Even after explaining to people exactly what a stoma is and how the surgery to remove my tumour unfolded, and even after drawing diagrams on napkins and myself, I have the feeling that people still don't understand exactly what went on.
When living with a loop ileostomy, as I did, nothing is turned off or stopped - things are just by-passed. The diagram to the right is one that best shows the surgical outcome. As you can see, everything is still connected and working. This cut section of small intestine is pulled up through my abdomen and sutured in place. As intestinal contents, or poo, move through my small intestine they reach the hole and are collected by a bag stuck on my belly and over the hole.
This meant that waste could not continue on to the colon, which needed a break after the operation to remove my greedy tumour.
The loop ileostomy was able to be reversed after my leak healed, chemotherapy finished, and the blood clots in my lungs dissolved. And this happened two months ago.
Using your bot bot again after 9 months of not using it is a very interesting experience, for several reasons:
- My colon is a lot shorter than it was the last time I needed it
- I no longer have a sigmoid or rectum, meaning I've lost a couple sets of traffic lights telling poo when to stop or slow down
- I now have a new pouch near my anus called a J pouch - that acts like a reservoir, or holding tank
- I had extensive radiation and chemotherapy to the area, meaning the tissues will be affected for years
- The muscles around my colon got lazy
In day to day terms, this means:- I go to the toilet several times a day
- Often there is disagreement between me and my colon about when it should empty (the colon tends to win)
- 'Gas' is my new friend
- I do pelvic floor and clenching exercises several times a day to build up strength
- I'm extremely sensitive to chili, brussel sprouts and sugar
- I often need to wear extra protection
But as I approach 1 year since my tumour was removed, I'm not unhappy with this list. As someone in an online support group once told me 'at least you're still here to feel these things'.
