I had a whole blog planned out for this weekend. I’ve mad notes throughout the week and I was really looking forward to writing it… but plans change. Maybe I’ll get around to the main event tomorrow but for now, let me set the scene for this blog right here.
It’s almost 8pm on a Friday night and in true Katerini style I am sat in my pyjamas with tea in my blog writing mug.
There are no chicken crisps this time but I do have a couple of chocolate eclairs in the fridge that mum bought for me – thanks mum.
The sad thing is, right this second I can’t stomach those eclairs. I’m looking at them and my eyes are saying…
…but everything else in me says…
“…not right now love.”
Well, take a seat guys because this will either make you roar with laughter or you’ll end up closing your browser in search of a more appealing subject.
Everyone knows I have a stoma and everyone knows her name is Wilomena. What most people don’t know is that Wilomena is not very well and hasn’t been for quite some time.
I knew there was a problem about two and a half years ago when my little weird button shaped blob turned into a tennis ball poking out of my tummy. It was massive! It twisted and it grinded and I felt sick and the only way I can describe the pain is by asking you to imagine what it might feel like if someone had the fist of a giant and they were squeezing your organs and crushing them…then letting go…and then changing their mind and crushing them again.
I knew this wasn’t right, so I saw the stoma nurse and she said…
“…everyone’s stoma sticks out.”
“But mine didn’t look like this before.”
“They change, it’s normal.”
But the pain wasn’t normal. And neither was it’s appearance so I went to the GP.
“Lose some weight, it’ll feel much better.”
So I did. Still felt the same. Then I got a mystery infection and I was admitted to a surgical assessment ward at the Royal Bolton Hospital but they didn’t look at it and they didn’t treat the infection. The surgeon didn’t do anything except say…
“You’re too young to have this type of stoma. If it was me, I wouldn’t have done it.”
Well thank the lord it wasn’t him! Not to be dramatic but I’m pretty sure I’d be dead if my life was in his hands.
I asked another GP to refer me back to my surgeon at Wythenshawe. She did…she referred me to the wrong surgical department…
Long story short, welcome Covid! And I’ve been waiting to have a face to face appointment with my actual surgeon since March 2020.
Has time become a healer? … No.
Has my stoma changed? … No. It still looks like a freaky tennis ball.
Am I still in pain? … YES! I am! I am still in pain and guess what? Barely anybody knows because I just get on with it.
I’ve been waiting for the day for another trip to A&E because without treating the problem it was inevitable and I know that due to Covid, no one is really getting the care they need and if you don’t complain you don’t get seen.
DISCLAIMER: If anyone is eating their midnight snack or drinking your morning coffee, or whatever you’re doing right now; this bit might not be for you and I am not offended if you do decide to close your browser but I say this every time. This blog is for truth, my truth. And I’m not about to tell any lies when it comes to my health or my life in general because while I may not tell people on a daily basis how pants I feel, this is the space for you to know that.
If you’ve ever had Diarrhoea pains you’ll know how awful they are and last Sunday night that’s what I had. Let me tell you now…when you don’t use your bum like a normal person, that feeling is weird! I still have my colon and sometimes it wakes up and it decides it needs to get rid of bits and pieces that are clinging to its walls and the only way of doing that is by pooping like a normal person. Sounds simple doesn’t it? But god! It takes hours, days even, and it just wipes me the hell out.
I’d been looking forward to the bank holiday weekend all week. Three days off work, a couple of lie ins, shop for a skirt for my uniform. But no, my bowel had other ideas.
With every hour of Sunday night and all day Monday the pain just kept on coming and I felt sick, I didn’t eat, I could hardly drink, I was cold, hot, cold, hot…
It got to 11pm on Monday night and I just couldn’t take it. Nothing was coming out and everything hurt, all over. With every rectal strain (sorry) Wilomena was the size of a tennis ball with the threat of bursting into flames…
…so it was a trip to A&E. Wythenshawe A&E, where I knew I’d be seen.
Credit where it’s due, Wythenshawe Hospital has a very civilised A&E department. I mean, yes it was a Monday night and not much was going on and there were very few people in there, but it really was quite nice.
Covid hasn’t made life easy and every single person in that A&E department was waiting on their own. I’ve never had the experience of going to any hospital appointment on my own, I’m lucky that I’ve always had someone with me so this was a whole new ball game. I had to fight my own corner and put my brave pants on.
I admit having a clearly visible problem probably went in my favour. I was triaged within 20 minutes, bloods taken in 10 and a cannula shoved in ready to party. I waited about an hour for them to get the results and after that they popped me in a little room with a bed, a blanket and pain killers and the nurse said…
“Get some rest and the surgeon will come and see you in the morning.”
You know when you’re being looked after, you know when you’re being taken seriously and as I was lying on this really awful bed, completely alone and no idea what was about to happen to me my bum hole opened the flood gates and released this horrendous gunky, sludgy, chunky stuff that looks like brain matter and the stench! I am so sorry; I have never encountered a dead body before but I’m pretty sure something died inside me at some point because that was the kind of smell that was coming out of my bum crack!
As well as the pain, the confusion and by this time the delirium, all I could think was…
“…what time should I call my manager and tell her I can’t come into work?”
At 7am (ish) the door to my little room opened and in walks the surgeon – Dr O’Connor. He works directly with the surgeon who formed Wilomena – Ms Telford, so this felt like a good start! A really good start. He was young, but that was okay because we’ve been through this before so it’s all good. He had read my notes and he knew all about my stupid GP and the ridiculously long wait for a face to face appointment with Ms Telford and he said…
“…I’m so sorry, it should never take this long for a face to face appointment, even with Covid.”
I already loved him! The first thing he wanted to do was whack my bag off and take a peek at Wilomena to get to the root of the problem. Just like that!
“Let’s take your bag off and see what’s going on in there.”
So standing in my Sainsbury’s pyjamas and my beehive hair that’s forgotten what a brush looks like, and baring in mind I’ve just excreted the brains of a million corpses that have been lying desolate in my colon for god knows how long, I take off my bag.
True to form, Wilomena decided not to play ball this time and she looked like a perfectly normal stoma. Seriously! Of all times to mess around, she chooses now to look sheepish! But Dr O’Connor wasn’t phased.
“Let’s lie you flat and take another look and see what’s going on with the other end too.”
If you have read my first blog about what I had to endure in order to get Wilomena, you will remember the ridiculous tests that I had to have.
Here’s the link if you want to remind yourself: http://blog.bipolar-with-a-stoma.co.uk/2020/12/05/wilomena/
As a result of those tests I have lost any feeling of embarrassment when it comes to being examined. When you’re desperate for help, you end up accepting that help regardless of anyone’s gender, so when the nice, young, male doctor had to pop his finger up my bottom I didn’t even flinch. At this point I was more concerned about the need to brush my hair than I was anything else.
But the best thing! The best thing in the whole wide world was the moment when he had to insert his finger right though the hole of Wilomena’s little mouth. It didn’t hurt. Not at all. Despite what you might think, having part of your insides on your outside it doesn’t actually have any feeling. You can cut your leg and it hurts but squeeze your intestines and you won’t even flinch.
I only noticed some kind of feeling when he found the problem…
I can’t for the life of me remember what the medical term was that he used but when he was having a poke around he found a twist or a knot in part of my small intestines which has prolapsed and is pushing against Wilomena. This makes her bulge and stick out and explains why she’s so deformed.
So I need another operation to fix it and possibly another stoma formed (don’t worry, I’ve already decided on a name) and along with that I’ll probably need my colon removed.
Don’t be sad. Please don’t pity me and don’t tell me you’re sorry for me because right now I’m not sorry. Just like it was four years ago, this is a solution to a problem. It’s not great and it’s not ideal…but you know what? It’s life, it’s my life. Don’t get me wrong I am angry at my stoma nurse, I’m insulted by one GP and fuming with the other and if me and Covid ever meet on a night out I will throw a drink over its head for messing up the world.
Now you might be wondering what choking on a carrot has got to do with Wilomena and a dodgy colon? Well, I came home from hospital on Tuesday morning and I’ll be honest, it wasn’t pretty. I was pretty much a vegetable on the sofa the whole day and more or less the same on Wednesday.
I hate having to take any time off work and I kept thinking…
What about the petty cash?
What if they run out of paperwork in the office?
Who’s going to do the order?
What if something needs reporting like a broken sink or a dodgy doorknob?
But my other worry was I had some training on Thursday and I didn’t know that it was open to me because I’m just the admin so I was really really happy when my manager put me forward to do it. So I went.
Admittedly I felt a bit out of my depth. I am not a medical professional and maybe as an admin I should know my place and stay in it, but sometimes in life we get opportunities that come our way and no matter what box those around us think we should stay in; it really is up to ourselves to decide what opportunities we think we might benefit from.
Usually I hate any kind of training that’s out of the workplace because there’s always a break and a lunch break and I’m always left to my own devices but this was a little different; I knew all the people on the course and I was included and it was really nice but…man I felt lousy. My back hurt, my stomach hurt, Wilomena was back to her tennis ball self, I was hot and cold and I really didn’t want to eat any food…but you know when your body says…
“…I know you don’t want to but you really need to just feed me something…”
…so I bought those little carrot sticks with the houmous dip and I was actually really looking forward to them – I know that sounds weird – and when the lunch break came around I decided to just stay in the room and munch on them. Then the course leader, who I really like and really respect and would have really loved to have a conversation with, asked me a question just as I put the first carrot stick in my mouth and a tiny tiny tiny tiny, I can’t stress enough how tiny this piece of carrot was that lodged itself in my throat and I just started choking – not like Heimlich choking but bad enough to need to leave the room and try and cough it out.
The toilet was right behind the room so I didn’t want to cough like a Covid patient, I wanted to cough like a lady and not like I was coughing up a demon or another dead body, but attempting to do it discreetly just made the whole thing worse.
By the time I was able to go back into the room, red eyed with a voice like a T-Rex people were filtering in and word of my choking catastrophe was spreading. Not only was it spreading but the discussion was going on for what felt like a really long time.
All I could think was…
“I’ve just spent a night in hospital. I’ve just had a really young doctor stick his fingers up my jacksy and then down the hole of my knotted stoma. I need my colon taking out, I don’t know when that will be and until that happens I’m going to have to put up with pain and bits of dead people falling out of a bum hole that forgets how to work! So in the grand scheme of things…choking on a carrot is the least of my problems right now.
That was the first time I felt sorry for myself. Only a little bit, but I did, I felt sorry for myself.
I went back to work today and I got on with my usual job. I still feel a bit pants and when anyone asked me where I’d been I did tell them the truth. People said…
“Why haven’t you said anything?”
“You must be in a lot of pain.”
“I didn’t realise it was that bad.”
The truth is my stoma pain isn’t anyone else’s pain. I don’t like to whinge, I don’t like to complain and as a result of that people have no idea. I do exactly the same with Bernard. When I’m having a Bipolar episode no one knows because most of the time I can appear completely normal.
I have this – opinion, I guess – that me complaining or airing my health problems makes no difference to anyone else’s life, they can’t do anything about it so why tell them? I would rather concentrate on their pain. I don’t for one second want people to stop telling me how they’re feeling because you do matter and your health matters to me and I will do whatever I can to make you feel better. I will, that’s a promise.
I didn’t intend this blog to be so long but maybe I needed to get it out more than I thought. Maybe I need to acknowledge my situation and accept that I need to take better care of myself and just let people help me if they really want to.
I wish I’d come to this realisation weeks, months, maybe even years ago…
...before choking on a carrot…
Dedicated to Dr O’Connor. You may never see this and you may never see me again. But thank you for doing something. Thank you for being the only medical professional who took action and didn’t let me down. Me, Wilomena and my colon will remember you with great fondness, always.