I’ve never been a fan of stereotypes. The stereotypical woman has a wardrobe full of handbags. Not me. No siree. Mine’s full of stoma bags. Not quite as fashionable but arguably far more useful. Life with a stoma alongside multiple chronic illnesses has been a rocky ride, but this Gucci bag stuck to my tummy has taught me a few priceless lessons along the way.
Sometimes There Are No Answers
My insides like to dance to music I can’t hear. It’s very inconvenient. Small bowel twists have landed me in A&E on numerous occasions and they are intensely painful. They’re also potentially very dangerous. I had to have emergency surgery last year otherwise I would have died. All because my guts like to Twist & Jive. I’d love to be able to prevent it from happening again, but there’s no rhyme or reason as to why they twist other than that I’ve had numerous abdominal surgeries and I’ve no large bowel in place to keep all the bits in uniform shape. I can’t predict it nor can I prevent it. It’s like a ticking time bomb. As someone who likes to know why things happen and to be able to take action, this is a tough lesson to learn. Sometimes things just ‘are’. Sometimes there is no satisfactory reason or anything you can do about it.
I Can Live Without
I can live without my small bowel. I may not be happy about it, but I can also live without meat. I do actually eat chicken, so okay, I do still eat meat. Years ago I’d love a good home made cottage pie, a juicy beef burger and meaty hot dog. I loved meat, but my stoma doesn’t. Tender chicken gets a green light but not other meat, which means I’ve got a pretty meat-prejudiced stoma. Ditto bananas, which don’t digest well. When it comes to fruit, this is usually a bedroom delight. Hiding from sight, I’ll chew lush green grapes or bite into a crunchy apple, chewing but having to spit out the skins. Classy! I’ve probably lost quite a lot because of illness, from the job I loved to relationships and my social life. But I can live without things I took for granted before, it’s just a case of changing my perspective and finding other options.
The Tum Is Not The Enemy
When I was much younger, my tummy wasn’t my friend. Each roll and wobble, the cellulite on my thighs and the stretch marks on my hips got my attention for all the wrong reasons. By 18, I was back to enjoying the skin I was in and then it got taken away. When I got ill at 19 with bowel problems, all that mattered was that I wanted my body to function properly. When I got a stoma at 27, the belly flab was something I would have paid a million bucks to get back if only I would be healthy again. Illness has a way of putting things into perspective. It’s been a process of loving my body regardless, appreciating what it does, acknowledging the parts - even if they’re few and far between - that do work, and being grateful that modern advances make a stoma like this possible.
Never Say “It Can’t Get Worse”
Four words that I will always regret. I paid for private surgery a few years ago that was designed to hopefully help, only for it to leave me needing a stoma and with a myriad of health problems I never had before. My health went down the toilet after that surgery, so to speak. I regretted ever thinking the constipation I had was bad or that things couldn’t get worse. I still had a life back then, I managed, I had a relationship and a social life and work. It’s been taken away from me now in ways I never could have imagined. Things could always be worse.
To Be Assertive
’Invisible illnesses’ are tough to deal with when nobody can ‘see’ the pain you’re in or the symptoms you’re experiencing. It might be society and strangers, family, friends or medical professionals that judge or simply don’t ‘get’ what you’re going through.
I spent 7 years back and forth to doctors and specialists about my stoma issues only to be repeatedly fobbed off. Each specialist and GP appointment has made me a little more angry and a lot more exhausted. Even now, each emergency department visit since having my stoma has been a test of perseverance and patience. I had to go from timid and reserved when I was younger, to assertive gradually over the years to make people listen to me. I’ve had to fight every step of the way. It’s made me more confident in standing up for myself in ways I probably wouldn’t have otherwise.
Caz in a black long-sleeve shirt with a red and white ‘Hello Kitty’ stoma bag.
Stomas Are Awesome, Not Shameful
There’s a lot of stigma with stomas, not to mention lack of understanding and awareness. The stereotypical ideas involve colostomies and the elderly, viewing stomas as though they’re disgusting and something to be ashamed of. The reality couldn’t be more the opposite. When it comes to shame and embarrassment, what stomas do in keeping people alive and giving that person another shot at life is pretty damn awesome. Okay, so it may not seem ‘normal’ and you may not be like other people, but life would be boring if we were all the same. Plus, it’s not like many folks can say that they see and say hello to their small bowel every day!
It’s A Unique Journey
Every person experiences having a stoma in their own way. Stoma life looks different for everyone. The reasons for having one, the way we cope, our mental health response, the support systems and financial resources we may or may not have, the various other conditions we may have to cope with alongside having a stoma. Some people have no or minimal problems with their stoma while others are plagued with issues. Some people see their stoma as life-saving while for others it’s a reminder of trauma. The whole journey is unique from one person to the next. There can be no comparison and there should be no judgement for how we manage stoma life.
You’re Not Alone Online
When I had my stoma, I didn’t know a single person with one. I was the first person in my family to really get sick and the first to lose my job. I felt lost at sea, so guilty and ashamed. With my stoma, much like with other conditions like my fibromyalgia, chronic fatigue, chronic migraines and so on, I went online to connect. And wow, is there an awesome community out there or what!
This is part of why I started InvisiblyMe, in order to share my experiences, provide a little advice and support, and to help show others that they’re not as alone as they may feel. There’s a whole tribe of people out there who will have some understanding of what you’re going through. For the most part, you should find a warm, welcoming, inspiring and kick-ass community online. Facebook groups, advice from companies and charities, and of course blogs are havens for those with stomas and chronic conditions. You’re not alone. You’re part of a tribe now, where someone will always have your back.
For more information on Caz and InvisiblyMe, visit: InvisiblyMe website - www.InvisiblyMe.com, Facebook, Twitter and Instagram.
*Audio Narration Coming Soon