I have often been asked why did I start writing my blog? It’s actually a question I ask of myself sometimes.
I suppose it was born of a responsibility to put wrongs right. And put stigma and misconceptions to bed.
First of all, I don’t suppose I ever gave colostomies or any other sort of stomas any thought at all before I had my cancer diagnosis. I didn’t know there were different kinds.
I had heard of a colostomy, but I hadn’t heard of ileostomy or urostomy before.
Weirdly, it’s Ileostomies that seem far more common place than colostomies, and yet colostomy seems to be the primary word used for all stomas.
I knew what they were on a very basic level. I knew poo was collected in a bag.
Before my cancer diagnosis I can’t say I paid any attention or interest in stomas. Yes, I was ignorant. Not maliciously so, just a simple lack of knowledge or life experience of them.
Well I had a very speedy, intensive course when I was diagnosed. I had to learn pretty quickly. I had a few months to acclimatise to the thought of having one, as I had to have chemo and radiotherapy first. I guess I’m lucky in that respect.
Some people, who previously had no bowel issues have woken from emergency surgery to find they have new plumbing in place. Completely out of the blue, with no prior warning, it must be such a shock.
There are so many ways you can end up with a stoma. From bowel blockages to gunshot/stab injuries, from a difficult child birth to infection. And of course the more common routes of Inflammatory bowel diseases and cancer.
I think it would be sensible to add information about stomas to the school curriculum, just to bring it into our collective consciousness. It would really help bring awareness to it, and once there’s more awareness and comprehension, I feel it would demystify it. And hopefully, in time de-stigmatise it.
I have always been very insistent that I have never encountered stigma for having a colostomy. But hearing that simple throw away remark by Michelle Visage on Drag Race the other day brought it into sharp focus for me. Clearly I have simply just been lucky to not have had any negativity about it.
I’m extremely gobby, with a mouth like a sewer, so it’s unlikely I’d ever have anyone say anything negative to my face. And let’s face it, anything said behind my back is none of my business. They’re behind me for a reason. ;)
But clearly there is a snidey, sniggery side to some people, who think it’s ok to be cruel about stomas.
Prior to my surgery I wasn’t unkind or senselessly malevolent about them, but I was uneducated and unknowledgeable about colostomies.
So writing my blog was in some ways a begging letter to the world. Look at us for who we are! Yes, we have a bag, but we are more than just a bag of poo on our abdomens. We are not the butt of your jokes, we are not your punchline, we are not stinky loners or losers!
I think I proved that time and time again. Mainly because I have (or at least I did have a fun life before that pesky pandemic happened) been to more places post bag than I ever went pre bag.
I mentioned last week that I was worried pre op, that I would smell bad. Well the funny thing is, unless something has gone wrong with the bag, we actually smell far less than our bottomed counterparts. There they are farting freely all day long into the atmosphere.
We do pass wind of course BUT it goes straight into the bag and it’s all taken care of by the filter. So we actually smell less on a day to day level than most. But that doesn’t fit with the narrative for ridicule and scorn.
I will admit that bag change time is a completely different story of course. My poo has usually been sitting in the bag for as long as 24 hours. So bag change time is far smellier than traditional toilet pooing. But let’s face it, pooing for everyone isn’t exactly our finest hour. We’re all gonna smell.
My bag change smell is cloying, and gut wrenching at times. But an Ostomy room spray and fresh air works wonders.
*Do not try and use shop bought room fragrancer on it, it’s a shocking combination and makes it far worse.
So to clarify, no! Day to day, out and about we do not smell! You cannot smell it! Yes, I’m aiming that at you Ms - friend of the marginalised - Visage!
My pre cancer lack of knowledge led me to believe my life would be over once I had my operation. I assumed I would never leave the house, and actually planned for that existence.
It seemed such a brutal, incomprehensible change to my body, I couldn’t compute it. I couldn’t picture what my life would or could be like.
So it came as a glorious surprise to me that I not only wanted to get out and live life to the full, I could - because of my stoma!
Six months after my surgery I was sitting on a beach in Cuba, sipping mojitos.
It seemed very surreal. This was not the future that I thought awaited me.
Which is why I’m so passionate about passing that message along, to the people coming up behind me. It’s not going to be the end of the world unless you choose it to be.
I appreciate my complete emotional turn around was as much as a surprise to me as it was to those round me.
I can’t tell you how to achieve it either because it wasn’t done on a conscious level. It just happened.
I went into the op crying, tears rolling down my cheeks, mourning the loss of my life as I knew it.
Only to have a complete 180, and love my new life.
I looked down, saw my stoma (they put a clear bag on straight after the op) I literally had a rush of emotion, like seeing your baby for the first time.
I felt bonded to my little red blob immediately. I just knew it was all going to be ok. I don’t know how or why I knew. It was very intense. I can’t explain it, I wish I could. I felt emotionally safe and comfortable with it.
I’ve never looked back. My surgeon warned Chris I was likely to crash and have an emotional crisis at some point, he felt it was unlikely I’d stay that high and elated…well, we’re coming up to 11 years now and I’ve not crashed yet, so I think we’re going to be ok. Hahahah
Which is why I feel it’s so important to to tell my story. To show me on holiday in far flung exotic places, dining in fabulous restaurants and shopping in beautiful stores (and Primark, god I miss a rummage in Primark), not because I’m showing off, but because I want to show what is possible. I for one never thought it was going to be. But my life now is bigger, bolder and brighter than I ever dreamed possible. Solely because I have a bag of poo attached to my abdomen.
Yes, I appreciate, very much so, that not everyone takes to stoma life, and some might feel aggrieved that I’m saying it’s sooo easy.
I’m not, just to be clear, I’m not saying it’s easy for everyone.
I’m just saying that for the most part I choose joy. I choose to turn the negatives into positives. Yes, I have a bag attached to me 24/7, and yes occasionally things go wrong and I end up embarrassed, but it’s not so bad.
At times it can be an absolute blessing.
I am lucky, I fully admit that, but sometimes you make you’re own luck.
For example. On holiday I have to wait round for all my bottomed family members to have their morning ‘ablutions’ (to put it politely) before we can set off for the day.
Well, I don’t, I change my bag when I want, on my terms and I’m good to go! That can only be a real positive.
I find that lot very frustrating, with all the ‘I’ll just have another cup of coffee to see if that does the trick’.
I also, on the whole, don’t have to worry about pooing in public conveniences, something that can strike fear into the heart of many of my friends. I know I was very particular about the use of public loos. To the point I used to hold it till I got home (wonder why I ended up with bowel trouble?! ;) )
I can spend the day at remote beaches or forests, without a care in the world. To me these are real wins.
I remember that cold sweat of urgency and no salvation in sight. I do not remember that experience fondly.
And, yes, of course my bag can leak, and that’s devastatingly embarrassing, but I know that all people have the potential to have accidents, it’s not just the preserve of a stoma wearer.
A lot of feeling positive is about reframing what you are experiencing.
I think I am a lucky person.
I had cancer, my son had cancer at 13, my dad had cancer. But we all survived, not because we’re special, or any more deserving than the next person. No. the reason we survived was solely down to luck. That is basically all cancer survival boils down to.
How could I feel anything other than lucky and blessed?
I find it’s important to register luck and be thankful for it.
Gratitude is a huge part of feeling positive.
I love a gratitude list, I saw it on Oprah years and years ago. It struck a chord with me and has stuck with me ever since. I have a tin with written gratitudes. But I sometimes just think of things I’m grateful for throughout the day. it’s a real mood booster.
It’s helped with having a colostomy. It helped with getting through cancer, it’s really helped through the monotony of pandemic lockdowns, although even I’m beginning to find them a bit wearing.
We were meant to be staying at the Savoy at the weekend. It’s our anniversary on Valentine’s Day, but we both intensely dislike going out on Valentine’s night.
There’s a different dynamic, and a weird buzz of expectation in the atmosphere. I find it unnerving. Everyone trying to behave in the way they think they should.
Tables of two. Of bewildered men, looking like rabbits caught in the headlights and women full to the brim of anticipation. The atmosphere crackles but not in way restaurants usually do - when it’s multiple tables of 4 (and more) having a laugh, really having fun, without either party trying to define what romance actually is.
So we tend to go for dinner the night before, or in this case, the weekend before.
Firstly, it’s cheaper and I’m nothing if not cheap! Hahahahaha.
Secondly I don’t like set menus.
And thirdly I just prefer the relaxed atmosphere of a normal night.
Sadly, our trip away was cancelled for a third time in a year.
Well, I am going to get to stay in the Savoy at some stage. It just might have to wait till we’re vaccinated now. There seems little point of leaving the house until we are.
It’s definitely going to be 4th time’s a charm, we’ll definitely get to go on our 4th attempt. And I really think it’s going to be worth the wait!
I’m looking forward to it already, and as disappointed as I’ve been to not to be able to go, I think it’s nice to have something to look forward to.
Although I’ve never stayed overnight, I am grateful for all those nights I have dined there, I remember how lovely it is. I also remember many joyful hours spent trying on shiny things in Boodles, inside the Savoy.
I can’t wait to go back...I can’t wait to go to a KFC at this point in the pandemic to be honest! Hahahahaha
Well, if we can’t have the luxury at the Savoy right now, I brought a bit of luxury to breakfast at home instead.
I got our good china out, I very rarely do that. But today just seemed a good day to do something special.
Why is it classed as the good china? Well, it’s very simple…it can’t be dishwashered, so it has to be a really special occasion to be bothered to wash it up! Hahahah
I sent Chris out to his playroom, yes, you did indeed read that right, he has a playroom. The secret of a happy marriage? Well if your husband likes consoles or football or anything screen based come to that, it’s best you put them in a space out the way so as not to aggravate you. ;)
While he was enjoying shooting cartoon baddies, I was playing life sized dolls houses. :)
Heaven, absolute heaven, and everyone’s a winner.
Dress from Sainsbury’s, Tights from Tesco.
I don’t think I’ve attempted flesh colour tights in about a decade. I don’t have a great track record of me wearing them without laddering. And that was before I needed to cut a hole in them, so they’ve always seemed an absolute non starter.
Flesh tone tights come on low denier and with that comes the lack the resilience of opaque tights.
I bought some ‘snag resistant’ tights in Tesco ages ago. But haven’t ever given them a try.
Well, I can report they took to having a hole for my bag to poke through very well.
I love this dress, but I think black or brown opaque tights is just too harsh against it.
And bare legs terrify me, I don’t want to be cold! God forbid I feel any slight discomfort. Hahahahaha. I’m such a princess. ;)
Bear in mind I can’t leave the bloody house, we’re all under national house arrest, so it’s not like I’m going to actually go outdoors…not unless it snows! Hahahahaha. Why I think I’m going to get cold indoors I do not know.
Anyway, I can recommend the Tesco snag resistant tights for stoma wearers. I appreciate that a lot of people with stomas just wear their tights normally. Without cutting holes in them. Someone said to me once what’s the difference between wearing tights and wearing leggings? It’s a funny one isn’t it. I don’t cut holes in leggings. I wear them perfectly happily intact.
I don’t know what it is with tights, I think maybe it’s because they go under another layer, and therefore adds to the amount of fabric and pressure the poo has to push through to get safely into the bag. I just know that when I’ve worn tights whole, It’s leaked. Well, pancaked at any rate.
(*pancaking is where the poo hasn’t gone into the bag. It seeps under the adhesive layer and leaks out that way).
I prefer, and feel more confident, with a hole cut in them for my bag to poke through.
I usually wear very thick tights for that very purpose, but tights are getting very clever, they are evolving into something far more sturdy.
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Chris and I were on FaceTime to Zak the other day. He’s hilarious, he’s very active, so he comes and goes from the screen, he isn’t even 2 yet so we can’t expect too much of him.
Anyway, I had been watching This Morning the other day, yes, yes I know I watch it a lot, yes, often it’s cheesy but I have found out lots of helpful recipes and information from there, so I’m going to stick with it while I’m stuck in.
Anyway a woman called into the phone in, I can’t even remember what it was about now, but she mentioned she Zoom bakes with her little granddaughter, each in their own homes, but cooking in unison, which seemed like a wonderful idea, she also mentioned reading to her over Zoom.
Well it gave me a brilliant idea, I miss Zak so much, achingly so.
I decided to see if I could read a book, and he would stop and listen. Well it worked a treat. He got his bottle and snuggled down as I read him The Wonky Donkey. It was absolutely amazing. Utter bliss.
I read the whole book, while he shouted ‘doggy’ all the way through. I mean it’s close enough, he’s not even 2 yet, god love him.
When I finished it I said would you like Nana to buy you the next book in the series, to which he emphatically nodded his head.
So I have bought The Dinky Donkey to read to him at some stage.
What a lovely way to feel together, whilst apart right now.
He’s not quite old enough for follow along Zoom baking just yet, but I’d highly recommend it if you can’t be near little loved ones right now.
Reading a bed time story to my children when they were small is still one of the many highlights of having my boys. Sadly, sometimes I would rush it because there was something better awaiting me. Turns out there really wasn’t.
Reading is such a gift, it has been one of the biggest past times to keep me sane through this last year.
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I cooked another This Morning recipe Saturday night, and it was a corker!!
I have discovered an absolute revelation too. Often my curries can separate, and become very watery.
Well Nisha Katona explained that if you blitz the sauce with a hand blender it makes the thick sauce that you get in an Indian restaurant. I’ve been making curries for the last 27 years and this is news to me!
So, add your onion, garlic and ginger to the pan and soften it. Then add the spices and tomato purée and water, then blend it!! This is very exciting. Then add meat or lentils or both.
I made a butter chicken Saturday night using this method and it’s nothing short of life changing! ;)
Just need to point out here that I mentioned it to both my sons, and apparently that’s how they’ve been cooking curries for years! So it turns out I’m a bit slow to the game. ;)
I can report that it was delicious.
I served it with just popadoms because we’d drunk about 2 gallons of hot chocolate in the afternoon and weren’t feeling terribly hungry by dinner time.
But this dish was so delicious and saucy it would be great served with my fusion food favourite of crispy ciabatta.
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You know me by now, I’m full of helpful hints and hacks. Hahahahaha, well I’m full of them, although how helpful they are remains to be seen. ;)
Anyway, I saw a fantastic idea the other day on InStyle on Twitter.
It’s from style icon Sarah Jessica Parker, and it’s genius!
When we, in the UK are finally released from our homes, we’ll be going back out into the world masked again.
I’ve been pro mask right from the beginning of this. Firstly it does no harm to try and reduce spital emissions in general, pandemic or not. ;)
But when going in and out of shops I shove my mask in my bag or my pocket. I had a most unfortunate incident a few months back, where the mask then got covered in bag fluff (we’re talking handbags here by the way), anyway I hadn’t noticed said bag fluff, and I put it back on, and spent the entire time in the shop inhaling it and chocking on it.
Well, style queen SJP has shown me a new way!
Rather than shoving it in your pocket or bag during non mask moments you hang it from your neck, like Mrs. Slocomes glasses in Are You Being Served!
It’s genius! Utter genius!
No more bag fluffed masks for me thank you very much!
Mine is now sitting waiting by my front door, excitedly, anticipating being let out again.
SJP paid $30 for her one apparently, I paid £6 from Amazon. There were some for as little as £1.99 but I thought I’d be indulgent and splash out six quid on it.
Will it look daft? Well, in the words of the wonderful Catherine Tate’s - Lauren “am I bothered? Am I though? Am I bovvered!!!?”
I’ll just be happy to be bag germ free.
Probably worth pointing out, that even once we are allowed out, I’m not coming out until 21 days after my first jab.
Last year, when there was no vaccine in sight, yes, I shopped, I holidayed, I dined out, but now corona is so rife, and there is a vaccine about 2 months away from getting in my arm, I’m not going to risk it. For me it’s just not worth it.
I imagine I’m pretty alone in that as everyone is gagging to get out there! :)
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I was watching…yes, you guessed it, This Morning the other day and they had a winter coat fashion item.
I saw this coat and thought it was absolutely genius!
It’s electric!! So, basically, it’s the electric blanket of coats!
I’d never heard of the idea before but it really took my fancy.
We’ve booked a holiday to Iceland and NYC for November and I’m really hopeful that we’ll get to go.
As I’ve previously mentioned, I have a weird fear about being cold. And the thought of the trip was making me nervous.
Problemo solved!!
I shall be as snug as a bug, in my battery powered, heated coat.
Now it’s fair to say Regatta isn’t my usual style or brand choice, but when it comes to keeping out the cold I’m open to anything.
It was in the sale too! So it was £160, down to £47!
I’m very happy with that. It’s actually just started snowing here so it might get a bit of an outing sooner rather than later.
I took my coat out for a trial session, I haven’t got the battery pack for it yet as it turns out they are sold separately. But it is my only warm waterproof coat. It passed the test!
The snow started coming down quite heavily whilst I was on my walk.
My garden was snow free when I left but I came home to this…
It’s been coming down strong, ever since, very exciting for me I can tell you. Note how excited I am, knowing full well I don’t have to drive anywhere.
If I needed to drive in snow I’d be sobbing into a pillow right now. Hahahahaha
Chris spent the whole weekend making me something for our anniversary next weekend. I don’t think I’ve ever been made something, just for me other than when my mum used to make most my clothes as a child. I was an ungrateful little brat back then and all I yearned for was shop bought clothes. I’m older and wiser now and I appreciate hand made with love.
So seeing as Chris had been hunched up all weekend we decided on a very chilly, snowy hot tubbing…seeing as I’m answering questions in this blog, this week…
No, we don’t smell.
Yes, we can lead very fulfilled lives.
Hell yes! You can get colostomy bags wet!!
:)
We finally got proper (in English terms) snow!!
I appreciate it lacks a little lustre compared to proper snow fall.
I’m very happy right now, I even made Kaitlyn’s request for an angel. :)
She was stuck inside working hard. It seemed the least I could do.
They are surprisingly difficult to make…It’s hard to lay down and get back up by yourself without ruining the angel with your feet and hands.
I made a smasher though!
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You know that saying “be careful what you wish for” ? Well that certainly came back to bite me.
I wanted snow, I wished for snow, I got snow.
What I had forgotten to take into account is the fact that this country falls apart at the first flutter of snowfall.
Literally grinds to a halt.
So there I am waiting for my one and only supermarket delivery a week and my Gousto delivery…waiting and waiting and waiting.
It got to 5 hours late so I called Sainsbury’s delivery line to find out how long it will be held up for.
The women on the phone was a nasty piece of work. I was calm and breezy to start with, assuming it had just been held up, but as the conversation went on, she informs me, without any apology that it’s been cancelled. I was getting very upset. Not angry (I’m angry now) I was just very distressed. I begged her not to cancel it and to allow me to pick it up click and collect or deliver it another day, please!?
She replied “I just told you it’s cancelled!!!”
I was so upset already, she then adds, that as well as being cancelled - my refund will be with me in 3-5 days!!!
Hold on a minute? So I’ve got no food and groceries and now my £147 is being held back for 3-5 days!!!??
She wasn’t very nice. I thanked her for her ‘help’ and put the phone down.
The more I thought about it the angrier I became. I’m lucky enough to be able to afford to buy other food, as we have enough money in the account to wait for the refund. But that wasn’t always the case for us, and that isn’t the case for an awful lot of people. Especially at this time.
What a horrendous company. If you fail to deliver, that refund needs to be instant. Not in 3-5 days time.
My Gousto delivery also failed to turn up. I reported it missing. I then received an email in the evening saying that it had been cancelled, my account would be credited with my refund and a 20% off voucher as an apology.
Still not much better than Sainsbury’s, because I still have no food, but at least they acknowledged it was their issue.
I would, at this moment like to point out, that my milkman came in the morning and Amazon came - twice!! So how did they manage to get here? Were they using snowmobiles!!?
We’re not prepared to go into shops, so we’ll live out the cupboards for a week.
I’ve made a meal plan.
I think I’ve got everything sorted.
We’ll even have fruit as I’ve got tinned pineapple and tinned peaches. That’s scurvy prevention taken care of! Hahahahaha
But Sainsbury’s, thanks for nothing, literally!
Anyway, on the upside, it’s very pretty out, all snowy and beautiful, plus I’ve managed to scavenge through my cupboards to make 3 meals a day for a week. Bear Grylls eat your heart out! Hahahahaha
Thought I might as well. :)
Happy snow days all. Xx