If you’ve been reading my previous posts about my stoma surgery then you will remember me talking about how I seem to develop a bunch of random issues whilst in hospital. So far there had been my partial blindness and my mysterious shoulder pain, and on the afternoon of the 29th of October, four days after my surgery, I had another enigma to add to the list. This time I had developed an odd, blotchy looking rash on my face and neck. A dermatologist was called for me, but it seemed to be a waste of time. He had no idea what the rash was and just prescribed some random steroid ointment, which did not work I might add- even now I still have some unfortunate scars from said rash.
Aside from that, I was still waiting for my epidural to be removed, but there was another hiccup. Because usually hospitals give all their inpatients daily blood thinning injections to prevent blood clots while they aren’t overly mobile, they established that they couldn’t remove my epidural yet as there was too much risk of bleeding. Then, a doctor came to visit me and told me that later on he was going to do a proper mobility check (not just the spray test) and if I couldn’t lift both of my legs high up off the bed without any help, I would need to be sent down for an MRI to check if I had a blood clot at my epidural site. This would be mean a hell of a lot of movement and movement = pain. He warned me that it wouldn’t be pretty if this was the case.
Momentarily left alone again, there was one thing I really wanted to do: wash my hair. By this point it had been almost 6 whole days since I’d washed it and I was passed desperate. Now, I know what you’re probably thinking: with everything else going on, why on earth was I being vain enough to think about my hair, of all things? Its actually not a vanity thing at all, the feeling of greasy hair just makes my skin crawl. So, my parents began the ever-challenging task of washing my long hair without moving me. Needless to say, it was not easy. But we did eventually get the hang of it… sort of! It involved a large plastic bowl, some inco sheets, a few arguments and a whole load of towels! But it did feel better afterwards, so I thought it was worth it. Even though every time I asked my parents to wash my hair after that they rolled their eyes with dread because it was so much of an ordeal, its important to try and keep up with simple things like that if you can, it really does give you a mental boost.
Freshly washed, I saw the doctor and pain team again and they were ready to do the mobility check. I was very worried about just how painful and difficult this was going to be, but I actually surprised myself quite a bit. With some albeit harsh encouragement, I managed to will both of my legs to a 45-degree angle off the bed and hold them in this position for around 5 seconds. Then things got rather awkward when the doctor asked me to try and kick him in the face… I thought he was joking, but apparently not. I definitely would’ve kicked him harder if he had been the nurse who switched off my epidural, but I was feeling positive about my progress for the first time, so he got off lightly- especially since I used to do karate! But most importantly, I passed, so no MRI for me- yay!
I pressed my PCA a few times after this little assessment to regain control of my pain, but I was starting to feel more comfortable with the fentanyl as it seemed to be doing a better job than anything else I’d tried so far. I was still getting bouts of nausea and hot flushes, and I could feel some level of pain almost constantly, but I could speak properly, and overall things were not too bad now. Perhaps there was some light at the end of the tunnel. I was then told that I would soon be moved to the surgical ward that I was supposed to be on from the beginning- I’d been on a vascular ward until now, which would explain -but not excuse- the less than acceptable care I’d received so far… However, once I arrived at my new ward, my porters were stunned when the ward sister said that I wasn’t getting my own room after all, I was going to the dreaded bay. Now, I understand that it is a privilege to get your own room in hospitals which struggle for space, but seriously, what does a girl need to do to get and keep a side room!? Great, no sleep for me then.
After a predictably loud and disruptive night, the next day was remarkably uneventful compared to usual. Just the same old confusion; this time about the level my pain relief machine should be on and whether or not my stomach drain should be removed yet or not. Not, according to my surgeon seeing as it had already drained almost 500ml of stomach fluid (gross, I know) and was still going. But at least my nurse for that day was on the ball. After hearing about what had happened with my epidural, when my fentanyl ran out, he went sprinting to the storeroom to get a new bag and hooked me back up in record speed. Much appreciated. But I did not appreciate the doctor who visited me that day putting the side of the bed down without warning: it was the side that the bottle connected to my stomach drain was hanging on. The one time I wasn’t paranoid enough to hold the bottle myself to make sure no one’s negligence ripped the drain out of my stomach. He just managed to catch it, but I’m pretty sure he even cringed himself when he realised. After this I went back to holding onto the bottle for dear life, much to the amusement of several other doctors who subsequently came to check on me. But better to be safe (and ridiculed) than sorry.
Anyway, he said that the other drain (the one connected to my butt cheek) could be removed. I’m not exactly squeamish, but this definitely freaked me out more than I could have anticipated. I had to pull myself to the right-hand side so that the nurse could get to it, which was more than I’d moved in a week. Then she had to remove several stitches before pulling the drain out. Considering I could not see what was going on down there and the pain from the surgery itself exceeded any pain caused by the drain, I expected a drain not dissimilar to the one in my stomach- a clear plastic tube around the diameter of a pencil. Instead, the nurse yanked out a 25cm folded rubber strip- YUCK. It was akin to a giant piece of celery! I couldn’t believe that had been inside my bum for the last week… no wonder I felt so weird and uncomfortable! As for how the removal felt, getting the stitches out hurt the most. When the nurse pulled the drain out it did feel incredibly odd, like a lot of pressure suddenly being released. After about an hour though, my bum definitely felt a little more comfortable.
My registrar and my IBD nurse then paid me a visit and were glad to see me feeling more settled. I don’t want to scare anyone even more than I probably already have, but they agreed that the first few days after stoma surgery are not usually days you want to remember. But soon, things start to look up. As for food, they both said that I should start trying to have something more than just soya milk. Sugar was now on the menu as it was what I desperately needed. So that afternoon I braved some fromage frais for the first time- and boy did it taste good! I only managed half a tiny pot initially as I felt a little sick, but it was progress. Speaking of progress, my eye was looking much better. After a couple of days of using the ointment prescribed in recovery, I could see again- though my vision was a bit blurry at first. By now the swelling had also gone down significantly, so I looked less like I’d lost a fight.
The next item on the agenda was to finally remove my epidural. I’d been given a vitamin K infusion to help thicken my blood and the results from the blood test I’d had that morning had been given the all clear, so it was now safe to remove it. Removing the gigantic adhesive dressing attached to my back probably hurt more than the removal of the actual tube- that only created a mild stinging sensation. Afterwards however, I had to undergo the tiresome task of lying very still and flat on my back for 2 hours in order to prevent the notoriously painful spinal headache. This was the first time I had laid flat on my back and it wasn’t exactly comfortable. But with a few pushes of the PCA, the pain was manageable, and I hoped to be able to get some rest that night. Unfortunately, as is standard for hospital bays, this wasn’t the case. As it was, the same old ward noises were doing their best to keep to me awake: the patient call buttons buzzing, the reception phone ringing, the reception printer running, the nurses shouting and laughing, the geriatric patients yelling out in confusion, the nebuliser machines etc. Not to mention the way too enthusiastic nurse who got assigned to our bay in the middle of the night and felt the need to turn on all the lights and announce her presence at 1am by shouting: “Hello everyone, my name’s Margaret and I’ll be taking all your obs now!” And just to make sure we heard her from behind the dividing curtains, she came and repeated it to every one of us individually. This did not amuse me, nor the 3 other women in their 80s who were already fast asleep… Can’t say I was exactly ready for the next day after that, or should I say ready for Halloween!
Me and My Crohn's 