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Before I got my stoma I had been ill for many years with UC. I had a particularly bad flare and that landed me in hospital. After 10 days the decision was made that the only option left to me was a stoma. I had “The Talk” with the stoma nurse about how it would be and, to be honest, it sounded a breeze compared with what was happening and had been happening for years.
I had my ileostomy formed on the 28th February 2019 and recovered well. I was allowed home once I had changed my bag a few times on my own… I thought this will be a breeze!
I was opened up, so I had a large wound that needed to be cared for as well as the new ileostomy. The nursing team were fantastic! Home visits became the norm and my poor swollen belly had never received so much attention.
However, as the wound healed and the swelling receded, my mental health deteriorated.
Leaks and sleepless nights.
Firstly, I realised (I don’t know why I hadn’t before!), that the more I ate, the more output I had, and the more I had to empty the bag. Oh, and not forgetting… THAT SMELL! It seemed to permeate the whole house.
Secondly, I couldn’t sleep very well. I was sleeping in a semi-upright position propped up by pillows galore. I couldn’t get comfy and the moment I tried to shift to my side, the bag would leak. In those early months I had to throw away a mattress and 2 duvets along with countless sheets and duvet covers.
Every night was horrific as my stoma seemed to be most active from 11pm to 7am. I was a regular 3am showerer because of the leaks. Honestly, the washing machine was never used so much - in fact it was used so frequently, it broke and I had to buy another.
And to top it off, my husband started to sleep in the spare room because he was also being covered in output and his sleep was being disturbed by the 3am showering and changing of the bed clothes - and quite frankly, who can blame him!