I did the most stupid thing, bearing in mind I do a lot of stupid things, so to be able to pick one out as a corker is pretty impressive!
I am the woman after all who bought an 8 foot nutcracker soldier Christmas decoration, without giving any thought to where he was actually going to live for the other 11 months of the year.
Anyway, last week I went to get the new box of colostomy bags out of the drawer where I keep them. Only to open it to discover that rather than being a box of 30 colostomy bags that I assumed it to be, it was actually an empty box that I had filled with dry wipes and the black nappy sack disposing bags!
Expletives ensued with gusto….Holy **** ******* ********** ******** **** ******* shit!!!!!
I hurriedly called the stoma supply company I use, begging for help.
They were amazing, the lady I spoke to was so kind. Bearing in mind this was nobody’s fault but my own.
She said she’d put urgent on the request. And I crossed my fingers and hoped.
The process here in England is;
I phone the stoma supply company. They then put in a prescription to my GP practice. The GP have to sign off and return the prescription to the stoma company. They then fulfil the order and send the supplies by parcel service delivery to my home.
It works beautifully, unless you either forget to order in time (because sometimes that happens, because I get side tracked by life stuff and I forget). Or as in this case I thought I had a whole month’s worth still to use.
I was in quite the pickle.
I had 4 bags left. And who knows when the delivery would get to me.
Plus I’m going away in that time frame and needed the bags ASAP.
I was so on the ball, or so I thought.
I booked the house sitter to look after it while we’re away, I ordered the currency, I bought the holiday essentials…I just didn’t think to check stock levels of my bags. Which by the way on a 7 night break I could need anything from 14 to 25 bags. Depending on activities, foods and mishaps.
So I did what anyone looking for anything does, I went to Amazon.
The only bags I could get in good time were £10.99 for 10. (Such a shock to the system as I get everything for free).
They arrived two days later and my God they have made me so grateful to live in England where all my stoma supplies are free and of exceptional quality.
In fact I get to choose (when ordered in good time) whatever bags I wish, whatever bags I’m comfortable and happy with.
The ones from Amazon, were (in my opinion and experience) absolutely bloody awful!
The quality was shocking ( I say this from a very thankful position of privilege, because my usual ones I get for free are very good).
I personally use ileostomy bags, even though I have a colostomy.
(A colostomy is an opening in the colon - large intestine. An ileostomy is an opening in the ilium - small intestine.
Weirdly most stomas are referred to as colostomies - when in my experience, most people I have met have got ileostomies. I suppose it’s like saying I’m just doing the hoovering, when most people own anything but an actual Hoover, a name sticks).
The reason I wear ileostomy bags is that I don’t like the feeling of claustrophobia I get with a closed bag. Even though I have solid output I want the option to empty air out that can build up. But also if I get an upset stomach I can easily empty the bag should I need to.
With a closed ~ colostomy bag ~ I haven’t got that option. It’s change the whole bag or nothing. And in my mind, if I’ve got a stomach bug for example, I don’t want to be fannying around with bag changes.
The bags I usually use are pretty good. The filter is great and the bag doesn’t balloon on a daily basis. The air going in is fully taken care of by the filter.
The bags from Amazon didn’t have a filter at all, not even a poor one. It had NO filter.
It unfortunately coincided with me being extra windy. Probably partly because of the stress of the no bags situation, and also because I discovered the delight that is a Costa oat milk (it’s not milk is it, you can’t milk a nut…so oat juice?) hot chocolate.
Oat ‘milk’ contains way more fibre than cow milk, and made me incredibly windy.
The Amazon bags were just about okay during the day. But the night was terrible.
I couldn’t relax because it kept ballooning with air. To the point the seams were taut. I was fearful of it exploding. So I couldn’t sleep properly, on top of not sleeping properly to start with.
I had to empty the air out 3 times during the night.
All because I mistook an empty box for a full one.
I am so grateful to the NHS for providing my bags. I’m so grateful to the stoma supply company for getting my delivery to me in record time!! I am now back with my normal bags again and I feel so relieved.
For a start it means I can holiday comfortably.
I feel very blessed that on the whole I have a spectacularly good life, and a positive outlook on stoma-ing.
There are people in this world who don’t have access to decent quality stoma supplies, or even any stoma supplies at all. And their lived experience must be limited and distressing.
I am very lucky. I feel it every day.
Below are a couple of people who are trying to make the lives, of not so fortunate stoma users easier, providing stoma products to those in need;
On Instagram
And…
On Twitter.
Both very worthy causes. Thank goodness for them.
Up until my stoma delivery arrived I didn’t do much. I didn’t feel like me. I felt angst and uneasy about the situation. So I stayed at home.
Skip forward to the bags arriving and I leaped back into life!
Staying home wasn’t too much of a chore because we were having the kitchen decorated, and it’s turned out an absolute treat.
I was a bit bold, and bought Neptune’s Old Rose paint for the feature wall. Chris wouldn’t let me have the entire utility room done in it (and in all honesty - he was probably right to make that decision - but let’s just keep that to ourselves - It would have been a bit much entirely in pink).
But on the kitchen end wall it’s gorgeous! I absolutely love it.
I’ve treated myself to some expensive linen (not for use) dusky pink tea towels.
Chris is going to be delighted when he finds out we now have show tea towels that you can’t use. He loves new rules to learn hahahaha.
Then it was go time, time to leave the house and enjoy life. Correct bags in place it was go go go.
Saturday was lovely, Ben arranged a day out for Chris’s birthday. He saw something he thought Chris would enjoy.
Chris likes finding hidden parts of London. He loves weird and wonderful, off the beaten track type places.
He’s taken me to quite a few: a bench in memory of Kirsty McCall, the smallest public square in London, the memorial of a Nazi dog ~ that one was a bit odd, but interesting nonetheless.
Dress from Zara, Tights from Tesco, Boots from Jimmy Choo.
Anyway Ben booked us tickets to see the London Mithraeum (no, I’d no idea what that was either).
But it’s the discovered ruins of a Roman temple under the Bloomberg building.
It’s actually very interesting. And really well done - for a museum - I’m not the biggest fan.
It’s free to visit too so definitely put it on your list. It’s fascinating, and free, free is my favourite sort of museum.
After that we headed off shopping to buy some bits and bobs.
Chris bought me an Apple Watch, so now I’m fully up to date and aware of how unfit I am. But now as an added bonus my watch is judging me, and willing me to move!
We had lunch there followed by more mooching.
It was a fantastic day out. And if my stoma company hadn’t been as quick off the mark as they were it’s a day that wouldn’t have happened.
We had lunch in Pasta Evangelists in Harrods. It’s very very good.
Sunday was a very chilled out day.
We pottered about at home and then went to the seaside at Frinton for fish and chips. This time getting there before dark.
I went for a walk to get my steps in. I had to, the watch was hounding me…while Chris had a nap in the car. I believe I might be married to Garfield. ;)
We love fish and chips by the sea. For me it’s one of the happiest things to do. We do take our own cutlery, as neither of us can cope with the taste or sensation of the wooden sporks.
Also I take my own sauces just to make sure we get some. They’d sold out of tartare last time…a fish without sauce is like…yeah, I have nothing profound to say, profane maybe, but not profound. ;)
*******
I’ve been able to just enjoy myself because I’ve had the bags I use to do so. Not having them really brought home how lucky I am.
I had such a busy day on Monday. I went to my nail appointment (I said busy, I didn’t say important), then I went to a hospital appointment an optician had referred me to as an emergency (some 9 months ago!!).
Anyway I assumed it would be a waste of my time but felt I probably should go and find out what I was referred for as the optician didn’t say.
After a 4 hour wait, and a number of tests later, it turns out I have the beginnings of glaucoma! Ffs do I need anything else added to the list of failings or falling off body parts!? Do I!? Really!?
I did panic for a minute, I got a bit confused and thought they meant cataracts, although glaucoma isn’t ideal either.
Anyway, the really lovely doctor had put my mind at ease, and feels for now we’ll just monitor the situation.
And to my mind - who needs peripheral vision anyway!! ;)
I then headed to London and met Chris for dinner. I’d been so delayed by the appointment running late that a zoom meeting I was hoping to be safely sat somewhere quiet and private for, was attended by me on a train, and then at Stratford station, while I waited to get on the underground.
Not sure everyone on the train needed to hear the introduction of myself to the group, but they got it anyway.
Everybody on there now knows about my entire back story and all medical alterations. Hahaha
I’m very excited about that meeting though as I’m going to another conference in Greece for it in March, Thessaloniki this time.
I went to Greece for the first ever time in October 2021, since then I’ve been 3 times, with 3 more trips planned for this year too.
The meeting in Athens I was so scared and so nervous about. I thought I’d been invited by mistake. I felt so out of place. But going to this next one I feel emboldened. I’ve earned my place at the table and I will give all that I have to offer. Which is an incredible amount of lived experience. As both a patient having had cancer, but also the fairly unique (and undesirable) experience of being the mother and the daughter of fellow cancer patients/survivors.
I can use my voice to help others going forward. I feel incredibly proud to do so.
Have bag - will travel - have right bags and I can leave the house in general.
I attended a conference in September in Athens, and I was awestruck and honoured to have been invited back to attend another one.
Plus I have a 2 other medical conferences (zooms this time) upcoming, connections from the Athens conference. So I must have done something right. :)
Chris and I had a cheeky Monday visit to Chutney Mary. If I’m in London, it’s probably where you’ll find me.
Then Tuesday I had an appointment in London. The beautiful ring Chris bought for me in Galway needed some TLC. I’m incredibly clumsy, and I walloped it on something and now the stone is rattling round in the setting. So the team that made my sapphire (bowel replacement therapy) ring, are going to mend my Galway ring for me.
(It’s what Chris had made for me for surviving cancer, and not leaving him alone to do his own washing and life etc…or something more romantic/traumatic than that).
And then after that appointment I did a bit of shopping, then I was meeting Chris after he finished work.
It was however horrific weather. Monsoon rain and blowing a gale. I looked a right treat by the time I met up with Chris.
I had a lovely time shopping. I’m very happy to be able to occupy myself. I had lunch by myself, like a grown up. I went where we had lunch on Saturday. Pasta Evangelists is one of my absolute faves. They do the best Chicken Cacciatore.
I bought a load of Harrods Christmas puddings…Half price! Actually two of them were less than half price (they run out of date in September 2024, absolute bargain), I bought some Christmas crackers that started off at £125, which I got for £38. And Spare, the book of the moment, and a new suitcase, because my one has clocked up way too many miles.
I sat and read my book (it’s a great read) and had a cup of tea while I waited for Chris to finish work.
We then had dinner at The Cadogan Hotel, which incidentally is another hidden London stop, as it’s where Oscar Wilde was arrested (for the crime of just being himself).
Dinner was fantastic! The Hotel restaurant is really very good.
Then back home to bed, where my new watch can let me know I’m not getting enough of the right type of sleep…I’m not quite sure what it thinks I can do about it, it’s not terribly up to me is it!?
I go to bed, close my eyes and let my brain do the rest, and the rest.
I can’t actually do anything about the quality I’m given. Having done everything the sleep “experts” suggest.
Still, it’s nice my watch likes to tell me where I’m failing in life. Hahahahah, good to know. ;)
The machines are taking over.
I call my watch HAL. ;)
************
(FYI, I don’t usually pay too much for a pair of tights as I cut a hole in mine to poke my bag through.
I know lots of people don’t do this, and think I’m a bit odd for doing so, but I find I’m more confident if I do. I don’t question it, I just do what I feel more comfortable with.
Confidence is key. :)
Dress from Zara, Tights from Tesco, Boots from Gucci).
Chicken Cacciatore from Pasta Evangelists in Harrods is amazing. :)
This blog was brought to you by the power of the right bags.
Everyone has their own preferences. I love the Dansac bags out of all the ones I’ve tried.
I often give other bags a go, but I always go back to the Dansac ones.
I find wearing anything else is like wearing someone else’s shoes or undies. You know nothing bad will happen but you just don’t feel right doing it.
I have been lucky enough to find my life with a stoma unbelievably good. Pre op I never thought a fraction of what I do possible. I didn’t dare dream of a full and vibrant life. I really did think my social life was over. That’s what I could picture. All I could see was me staying home, hiding from the world ashamed of the life saving alterations that had to be made.
How crazy that seems now. How completely ridiculous that seems now. But before the op, it all felt very real. It seemed the only way I’d be able to live was to hide away (and not actually live at all).
I’m glad I found the lived experience so very much different to the one I had imagined.
I’m very grateful I’ve had the chance to live, and actually, I have found life with a stoma a million times bigger, better and brighter, than the 10 years prior (due to misdiagnosis and being painfully symptomatic for a very long time).
I have definitely found the right bag makes a huge difference to my ability to enjoy life.
The clothes might maketh the man. But the right bag definitely maketh me :)
As weird as it sounds because I write a blog every week about life with a colostomy, but my colostomy doesn’t even come into my mind on a daily basis.
I change my bag once a day, in the morning after a shower (usually once but possibly more). And then that’s it for a whole 24 hours. I go off and enjoy myself. And I don’t think about it again until the next change (with the exception of it causing blushes if it chooses to fart in public. Unlike bums with rectums, stomas have no sphincter, which means I have zero control over it. That’s honestly the only down side I can find. The rest of the time I’m living the dream).
Because I have it ~ it doesn’t have me. There’s a huge difference.
Have a fabulous week. Keep well. Xx