By: Sara-Jane Heslop
In my twenties, I lived in Argentina and found myself in flip-flops or barefoot a lot. I used to feel really self-conscious as I had an ingrown toenail permanently removed from my big toe and this attracted a lot of unsolicited attention. My husband at the time came up with a great idea and said that any time someone asked me, generally in disgusted tones, “what happened to your toe?” I should respond: “actually I’m allergic to kiwis!” You’d be amazed how many people’s curiosity was satisfied by our private joke. I also used to add that I didn’t eat kiwi any more, hence the remaining 9 toenails!Little did I know that my kiwi toe was training me for an even bigger physical difference that I was to gain in my forties.
I was diagnosed with bowel paralysis and was given up to 40 laxatives a day in order to perform a satisfactory evacuation daily, which was not without incident or accident, as I’m sure you can imagine without being too graphic.After some 20 failed surgical interventions, my consultant called me in one day and said that I had to choose between an ileostomy or a colostomy. I tentatively asked the consultant his advice; this was akin to asking me to explain the offside rule and was advised that most ladies prefer an ileostomy, as the output was liquid and less smelly. I took the recommendation and a date was set for a loop ileostomy surgery, this is when the stoma is brought out in two parts so that the bowel could be reversed.
I went home a mixed bag of emotions, underprepared and bloody petrified!I had heard that some people named their stomas, so I decided to name mine “Winnie the Poo.” Sadly, Winnie quickly died and I was rushed back into surgery less than 24 hours after the first in order to re-fashion my stoma. Days after my surgery, I remember hugging my 7 year old step-daughter and Winnie, then at her head height, did not miss a beat in breaking wind in her face. My own face, then a keen shade of puce, apologized by saying: “my goodness Ruby I asked for a well mannered one, they mustn’t have had any left!” Children are marvellous and she accepted immediately that it was Winnie the stomas’ fault, not mine.Not content with now having something in common with my dog, we both use a bag to collect our poo, Winnie decided to prolapse and yet again, I suffered further surgery and my loop ileostomy was made into an end ileostomy, or permanent.
On our return home, my ileostomy began to produce waste faster than normal. I was getting at most five minutes from food ingestion to bag and this didn’t slow down through the night. I ended up exhausted and feeling like I had undergone all of this surgery for nothing!Back again to my consultant, I was told that I was one in 1500 to have a high output stoma, which could be resolved by converting it into a colostomy. I agreed, of course, and on August 16th of this year, I underwent open surgery to do just that. I also underwent a parastomal hernia repair at the same time, a major surgery that saw me in the HDU for some days after the operation. Colin (ostomy) was born and I prepared myself for an easy life!
To aid in my recovery, my fiancé organised a week trip to Turkey and then came a whole load of new issues. Worried I would be stared at, I bought my first one-piece swimsuit to take with me but resented it from the moment I bought it; I had always had a good figure and worn pretty bikinis. Then I thought why should I hide? And decided that no one would know me out there and that I needed to get over my inhibitions. Not two days into my holiday, a woman came running up to me and enveloped me in a giant bear hug. She also had a colostomy, what are the odds? For 11 years, she had never met anyone else with a stoma, other than her mother, and after talking to me, she said that I had given her a whole new outlook on her condition. We became firm friends and rocked our stomas every day on the beach, safety in numbers!
One such day, I was sunbathing when a man attempted to offer me a high-speed jet ski to hire. I pointed to my bag as way of an explanation and declined. The man smiled and said “ah sugar!” to which I replied “no my friend, shit!” It transpired he thought that I was a diabetic, but the humour of the moment was not lost on me. Unfortunately, the mesh insert that was used to repair my hernia is directly on top of my stoma output and I am now living in chronic pain. My life as a “baggie” has not been plain sailing, but it has made me brave. Living with chronic pain and when dressed “an invisible illness” is not without judgment, funny looks and stares, but I am fortunate to have the support of my fiancé and my family, who now all accept my favourite saying is “shit happens” and believe me, it does and not always in the most opportune ways!
Comments
You are an inspiration. I am so glad I read your post. Thank you!
Sara-Jane, Thank you for sharing your journey openly. I am grateful for you telling your story and I am able to identify with invisible/visible disabilities.Keep it up.