On the morning of the 31st of October, my urine catheter was finally removed in the hope that I could try and stand up for the first time later in the day. It definitely stung a little when the tube was removed, but I imagine it would feel much worse to get one put in! I was just glad to feel a bit freer and the prospect of getting out of bed seemed very appealing after almost a whole week of being stuck lying on my back. I thought I should try and get some strength back before attempting to walk though, so I had my first solid food that morning: a cheese sandwich. I only managed two squares as I was still pretty unsure about how my body would react, but after months of no real food at all, any amount of cheese sandwich was utterly delightful.
Then, the big moment arrived. At 11am one of the physios came to help me stand up. By “help me” I mean encourage me, she didn’t actually assist me physically, she was more for moral support. I started off by shuffling to the edge of the bed and sitting for a few minutes psyching myself up to walk again. It’s definitely quite daunting when you feel so weak and haven’t moved for so long, you start to doubt whether your legs will hold you up! Usually, the mobilisation process is done in stages- the first one being to sit in a chair for several hours a day, to overcome the initial dizziness before walking any real distance. But unfortunately, given the nature of my surgery and my rectal wound, I was only allowed to sit for a couple of minutes max. I soon concluded that it was probably going to hurt however I tried to get up, so in the end I just went for it. My legs were extremely shaky for the first 5 minutes and I felt very dizzy: not a great combination for trying to walk, but not unexpected either. The most important thing in this situation is to take your time and know your limits. Personally, I could feel that I wasn’t strong enough to just go bounding around the ward immediately, so I began by gently walking on the spot to get the blood flowing back into my legs.
Soon I felt a bit more stable and, after we’d clipped the stomach drain to my gown, I managed to plod my way out of the bay and about 5 meters out through the ward with the help of my IV to steady me. The main pain I had was my abdominal wound, so I had to walk slowly and hunched over to avoid straightening it too much. Such a short distance may not seem like much, but it was a big step for me at the time. My pain was understandably worse for the rest of that day, but the progress was worth it. I was absolutely knackered afterwards though- and definitely ready for the other half of my cheese sandwich! The physio told me she was happy with my first attempt at walking and that I should aim to start walking a short distance a few times a day to build up some strength and get things working again, that would be key for my recovery. Luckily, the surgical ward was marked with two walking routes for mobilising patients: a shorter green route, and a longer red one. Tomorrow I had to try the green one.
A bit later, after my sandwich had gone down, I got even more adventurous and decided to try some strawberry blancmange that my grandma had made me. It was very nice, but possibly a bit sweet at the time! But my surgeon wanted me to eat sugar, and I didn’t want to disappoint. Then I had a good nap for an hour or so- what can I say, that brief shuffle along the corridor really did take it out of me. When I woke up however, I realised I urgently needed the loo. I’d almost forgotten that at some point I’d actually need to go to the toilet. I’ve found that after having a catheter removed, you tend to need the loo quite immediately for the first day or two as you aren’t conscious of going while the catheter is in place and so, you aren’t used to “needing” the loo at all. Going the first time after having a catheter removed can also be a bit awkward, but soon things go back to normal again. For my first time I had to use a commode as I wasn’t strong enough to make it to the toilet just yet. It was a little tricky and uncomfortable like I say, but I managed. And while I was out of bed, my nurse was FINALLY able to change my sheets and give me a new gown which gave me a real boost.
A bit later, I was visited by one of my IBD doctors. He was thrilled with how much of a turnaround I’d made after everything that had happened so far. He said he honestly didn’t think I’d be up and about yet, and he was very proud of how far I’d come. After all the things I’d been through so far, that felt really good to hear. The rest of the day wasn’t that eventful, I just ate some more and rested mainly. But I was starting to notice that my stoma output was becoming a bit more frequent in response to what I’d eaten. It’s always loose for a long while after surgery, but it was reassuring to see that everything was working okay. However, I then needed to start thinking about how I was going to empty the bag as so far I hadn’t needed to, what with the stoma nurse changing my bag each day and me barely eating anything. I couldn’t bend down to reach the toilet, but emptying the bag proved relatively simple with the help of some kidney bowls. That was the first day when I felt like I’d really made a step forwards in my recovery and as a reward, I treated myself to an episode of The Great British Bake Off via the hospital wifi.
During the night I managed to use the commode a few more times unassisted, but I did need help getting back into bed. In the morning the consulting colorectal surgeon (the main man) came to see me with his registrar and the doctors. He was very pleased with my stoma output and my mobility, but he gave me an important piece of advice: Don’t get overexcited and do too much, you still need to take it easy. He also checked all my wounds and gave the go-ahead to remove my last drain- yay! I celebrated with a small plain croissant (yes please!) and soon my nurse came to do the honours. She told me it was going to be very uncomfortable when she took out the tubing, so it was deep breaths all the way! As usually goes with a drain, she first had to unpick the stitching holding it in place. Then she had to ease out the drain itself. I wasn’t exactly looking while she did this, but I was wondering why it was taking so long. I knew she had to do it bit by bit, but wasn’t it only a short plastic tube? Apparently not! It turned out to be around 25cm long… Yikes! Getting that pulled through my stomach was yet another new and incredibly weird sensation which I hope not to relive in the future.
I then had to get my rear and abdominal wounds redressed. This was the first time that I’d seen my abdominal wound without a dressing on it. Let’s just say you certainly couldn’t miss it! It was about 25cm long and there was an enormous number of staples holding it together. The second thing I noticed (after the staples, was the fact that I’d lost my belly button! I mean, it’s not like it was particularly useful or anything, but I thought once my wounds had healed into scars that I’d look even more mutilated without one. Oh well, I tried to tell myself that there were more important things in life than navels… (Though, as it turns out, three months after surgery I have realised that I do still have one, it just got lost in the staples and swelling in the early days!)
I thought it would make me cringe leaving it exposed without a dressing, which is why I hadn’t done it sooner. But I quickly forgot about it and thankfully, it didn’t catch on my gown. Now it was time to change my stoma bag and a week into my stoma journey, I thought it was about time I did it completely by myself. I remembered the steps the stoma nurse had told me: spray the old bag, peel it off, clean and dry the skin, measure the stoma, cut the new bag, peel off the adhesive and secure. It wasn’t as bad as I’d previously thought, it was mainly just the angle at which I was lying making things awkward. But from that point, it felt like I could genuinely see myself being able to manage living with a stoma. By now I had also finished the strongest of the antibiotics, which meant that my appetite was slowly growing again. That afternoon I managed to eat a jacket potato, some cooked chicken and a small amount of cheese- what a gourmet delight! Though, I did start to notice an unwelcome consequence of going so many months without solid food: my teeth were killing me. I’d forgotten how much effort it took to chew!
But nonetheless, I was feeling energised from my mini meal and ready to brave the green ward circuit. The total circuit was about 30m long and after a pit stop at the loo, I shuffled my way along yet again, determined to complete it. Part way round, I was joined by a support therapist who encouraged me to try and walk with my IV to one side rather than in front of me like I had before. Granted, this was easier and I wasn’t constantly stumbling over the IV, but it was harder on my stomach. Like many things, I guess I would get used to it. And sure enough, eventually I made it back to my bed; a bit sore, but very satisfied. Once I was lying down again, the therapist got me to do some limb exercises which involved pushing my feet against her hands, flexing my ankles and consecutively lifting and bending my legs in order to help with circulation and strengthening my muscles. After all this I was exhausted again, so I took another well-earned nap. I then had just enough energy left to attempt to wash my hair in bed again, much to my parents’ delight! And then I rewarded myself for another productive day with some homemade cheese quiche and some mashed potato, followed by some ice cream and a good old fashion magazine. Things were certainly looking up.
Me and My Crohn's 