Well, the whole Matt Perry hating his stoma story intensified.
A few more publications decided, yet again, to focus mainly on the negative aspects of his particular stoma. I’m not sure if people actually crave gore and gruesomeness but it’s definitely what the press think people want.
In fairness to him it sounds like he went through hell;
In a nine month period of having a stoma he had 50 or 60 bag leaks, woke to find his entire face and body covered in faeces, and felt borderline suicidal - and the first thing he did when he was well enough to be left on his own was ring his dealer for a drug delivery.
I want to reassure you, if you are facing stoma surgery, that this is the most extreme experience of stoma life I’ve ever heard of.
Yes, leaks can occur, yes they can happen at night too. But I’ve never heard anyone say their faeces reached their faces.
His lived experience of stoma-ing is the extreme. A most unfortunate extreme nonetheless.
He did acknowledge that he was grateful to the stomas that he survived.
Of course no news outlets picked up on the positives of the bag facilitating his survival. Good news doesn’t sell newspapers unfortunately.
He had a really tough time, but even so, he is grateful to still be here.
I have got some questions about his surgical/care team. I find his story very disturbing.
If you are struggling with your stoma, please don’t suffer in silence. Your stoma nurses are there to help. They can come up with solutions to problems as they arise. Plus there is a whole community of stoma users that would be only too happy to offer guidance and support.
I’m very lucky, I have a colostomy, a very low down colostomy at that, because I had colorectal cancer, which means I didn’t lose large amounts of colon.
APR surgery is the removal of anus, rectum and some colon - bowel - large intestine - whatever you prefer to call it, it’s all the same thing.
So I’m lucky on two fronts. Number 1, my anus and rectum were removed in the same surgery as tumour and those incisions were sewn up. Which means I’ve never had any problems with mucus leakage, which can be the bane of some stoma patient’s lives.
And Number 2 (pun definitely intended) my output is solid, in the same way as someone with a bum hole is.
Which means it’s easier to manage, and extremely user friendly. Unless I’ve taken the bowel prep medication or I have a tummy bug, my output won’t escape the bag in general.
I have had issues at times with pancaking, where the poo seeps under the adhesive patch, and I have had some problems with the air filter failing and smell leaking out, but that’s it.
And these issues are very rare. Incredibly embarrassing if they do happen, but all I do then is remember my broken bum wasn’t much fun either.
All those misdiagnosed years or agony and accidents. The thought of them now makes my blood run cold.
So yes, for me personally, I’ll take the pancaking and filter failures over that any day of the week.
For me my life is still on a high from surviving what tried to kill me.
I live life to the full. I want to enjoy it, and really live it.
And I think it’s probably deemed less news worthy than some tale of despair.
“Lady leads fantastically fulfilling life!” Isn’t going to make the headlines…
“My bowel exploded, I nearly died, covered in shit! Says Hollywood star” will.
It’s just human nature. But rest assured you are very very unlikely to experience his extraordinarily extreme version of stoma life.
And if on the off chance you do, perhaps a change of care team might be in order.
********
I had such a great week - although it didn’t start so well.
I was lying in bed the other day having a really lovely, relaxing, slovenly lie in, not sleeping in, just doom scrolling social media and enjoying myself. When I received a text message saying “Hi Suzanne. are you coming to the food bank today, your shift started half an hour ago?”
Oh my God the panic, the pandemonium!!
You have never seen a woman with a stoma, wash, bag change and dress so fast in your life.
I had to wash my hair too, as it was overdue. So it all added to the drama. It was without doubt - the fastest I’ve ever got ready ever!!
I had to leave the house with wet but clean hair and a bag clinging onto a still mildly damp body.
Not sure whether the moisture levels were from the shower or perspiration from my panic.
I find lateness intolerable. It’s so rude. And yet here I was. Already half an hour late by the time I was sent the message.
I got there one and a half minutes before the doors opened to the clients. I had missed all the preparation and setting up though.
I felt so bad. I was incredibly sheepish, it really didn’t help that I couldn’t stay to help pack away, as I had a dentist appointment to get to.
I was mortified. In fairness none of the clients knew I’d only just got there in time, but my fellow volunteers did.
Obviously I took this photo after I got back home. I wasn’t in any mindset to stop for a mirror selfie beforehand.
I came home, after the dentist visit, and just sloughed about for the rest of the day.
Chris messaged to say he was on his way home from work, and did I fancy going to the cinema. Well, you know I hate going, but he caught me in a moment of weakness as I hadn’t actually got round to even thinking about preparing a meal.
So that was an easy yes!
Dress from Sainsbury’s, Boots from DKNY, Bag from Goyard.
Because of my slovenliness from start to finish that day, I ended up watching a Marvel Comic movie. Not my favourite genre, but it definitely beats thinking about making yet another meal.
Apparently Black Adam doesn’t have great reviews. But if you like Marvel films - I can’t say it’s any better or worse than any others I’ve seen.
They’re all the same but with different characters in them. I may well be missing the nuances of comic book films. ;)
The weekend came and Chris and I decided to head to London for lunch. Chris had booked us into a classical mini concert in the evening near Borough Market.
We thought it’d be nice to make a day of it. A spot of lunch. A bit of shopping, a string quartet. Lovely.
Dress from DKNY, Boots from Russell and Bromley, Bag from Jimmy Choo
Things didn’t quite go to plan the way we’d hoped.
I’d salivated all the way to London thinking about the seafood cocktail at Quaglino’s. It’s my go to, all time favourite there.
We love Quaglino’s, but what we didn’t know or give any thought to was Saturday day times are live music, bottomless champagne brunch.
So for us it was a bit shit. It was jam packed, with people very much enjoying it, so it’s definitely Chris and I that are the weird ones in this scenario.
Most people enjoy bottomless bubbles and loud music.
But I’m a little hard of hearing, and it was so loud we couldn’t hear ourselves talk, so mostly we sat in silence (not actual silence you understand as the music was anything but), we did attempt shouting but it feels so unnatural to be screaming across a table at each other….we did text each other a couple of times, and Chris had to speak my replies to the waiters as I couldn’t hear a word they were saying…plus the brunch menu doesn’t have the seafood cocktail, and on top of that neither of us drink so it was wasted on us.
First world problems and all that. It just wasn’t what we had hoped for.
But for normal people, it’s fantastic, so busy and lively, it’s a really good time place to go.
We came out of there, ears ringing, and somewhat disappointed.
We decided to head for Oxford street, as I had been wanting to replace a favourite pair of boots I had bought about 10 years ago.
I’ve been meaning to replace them for the last six years since I inadvertently ruined them at my friend’s son’s 18th birthday party.
How did I “ruin” them? Well on the very last day that I consumed alcohol - I drank very very much alcohol - and gave myself alcohol poisoning. And vomited on said beautiful boots. Burning the suede with the extremely acidic contents of my stomach.
In fairness it’s only content was Prosecco and gastric acid.
…And I have never ventured down the alcohol path again. I realised that alcohol and I were no longer the firm friends I had thought we were. In fact I was a binge drinking, greedy bastard, guzzling the stuff like it was lemonade on a regular basis.
It all stopped for good that night in September 2016, and I’m happy with my choices.
So after six long years I finally re-bought the beautiful boots. They are such a great all rounder. Fantastic for walking around London in and great for evenings out.
The suede is waterproof (but not vomit proof, so just be aware of that).
London was a balmy and barmy 22 degrees. It took most of us by surprise. There was a whole cornucopia of outfits on display. From tourists who had packed for the weather you’d expect in late October, to girls in summer dresses, to strappy tops and hot pants.
It was perfect for wondering around until it was time for our string quartet evening.
Chris booked it as a spontaneous surprise. Something a bit different and enjoyable.
It was held in a venue near Borough Market. I enjoy the area during the day, the various foods on offer are a feast for the eyes and belly alike.
It turns out however I do not enjoy this area in the dark. If we go out in London for dinner it’s in Mayfair, Kensington or Chelsea. The roads are wide and well lit there.
They are not south of the river. It’s perfectly safe, and the area is nice enough and still very expensive, but I just don’t like it. It gives me the heebeejeebees.
I don’t like the narrow cobbled streets or the poor lighting. It gives me Jack the Ripper vibes. And I’m not great in high heels on cobbles. Mayfair is so much easier to walk in. Hahaha
The concert was so good. It was just one hour of string music. So it’s nice and easy going.
We had front row seats in a tiny little hall. It was beyond intimate. I could have played on the violin I was so close.
It was a really good evening. And I’d definitely recommend it to anyone that enjoys classical music but doesn’t feel they’d want to sit through hours of it.
Sunday morning we had a long sleep in and enjoyed the clocks going back…who am I kidding, my insomnia doesn’t care about seasonal time changes. Hahahahaha
We woke, very early, and Chris turned to me and said ‘do you fancy brunch at Chutney Mary?’
I’d pretty much just opened my eyes so the answer was a definite yes!! If I’m awake then the answer to that question will always be yes, and if I’m asleep, the answer is still going to be yes.
Dress from Zara, Boots from DKNY, Bag from Chloe.
They still had their Diwali decorations up which are beautiful.
My obligatory mirror selfie at CM.
I popped to the loo as soon as we arrived. Chris headed straight to the table. The waiter came up to him and said “hello again sir, lovely to see you, will you be having the non alcoholic lager? And your wife - The non alcoholic lager or a mango lassi today?”
And that ladies and gentlemen is one of the reasons why I love it so much there. It’s our version of the bar in ‘Cheers’, Cheers in fact! :)
Everyone knows our name and our order.
Obviously it was the 0.0 for Chris and a lassi for me. :)
The food was off the chart. It always is. But I had the best chole I’ve had since Agra. It was incredible.
We decided to have brunch and then head home. It it worth driving an hour and a half into London, and an hour and a half back again just for brunch in Mayfair. Abso-f word-lutley!!
Once you take alcohol out of the equation. driving anywhere becomes the norm. We never have the ‘is it mine or your turn to drink or drive today?’
Brunch eaten. Bellies full. Hearts happy. We headed home to watch a movie on the settee with a roaring fire and Butterkist popcorn (and yes, I had room for it. I’m like one of those pythons that stretch enough to fit even small humans in. ;)
It was the perfect end to a perfect weekend.
Rather proving that for every one horror story experience of stoma life, there are 100 quiet, fulfilled active lives taking place.
I’m very sad that he had a rotten time. But his isn’t representative of everyone. I am so sorry if his is in line with your experience. My heart breaks for you.
But I want to show my life, my stoma experience, which I think you can see from my photos is pretty good.
Can you dress well with a stoma? Yes, if you want to you can! You can also dress like a tramp (the hobo - not whore type. Actually you can do either if you choose to). You can do what you want, wear what you want, and I’m fortunate enough to be able to eat what I want too.
My life is pretty incredible!! I absolutely love it. Will it make the papers? No, there will never be “lady lives a charmed existence” story because it doesn’t have the high drama and peril humans have become conditioned to expect and thrive on.
Sad, but true I’m afraid.
*******
Not sure if you know, but I’m an ambassador for Ostique, the stoma innovation company. They asked me to come to a photo shoot back in August, with all the other ambassadors they chose for their upcoming campaign.
Well, they launched said new campaign yesterday and I was somewhat surprised to see it. Happy but surprised.
I didn’t know what purpose my images would be used for. I had given absolute editorial control to the team at Ostique because I believe in them and trust them implicitly.
So imagine my shock and delight by their post on social media.
(Ostique Sk.ns are available to pre-order from 14th November, and there will be 4 bundles available at launch, including the Intimacy bundle, which I’m modelling here).
I’ll be ordering some for my next holiday. My bag being on show has never bothered me. But I do prefer the look of the bag with Ostique Sk.ns on.
I had no idea that I’d be bringing sexy back! Hahaha. But you know what, I’m happy to front that tag line for one very good reason.
We are expected to lose our sex appeal as we age, if we are grandmas, or if we have had to have any body modifications.
Well **** that!!
Be who you want to be!! Don’t be told you can’t be sexy because you’ve had the temerity to live long enough to be old, or to be a granny, or to have had body changing surgery.
I feel fantastic! You don’t have to agree that I look fantastic, that’s completely and utterly fine.
But someone else doesn’t have the right to tell me how I should feel.
And right now, I feel pretty darn good!
I happen to be on a very good combination of HRT now, so I’m feeling very good! Very very ;)
If you feel you need some please see your doctor, if you don’t feel you need some, please just enjoy being your amazing self.
Go check out Ostique on Instagram, Facebook or Twitter, or on their website for more details. There are exciting times ahead.
Have a lovely weekend. Xx