It’s been a while, I took a little break from writing as I ended up with some nasty virus.
First things first. I may well have a few new readers this week, I’ll explain later, but I just wanted to introduce myself and do a brief recap.
Hi, I’m Suzanne. I live in Essex, England.
I’m 49, very soon to be 50. I have 1 husband, 2 sons, and a grandson.
The reason I started writing my blog is that I wanted to share my experience with others. In the hope that people with a stoma could see what is possible, and people without stomas could understand what they are missing out on!
Hahahahaha
I’m joking, but I wanted to show what having a stoma (in my case a colostomy) was actually like.
I think, and I put myself in this bracket pre surgery, people feel stomas are a very negative thing. I know I was filled with anxiety, dread and trauma before my surgery.
The morning I was wheeled down to the operating theatre I was crying my eyes out. Believing that, even if I survived the surgery, and the cancer itself, I’d never leave my house again. I’d stay indoors, and stay in touch with friends and the outside world in general via social media and email.
I was a bit poorly in the operation, but when I did finally get on the ward, and looked down at my newly formed, permanent stoma, (I had a clear bag on) I felt a rush of emotion, of positivity, peace, and calm. I literally felt a wave of relief.
“Is that it? Oh God, that’s fine, I can do this!!”
And I’ve felt that way ever since.
I suppose I’m very lucky, my stoma was always going to be permanent, so I think my brain reset to the new normal straight away. It doesn’t happen as quickly for some, so I do feel incredibly fortunate that my brain just felt safe and comfortable immediately.
Also, the operation is tough, so surviving it does feel like an instant win.
Surviving cancer, again, felt incredible.
Plus I had the very unfortunate experience, that my son (who was 13 at the time) had been diagnosed with stage 3, nasopharyngeal cancer, six months before my stage 3 colorectal cancer diagnosis. Which meant nothing compared to how traumatic that was. He survived too. He’s alive and well and a father of one, with a wonderful fiancé.
Two stage 3 cancer diagnosis in the space of 6 months was devastating. It devastated us, it devastated our family and friends. It was incredibly painful to go through.
So coming out the other side all intact (well, minor body modifications have been made, but as a family we are intact). Nothing really compares to your child being ill or worse.
We are here. We are not prepared to waste a minute.
And that’s how I feel about my stoma. I’m not going to see something that’s given me a second chance at life, as a negative.
I can’t, it doesn’t compute. I’m alive, I get to live this incredible life. I have amazing friends, the most wonderful family, a collection of some of the most desirable shoes and bags in the world, and I get to travel…a lot. :)
What’s not to love?
Since October 2021, when the pandemic started to fade in people’s minds, I have been on 28 flights (which we carbon offset).
Ask someone without a bag, how many flights/holidays they’ve had in the same time frame.
I’m not saying this to be boastful. I’m saying it to compare and contrast perception versus reality.
The point I’m making, in possibly a clunky and somewhat ostentatious way is; does that sound like the life of someone living “the worst case scenario”, “the end of the road”, “the I’d rather be dead than live with a bag” because that is the sort of negative crap people with stomas often hear.
But my life experience isn’t anything close to those things.
My life is bigger, bolder and brighter than it ever was during my long and painful misdiagnosed years.
I was told by many GPs that I was suffering from IBS and piles. I took them at their word.
Needless to say, I no longer do that. I get every single thing checked and double checked.
I didn’t fly anywhere during the 8 worst misdiagnosed years. I was too fearful of shitting myself in public in general, let alone on a plane.
I’m very lucky that I had a very slow growing, older person cancer in a 36 year old body. That’s not usually the case. I’m only still here, because it was an unusual cancer for a younger person.
I know I’m incredibly lucky. I know it, I feel it, I live it.
So you see, even though a lot of people see stomas as a negative, I can’t. I appreciate not everyone who has a stoma has as easy a life as I do. Some people have a horrendous time, and I feel so sad for them. I get it, I really do, no one grows up hoping one day to poo in a bag. It’s an absolute mind ****. To some it feels like a life sentence, I absolutely understand that.
I know I’m very lucky. Really lucky.
I get to play in this big wide world because of it. And whenever I get the opportunity I will take it with both hands.
Definitely not in spite or despite it. But solely because of it.
I am aware that I am very lucky because I have a very well behaved, low output colostomy. I appreciate this isn’t the case for many.
But I can only see that as another reason to be grateful, and live a very happy life with it.
I love my life. I love my stoma life. I have the best time. And therefore it made sense to me to show the positive side of stoma owning. Of how something I thought was going to be awful, turned out to be awesome.
I share tips of the clothes I find work well for me.
I’m not sure everyone would agree, but I feel I dress well. Yes, even with a bag of poo glued to my abdomen.
I share tips on travelling with a stoma.
I shed light on something that can be ridiculed and shunned. Because I think it’s a pretty darn good life.
*********
Right, so where did we leave off? Oh yes. I wrote about my fantastic colonoscopy experience. How I found the bowel prep easier, with a few changes, and that my results were very good and no need to repeat for 5 years.
Well, I got home from the hospital. I was a bit woozy from the drugs, but I had a rest, and then Chris suggested we go to London for the evening, for dinner…and a present.
…hell yeah!!
So I put my makeup on and we headed up there.
He’s an angel. And he also reads my blogs, so he knows that I say, for me a colonoscopy was anchored to the trauma of the bowel cancer diagnosis.
So he decided to re-route that anchor into something more positive. And nothing says positivity like a present :)
It was the most perfect end to a very stressful few days. The build up to tests is very difficult. Probably as stressful as the actual results.
The fear is indescribably, excruciatingly stressful. It never changes, it never gets any easier.
It’s nice to have a happy memory fixed to that positive outcome. Gift bought, we headed to the dining hall for dinner.
One of the many very handy things about having a stoma is, even straight after a colonoscopy you can get out and about, eat and drink merrily, all in the safety and comfort of knowing that if you get a bit of a kick back from your upset bowels, it’s bagged and not a problem.
This was me Wednesday night…
And this was me by Thursday afternoon…
Oh my Lordy, I was struck down by a dreadful cold. The worst one in a long time. And while it was awful, all I kept thinking was thank God it didn’t arrive on the Tuesday (bowel prep day) or Wednesday - the colonoscopy itself.
So I spent the next week walking round like the Walking Dead. I stayed home, just in case it was anything other than a common cold. I tested negative for Covid the whole time. But who knows. And besides, no one needed or wanted whatever bug it was.
Then it finally lifted in time for our first holiday of the year to our Spanish house. We’ve owned this little place since 1999. We couldn’t afford to buy it really, but we did it anyway. And I’m so glad we did. It’s finally looking exactly how I want it to. No small thanks to Chris - my sponsor, and Zara Home, H&M Home and Primark Home.
You may wonder if I speak Spanish, and the simple answer is no, not to a degree I could live here. I’m English after all, and we are a rather ill educated society, sprinkle in lazy, and for me personally, dyslexia, and it makes for a perfect combination of linguistic incompetence.
But we have holiday Spanish, and that’s what we do here, we holiday.
I do feel ashamed that I can’t speak much of any other language. I’m not actually that good at English, so it’s no shock.
We use google translate when we need to. And we try our best when that fails.
I did laugh the other day in a shopping centre. I found the Zara clothes store, but I wanted the Zara Home shop.
I went in and asked the shop assistant “donde esta Zara Casa?”
She looked a bit confused, and said “it’s called Zara Home here too”
Hahahaha I gave it a go, and she appreciated the effort. ;)
My little Casa…
What do we do in Spain at our little house? Well, shopping for homewares was a big part of this trip. But we generally just eat, sleep repeat.
We, unusually for us, added in some sightseeing in Murcia too. And we played pétanque with our neighbours, we enjoyed it so much we bought our own set for next time. :)
And it’s been a fabulous break away.
I bring enough clothes for a stay 10 times longer.
Airport outfit from Nobody’s Child.
Dress from Tesco, Shoes (below) from Gina, Bag from Gucci
Dress from Tesco, Shoes from Gucci.
I find belted dresses the perfect choice for wearing with a stoma. I like loose dresses, but sometimes it’s nice to show your silhouette, and belted dresses are perfect for complimenting your figure, without drawing the eye to the bag site.
Dress from Sainsbury’s, Shoes from Gina, Bag from Strathberry. (Jacket below from Primark).
Ice cream, in copious amounts from my favourite ice cream shop in the world. :)
Dress from Nobody’s Child, Shoes from Gina
Part of living well is being able to eat anything I like, when I like. And I make sure that’s exactly what I do.
We had Easter here at the house. I table scaped (obviously)
The weather was amazing, and so therefore it was a bikini Easter. And it was heaven.
I’m covering up mostly, and then using factor 50 sunscreen when I do venture out. I’ve just had those moles cut out so I don’t want to add to my future worries.
But I did go out in the sun for a bit and while I was there I asked my resident photographer to take my photo.
And it was that photo that has brought a new intake of readers to my blog. So hello newbies, and regular-bies.
I posted this photo on my Twitter account and it went down rather well. Unexpectedly so.
So a really weird thing happened;
The Twitter community were incredibly supportive and kind ~ out of over 580 comments, there wasn’t a single mean spirited, spiteful one - only love.
(There were 2 peculiar comments, but I don’t think that’s bad really. I’ll take peculiar over mean spirited any day.
Usually on Twitter, on a good day, I might get 1 or 2 likes, if I’m lucky.
I’m always a bit wary now, remember, I had those 2 nasty ghoulish bitches giving me hate via my Instagram (as they saw me whilst scrolling through hashtags for the Ikos hotel chain back in May last year).
My post on Twitter reached over a quarter of a million people, and I have had over 13.8 thousand (yes, over thirteen thousand eight hundred - 13,800) likes on it, so far…and only truly wonderful, warm, kind comments.
The photo itself has been viewed over 382 thousand times (382,000).
Social media can be a cesspool of toxic negativity.
I found the 2 comments on my Instagram last year incredibly hurtful, they were designed to hurt me, and they succeeded.
So I was a bit daunted to put myself out there on Twitter. But I really believe, that me - a nearly 50 year old, colostomy bagged grandma - can offer comfort and, yes, inspiration, to other people going through similar situations. If I can bikini, anyone can.
Actually, I get a lot of people who don’t have a stoma messaging me to say they’ve taken my lead and bought a bikini and plan to wear it with pride. And rightly so ~ if you want to wear one. (I appreciate not everyone does).
But the bikini is a metaphor for living happily and content, in peace. Happy in the skin I’m in.
You get one life, one body ~ make the absolute most of it. No hesitation, no regrets, we’re a long time dead.
Live a life you love while you can. Tomorrow isn’t promised.
I have lost count of the places all over the world I have been, not in spite or despite my colostomy - but because of it!
I’ve been from LA to Jaipur and everywhere in between.
Have bag, will travel.
Have a body, have a bikini = every body is a bikini body. :)
Like I said. I did get 2 peculiar comments;
This one is weird on two fronts. This man’s bio says he’s an obstetrician in Australia. But he’s confusing a bone disease with a stoma bag? So that’s odd to start with.
But also what the f*** has it got to do with me how Matthew Perry felt about his stoma. I know he had a tough time. And I feel very sorry for him, his experience sounded like hell on earth.
But I personally don’t have a tough time. So it’s like comparing apples and bananas…or a bone disease with a colostomy even.
I’ve no idea what he’s on about. Or what relevance he feels it has to me or anyone else for that matter.
I definitely wouldn’t want a doctor who doesn’t know the difference between a stoma bag and a bone condition though.
And the second sort of negative comment was just a bit rude - calling me a whore…
But actually I took it as a compliment that she thought anyone would be prepared to pay good money to sleep with me!! Winning!!
It’s not something I want to pursue, but nice to know I’ve got options hahaha hahaha.
Update; 14 thousand 100 likes
393 thousand views.
Which means a lot of people have now seen stoma owning with a different perspective. Yay!!!
