About Me
"In hindsight, this may have been the start of my journey."
Hi guys, let me introduce myself.
My name is Ashby and I have a stoma. I. Have. A. Stoma. Those are words that I never imagined I'd be putting in to a sentence, but hey, here we are.
Get comfortable, get snacks, and maybe a high caffeine drink (You'll probably need it) as here is my story that led me to become an Ostomate.
Let me take you back to September 2014. I was enjoying life without a care in the world when one day I started to feel unwell. I couldn't stop going to the toilet with bad diarrhoea, had no energy at all, and generally could not function as normal. After a good week of this, I'd lost weight, barely eaten anything, and Casper the ghost had more colour in his face than I did. A trip to the docs and there wasn't an obvious reason for the episode so I just had to wait it out.
I'd ventured back to work after 1 week off but had to go home early most days as I was absolutely shattered by lunch time.
It took around 4-6 weeks before I felt "Normal" again.
In hindsight, this may have been the start of my journey.
After that episode, I didn't think much of it but as the years progressed, I (very) slowly started to realise something wasn't quite right. I was going to the toilet for a No. 2 more often than most people do. I'm nowhere near a good example of a healthy diet and lifestyle so I put it down to that. You know, poor food choices, late night takeaways, lack of exercise (Sorry, did you say extra fries?) etc.
The frequency was an issue, but that in itself wasn't too much of an issue - Well, to me anyway, others wanting to use the facilities may argue otherwise.
When frequency decided to join forces with urgency, that's when things really took a bit of a turn..
"This was by far the most embarrassed I've been. A grown man soiling himself in the street is not a good look..."
Let me explain further the "Urgency" I refer to. The frequency, as mentioned, did mean that my Social Media time was amazing as sitting on the loo offered plenty of TikTok/Facebook time etc. The urgency though, that was something new. This new symptom meant that I'd have the sudden urge to unleash hell in the toilet, so that meant that the toilet trips included a sprint to get there.
This now posed a new problem - What happens if I can't find a toilet or I can't hold on until I get there?
Sadly, that question was answered in the most unfortunate way... One lunchtime, I'd met a friend for food and a couple of pints (It genuinely was only a couple). When it was time to go our separate ways, I thought to myself "I could probably do with a poo" but decided that all would be well and that I could walk the 15 minutes to get home without issue.
The further I got from the pub, the urgency became worse and worse. I'd gone past the "Point Of No Return" so I just had to continue towards home. I was literally roughly 100m from home when it happened. Without any need to push, boom, there it was... As I knew it was about to happen, I'd backed myself in to a gap next to a bush as it would give me the option to hide my accident a bit. I could feel some sliding down my leg (I was wearing shorts) and there was a considerable amount already on the floor (and part of my shoe). At this point, as you can imagine, I was panicking a little as I had to try and work out how to get 100m with no one noticing the poonami that had taken place. Luckily, I knew there was someone in at home so I got the mobile out, called home, and said "I've crapped myself round the corner, can you grab my black towel from my room and come and meet me now?!" The funniest point of that conversation was when a chunk of poo, that had clearly been clinging on to my cheeks, decided to drop to which I commented "A massive chunk has just plummeted down my leg and hit the floor..." The housemate arrived with said black towel, I wrapped it around my lower half and then had to do a bit of a waddle home. On arrival, I went straight upstairs and got in the shower fully clothed...
This was by far the most embarrassed I've been. A grown man soiling himself in the street is not a good look...
That incident was the first of many. Some were slight accidents just as I was getting to the loo so were just light underwear soilage whereas there was another poonami when I was on my way to my holiday destination. I'd stopped at Cobham Services (M25) on my way to Kent where I had a little property booked for the week. I made the fatal mistake of thinking that I could eat something and not hit any issues. I'd already popped a couple of Loperamide before heading off and felt quite bunged up so I thought all would be well. All I ate was a small portion of chips and proceeded on my way. About 10 minutes after leaving Cobham, the gripey feeling started and I knew I was in trouble. From previous journeys, I knew there were no more (recognised) services available on the M25 anywhere near me so I was going to have to improvise. I mean improvise in the loosest (Pun absolutely intended) of senses as it was more blind panic of trying to find somewhere that I could abandon the car and hide behind to unleash hell from the back passage... I left the M25, ended up going down this random road, and met a horse rider coming the other way. Being the good person I am, I slowed, stopped, and allowed the rider to go past as to not spook the horse. I received thanks from them but my sphincter at this point was not thanking anyone. I continued driving, desperately trying to find somewhere, and then got to the end of the road where there was a car park and woods. RESULT - I'VE FOUND SOMEWHERE THAT I CAN PARK AND HIDE! This celebration was short lived as I managed to get maybe 1m from the car when the bomb bay doors opened... Just as the first incident, we was on the floor, my shoe, there were skid marks going down my leg etc. That was just the first half of the fun as I still needed to clean myself up and change my bottom half clothes...
Bad times... Not quite the start to my holiday I was looking for.
"I must have looked like someone competing in the walking race at the Olympics as they always look like they're about to/have crapped themselves."
When Covid hit, that added an extra hurdle on my daily routine/safety net. I have a 15 minute walk to work and it had got to the point where I was, more often that not, having to stop at a cafe for an emergency stop. It had got to a point where I couldn't do a 15 minute walk to work without having to stop for another crap. By the time of leaving home each morning I would have already had 3 craps (One straight after waking, one before putting shoes on, and one literally the last thing before leaving), so to be needing to do a 4th one was quite embarrassing. This stop, although annoying, was doable before Covid but when Covid hit and all the cafes were closed, I had no halfway emergency loo. Therefore, it meant that every walk to work was a walk down "Anxiety Lane" and was a lottery as to what state I'd be in once I got to work. On the days when things were not looking good, I must have looked like someone competing in the walking race at the Olympics as they always look like they're about to/have crapped themselves. I just knew that I had to limit the length of my stride and keep those cheeks together and I'd hopefully make it.
As Covid continued and I did some working from home, I realised that things really weren't too good. I was, on average, crapping between 12 and 20 times a day which really wasn't a good thing when people were panic buying toilet roll. I was due to have a telephone appointment with my GP and it was at that point that I told him about my toilet issues. I finally admitted there was a problem and stopped doing the stubborn person act of putting it off. My GP referred me to gastro who booked me in for a colonoscopy and yes, that is indeed a camera up the bum... I remember getting the information about the colonoscopy and how I needed to "Prep the bowel" the night before. To prep the bowel, it's a case of clearing it all out, ALL... OUT... The night before I was going to have to drink 2 litres of a laxative drink... I admit, I broke down at this point as the issue I had was the risk of crapping myself and now I was going to exacerbate that by taking something that would make me even more likely to crap myself...
"Yes, yes I do. To have that camera up there requires sedation or at least the Doc needs to take me to dinner first!"
The day before the colonoscopy arrived and that evening I got my 2 litres of lemon flavoured MoviPrep good to go. My first glass and you know what, it didn't taste too bad actually. But as I drank more and more, it started to taste quite sickly and wasn't as pleasant as it first seemed. Obviously, it was going in ok, but what about the next stage? Well, for an incredible 80 minutes, nothing happened and I was started to question whether I'd been sent the right stuff. It then started to kick in as I was getting cramps, sweats, and a sense of impending doom. I proceeded to the toilet at speed, sat down, and without any effort, the world fell out my arse. I can only describe it being like when you put a Mentos in Diet Coke, that was the sort of force (and consistency) that was on show. For the next couple of hours, my life was spent within yards of the loo as it was too much of a risk to be anywhere else.
By the time I was heading off to bed, there was no issue of a potential soling of the bedsheets as there was nothing left. It felt like I'd successfully emptied everything, not just crap but important organs also.
The next morning, I headed off to the hospital for my photoshoot and checked in with reception. The initial part of the appointment was the intake nurse asking a number of questions to make sure you were good to go. First question was name and DOB, to which I answered and they said "We have to make sure you are you." to which I replied with "Well I am more than happy to not be me if it means I don't have a 1-2m long camera up my arse..." After a brief chuckle, we continued with the questions - "Did you take the MoviPrep last night and was it successful?" There was only one way I could answer that, "Yes, and HELL YES." When they'd completed the questions and they were happy, they gave me the most fetching pair of disposable surgical shorts that had a "Butt flap" and one of those horrible hospital gowns that are never big enough to cover your backside...
I neglected to tell you about the most important question they asked. I did this on purpose because I felt I needed to highlight it. "Do you wish to have sedation?" Absolutely I wanted sedation, I was not looking forward to this at all. My answer "Yes, yes I do. To have that camera up there requires sedation or at least the Doc needs to take me to dinner first!"
"I didn't have to wait too long for my results as they told me there and then in the recovery section."
After the procedure - Which was not painful, but was very uncomfortable. I'm glad I had the sedation as I don't think I would have done overly well without it. The sedation itself made me feel slightly drunk, a little spaced out, but not to the extent that I was incoherent - Well, no more than normal anyway.
I was wheeled to the recovery section where they offer you a drink and some biscuits as you won't have eaten anything all day. I'm not a hot drink person so went for orange squash and some bourbon biscuits. It felt good to get some food in me but at the same time, that feeling at the back of my mind kicked in - What goes in, must come out... How long until I was going to need to go to the loo already?
A nurse approached to ask how I was doing and it soon became apparent that I didn't have to wait too long for my results as they told me there and then in the recovery section. That nurse was previously an IBD (Inflammatory Bowel Disease) nurse and was able to explain the results. Pan Colitis was listed on the paper, basically my whole colon was inflamed with little polyps/ulcers (which they'd taken samples of to do tests on) and it was confirmed that I had Ulcerative Colitis. UC is an auto-immune condition where the body attacks itself causing the colon to become inflamed and therefore produces lots of mucus. That's why you go to the toilet more, because the body is making the colon like a slip 'n' slide and the poo flies through. Sometimes, a toilet visit is mainly mucus which would explain that even on days when I'd barely eaten, I could still go to the toilet many, many times. July 2021 and I had a diagnosis, I had a reason for the excessive toilet trips. It's a disease that they are still trying to find the cause and recently they have had a breakthrough and found out that genetics are a factor. I was glad to know that it wasn't really something that I could have avoided, it was potentially just a clock ticking away with an alarm that no one could see the time on.
"There's no cure for Ulcerative Colitis, only remission and management."
I got an appointment with the IBD team after that diagnosis to discuss going forward. It was that point I found out that there's no cure for Ulcerative Colitis, only remission and management. What that means is that you cannot be free from it, but you can force it in to remission and then manage it in a way that it shouldn't be debilitating.
Until December 2021 I was taking something called Adalimumab through an auto-injector, basically like an epi-pen. I'd not really noticed any difference to my daily toilet trips before I went in for a flexible sigmoidoscopy (similar to a colonoscopy) and the consultant asked whether there was any improvement. As there wasn't, he got me to double my dose.
Generally, the medications for UC are immunosuppressants which therefore meant that my immune system was not going to be as good at fighting away any germs etc. Being on those during Covid was a worrying experience as it meant that I was at a greater risk of catching it and my body might struggle to fight it. Mid January, after almost 2 years of dodging it, I went down with Covid. Concerned with what I should do with my medication, I contacted the IBD team to check what to do as I was due to take my next dose just after testing positive - Do I take it while Covid positive and suppress my immune system more whilst fighting it or should I delay?
I received a call back from the IBD team, was given advice, and then they asked how the double dose of Adalimumab had been going. Sadly, again, the answer was that there was no real difference. I was then surprised to be asked to go to A&E to get some emergency bloods done. That was an interesting experience as I went to A&E, explained I'd been asked to come in, but equally had to tell them that I was Covid positive. Therefore I was sectioned off away from everyone and even got my own side room for when they came to see me. After a good few hours, I'd had my bloods done and they decided to send me home but asked to come back in a week, go to the IBD Day Case Clinic, have some more bloods done, and they then come up with a new plan.
I did as asked, went home, recovered from Covid, and then headed in the next week. Bloods done, results came back, and they wanted to keep me in! As there wasn't currently a bed for me and I needed to get supplies, clothes, and entertainment, I managed to get them to agree to allow me home briefly to collect stuff. They didn't want to release me but I couldn't really get someone else to find the various things I needed. A brief visit home to grab my things and back to the IBD Day Case Clinic it was. I ended up in the Clinic up early evening as there was nowhere for me to go... Eventually, a bed became available on the ward so I was able to "move in" up on the 7th floor.
This was the start of a week long visit where I was pumped full of fluids, steroids (up the bum, twice a day...), and some different medication. The meds started to work, everything was slowing down, and I even went something crazy like 17 hours without a poo - Just annoying that they wanted a sample from me at the time... I got the good news that I was able to go home, which I was very happy about as after 2 days in a side room with my own window, I'd been moved to a main ward bay with 3 others. It was like a sauna in there and the first night in the bay, I got 1 hour of sleep because it was just too hot. It was a vicious circle as I was constantly on fluids for dehydration, but it was so hot that I was sweating like crazy. It was coming out just as fast as it was going in... I was released back in to society to continue treatment at home and go back to work etc.
The next 12 months were a constant string of appointments, medication changes when things stopped working, and eventually, it got a point where the docs said what I'd been dreading.
"I knew this was last chance saloon and if that also failed, surgery to remove the colon was the only remaining option."
The next 12 months were a constant string of appointments, medication changes when things stopped working, and eventually, it got a point where the docs said what I'd been dreading. They'd tried so many different meds that they were at the point where it was very unlikely that we were going to find one that would kick it in to remission ready for management. They agreed to one last change, I knew this was last chance saloon and if that also failed, surgery to remove the colon was the only remaining option.
As the doctors predicted, and I feared, this last medication did not work. I could probably have fought to continue trying different ones but deep down I knew that it would be futile. I therefore decided to make the decision myself to have the surgery. Some people aren't lucky enough to have that decision, for some it's because they have no other choice, some don't even know about it until they wake up after surgery for something else. I sort of had that position of making the decision on my terms and I think that helped with the whole process.
I met with the surgeon, I took a whole list of questions, and said to him "You're most likely going to answer most of these questions in the normal explanation but can I go through these first because all I will be thinking about while you're speaking is my questions so none of what you're saying will go in." He was happy to do that, we went thought my questions, he answered them, and then he was able to do the rest of his bit. That helped immensely as again, I felt in control of it all.
I got my surgery scheduled for the start of July 2023 - Almost 2 years to the day from date of diagnosis.
If you've managed to get through all of this, kudos to you, I struggled and I was writing the damn thing. My story continues on my blog page, if you want to know more about the surgery and post surgery, please head there to continue the adventure.