After the previous day’s achievement of walking the 30m green route around the hospital, I was feeling up to taking the 80m red route today. After getting my rear dressing changed as it’d been leaking everywhere overnight (ew…), I took to the corridors. I felt far stronger and less light-headed having been eating and drinking more- I’d even tried some cornflakes with soya milk that morning, fancy!
I was really starting to get into a routine with things now in terms of getting out of bed, changing my stoma bag and eating regularly. And eating more, I soon realised something really incredible: the constant agonising pain that I’d suffered from for years in my left side had finally gone. If I’m being completely honest, I did get a little emotional when I noticed. It had been there for so long that I never imagined I’d go a single day without it bothering me, let alone that I’d wake up after surgery and it would instantly be gone. What’s more, after several frankly baffling years of my IBD team telling me that they didn’t know what it was, I finally had some closure: it was clearly one of the strictures in my colon all along.
Feeling even more encouraged, I walked the red circuit again after lunch- a smoked salmon sandwich with hula hoops a.k.a. heaven. I was more or less adding one “safe” food every day or two now- “safe” foods being low-fibre and unlikely to cause a blockage. I knew I needed to eat salty food at the time because ostomates lose a lot of salt and minerals through their stoma, particularly just after surgery when the output is still loose. Luckily I seem to have a real taste for salt! I also knew that I needed to eat as much as I could feasibly manage as I had some weight to gain. I wasn’t in the appalling malnourished state that I had been in for many months earlier in the year thanks to the 4 ½ months liquid diet I’d done, but it certainly hadn’t worked as well as it should have, so I was at least 5 kilos under my “normal” weight. Hence, I may or not have then eaten 3 homemade cupcakes…
Anyway, after gorging myself on salt and sugar, I then had my bloods taken and my rear dressing changed yet again. I had attempted at the physio’s request to try and sit in the chair on a pillow for a few minutes to help my circulation, but it was way too uncomfortable and only made my wound seep even more. This continued for the next couple of days, but I continued to make progress in terms of eating and moving about. The next day I even got my dad to wheel my IV and I managed to walk the red circuit completely unaided several times. My pain had also improved to the point where I was barely pushing my PCA.
By the 4th November I was taking the red route at least 4 times a day, including once before breakfast. Don’t get me wrong, I was aching all over, but ironically moving about was relief for my otherwise stiff legs. I think it was more getting in and out of bed that was causing my hips to be sore, its actually quite difficult and unnatural trying to do it without putting any pressure on your bum… That evening I was told however that the pain team were now happy with how I was managing my overall pain level and they suggested that I be disconnected from my PCA and swapped onto oral tramadol and oxycodone instead. The tramadol would be given throughout the day and the oxycodone was to be asked for if I needed it as an extra. I’m always nervous when it comes to pain relief. Would it work? Would they get the dose right? Would I lose the ability to think straight? Would there be a range of other unpleasant side effects? Time would tell.
It wouldn’t take long either! I started tramadol that night and the next morning I wasn’t feeling too bad. I then got the amazing news that my CRP (the inflammation marker that indicates active Crohn’s Disease) was 11! 11! I don’t think it’s ever been that low! The day was off to a good start, but it would soon take a downward turn. My nurse for that day “misread” my drug chart and accidently gave me double the dose of tramadol that I was supposed to have. Within about half an hour I felt incredibly nauseous (despite the full dose of anti-sickness I’d already had that morning), dizzy and generally out of it. What déjà vu! Speaking of which, it wasn’t long before the good old hallucinations crept back in too. Way to ruin my winning streak!
Needless to say, I have absolutely no recollection of who visited me that morning. Luckily after a long nap and some chicken and gravy, I started to feel better. So much so, that later I decided to change into my own clothes and brave my biggest adventure yet: the stairs. It was surprisingly easy! I only did one flight initially (baby steps people), but that was the final hurdle I needed to cross as far as mobility was concerned before going home- woop!
Later that night I even managed to watch the fireworks out of the ward window- people would pay a lot of money for a view of London like that! My pain relief was now at the correct dose and I could feel when I needed more. The pain wasn’t quite as dramatic as I’d previously experienced, but when the drug wore off I could definitely locate the worst of the pain just to the right of my stoma. Luckily I was on the ball again now and asked for more before things got too painful!
After conquering the stairs, my goal for the next day was to sort out my rear dressing once and for all. So far we hadn’t found a way to dress it so that it didn’t leak, and I was getting pretty fed up with getting stuck to my bed protector. My surgical registrar decided to have another look at the wound and said that some of the outer stitches had pulled apart which was why it was leaking so much. This didn’t sound good at all to me, but she seemed at ease. She explained that it was bound to seep quite a bit because of the severity of the infection that I’d had removed during the surgery. She then suggested that we start using some longer, more absorbent dressings to hold everything in.
Unfortunately, as is often case with hospitals, they didn’t have the dressings she wanted to use. Yawn. So, she then left me with a makeshift paper towel nappy of sorts under the impression that the nurse would come and re-dress the wound shortly. After an hour of waiting I concluded that I might as well just re-dress the wound myself with the dressings I’d brought from home. I hate to be a know-it-all, but I’d much rather have done it myself anyway as that’s what I was used to. But apparently the nurse disagreed. So, she then proceeded to rip off the new dressing I’d just put on it and replaced it with a completely useless one. Sigh.
Anyway, I was then visited by one of the stoma nurses who told me that my bag was being overworked with acid from the early days of my output. This also wasn’t helped by the fact that the stitches holding the stoma in place had pulled away from my skin leaving a very red moat (for want of a better word) around my stoma. In other words, the stitches weren’t really doing anything other than stopping my skin from healing. She said that this was relatively common and decided to remove these stitches and try out a barrier ring. As any existing ostomates are probably aware, this is like a sticky mouldable ring that attaches to the skin around the stoma, preventing output from reaching the skin and allowing it to heal. They’re also used to prevent bag leaks. Removing the stitches certainly didn’t feel good when my skin was so red raw, but luckily there weren’t many of them.
That afternoon I learnt a very important lesson about recovering from stoma surgery: it isn’t always just a series of linear improvements; things can be up and down from time to time. For some reason my pain was coming back, and it was really starting to bother me. I decided to try some oxycodone for the first time. I realise everyone has a different reaction to pain relief, but for me, oxycodone didn’t really have a noticeable effect on my pain. But it also didn’t make me hallucinate or feel sick. You win some, you lose some. I didn’t want to try anything else so soon though, so I had to grin and bear the pain for the rest of that day. I thought my pain had been improving, but I know now that recovery is unpredictable.
Me and My Crohn's 