'You need surgery!' The moment I was told, how it felt and what followed! Ileostomy Stoma

So, there I am in Brighton Hospital, resting alone on a sunny day in my own little side room and in walks my ‘consultant of the day’, a surgeon and several people whom I assume to be trainee doctors!


They look at me, sitting up in my bed, smiling away as I do… and say, “its just not letting up for you is it, we think its time to remove the bad bits and get you better?” gulp! Bad bits… well yes on further discussion, through the flurry of tears that ensued, meant the complete colon, right up to the ileum… and with that, having a stoma created so I'd poop in a bag!


I freaked out, the hot flush and panic set in, dread, fear, anger, the shakes and I was speechless, possibly for the first time in my life. How on earth could I live with a poop bag hanging off me! I was young, fit and an ex Zumba teacher… not an old, incontinent, smelly, dirty, disabled piece of baggage! (that’s what I was going through my mind! Not judging any one or anything but a knee jerk thought). I cried and cried… I managed to phone Stuart and say “you better come up now… they are talking about surgery” …


I had no idea what a stoma was let alone how it worked or felt, if it was inside me or out, if it was permanent or not! I didn’t sleep that night, Stuart comforted me, I felt I was mourning the loss I was about to face, life as I knew it! The point of no return, at no point did I feel it was a good thing, I had dreaded it the last 10 years and never investigated the detail for fear of knowing.


That evening the Stoma Nurse visited me to explain a bit further, she explained the types of bag available, gave me a few samples to get used to the feeling of, and went over how the supplies are delivered etc after via prescription. She covered very vaguely that I had to have a limited diet and must get used to managing emptying and changing my own bag before I left hospital.


I was petrified! I spent the next few hours googling as much as I could, it offered some comfort seeing what it all looked like although it also added to my personal fears of how I'd feel with this ‘thing’ hanging off me for ever more. I also had the task of phoning my kids and close family to explain what was going on, not that I really knew that myself. Stuart called some and I spoke to my boys and their dad to help them understand. They were amazing and just wanted their mum home and well again! The support from friends and family was priceless, they reassured me I’d still be me! That it was saving my life and that they would all be there to help me adjust.


The next morning first thing, with Stuart there to see me off, I went down to surgery! It was a great success and I was in recovery after approx. 5 hours… with my new plumbing! I was an emotional wreck and just needed the love and support around me to cope. It was with time that I realised how much I had been through and as you’ll see from my blog ‘6 Months post Subtotal Colectomy with an Ileostomy Stoma’ that not only did I eventually get my life back, I lived it to the fullest!


One thing I haven’t mentioned yet because it’s not related to this disease is the fact that I had a severe allergic reaction to the Morphine I was given during, and after surgery, in recovery over-night, this sadly caused me to have a very traumatic time and experience I will share with time, It has left me with PTSD and I am still coming to terms with that.


In hindsight I learned to love my stoma aka Fred! It wasn’t dirty, ugly, disabling, smelly or any of the other things I thought before I knew first hand! It enabled me to have an amazing life for the 18 months that I had it. I will cover what it really is and what it entails daily in a separate blog but did want to say that I wore Fred proud! She was amazing and enriched my life, she gave me perspective of what it’s all about.


Thank you for reading, please do leave a comment to let me know your thoughts or anything you feel will help others, obviously this is a very personal post and each person’s reaction to similar situations is different. I do not mean to offend with my initial thoughts but felt it was important to share the truth about how it was at that time.

Please keep fighting and keep smiling! (comment under the preview window below)

Andrea x


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