So, what’s this ELAPE thing then? When I heard I had to have one, I checked online and couldn't find that much in terms of lived experience. This is my experience (so far), and I’ve concentrated on the op and aftermath, rather than the saga of getting there. For context, I’m a 53 year old male, non-smoker, social drinker and I was pretty fit before this all came along. Not mega fit, but not bad.
I went to the GP in August 2023 with symptoms, and by the end of September had had a colonoscopy and had confirmation that I had a lower rectal tumour. They provisionally staged it as three after scans.
The plan from the oncologist was to go through chemotherapy (six cycles – twelve weeks) and radio/chemotherapy (five weeks), then reassess. I was scanned (MRI) at the end of chemo and the end of radio to see how I had responded to the treatment. Because I had had a partial response, next step was an operation to remove the tumour. The tumour itself was in a bit of a tricky spot, and deep into the wall of the colon, and this information steered the type of surgery that I was to have.
The recommendation (first and second opinion) was for an extralevator abdominoperineal excision, or ELAPE. In simple terms, this is keyhole on the stomach to separate the lower colon, and to bring the remaining end of the large intestine to the surface so that a stoma can be created. Then they flip you over, open up the perineum and remove the lower colon, rectum, coccyx, etc. A flap gets created from your left buttock which is pulled over and stitched in place to help seal the resultant gap. As the surgery was underway, based on how the tumour and scar tissue from the radiotherapy was looking, the surgeon decided to remove a chunk of the prostate (partial prostatectomy) and a bit more of the surrounding muscles around the colon. This was to create a safe margin. Surgery took just over eight hours.
It's brutal, but 100% better than the alternative…. You come out of it looking like you’ve been in a shark attack. It results in a series of small keyhole scars on the stomach, a large Y shaped scar on the left buttock (about the size of your hand) and a scar up the line of the crease in the buttocks where they pull everything back together. You also have a permanent stoma. It’s straight to Intensive care afterwards, and you wake up with a million tubes and wires attached to you.
You’re not able to lie on your back, or your front, and you need to flip from side to side every couple of hours to avoid getting sores, and because it really starts to hurt being in the same position. At first, you’ll be helped to do this, but the sooner you can manage it yourself, the better. It’s tricky with wires/catheters/lines/drains but you work it out over time. Before you go into hospital, practice bridging (lie on your back and raise your bum off the ground using your feet and shoulders and stomach muscles.) Practice this up and down, and also to move from one side to the other. It will really, really help.
I was encouraged to get up on my feet as soon as possible, which I did on the day after the op with the aid of a frame and a nurse. That was really hard but felt like a massive achievement. I moved from that to a crutch, to free standing over the next week or so. Started by walking about ten metres and built it up. After about ten days I was able to leave the hospital and walk around the block, and then a bit farther. Walking is your friend – it will help you recover more quickly. You’ll also have physio to do. Do it, it’s amazing how quickly you lose strength in hospital, and you’ll need your strength. Importantly, don’t overdo it as this will set you back and cause you pain.
One of the hardest things for me was learning to be able to sit down again, because it hurt like hell. I started to practice this a week or so after the operation, but it was not fun at all. I had an inflatable cushion to try and help with it, but progress was really slow. You just have to build up your tolerance bit by bit. It’s taken months for me to be able to sit down relatively comfortably, and it is still tiring after a while. I felt that I was failing with this one, but everyone recovers at different speeds and with the benefit of hindsight I should have been kinder to myself.
I spent a total of about three weeks in hospital, five days of it in intensive care, before I was able to go home. I spent longer in hospital than we’d hoped, or been advised, but I had a few issues with blood pressure and inflammation, and they weren’t happy to discharge me before then. Not really being able to sit down made getting home tricky. I had the operation in London, but I live in Brighton, and so I had a really uncomfortable drive home lying flat on the passenger seat of the car. There are a lot of potholes between London and Brighton…
Annoyingly, because of the partial prostate removal, I still had the catheter in when I went home so I had to deal with that too. it was limiting, and frustrating and made it feel like I wasn’t making progress. It was about a month later that I managed to get rid of it and control my bladder. That felt like a massive deal at the time, and a really big win. It was a real liberation and made me feel like I was getting better.
I won’t go into adapting to the colostomy bag – there’s plenty of other info on that out there – just be patient, and patient with yourself. You’ll have mishaps, everybody does, but with the help of your stoma nurses you’ll work it out. There’ll probably be some comedy moments along the way too. You won’t be able to tell when your stoma will fart, but it will, and it will choose its moments….
That bit about walking being your friend is absolutely true, so make sure you gradually increase the amount you are doing. The first time that I did a kilometre felt great, and another win. I can comfortably do about 15km now and it helps getting some fitness back. Try not to overdo it – one day I did 25Km and it wiped me out for days afterwards. Swimming and cycling will have to wait until the surgical wounds are completely healed. Do your physio.
You’ll be on a limited diet to start with, fluids and what have you, as your digestive system calms down after being yanked around. Then it’ll be on to a low residue diet (limited fibre). I abandoned this after about a month, as I love food and was finding it really boring. I’m not recommending you do this, but I went back to my normal diet and was much happier as a result. I’ve learnt not to eat certain specific things - chickpeas a big no – but most stuff is fine, including curry, chilli etc.
The operation took place in June 2024, and I’m now well into recovery. I weaned myself off the oxycodone painkillers I was on after about three months, which is another story, but make sure you manage your pain. It’s miserable if you don’t. It’s not weakness to take the pain meds; it helps you recover more quickly.
The external surgical wounds have just about healed. This took ages as I got a post-operative DVT (despite wearing the sexy stockings) and was on blood thinners for a few months. I started off in the care of the community nursing team, who came in daily to do wound dressing. I then moved to seeing the nurse at the GP practice when I became a bit more mobile alternating with my partner at home. I’m just about done with that – the slowest part to heal was the perineum, but that’s more or less there now.
Unsurprisingly, it’s a series of victories, and setbacks. The victories can feel small, and the setbacks huge. Just keep on keeping on, and it gets better. People are increasingly saying to me that if they didn’t know what I’d been through, they wouldn’t be able to tell. Another win.
Good luck, and do your physio.
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