At the age of 15 I was diagnosed with Crohn’s disease which is an inflammatory bowel disease. I had 15 years living with Crohn's trialing nearly all medications, injections and infusions out there to try and gain some control over my very active disease (it was hard!) I would bounce back and forth into hospital and always end up on steroids and a new drug. I would have 20+ toilet trips a day, lose lots of blood, feel sick, fatigued, skin problems, eye problems, joint problems .. the list is endless!
After having several long stays in hospital in 2018/2019 and not responding to medication but feeling more unwell by the day I decided enough was enough. I needed to take the medical advice which was to have surgery and stop being so stubborn! So in August 2019 I had a subtotal colectomy and ileostomy formation. I was hesitant to have the surgery as to how it would impact on my life, being a mother and my job! In actual fact it’s made everything a whole load easier.
After surgery I went back to work after around 4 months, straight back to ITU but with the right tools in place to make it safe. I was referred to CUI from my stoma nurses who knew the nature of my job on Intensive Care. It’s physically demanding, with long 12.5 hour shifts both days and nights and I was very aware of looking after my stoma and not developing a hernia. I was seen at home by a friendly CUI rep who fitted me and talked to me about their hernia support. I opted for the waist band in the colour black and I love them! I wear one on every shift at work and if I’m doing any physical exercise. They sit nicely under my clothes, make me feel secure and so far I’ve been very lucky not developed any hernias.
Having a stoma can be daunting but with the right mindset and education it can change your quality of life all together. With companies like CUI helping people with stomas to live life to the full it’s really invaluable. Do your research and use all the resources offered to you, that’s what I have done and I would say I live a very “normal” life!
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