I knew it would be a long recovery – I had been signed off work for three months after having one of my largest organs removed, but I did not expect to have to wait for 18 months for my body to finally heal.
Following ten days in hospital I returned home to convalesce. Everything was going well at first, my body benefiting from the operation having been performed laparoscopically. Even so, any sort of movement was slow and often painful, and just sitting down proved rather uncomfortable having had the whole of my colon pulled out through my now non-existent rectum and anus, which had been sewn up – everything was very tender in my posterior.
However, it was a relief to no longer have my diseased colon in my body. As my Crohn’s disease had always been limited to my colon, rectum and anus, the hope was that with all of these removed I would now be free from my symptoms of Crohn’s disease (though since Crohn’s can occur in any part of the digestive tract, this cannot be guaranteed). Also, the intense fevers I had been suffering from disappeared and my stoma was no longer prolapsing.
It wasn’t long, though, until I had a setback. Only about a week after I had left hospital I was back inside. The stitches that were holding me together where previously my anus had been had opened up and I now had a gaping hole that stretched several centimetres up into my body. Needless to say this was rather alarming. I went back to the ward on which I had been treated in hospital, but unfortunately they didn’t have any space to admit me, so I was sent to a general ward for the night.
That night (and thankfully it was only one night) was possibly my worst experience of the NHS. The ward was hot and noisy, and full of ungrateful patients and not enough staff. In my bay there was a man who couldn’t get his TV to work and was venting his fury at anyone who walked past. When he did get it to work he then didn’t have the pair of headphones that normally comes with the TV and so turned the volume right up so everybody could hear (and then he promptly fell asleep!). There was another, quite elderly man who was in a bad way and was confused in the night, which resulted in him not being able to get out of bed in quickly enough when he needed the toilet. It then took a very long time to sort him out, with the rising tensions from the other patients fuelled by the amount of air freshener that was being sprayed into the air. Unsurprisingly I got little sleep that night.
Fortunately, I was seen the next day, with the conclusion being that while little could be done to bring the gaping wound back together, all that it needed was to be dressed correctly and then I could go home, with instructions to visit my practice nurse for her to redress it every day. Upon visiting my practice nurse, it turned out that she was familiar with dressing similar wounds from patients with pilonidal sinusitis – a not uncommon complaint among men with a hairy derrière who sit around too much such that a hair becomes ingrown. In a bad case, the hair works its way upwards into the body and then becomes infected, leading to a deep tract of infection that has to be excavated. For such cavity wounds to heal properly, they need to be kept open to allow them to heal from the outside, otherwise an abscess can form. This meant packing my wound with surgical wool that would absorb the fluid from the wound and prevent the sides of the wound from healing together too soon.
This was a painfully slow healing process that lasted for months and months. As it healed, my wound became very narrow but remained quite deep such that it became difficult to continue packing the wound. I was sent back to see my surgeon who curetted the wound (under general anaesthetic) to open it up again, and so the process of packing the wound started again. This saga was to repeat itself two or three times, such that I was still having to visit the practice nurse even when I returned to work. Claire was a hero and went well beyond the call of duty to dress my wound a number of times, probably better than the nurse ever managed.
Feeling well and pretty much recovered from my operation but still having a wound that wouldn’t heal was rather frustrating. I just wanted to be able to finally put everything I’d been through behind me and get on with life feeling fit and healthy.
Still the wound persisted. I even had an MRI scan to see how deep the wound was. Pretty deep was the conclusion – deep enough that trying to fix it surgically was too risky because the wound stretched up close to where my small intestine was, such that there was a danger of perforating it. The procedure would have been to take a muscle from my thigh and insert it into the wound cavity to plug the hole, which sounds more dramatic than I think it would have been – according to my surgeon even Olympic high jumpers didn’t need that muscle!
My surgeon’s advice was to do nothing. He said that the wound (which now was still several centimetres deep into my body but only a few millimetres wide) should eventually heal itself, given time, without any further packing as long as I kept it clean. At this stage he thought the risk of an abscess forming was low. Fortunately, he was happy for me to swim (even in open water) with my wound, which was great because the lake I went to train in was just about to open.
I was therefore happy to do nothing and to let nature take its course, which it did, but it took about a further year for the wound to heal properly. In the meantime, I got back slowly into running and cycling which thankfully didn’t cause the wound any problems. Indeed my surgeon thought that exercise would be beneficial as it should help the wound to drain and therefore keep itself clean.
So now I have a perfectly sealed bottom and the correct number of orifices in my body, just that one is in a different place. And with that, my time with active Crohn’s was over.
To put it mildly: what a relief!
I could go through everything that I no longer had to go through but it feels good now not to have to talk about all of this – all my previous blog posts outline this in gory detail. I will write two or three more blog posts to look back at my life with Crohn’s disease and my life now with a stoma, but for now thank you for everyone that’s made it this far.
A welcome relief from intensive training in the form of a short taper before a half marathon on Saturday at Eton Dorney (round the rowing lake). Although it was quite windy (for a 2km stretch for each of 4 laps along the length of the lake) I set a new PB of 1:23:27, which was very pleasing. Sub-three hours for the marathon is looking possible, but it’s going to be tough…
In summary, four runs and a total distance of 39 km.
Monday: 10 km in 46 minutes
Wednesday: 4.5 km in 21 minutes
Thursday: 3.3 km in 15 minutes
Saturday: 21.1 km in 1 hour 23 minutes (PB!)