Belated Time to Talk

Belated Time to Talk

On Thursday it was “Time to Talk” day and for the last few years I have written a post on it but this time it was a bit more difficult because I want to talk about the worries I have behind the possibility about having another surgery. You would think that because I live with an ostomy and have done for the last 4 years that the idea of more surgery wouldn’t phase me but sadly it does.


I saw my colorectal surgeon last year and we discussed the fact that my stoma output keeps pancaking which causes leaks; this is happening way too frequently and is down to the slow peristalsis of my bowel due to the hypermobile Ehlers Danlos Syndrome. Along with the fact my ileostomy is retracted it is just double trouble and makes my life just a bit more challenging than I would like it to be.

When it was first mentioned I panicked because well I prefer the look of my button style stoma rather than the usual protruding stoma and in all honesty I think the look is why I adjusted as quickly as I did. Now obviously I needed my stoma and haven’t looked back for one second. I have so many running commitments this year coming up that the sheer idea of having more surgery is terrifying! As you may have read in the post Running for Phoenix you will know that I started running to show support for my best friend. Well from there I am now doing Northallerton 10K and The Great North Run so not having surgery is pretty damn important so I can be fit enough to run.

On the flip side I have the worry of what if my bag leaks whilst I’m running? What on earth would I do in a situation like that? I’m not sure I could even just muster up the mental strength to finish the race. How am I going to stay fit enough if I’m not sleeping properly from sorting out leaks 2/3 times a week. I am yet to find an ostomy product or a bowel medication that will help thin out my output to a consistency I can cope with because my output although is thick is incredibly high in frequency. I don’t know anyone else in the same boat as me to talk to and just understand.

I’m finding running so incredibly difficult right now and I am constantly in pain from my joints and my brain is telling me I can’t run, I’m not a runner anymore and I am going to let everyone down. It doesn’t help that I am the worst person for comparing myself to others; I do it in so many ways and at the moment and possibly foreseeable future I don’t feel like any of my worries are worth anything as someone I love has had the unimaginable happen everything I am struggling with with my depression just pales in comparison.

Rachel (Rocking2Stomas) often says I need to remember this is MY truth and I have to hold myself accountable for my mental health and not spiral into even more depths of despair that I am feeling. In all honesty I am getting panicky just writing this so here is where I will stop.

How did you cope with the idea of more surgery? How do you cope with low mental health?

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