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| A little ride out with my dad, a lovely day with the top-down |
When writing here on my blog I have always attempted to make the content both interesting and honest, with some added humour and possibly some fun facts here and there. Over the years I have written about good times, and the fantastic opportunities I have been fortunate enough to have come my way, as well as sharing some of my tougher experiences, all in the hope that someone may come across my words and either take inspiration or it might possibly help them in some way when experiencing what can be embarrassing or still stigmatised topics, things like mental health or problems in relation to other bodily functions.
I guess if you can read the words of someone who is going through a similar thing, my way of thinking is "I hope you understand you are not the only one" and possibly, or should I say hopefully you can reach out and find the courage and confidence to talk to someone, as in my experience that always helps.
And so I really don't want this blog to come across as all doom and gloom. I am going to try to as always leave it with a positive spin, it's what helps me get through.
Let's have a quick recap just in case you haven't read any of my previous blogs. Oh and in keeping it real I have reverted to my couldn't give a fuck attitude, so if you are offended at this point and think because I have my sweary head on the content is no less valuable, well thanks for reading to this point.
So in May of last year 2024, I took ill with what I thought was a virus. I had the usual upset tummy and the shits. I knew things were slightly more serious as after shitting through the eye of a needle for about a week, probably going to the bog about 10 times a day and feeling like death warmed up things were not improving.
Long story short after visiting my GP and getting a referral to the Inflammatory Bowel Disease Clinic (IBD), things were set in motion for various tests, most as you can imagine being very embarrassing. Now this is where my first piece of advice comes in for anyone going through this experience early on. I happen to work in a hospital and I can assure you we deal with all sorts as part of our jobs. I would like you to think of it this way going to hospital with a problem should be no more embarrassing than say going to get your car serviced, or heading out and buying a new TV. By that I mean the staff in each department are trained to look after you. So when you are thinking "Omg such and such is going to see my bits" or " I can't bare the thought of someone sticking either a finger or camera up my arse, how embarrassing". I know it is a natural reaction for many people, and that's okay. However, If you can stop and think of it in another way, you will see it is just a job that these professional doctors and nurses, who are trained, and I can assure you they will have seen many other people's bits and bobs, and seen just about every aliment the human body can go through. For them, it is just another day at the office. I think at times we can all get so wrapped up in our own little worlds and psyche, and in our heads make ourselves out to be super special, "The only one", and don't get me wrong you are special and you are the only one, however, in the grand scheme of things no one really cares about that zit on your face, if you are carrying a spare tyre, or you are walking with a limp. I mean farting in a waiting room and not admitting to it, then looking around to see if anyone heard you, is a totally different type of embarrassing situation, yep you can't blame the dog on this occasion.
Anyhoo after several colonoscopies, a sigmoidoscopy, an ultrasound and an MRI I was diagnosed with Ulcerative Colitis and this is where the title of this particular blog comes in. You see Ulcerative Colitis, although not fully understood could be caused by the immune system going slightly tits up and then your own body starts attacking itself. This illness as I have learnt can be debilitating, and I am fortunate as apparently mine is only classed as being mild. That said it has caused me to be off work numerous times amounting to over 6 months.
Treatment-wise last year I received a course of prednisolone a strong steroid and had to take additional calcium supplements with this. The drug was amazing, helping me feel relatively back to normal in a few days. The only side effect that I noticed was that I began eating like a proverbial horse for around 2 months. Unfortunately after a further month or so and going on to a drug called Octasa to try and treat my UC I had some really bad side effects after only being on the medication for 3 days. I was all over the shop, couldn't concentrate, had really bad tinnitus, and my work colleagues described me as like someone on speed. My UC began to flare up once again so I had to have another course of steroids, which you are only allowed to have twice per year. So that was my two courses in 2024.
I was then started on another treatment, this was Salofalk Granules. I started this in I believe late November and initially thought they were working. However in December of 2024 my first ride out on my new bike, when I happened to do my Achilles in. I thought I had caught a flu virus. This virus and flu-like symptoms persisted for over 4 months and just wouldn't go away. I had to go to see my GP and ended up having two courses of antibiotics I also had to further go back as I felt I had gotten sinusitis, something I had never suffered with before.
It wasn't until I started researching the Salofalk Granules that I discovered some of there side effects. I could list them off and say "Yep got that, that and that!"
Joint pain, severe heartburn, runny nose, sneezing, sore throat and congestion. Flu-like symptoms include extreme tiredness, difficulty urinating, decreased appetite, generally unwell feeling, and nausea.
Something else strange occurred, however, it was not listed as a side effect of the Salofalk. I began getting the most severe and extremely frightening panic and anxiety attacks. I am not sure if these were brought on by not being able to breathe on a night. At times I had this sense of drowning whenever I lay my head on my pillow. My sinuses were killing me and I coughed so much that I ended up with a blood blister on my uvula, that dangly bit at the back of your throat.
I am afraid to say the panic attacks have remained and I now encounter them every day, and even worse they have presented themselves during the day. They come out of the blue over the stupidest of thoughts. For instance, if I cannot remember a word, a name, a movie or a song lyric. If I see one of those daft puzzles on a Facebook page, which I can't immediately solve, or if I am flicking through the channels of the TV and cannot find something to watch. In reality, anything can set them off. Apparently, it is your body reacting to its primaeval fight or flight response, hey I am a fucking one-legged bloke so there is nee way I can carry out the flight part, so I have to just hyperventilate, and try to fight the feelings of insanity. I discovered one thing that kind of helped. I now have to sleep with my bedroom window wide open, so I can feel the cool night air. The only drawback is, it can be fucking freezing on a night and I can't pull. The duvet over my head or I start flapping. I know it sounds funny, but unless you have encountered these sorts of attacks, they are absolutely terrible.
Moving along my whole world has felt like it has come to a standstill and not for the first time in my life. Memories of Black Dogs and their shadow, along with bottomless black holes come to mind. Dark places I really, really do not want to revisit. Following my amputation, cycling became my way of releasing a lot of stress in my life. Unfortunately due to the UC and also as mentioned hurting my Achilles, well I have found myself getting more and more isolated.
Work became very stressful, and I was in so much pain and discomfort along with fatigue that I dropped my hours, going from 30, down to 24. I had to decide whether I could get through the two full days and two half days I worked without having a trouser accident. Morning became very, very stressful, " Did I need to go to the toilet, once maybe twice, even three times, as we know three is a charm before going to work". Getting on about embarrassment I am one of those people who absolutely hates going to any other toilet other than the one at home. I know, I know it sounds absolutely bonkers. By that I mean I don't mind going for a tinkle, but I hate going for a dump, even now more so that I have a stupid fake leg that makes it hard to sit square on a toilet. So logistically going anywhere other than home is a complete nightmare.
And that just about takes us to the beginning of this week, well Sunday to be exact. My UC began flaring up on Friday and Saturday, you see I had stopped taking the Salofalk on the 16th of March, I just couldn't tolerate the side effects. I decided to go to work and try my best. Starting at 8:00 am I was only there until 10:00 am, and had to inform my colleagues "I need to go home I feel really unwell".
Further contact with my IBD nurse proved difficult as the email messages were so slow, so I decided to wait to have a chat with my GP who I had already had an arranged telephone appointment with on Tuesday. I was so stressed and anxious that I just blurted everything out. My Doctor was absolutely fantastic in listening to my concerns, and in her response and call to action. She informed me she would get in touch with the gastroenterology department and get things sorted, which she did. I was informed I would need to start on another course of steroids and the following day I was called by the IBD nurse and informed an appointment had been made for me to have another sigmoidoscopy, so that was yesterday, or Thursday the 10th of April as I type. "Oh, how wonderful!!!" and I hope from that you get my sarcastic tone and not the fact I was super thrilled. More fingers up my corn hole followed by the most uncomfortable camera, which felt like it was doing a loop the loop around the many curves of my inner bowl. At one point I thought the machine had broken down and the bloody thing was stuck up my arse. Especially as it felt like the endoscopist was doing some sort of a jiggy, jiggy action to try to remove it.
Upon having the procedure done and leaving the hospital with my trusty chauffeur, The Ern, as we drove home I commented to my dad "I cannot believe anyone would have something stuck up their bottom for mere fun" I can recall seeing a TV programme yonks ago, where they were talking about the types of "Accidents - he says with an undercurrent of a cough", where people came in with various things stuck up their bottoms. It's unbelievable... I mean why the fuck would you want to stick the likes of Buzz Light Year up your hoop, he is never going to get to infinity and beyond up there poor bloke. Then there are things and I shit you not like glass bottles, light bulbs, a fucking live eel, don't think it was electric! Love eggs, a jar of instant coffee with pins in the lid, "Why and what the fuck, how would it even fit", concrete and a can of deodorant, do these people not read the instructions, it's supposed to be used on the outside. The list is endless. It really does make you think that humans are a law to themselves and the most dangerous animal since time began.
Ooh, and whilst I am on about interesting facts, well I am not sure the last bit was interesting, more fucking scary, but do you know what the only creature here on earth is that can go for a dump and produce cube-shaped poo? And I am not making this up, the poo actually looks like little oXo cubes. It is a wombat. They have evolved over the years to have a poo in the shape of a cube so that they can leave the little presents as markers and they don't roll away when marking out their territory. Kind of handy if you get lost and don't have a ball of string, just have a shit and leave a neat little trail I guess. Anyhoo hope it hasn't put you off having an Oxo.
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| Cube-shaped poo, who knew? |
If you are going in for a colonoscopy you can have a light sedative along with gas and air. I would suggest having both of these, it makes an unpleasant procedure a lot more comfortable. The worst part I can assure you of a colonoscopy is having to drink the horrible laxative drink. If you can, make sure you try to get all of the first 2 litres down, as if like me you can't and try and cheat, then your endoscopist can't see clearly during your procedure, well you may have to have another appointment made and go through the whole thing again, then they may ask you to drink 4 litres of the vial stuff. The sigmoidoscopy is easier in the prep a quick self-inflicted enema, which I can only describe as what I think it would feel like to squirt a bottle of Fairy Liquid up your arsehole, then after a few minutes you get the most awful burning sensation and as you rush to the toilet it just explodes at a rate of knots. The sigmoidoscopy although it doesn't go as far up in the investigative procedure I found was a lot more uncomfortable, and sedation is not generally offered, though you can request gas and air, which to be honest isn't great.
Results are in Mayo1 which I think means mild UC. I have patchy areas of inflammation. If this is the case I just can't fathom how it is making me feel so unwell during a flare-up.
Anyhoo at the moment, three days on, and with the steroids, I feel loads better. I am ravenous and can pretty much eat anything I want, and now watch my prosthetic limb won't fit in a week or so as I will become increasingly porkie. The meds have also enabled me to go out for a few short walks with my dad, something I am really grateful to be able to do. Each day spent with my dad as he is now getting on, and will be 85 this November is a special day. The older you get, the more you come to realise other people who are dear to you also age, and none of us are here forever. So that time spent in someone's company doing the simplest of things is very special.
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| Out for a little walk with The Ern |
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The Ern over by a reservoir on the moors near Consett
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| My dear old dad |
I feel I have tumbled down that big mountain of hope and I am at the very bottom once again. My choices of what I decide to do next could be considered either easy or difficult. I could choose to just give up and let all these setbacks define me, or I could choose to pick myself up, face life's adversities and take one step at a time and climb.I am not ready to quit just yet!
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Over by the pond at Chapman Wells
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| Chapman Wells and the pond |
As always thanks for reading, hopefully, people don't don't think I am a little too out there. I just think embarrassing subjects need to be talked about and I can talk "shit with anyone LoL"
A final word of advice "It's not big and it's not clever to intentionally go sticking things up your Bung Hole"
