Living With a Stoma: the First Few Weeks
So, surgery over and you're back home. I had a great feeling of relief that surgery was done and dusted and loved being back home in comfortable, familiar surroundings. I arrived home to a spanking clean bedroom, freshly laundered bedding and a lit scented candle, giving off a beautiful, calming aroma. I went to lay on my bed, and that's when it hit me. The fear of would I be able to deal with this? Would I be ok changing my bag alone?
So far there had always been someone there to provide a helping hand and guidance. Now I was all alone. I had been sent home with a few basic supplies, which were put inside a blue sandwich looking plastic box. The box contained around 8 pouches, a pack of dry wipes, a couple of night bags and some adhesive remover spray. Also stuck inside the lid of the box was the name and number of my local stoma nurse. I was told that she would be out to visit me in a couple of days time and would arrange future deliveries of supplies that I would need for the next couple of weeks. I was also issued with a plastic night stand.
Leaks during the first few weeks
Along with all the above I was given a diet sheet, containing information as to what I was recommended to eat over the next few weeks. Also a sheet giving step-by-step instructions on how to change my pouch and a sheet containing some basic exercises and a box of painkillers.
I'm not going to lie, the first couple of weeks were difficult. I suffered with numerous leaks and also bowel problems. This is all very common for new ostomates.
Your body is dealing with an awful lot; you've just had some major surgery, and it naturally takes time to heal. I found that regularly walking around and a daily dose of senna did help with the bowel issues. The worst thing you can do is not to move around. Gentle walking around, which you can gradually increase as you feel able, really helps to stimulate the bowel into action.
With regards to the leak issues, this is extremely common over the first few weeks, as what you start using in the Hospital isn't necessarily what will suit best in the long run.
Getting acquainted with your new stoma
Your body is changing shape as the swelling starts to go down. Also, your new little stoma is also finding it's new shape and size. Some stomas stick out and some are what is known as convex and like to hide a little. Some dip into one side. Everyone is a little different. However there is a bag and various additional items that can be used for every shape and size of stoma.
That's what your stoma nurse is there for. My stoma nurse was a little gem and really helped to support me along my cystectomy journey. I tried numerous different bags and a stoma paste. Eventually everything will settle down. With regards to my first bag change alone, it was nowhere near as frightening as I thought it might me. Day by day as you get stronger and used to your new best friend (your stoma) things just kind of become normal again. Albeit a new normal, after all your stoma saved your life. So learn to love it!
Have your views towards bladder removal changed since you were diagnosed?