During the week I had a visit from my friend Sam, she handed me a little gift bag with two little rag dolls in for my girls. Absolutely gorgeous little dolls with one fabulous feature: they both have little stoma bags. Just like me. I couldn’t stop smiling.
I was devastated when we discovered that I really had developed a fistula and we were going to have to pause treatment while I underwent colostomy surgery.
It was a massive change to my body and it definitely wasn’t one I’d seen coming. From the moment I awoke after the surgery, I was aware I was going to have to face this thing one way or another because I wasn’t staying in the hospital any longer than medically necessary.
My surgery was on Thursday, by Saturday I was able to change my own bag, on Monday I came home.
For a long while, I made sure my bag was concealed whenever the girls were around because I really didn’t know how to explain to my eldest what it was really. I wasn’t sure I could find the right words for a four-year-old.
Then one day, I forgot I was “hiding” it.
“Mummy, what’s that?” chirped up a little voice. I could feel that little bubble of panic rise up my throat as I tried to work out what I was going to say.
“That’s where mummy poo’s now” I replied, the next few moments that passed did so in slow motion, would that be enough information? Is she going to ask how? What do I say?
“Ok! Can I play play-doh tomorrow?” She replied in typical at the time 3-year-old fashion.
This little doll has really opened up my ability to chat to my daughter openly about stoma’s and what they are and how they work in a big way because now we can talk about the doll, it creates a neutral ground for us to chat openly.
She hadn’t really asked anything else since but was really excited to get her little dolly with a stoma “like mummy”, she loves looking after her and asking me if I think her bag is ok.
This little doll and her existence around the house has created an ease for us that didn’t exist before and so when the REALLY big thing happened – my daughter walked in on me changing my Stoma bag, I actually felt a lot more prepared and ready to deal with whatever was coming in her seeing me change my bag.
You see, a stoma is literally a piece of your large bowel, taken out and stitched to the outside of your skin allowing you to poo. Bowels can look quite red and therefore sore even though they aren’t – there are no nerve endings in your bowels you see. So, there it was, having just taken my bag off, my red stoma. For the first time, she was seeing my stoma ( and smelling my stoma and she likes to remind me of that – little minx) part of my large bowel poking out of my stomach. She asked me some really good questions like “Do you have to lean over the toilet when you poo?” and “Does it go to your bladder?” both of these questions prompting further discussion about what happens and what goes where and lots of body education about organs and how they work. She’s been fascinated.
Next step, however, is to teach her that although we can talk about mummy’s stoma at home we don’t just tell the whole world (I know, I’m sensing the irony here – but bear with me) about it as we did to our little friend in the car “my mummy’s got a red thing on her tummy that she poo’s out of!” And that as and when she’d like to talk about it or ask a question she is welcome to with mummy, daddy or her grandparents, but that it’s probably best to keep it private with friends.
I am talking openly about my stoma because I feel like it’s important to break stigma’s and to break down those barriers about things that are different, especially at the age of 30. These kinds of surgeries, they change lives. Granted a lot of people having them at my age are people having them to deal with chrones/colitis etc and to them are a real treatment and answer to a long-term medical issue that had otherwise been destroying their life.
Mine differs a little, it is life-saving in that had I not had the surgery I couldn’t have continued with chemo, but that it was forced upon me in a very sharp way, it was quick. The fistula had formed and that was it, it was time to act. There was no longer working your way up to it, getting used to the idea. Two weeks after being referred to my colostomy surgeon he was cutting in to do his job. Suddenly there I was learning how to dress again, how to cope with this thing sticking out of my tummy etc
This is a bit of a long more mixed up and diverse post about living with a stoma as a parent than I had initially planned out. But, the second those little dolly’s arrived they made such a difference to my eldest in the way we communicated about it all, and it was a very welcome change. If you know someone who might benefit from these dolly’s – be it a child with a stoma, or a parent struggling to handle the change with their children then you can find them here: