Okay, we’re not talking food processors here. Stoma’s and Indwelling catheters might not have been where you thought this blog might have been going. Bare with me, I promise it will all be worth the wait.
When I think back to my late teens there’s one memory I don’t forget. I was in my 6th Form Common Room, generally loafing around. I was flicking through the pages of the latest edition of Viz, flicking over Top Tips. No doubt avoiding a food fight or some dirty bastard flicking bogeys when my eyes were drawn to an advert. An otherwise run-of-the-mill advert for T-Shirts. On this particular T-Shirt was a picture of a takeaway food bag with very clear wording: “Colostomy? Not my bag.”
Funny? I thought it was absolutely hilarious. I was a late teens gob-shite at the time, but I was not a shamer. Bullying has never been my thing. But, I still think it’s a clever use of the English language.
What a Difference a Day Makes? Try 13,140 Days (Roughly 36 Years Worth of Days)
Lying in my hospital bed last November, I recalled the image of that T-Shirt many times. I was recovering from my own colostomy surgery. It is one of the best examples of a karmic experience happening to me that I can think of.
Roughly 75 days earlier I had been lying back in a different bed. Again feeling a touch philosophical, and probably a little sore. This time I’d just had my suprapubic catheter fitted. A ‘permanent’ plastic tube, came from my bladder, poked through a hole in my abdomen and collected pee in a bag fastened to my leg. I had my own wine bag. The tap on the end of the collection bag, made me think of the mechanics of a wine box minus the box. I do have an odd mind at times.
Are You Proud of Me Richard Rogers?
This probably won’t mean much to many of you reading this but it’s an insight into my odd mind. When I was going through my post-surgery recuperation last December, I was skimming the news and came across Richard Rogers’ obituary. I knew that RR was a massively prominent architect. I didn’t know that he was part of the esteemed team responsible for the Pompidou Centre in Paris. The Pompidou is the first image at the top of the blog. Why?
Reading more of RR’s obituary revealed he designed a number of similarly themed buildings. I’ll call these, the inside-out buildings – the Lloyds of London building, the old Channel Four building etc. He seemingly loved designing buildings with their ‘pipework’ on the outside. But, with all of my ‘pipework’ now outside of my skin, I had become a living RR’s architectural installation!
So why the Need for Nick Knowles & Plumbing SOS?
This is an interesting point because there wasn’t a surgical need for either of my surgeries. Both of them were elective procedures.
Those that know me, know that I’m soft as shite. I avoid pain like most other ‘normal’ people. But I asked for these surgeries. Why?
My mobility is now shite. I’ve been in my wheelchair for six years and I’m struggling to stand, pivot, and transfer anymore. Banana boards and hoists are amazing pieces of kit, but not to get me on and off the toilet. Yes, this is a personal view. Yes, they’d work at home. OK, we’d need some building work and rearranging of walls, rooms etc. But what about travelling? And what about my independence?
There are portable hoists, but at 40kg are they that portable? Really? Plus, it would be another piece of kit for the airlines and/or baggage handlers to break/lose. Irrespective of all of that, it would be another piece of equipment for Lisa to lug around. This is not fair. I’m trying to make her want to continue to travel with me, not scare her completely!
It was time to scratch my head and revisit the drawing board.
We Don’t Discuss Bodily Functions, do We?
I’ve written before at length about how MS is a progressive condition. Especially my MS. It generously gave me my neurogenic bladder. And I’ve written about self-catheterising intermittently and the great convene and collection bag https://wheeliebigadventures.com/wheelchair-accessible/so-what-exactly-is-the-fluid-content-of-a-healthy-adult-bladder/. I may have spared you the joys of my MS related neurogenic bowel. But I think you get the gist. Let’s just say my MS has created a situation where when I have to go, I have to go.
Twenty odd years ago when our kids were little, I thought nappies were such a great thing. Now, you’re going to have to trust me with this one, nappies are brilliant for the parent. But it only takes a few seconds for them to lose that shine when you’re the one doing the wearing!
The Covid lockdowns of 2020 & 2021 stopped us from travelling overseas. I was also tagged Clinically Extremely Vulnerable. Add the two together and we stayed at home for the best part of those years. Stopping at home gave me a skewed picture of the difficulties of managing my ‘functions’ in a normal world.
At home, just before covid, in fact, we’d added a Closomat – an amazing, Japanese style, ‘wash your bum’ toilet https://www.closomat.co.uk/. Bye-bye wiping and washing – a Godsend when your hands claw. And we’ve fitted loads of grab rails so that I could pull myself onto the toilet from my wheelchair. There were times when I fell trying to make the transfer; thankfully these were few and far between, and when it did happen I’d paid my subscription and had the great team at Careline to call upon https://www.careline.co.uk. They scooped me off the floor and put me back into my wheelchair.
But I’m 53. I didn’t want to spend the rest of my natural, stuck at home on the off-chance that I might need a poo. I’m not exaggerating for effect; this was the very real fear that I was experiencing.
So What did I do?
When these things are happening to you, it’s only natural that you read everything that you can about what the possible solutions might be. Most of them – nappies, hoists & grab rails – I’ve mentioned already and had exhausted their usefulness for me. The only remaining options that I could conceive of were surgical ones.
Yet, I didn’t have bowel cancer or something like Chrohn’s disease or colitis; I wasn’t sure whether I ticked any of the boxes that required a surgical solution. I was asking to have these surgical solutions to give me back the quality of life that I’d lost.
In fairness, I was scratching my head about who to discuss it with; I was also more than a little uncertain about discussing these things with Lisa. I appreciate now this is crazy, but confronting these fears had put me in a very strange mental place.
Lisa was brilliant; as was my MS Nurse who could more than see the logic to what I was considering. She reassured me that I wasn’t thinking about a ‘leftfield’ solution for my MS and my stage of disability. Likewise, my GP, who I spoke to later the same day, was understanding, and supportive and wrote me the necessary referral letters to the relevant urology and colorectal surgeons. When you’re on a roll, keep on rolling.
Did I need to educate the knowledgeable?
Thankfully both surgeons thought the same as my other health professionals. The suprapubic catheter procedure is done under a local anaesthetic and can be easily reversed, so the urology surgeon was on board immediately.
Colorectal surgery isn’t as straightforward as the urological procedure and the surgeon gave me a grilling over why I wanted surgery and what my expectations were. Quite correct. The surgeon’s concerns didn’t relate to the surgery itself, or whether it was the right thing to do for my disability. His unknown was how my MS body would react to a stressful surgery undertaken under a general anaesthetic. But he discussed it with his anaesthesiology colleagues (and the wonderful Colostomy nurses) and about six to eight weeks later I was being prepped for surgery.
I’ve attached below the official link to Colostomyuk and some information on catheters from the NHS, in case you or anyone you know might be having similar thoughts as I was. https://www.colostomyuk.org/ https://www.nhs.uk/conditions/urinary-catheters/types/.
Have My Thoughts Changed 6-8 Months Down the Line?
I can honestly say that both procedures have given me back my freedom, independence and my dignity. And they have removed what had become massive toilet anxiety. I literally now couldn’t give a shit when I feel as though I need a shit.
I will be honest. My ostomy procedure was not as straightforward and as easy a ride as the surgeon, the colostomy nurses or I would have liked it to have been.
I have an odd, fat, lumpy tum and it didn’t exactly play ‘ball’ from Day One. I will oversimplify here, but colostomy surgery involves cutting your colon in two and taking your rectum out of the poo process. Instead, the severed colon is passed back through a hole in your abdomen to make a pretty little raspberry on your tum, that ‘poos’ into a bag. At the same time and to keep the new structure in place your colon is stitched to your abdomen wall. Simples.
So how was I Different?
As I now understand it, my abdomen wall didn’t ‘like’ the stitches and only 50% of my colon remained stitched to the wall. This meant that my pretty little raspberry disappeared below my tummy’s surface. On my tummy itself, this created a pretty large, lunar-like crater so that the colostomy nurses struggled to get an ostomy bag solution to work for me and collect my poo.
My worst memory was sitting in my wheelchair at the side of my bed during the nursing shift change. I was trying to get the attention of the nursing team to help me change another ostomy bag. And also trying to stop blood from flowing from what looked like a gunshot wound to my tum. It really was a ‘flow’ of blood; over the course of about 5 minutes, a healthy (not) blood pool had formed around my wheelchair. Thankfully, there are no nerve endings inside your colon, so there was no pain associated with this.
I was in the hospital for around 10 days while they tried to get a bag solution to work with my wonky stoma. All the while the other 50% of my colon was spewing the remainder of my refuse – my shit, literally – inside me. Needless to say, I developed an infection and was readmitted to the hospital for a further 10 days-ish period for intravenous antibiotics to sort the infection out. It’s nobody’s fault, it’s just happened that way. I’ve learned to be philosophical about these things.
But, I’ll finish this section by reiterating that even while this was happening, the not having to try to get on a toilet to have a poo still made this surgery AMAZING!
Some Closing Thoughts
There have been many in this short six-eight month period. Where to start?
The ‘Nessie’ poo
In the days following my stoma, my bowels were a little upside down, to say the least. I cheered along with the stoma nurses when the stoma performed its first poo. It’s odd for a 53-year-old man to be celebrating pooing, but we did.
And, even though it’s disconnected from the rest of my pipework, and now redundant, my rectum is still where it always has been. My team’s concern in my first post-op week was whether the surgery team had ‘rinsed’ my rectum and the rectum end of my colon of any remaining poo. It took them a week to find out that no rinsing happened down in Theatre Two. My lower colon and rectum were still full of poo!
Apparently, the surgical team said that ‘no rinsi, is no problemo’; well, it is when you struggle to get on the loo from the get-go. I was told that “it would make its way out when the time was right.”
Wind forward to seven or eight weeks post-op and my rectum has been silent. I’m in bed at home, woken up by a gurgly tum and some long forgotten feeling of wanting a poo. I don’t have some ‘turn over, close your eyes & forget it’ feeling. I have a ‘cold sweat, grip the sides of the bed’ urge. Lisa – God bless her – despite brushing off her deep sleep, manages to get me on the commode. She then laughs at me thinking I’m having phantom poo cramps (which apparently are a real thing with stoma surgery).
Two or three minutes later and I’m in hysterics. Her head pokes around the bedroom door asking “You’ve not done one?” Not done one? By Christ, I’ve done one. After the birth contractions settled down, I peered into the bottom of the commode not knowing quite what to expect. I was met by what I’d only describe as a foot long, very healthy looking poo; not a piece of two months old clinker.
Close encounters of the 3rd kind
One of the ‘joys’ of a stoma, is choosing what type of bag you’re going to use. There are millions of the buggers. The bags are geared to meeting the needs of your stoma and whether your little raspberry, is an ‘innie’ or ‘outie.’ It’s the whole belly button conundrum again.
If you’ve got an ‘innie’ you need all manner of rings and pastes to boost the raspberry’s height and get it flush with your tummy’s surface and achieve the optimal poo disposal position.
I plumped for a two-piece system. This involves a base plate that still needs the above-mentioned buggering about, but ideally stays in situ for four days. The second piece is dead simple – a sticky bag that’s attached to the base plate. The bag pulls off the baseplate to be emptied when you’ve had a poo.
While I’ve been going through the whole healing process (and in the spirit of avoiding infection) I’ve been dealing with the simple sticky bag element. And Lisa has been exercising her nursing traits on the base plate. She’s been creating all manner of ‘height’ inducing devices, fashioned from the very wide variety of ostomy products available. These include sticky, stretchy ‘O’ rings that you can cut, stack and shape. She’s then been plugging any gaps with ostomy pastes and silicone gels. She’s been a mix of Florence Nightingale and Tracey Emin.
She’d probably never admit it but she’s at home with this. We’ve joked about her becoming fixated with the right height and shaping the ‘perfect’ stoma ‘boost’, in the same way that Richard Dreyfuss’ character was fixated with Devils Tower in Close Encounters of the Third Kind. Thank God she wasn’t using mashed potato with gravy to plug the holes! It’s the little things that keep you laughing.
Bye for now, David.
