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I’ll be honest, until last year (around September 2021) I wasn’t really aware of stomas or the reasons someone might need one. The first I heard about them was my Dr, the brilliant Dr Bhan who explained I might need a stoma post-surgery. The surgery was to remove my tumour as a result of having bowel cancer. My tumour was called Umbriel by the way. I’ll explain his name in another post (no idea why he’s male).
Dr Bhan saying I might need one helped initially in terms of me being ready mentally to have one. I think he told me this on the same day I was diagnosed with cancer. It seemed like there was a lot going on that day (!) but I also felt that the possibility of having a stoma was the least of my worries. The location of my tumour - which was very near my rectum - meant that there was a chance I might lose the use of my bum forever. The possibility of a stoma - in my case an ileostomy - meant that if they could remove the tumour successfully it would help my colon recover from surgery and hopefully save that part of my colon. As you can imagine I jumped at the chance of a stoma! I thought “get it in there’! Haha.
I didn’t really think much of it as my main concern was hoping Dr Bhan could remove my tumour, that’s mainly where my mind was focused… but as the surgery got nearer I did start to wonder how I’d react mentally when I woke up from the surgery and a stoma would be there. I’d have to deal with it and would I be able to cope? I’ll be honest with you, I wasn’t sure if I’d accept it, be freaked out, be overwhelmed… I wasn’t sure what my mind would do but I remember thinking just allow yourself to feel however you want. You’re going through a lot right now and stressing about this isn’t going to make it any easier.
In the run up to the surgery I was told I’d have an appointment with a stoma nurse and she would help me prepare for the stoma (should I need one). At that point the ileostomy was a possibility but not a certainty. Until they preformed the surgery it was unclear what I’d need.
My first appointment with Elaine (20th October 2021)
My first appointment with Elaine (20th October 2021)
I feel like this is where I’ve been extremely lucky, I feel like I won the stoma nurse lottery! Haha! I’m sure there are SO MANY wonderful stoma nurses out there but my gosh… Elaine (my stoma nurse) is INCREDIBLE at what she does. I didn’t realise it at the time but on our first meeting she not only prepared me physically (by marking up where the stoma would be) but also mentally. She really took her time explaining what a stoma was, and over the hour or so that she sat with me, she gradually told me more and more about what to expect, what it would look like and how things would be in hospital. I think this was key… I can vouch for her skills too because when I woke up from my surgery everything was exactly how she explained.
I made sure I did a diary in hospital so when the time is right I’ll share photos of everything that happened and how I felt… but I don’t want to bore you with all that now! I more just wanted to say. I think stomas are SO COOL. I think they’re a marvel of medicine and I can’t believe you can have a part of your digestive system on the outside of your body and it works?! It’s amazing what doctors and nurses can do.
I’m a proud member of the ostomate community. I know people of all different ages and background have stomas for all sorts of reasons… but one thing I do know is that if you have one you’re made of tough stuff. You’ve been through a very challenging time and I see your stoma as a sign of your strength. To me they’re medals of honour.
My tummy post surgery has scars, holes, imperfections and my little Audrey and I’ve never loved my tummy more. I’m in awe of her and I thank her every day that she’s here. As far as I know she’s temporary. Once my chemotherapy is finished I think she might be reversed. This might be part of the reason why I love her so much, this might be why I’m so grateful to have her but it’s also going to be so hard to let her go. Kate mentioned to me the other day that she might not be here this time next year and I nearly bust out crying. It’s so strange how much I adore her. She’s like my new little best friend. I love her. I think she’s brave too. Imagine being pretty much cut in half and poked out of someone’s stomach and told to perform - poor little love! My intestine must have been like what the actual F is going on?!
Don’t get me wrong, I have my ups and downs, chemotherapy has made Audrey very unpredictable. She looks wildly different day to day. Sometimes she’s big, sometimes she’s fat, sometimes she’s droopy and sometimes she’s purple!… Quite often she does a great impression of being a leaky tap. There was a recent night when she exploded on me. I woke up and managed to run to the bathroom but I couldn’t put a new bag on her because she wouldn’t stop erupting. She was like a burst water main. I just stood in the bathroom, overwhelmed not knowing whether to laugh or cry. I waited for a break in play and then got a bag on her head as soon as I could. I had to wash all my bedding and PJs at midnight. I even managed to do it all myself and not wake Kate. (We sleep in separate beds at the moment because I feel like she’s been through enough without me & Audrey turning her bedroom into a water park! Haha) . I eventually managed to fall back asleep and Audrey was as good as gold for the rest of the night. Thank you Audrey! It’s like having a very naughty child sometimes… but I’d be lost without her.
Sending you love if you’re reading this and you’re worried about getting a stoma or if you have one and maybe your experience isn’t as positive. Be kind you yourself. You’ve already been through so much. I totally respect anyone who wants to keep their stoma private too, it’s your choice and I wholly believe in that. But while I am part of this incredible community I will do my best to raise awareness and show Audrey off whenever I can. I’m not ashamed of my stoma, I’m ashamed I didn’t know what one was until recently. I want to do my best to help change that.
