I live with a stoma and ileostomy. This means the end of my small intestine (ileum) is drawn out to my skin to form a stoma. I then stick a base plate to my skin and attach a pouch to that. The remains of my digestion- which for you passes into the large intestine for further digestion, empties through the stoma into the pouch. Literally, the facts of life for me.
I’d had ulcerative colitis, hence my long hospital stay and life-threatening, traumatic emergencies.
Finally, to live or die meant emergency surgery and a body changed forever.
For more than forty years I have lived because of this. Lived in gratitude, but lived in isolation, never knowing another person with an ileostomy. It’s what we do, isn’t it? We pick up the pieces and carry on. I have never thought about this or realized how lonely it’s been, until last year when I found my best friend from childhood again, and she too, lives with a stoma and an ileostomy. What are the chances of such a coincidence? And how wonderful that I found her!
We compared notes. What appliances do you use? and do you find that works best? What do you do when you’re in a room, full of people, everything’s quiet then your stoma starts gurgling and spluttering? And clothes! Can you wear something that’s close fitting across your stomach? I always like to have a top that’s loose, do you?
So many questions, and so many more to come. I wish I’d had someone to talk to when I was younger, single and had met a potential lover. When do you raise the fact of a re-arranged digestive system and the additions to one’s tummy? I wonder what other people do? How do you know the moment to call the ambulance when suffering a bowel obstruction?
We have only just begun this conversation. There’s so much I want to ask her about, so many experiences to share that only a fellow ostomate can share.
Here I need to acknowledge my friends, my friends who listen to me day and night, who meet me with compassion, love, tenderness, empathy and endless acceptance and support. I could not ask for more.
Then, just the other day, a friend who needed a catheter and drainage bag for a few days said to me (we were talking about showering) that he now began to understand a little of what I lived with every day. An insight for him and validation I hadn’t had before for me. Sometimes you don’t realize you lack something until you get it.
I was having a cup of tea with another dear friend when out of the blue she asked me about the details of stomas and pouches and all. Like, how does it stay on? Why doesn’t your skin become infected? What do you use? Show me. Show me the pouch. Show me where it is. Can I touch it? What do you need to do every day? What’s it like? Do you ever forget it’s there?
She listened. She listened with her full attention, no judgement, no revulsion, just full attention. Finally, she sat back and looked at me, then spoke.
“Kathryn, it’s a miracle.”
Other people have mixed responses, but there was nothing here but clear insight: “It’s a miracle.”
And it is. I live with a miracle.
I offer this to others who live with a stoma: colostomy, ileostomy or urostomy in the hope that it may offer some validation of your daily existence. And in the hope that this post may begin a supportive community. Talk to me!