Arseholes are like opinions. And I'm all out of arseholes.
I had Ulcerative Colitis for all of my adult life. Now I haven't got a large colon and it's amazing.
I lay on my side, as I had done many times before, looking up at a flickering screen that was relaying a live feed from a camera that was worming its merry way through my insides. Even through the faint haze of nowhere-near-enough-sedatation I could ask “What’s that? That doesn’t look good.”
“It doesn’t look … nasty” came the response from the consultant driving the camera “but you’re probably going to need an operation”.
First, let’s rewind nearly 20 years.
I was in sixth form, I was probably 17. We were having a kick about on the field next to school. I was in goal, the ball had been kicked miles away. I thought I could safely let out a cheeky fart … it turned out it wasn’t just a fart.
I thought nothing of it. Just a bug or something.
But my trips to the toilet slowly got worse and less controllable. The first doctor said I had worms. The next prescribed antibiotics. Things didn’t get better.
Lot’s more trips to the loo. Mornings were always rubbish. Staying over at friends houses after nights out became a nightmare. Then it started to affect nights out. I used toilets you never want to use. I lost quite a few pairs of boxers.
As a further background to all that, my Dad was diagnosed with bowel cancer.
Eventually we got the doctors to listen, it’s all a bit of a hazy blur now. There were tests and examinations.
It was now 2001, my final year of university. I don’t think I’d had a solid poo in two years. I had a tentative diagnosis. I was given medication to try and calm it down. To celebrate the end of our time at uni, me and mates booked a trip to NYC. I started the medication a few days before leaving.
Unfortunately they didn’t so much calm my condition down as actually turn up the symptoms to 11 ... I got to leave hasty deposits in some pretty epic places: The Empire State Building, Central Park, Shea Stadium, the top of the Twin Towers.
It was a really good holiday.
My own, private, 9/11
A couple of months after getting back I was due to have my first ever colonoscopy to nail down my diagnosis. This is where, to not sugar coat it too much, a flexible camera is given an access all areas pass to your bowels. Like some sort of MTV special, but the velvet rope isn’t quite so fancy. It’s streamed live to the TV as you lie on your side trying to think of England. (Note: Honestly they aren't so bad ... seriously, I've had a lot of experience. Never - NEVER - get put off going to one if your doctors think it's a good idea.)
The date was 11/09/2001. I don’t remember much about the procedure, the sedative seemed more potent than the ones I had later … I came round in a haze. My body went into a weird shock of uncontrollable shivering (the only time that happened). The old-school consultant pressed my stomach, said my bowel was still there and let me get on with it. I had some toast.
The Twin Towers, where I had relieved myself only a couple of months earlier, where falling down as I went through the waiting room on the way home.
It was a weird day.
I had my final diagnosis - ulcerative colitis. A chronic condition where your own immune system attacks your large bowel. No one knows why it does this. The bowel doesn’t take too kindly to the attention and gets all angry and inflamed, which means it goes into overdrive. Which means you have to go to the loo. Lots. Often with pain, sometimes with blood.
I think they removed a couple of polyps while they were in there. Something they don’t muck about with. I was given a course of steroids to calm everything down.
Steroids are amazing. Steroids are also pretty awful. They can clear inflammation in the body almost the second you start taking them. I was down to just going to the loo once a day almost instantly. I can’t remember how long I took them, but they got me to something resembling normality without having to take any other tablets. Something I could cope with.
I mean I still had to be very careful. I still had some pretty horrible experiences.
I’d met my wife by now. She put up with a lot, and she accepted the issues in her stride. She dealt brilliantly with many - literally - crappy situations when others might have bailed. She’s pretty great.
I also started work properly. I got used to ducking out of conversations when the urgency took hold. I learned how to sidle out of meetings. I knew where the toilets where wherever I went. It was fine. I coped. It was normal for me to be constantly on high alert. I kept working, I got married, had 2 kids. I muddled through quite nicely.
So nicely that I kind of dropped out of the routine of seeing consultants. You accidentally miss a six month appointment and you are unceremoniously booted out of the system. You have to go back to you GP and get referred again … I was ‘fine’. It didn’t seem to matter that I was missing my regular colonscopies. I was doing OK.
Then four years ago I was, all of a sudden, very not OK. Despite being about as fit and healthy as I’d been in years. I’ve been quite lucky in some ways. My Ulcerative Colitis was never *that* bad. Some people suffer horrifically. Constant diarrhea, 20+ trips to the loo a day, almost no control, pain, blood.
I’d never had that. Until then. It got to the point where I was literally falling asleep talking to people because my body was so rinsed out. I went to the GP, I got back into the system.
I was now ‘high risk’ as I’d had unchecked UC for so many years. I was quickly put back on the camera routine - annual check-ups now - I was given another course of steroids.
Again they worked very quickly. I literally started them the day we went on holiday to France. Steroids give you a ravenous appetite and imbue you with a strange proactiveness. They whittle away your patience, they start to weaken all you bones and some other undesirable things. But being able to walk around Brittany without a care in the world while EATING ALL THE THINGS was amazing.
After the course finished things never got back to before the flare up levels. Mornings where now a write off. I couldn’t really leave the house until after 9am. I’d be on the loo from 6.45 to before I left the door every day. Getting to work on the train was a bit rubbish for a few months … but eventually it settled down into a rhythm I could again cope with.
Mentally, damage had been done. I possibly hadn’t realised quite how much. I stopped wanting to go to things, to get out of my comfort zone so much. I still managed to cope and get by, but the constant mental strain was definitely taking a toll.
So now I was back in the consultant system it was time to try some more drugs. We tried Asacol again … the one that had made NYC so interesting. The same thing happened, it made things twice as bad.
The next step was some heavy duty immunosuppressants. The kind of drug that comes with a side effects novella and a raft of tests to make sure your body is suitable to take them. I had been taking them for about two weeks before the room was spinning and my head was in toilets. My liver had gone hyperactive and was NOPING big time.
Then a second type of immunosuppressants - similar but different. It was only three days before I had stomach cramps worrysome enough for me to phone 111 and for them to tell me to go to A&E … it was fine, but they were knocked on the head, sharpish.
The next step was trying even heavier duty, intravenous immunosuppressants.
Back on that table
It was here that I reached the point at the start of the story. My fourth regular colonoscopy since getting back in the system (I think my 10th overall). That’s when I could see the sort of lump you don’t want to see.
The consultant was very quick to say it looked ‘fine’ … ‘but it’s not the sort of thing you can leave’. It was a shape and type they couldn’t easily remove. I knew then what the likely outcome.
It takes a while for the NHS to work. It was a few months before I saw my consultant again. I’d had a letter saying the ‘Sessile Polyp’ was 70mm and probably free of anything nasty. Later he told me they’d actually had a special meeting about me, and other specialists had had a look and it was possibly showing signs of ‘Low Grade Dysplasia’. That's basically a growth that is benign now … but is harbouring cancerous thoughts. It was all a bit sobering.
Taking my length of having UC, the activity of the disease and the occurrence of this polyp my choices were now somewhat limited. Something I had expected that was always going to happen what now a very close reality - I was going to have to my large bowel removed. Like, all of it.
The consultant was pretty laid back about it. I had a couple of options open to me. I spoke to a lovely surgeon who was equally laid back. He laid out what would happen, listened to my questions, he loved drawing the bowel on a piece of paper to show what they’d remove. He then suggested going to see another surgeon about another option.
It was now about 6 months after the discovery. I went to see the second surgeon. He was not calm, or lovely. He was also not prepared, he hadn’t seen my notes, and sent his registrar in at first. What was supposed to be a chat about options quickly became a surgeon scaring the shit out of my wife and I with talks of Lots Of Cancer and “WHY HAVEN’T THEY DONE ANYTHING YET!?!?” … though he finished the appointment saying he might not do anything either.
We went back to the first surgeon - though I actually paid to see him privately to speed things up - and quickly got a surgery date for the 1st of May.
It was a big operation. I was under for 10 hours or so. I mean ... there was a lot to be done.
From the very end of the small colon all the way to the natural exit. All of it was taken out and/or sown up. This was all done via key hole. I’ve got a mere 3 or 4 tiny scars, which is mind boggling considering they removed over 5ft of organ from me. I still can’t really fathom how that works.
I came around during the 1st leg of Liverpool's Champions League semi against Barcelona. One of the first things I remember is being told is that we were 1-0 down. In between presses of my morphine button I was aware that we had lost 3-0 despite playing pretty well. Incredibly I was back at home, just a week later, to watch the 4-0 come back. I had to force myself to not engage with the match in my normal vigour ... I may have actually exploded. (I think I nearly did during the final).
It goes without saying that the NHS are absolutely amazing.
So what now? (Feel free to skip this part if you're not a fan of human waste.)
“So how does it work now you've not got the physical equipment to ... err ... you know?” I hear you ask. Well I've got a bag. Not a colostomy bag, but an Ileostomy. I am left with a bit of small bowel popping out of my abdomen. That's where the er ... output ... goes. It's then collected into a bag that is stuck to me.
It is the thing that is the punchline of hundreds of old people jokes. But there are thousands of people with them ... you may know someone who has one, but you have no idea. One of our friends casually said "Oh I've got one of them" when my wife mentioned my upcoming surgery.
It is an odd thing. And to anyone who hasn't got one ... well ... it is odd. But I knew within 36 hours of my operation that it was going to be absolutely life changing. I was sat up, still a bit groggy from ALL THE DRUGS ... and I realised I wasn't thinking about needing to go to the loo.
My brain had always had a background white noise of "You might need to go to the loo in a minute ... You might need to go to the loo in a minute ... do I need to go to the loo ... where is the nearest loo ... I think I need to go to the loo ... no I might be OK for a bit ... ooh what was that feeling ..." etc etc. And that had just disappeared. There was nothing. I could properly relax.
It was like a literal weight had been lifted from the inside of brain. A weight I had got so used to, that I hadn't realised it was there. It's hard to put in to words how amazing that is ... truth be told I'm still not sure I'm actually used to it. It's certainly affected how I am as a person ... I hope to be able to work on parts of that.
The New Way
There was a bit to learn with the new equipment. But the specialist nurses are brilliant and to be honest I am more than comfortable with bodily output. Not least with my own experiences, but I've had two kids ... dealing with poop is a non issue.
I've not had any technical problems or failings - touch wood and it hasn't limited me from doing tanything. I can get up in the morning and be out of the host in 20 minutes. That was impossible before, my body wouldn't allow it. I can go swimming - we went to the Alton Towers theme park and I spent 5 hours on slides and jacuzzi's ... I just have to wear some natty Cowel-esque high waisters.
The bottom line is - IT IS FLIPPING BRILLIANT. It's amazing how it has all besome normal and second nature.
The only thing I have to be careful with is hydration. The large bowel does a lot of your water and electrolyte intake ... and well ... I don't have that facility any more. If I don't drink enough I really feel it, I try to top up with electrolyte hydration stuff like a proper athlete, but still manage to get it wrong. Tea isn't enough, apparently.
Happy endings ... or beginnings
So there you go. A story nearly 20 years in the making. I wish I had had it done earlier - in some ways. But you don't have 10 hour operations on a whim. Plus it's easy, with a bit of hindsight, to say that.
I am lucky that this all happened last year. If it had happened in the current Corona lockdown I would have had my operation cancelled ... and the consequences of that would have been pretty grim. My lump was fine - like that camera consultant said - but it had gone further down the road towards the big C. I couldn't have waited much longer. That's quite sobering.
BUT let's stay positive. It has been quite the experience, and as I finish typing this up a year after the operation ... well I am literally a changed man. Changed, undoubtedly, for the better.