Ok, I’m going to level with you. I’m 47 and I do not drink properly.
Yep, 47 and I have a drinking problem (no, not that sort, I stopped drinking alcohol 3 and half years ago. Let’s just put it as simply as I can, we fell out, alcohol and I. I realised that maybe we were no longer the friends I thought we were).
No, this drinking problem is simply with daily intake of fluid.
I’ve always been the same, I’m a gulper, a guzzler. I remember my ex mother in law commenting on my poor fluid intake practices 25 odd years ago.
For example, I used to go all day on 1 cup of tea and a glass of wine in the evening. That’s it. :o
Occasionally, when I was feeling thirsty (this was the occasion ex MIL saw), I realised I was thirsty, so I gulped a pint of water straight down.
This, she explained, having seen it mentioned on day time telly or something, was the worst thing you can do. It fills your bladder up and washes the electrolytes away.
So I knew I was terrible at hydration way back when. I did strive to achieve better fluid intake results but the problem is I’m very rarely thirsty, so by the time I am, it’s a bit late.
If only this was the same for food! How come I put food in even BEFORE I’m hungry, but can’t do the same for water?
Well after that horrific experience with the bike ride last week I decided I needed to get to grips with my fitness.
I reached out to the wonderful Sarah Russell, the author of The Bowel Cancer Recovery Toolkit (a must buy for anyone diagnosed with bowel cancer, but also helpful to any bowel surgery patients).
We had a great Zoom discussion, and before we even attempt to get to grips with my fitness, Sarah felt we needed to get to grips with whatever occurred last week. She’s right of course, I need to start from scratch, because this is my general pattern;
1, Panic - I think I’d better exercise.
2, Go at it like a madwoman to “feel” results.
3, End up ill or injured.
4, Ditch exercise - it’s horrible.
5. Repeat pattern a thousand times.
That is my life, right there in print.
It’s true that I wasn’t a sportswoman before cancer but I’m a thousand times worse now because my hernia and troublesome bladder hinder anything I try.
So before we even get started with the idea of some gentle exercise, we discussed last Friday’s events.
I went for a 1.7 mile bike ride and thought I was going to keel over and die.
We pretty much worked out that my hydration pattern hasn’t really changed that much from when I first discovered my gulping water wasn’t helping me at all.
I’m now set with the challenge of hydrating thoroughly. Dioralyte is the first weapon in my armoury, I had some in the cupboard, so I’m giving it a go. I’ve ordered some other hydration solution, but dioralyte will do till that arrives.
(This isn’t advice all across the board, if you are struggling to hydrate properly then speak to your stoma nurses or doctor).
I need the fluid I take in to be used properly by my body. This will of course help with the very regular constipation issue too. I’m going to kill two birds with one stone straight off the blocks.
I have bladder damage from radiotherapy and the bowel surgery.
Since that time I have battled to drink enough water to keep myself well, but not so much that it sends my bladder into spasm.
Therein lies the problem. It’s a very tricky balance.
I knew I wasn’t getting it right most of the time because my urine is either clear like fresh spring water or brown like tar. I’m flushing through too quickly and then dehydrated because the body didn’t retain anything that went in.
People with Ilesostomies are advised to drink rehydration powders because of the amount of fluid/salt they lose daily because of the lack of large intestine.
I have most of my large intestine and therefore it’s never occurred to me I might need a bit of help.
I have a radiated intestine though, and that may play a part in not absorbing the good stuff. Who knows, I already know that I need B12 injections because I don’t absorb it properly.
I’m going to see if hydration with powders makes a difference to my general well-being. I really hope it does, I don’t want to be a sorrowful little sad sack sitting panting in the corner like a hot dog just because I’ve walked to the post office and back. (6 minutes away).
I don’t have a close bond with exercise, school put me off for life. I’m dyspraxic and therefore beyond uncoordinated and clumsy but also the least competitive person you’ll ever meet.
School PE lessons were some of the worst times of my life…well, apart from maths and English and all the other lessons. Oh let’s face it, my school days were not happy days.
I’m going to have to build an interest in exercise. It’s going to be a mountain to climb that’s for sure. (Not literally, I only want to do an hours bike ride or something like that).
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I wrote this first part at the beginning of the week and I’m happy to now report I repeated the same ride as the one from last week.
I had sips of dioralyte before hand, got myself well hydrated and can you believe it!! I was fine!!
Puffed out but not feeling ill at all. I was able to walk up the garden path rather than on my hands and knees, retching. That’s a win right there.
Cracked that bit, sipping water is a new skill to perfect.
Yes, I’m fully aware how ridiculous that sounds, I’m a 47 year old grandma, and I’m finally learning how to drink.
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I wrote last week about the young man that wanted to be able to die if his latest op lead to a stoma. Well I’m heart broken that he has now passed away.
The judge upheld his pre op wishes. That doesn’t mean the judge agreed that a stoma is a fate worse than death…well I hope it doesn’t anyway. No, he simply upheld the pre written wishes of the man.
Please, I’m desperate for you to hear me when I say a stoma of any kind is most certainly not a fate worse than death.
Please understand that poor young man must have been desperately depressed.
Even on my stoma’s worst days (not that I have many, but they happen from time to time), but even on the worst days I still feel on a high to be alive.
You could use the old “oh it’s alright for you you’re married, had your children etc etc” and to a degree I would agree with you.
I am lucky to have met the most wonderful husband in the world who raises me up like I am his queen. That’s true, I do have an incredible support team, but I had to kiss a lot of frogs to find my handsome prince, so yes, some of it was luck, and I am lucky, but some of it was by design.
Surround yourself with good people, detach yourself from negative forces. I spend as little time as possible in negativity.
Life is way too short to be brought down and made to feel bad.
Build yourself up from the inside, believe in you. If you’ve come through bowel surgery you know you are a walking miracle.
If you’re facing surgery know that you can do it. I believe in you, because I’ve been in your shoes, and if I can do it you can too.
Don’t put too much pressure on yourself to feel a certain way either. Let it come to you. Sometimes it takes time, and that’s just fine.
I was lucky, I came round from surgery and the world, and my place in it felt different. It was actually very beautiful, but I would say I’m probably a bit weird in that respect. I’m incredibly grateful though.
My life now is so good. The world used to be a tiny place, a fearful place. There were two restaurants I’d go to because I felt safe in using the toilets there, and that was about it. I didn’t use to fly. I didn’t use to do much at all really.
Then the cancer was finally discovered - I got well and never looked back.
I have been everywhere I’ve ever wanted to go. I would go anywhere too, I’m only restricted by the cost now (thanks corona), not by fear.
I’ve blossomed into this adventurer, something I never thought possible. Take last year for example, I flew somewhere amazing every single month (my carbon footprint is shocking but mental health is on point).
I flew to Venice for lunch twice! Yes! For lunch! 6.05am flight out of Stansted and the 10pm flight back from Marco Polo.
I flew to Gdansk for lunch, this February just before lockdown.
I go where I want, when I want! My bag made that happen.
My bag is not a negative. It can’t possibly be. It’s given me the world to play in!
On the way to Spago, Beverly Hills.
On Rodeo Drive
In Vegas
In Paris
In New York
In Venice
In New Delhi
In Agra
In Mumbai
In Poland
In Spain
In London
At Henley Regatta
In a ball pit on my grandson’s first birthday
In Austria, living my best life! Hahahahaha
…And the list of places could go on and on. I’m here, I’m alive and I’m making the most of every minute!
Just a few quick questions; Do I look pitiful (well apart from my attempt at skiing)? Do I look like my quality of life is so low I’d be better off dead?
Do I look feeble? Do I look sad? Do I look like the sort of person you’d walk past and feel sorry for? Do I look pathetic to you? Do you feel sorry for me because I poo in a bag on my abdomen?
Does this lady before you look like she’s having a rotten time? Does it look like the bag of poo is holding me back?
NO! I’m bloody loving life!!
You might well think what a spoilt bitch for going to so many beautiful places but you couldn’t feel sorry for me in any way.
I don’t need pity, I might need a bit of kindness every now and then if my stoma farts without warning or my bag leaks (very rarely), but I’m not desperate for it.
I am whole, I am complete in my incompleteness and more than anything - I am enough!
The only plastic on me is my colostomy bag, other than that I am fully biodegradable (I’ve had a few queries so I thought I’d answer those). ;)
Also a few queries about my lack of scars. I think some of it is down to luck again, my scars didn’t get infected and healed nicely. Plus my operation was on private medical insurance, which I guess makes a difference to the way it’s performed in the UK. I’m not really sure.
There are some challenges with stoma life, but nothing you (or I) can’t work round. It’s all do-able.
If air builds up in my bag, I take myself off and empty it out. If it fills up, I change it. If it leaks, I cry a bit and then change it. (I’m confident, I’m not superhuman).
It’s ALL do-able. Life is worth living. The only fate worse than death is death. There is no “end of the line” or any other negative connotation. Stomas give a new lease of life.
They give to you a whole new world to play in, just bagged, that’s all.
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My weekend was spent in the garden, enjoying the sunshine, doing the gardening. What an exciting life we lead. Hahaha.
We’ve now worked out that if we spend time at home instead of going out wasting time and money hedonistically we can actually do our own gardening, for free! Who knew? ;)
This weeks gardening 101 was hedge trimming.
I can’t do the trimming bit, the weight of the trimmer would anger my hernia, but also I’m so clumsy I would definitely be a danger to myself and others. Hahahahaha.
Even on days like today, the less interesting ones on the calendar I feel so lucky.
I don’t have to be off at fancy functions to feel alive. Bit if luck really, as there aren’t any this year. We were meant to be at the Cartier Polo last week, that would have been amazing…and no hedge trimming doesn’t really compare, but mundane days are still amazing days, and still worth being here, alive and kicking.
What to wear for days at home gardening, well not make up and fancy clothes that’s for sure.
I enjoy getting all dolled up but I really can’t be bothered and it’s totally unnecessary for slobbing around the house days. I want cosy, comfortable clothes, ones that I can poo in freely, without fear of leaks. Not that it matters too much at home of course but I’d prefer not to.
If you are going to tackle trimming a bramble or prickly bush please take care with a stoma bag. I cut a low hedge back a couple of years ago and I could smell poo all day after. I just couldn’t work out why. The bag hadn’t leaked in its usual way or anything. It was only on closer inspection that I noticed tiny pin prick holes that must have happened when cutting the bush down, I’d not noticed as they hadn’t prickled me, just the bag.
T shirt from Chris’s wardrobe, Shorts from Boohoo, shoes from Tory Burch
I picked up all the debris, this is teamwork. :)
We had such a lovely time. Ben and Kaitlyn came round for salt beef bagels from Brick Lane (London) that the local cafe at Rayne Station has started selling at the weekends.
I don’t eat red meat but they seemed to enjoy them very much.
I was able to give them the presents I bought them from Milly and Sam’s little business they’ve started.
They’ve been up cycling furniture for a while and that’s proven to be very popular, so now they’ve branched out in to eco friendly, ethical goods.
These sandwich bags are brilliant! They will save so much on plastic cling wrap or tin foil.
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Dress from H&M, Shoes from Hermes
On Monday this week I went for another bike ride. I doubled the distance and it was hot out already. I managed it, I got home puffed out and head pulsating but I didn’t nearly throw up or pass out. That is a win in my book. I felt so perky after I got washed and dressed and went off to pick some bits up from Neptune in Colchester, and popped into the deli at a local garden centre.
I know, what a minx! I’m so brave heading to a shop! Who knew that was going to be a sensation in 2020!
I masked and I anti bac.
I'm venturing out but I still don’t want to catch the lurgy or pass it on.