket for a very specific item and back again if it’s the wrong one! He says to me that he loves me for me and that the bag means I’m still with him. His attitude has really helped in my acceptance of my stoma too. I’d be lost without them all.

During chemotherapy, everything tasted horrible to me – including drinks which was really difficult as you’re so conscious of dehydration and how this affects your output. I persevered and kept trying different things and in the end, I found in the end lemon tasted ok. One thing everyone has said to me is eat whatever you want as you don’t always want to eat during chemotherapy. Take that with a bit of caution though, after losing so much weight during my first hospital visit, I have put a lot back on over the last year, so my stoma has therefore grown with my body. I still get pre-cut pouches but now cut them slightly bigger myself with my changing stoma. It’s something to be conscious of – your stoma changes as your body does so be aware of this with your bags.

I would also encourage you though to go for clothing that is comfortable for you, especially comfy trousers. As your body changes, stretchy, easy to wear clothes that support you are really important.

The other thing I found during chemo was I had neuropathy in my hands and feet. At the time this felt like fresh pins and needles, really sharp and worse when I was cold – my hands would often spasm and seize up so I couldn’t move my fingers. So, I would always make sure I was as warm as possible wherever I was and would make sure to warm hands up or change my bag in a warmer environment.

Summa