It was around a year ago that it dawned upon me that surgery was a likely prospect in my future. It sent me into floods of tears every time it crossed my mind. But, one by one, the various treatments failed, and surgery became the next logical decision if I wanted my life back. My Ulcerative Colitis ruled me – it confined me to the house, kept me paranoid about the toilet, drained me of all my energy, and inflicted pain at random moments, like a thousand hot, tiny needles in my gut. I was losing so much blood, and I was living with this for so long that it all just became normal for me. So, in October 2018, I made the decision to have surgery, and on 23rd January 2019, I had my colon removed and an ileostomy formed. In some ways, it was good to have that 3-month gap so that I could do my research and prepare myself – some people don’t have that luxury and wake up from emergency surgery with a stoma, completely unprepared. I definitely would have freaked out more if that had happened to me. As it was, I was able to steel myself and go through with it with my eyes wide open (figuratively, of course.) While languishing about in hospital, I kept a diary on my phone and I’ll recreate it here. (Be warned – bodily fluids ahead!)
Wednesday 23rd January 2019
Got to hospital at 10.30am. Seen by various nurses/doctors to run through the operation and take my observations (blood pressure etc.) Lots of waiting. I was increasingly nervous but resigned to it. Went down to theatre about 1pm, lead by a bright, talkative young nurse called Carla. She took me to Gold Theatre, where Dr Crabtree was waiting, alongside two other staff. I was tearful from saying goodbye to Mum and Dad but once you’re sat on the table in a gown, surrounded by hospital staff sticking needles into you, you have to surrender to it and let them do what they need to do. The anaesthetist put the canula in my hand and another doctor carefully injected my spine with a pain killer. “You’ll feel a warm sensation in your legs,” he said, and as soon as he said that, I did. Warmth spread from my hips down to my feet, like I was sitting in a heated car seat. I remember lying down and being wheeled into theatre, and I remember them sliding me onto the table, but that is where my memory ends. It picks up again with voices calling my name, wrenching me from a deep darkness. My head is incredibly heavy, the room is spinning and I groan. They tell me I am in recovery. I don’t remember anything except being wheeled up to the ward in my bed to where Mum and Dad were waiting, them talking to me and me answering in drugged, one syllable tones. Slowly, I come round, but I retch twice from the anaesthetic, wrenching my poor abdominal muscles, making me groan in pain. It was horrible. I didn’t throw anything up. I was incredibly tired and don’t remember talking much. Mum and Dad left once visiting hours were over, and the nurses looked after me throughout the night, coming into my room every hour to take my blood pressure, heart rate, oxygen and temperature. I didn’t sleep much, just lay in a drugged state, drowsy, room spinning slightly, trying not to move.
Thursday 24th January 2019
Mum and Ann [my aunt] came to visit. I was more alert but still dizzy. Two nurses came and washed me and got me out of bed and into my chair. I had zero appetite all day, as if my stomach was recovering from being cut open. I was hooked up to fluids, IV paracetamol and a catheter (though I thank the stars I couldn’t feel it.) The pain was better. I wouldn’t call it pain, just soreness and a complete inability to use my core. I couldn’t even pull myself up into a sitting position. The nurses here are all kind and cheery. I was looked after by Brenda, a stout, experienced Scottish nurse, and a student nurse, Matilda, who I guessed was from an African background judging by her lovely accent. She was very nice and probably my age. I was visited by nurses, a stoma nurse, a physiotherapist and doctors. The physio, Adam, got me to my feet and walking to the nurse’s desk outside my room. I shuffled in my slippers, hunched like an old woman, with my drip and him guiding me with a steadying hand hovering behind me. The stoma nurse had a look at my new stoma through the bag and said it was nice and healthy – indeed, it had already begun gurgling and filling the bag with brown liquid. This morning I felt able to look at my body and what I had put it through. I had dressings over four strategic incisions on my stomach, and my stoma was round and pink in its bag. I was bracing myself for a hideous alien worm protruding from my stomach, but it seemed a round, neat shape, offering little puffs of air every now and then. All I knew was I had to like it, I had to get on with it, because my colon was gone and so was my illness. I still can’t believe that I basically don’t have colitis anymore. If I think about it too much, I’ll cry.
Friday 25th January 2019
Moved from my little room into Bay D, where four other women sat in bed. Before that though, I had the morning from hell. Another student nurse, Charlotte, was helping me up out of my chair when blood fell out of me, running down my leg and pooling between my feet. It was terrifying, and I couldn’t believe what I was seeing. My period – due on the surgery date – had arrived with a bang, as if it had been storing itself up to surprise me. Well, colour me surprised. I think I scared poor Charlotte half to death. Another nurse checked that it wasn’t blood from my butt (as they had stapled my rectum closed), and when satisfied, they gave me the biggest sanitary towel I’ve ever seen. It was a maternity pad, and it was as big as a nappy on me, but boy did I need it. Just as I’d been cleaned up, a stoma nurse knocked on my door to help me change my bag for the first time. She saw the state I was in and offered to come back, but I said it was fine – why the hell not, let’s just get all the bodily fluids out of the way. I settled in my chair, ready for the lesson. She had a square, blue bag with her filled with stoma supplies, which turned out to be mine. She took me through the process and also cleaned some of my surgical wounds and she was worried the bag was so close to the main incision under my belly button. She unzipped the supply bag and took out a range of items – cloths, scissors, a stoma template, little rubbish bags that reminded me of dog-poop bags, a small plastic pot for water and a wad of hospital stoma bags. My bag was easy to remove with a special spray. The stoma itself seemed bigger once the bag was off. The nurse showed me how to clean it, how to measure it with the template and cut the bag to size. As I cleaned the stoma, it was strange, as it couldn’t feel my finger touching it. It was almost alive, retracting slightly as I cleaned. It was good to have a clean new bag on though, and to feel fresher.
I was moved from my room just as Mum and Dad arrived at 11am. I shuffled the short distance and collapsed into the chair. I felt awful – hot, nauseous and exhausted. I almost heaved again, my abdominal muscles wrenching painfully. It must have been a combination of everything – my poor body. Mum and Dad stayed with me all day. I was tired and still had no appetite. In the afternoon, Dr Crabtree found me and was pleased with my progress. Mum pounced and told him that I still wasn’t eating. The nurses had given me nutritional ‘juice’ drinks, but these tasted awful – almost as bad as bowel prep, and I had plenty of experience with that. One sat unfinished on my table. Dr Crabtree picked it up and grimaced. “Ugh, yeah don’t drink those, they’re awful. Pie and chips is what you need!” I couldn’t think of anything worse at that particular moment, but I smiled weakly. I was beginning to feel better – the soreness wasn’t as bad, and I could walk around a bit more now that the catheter was out. I walked with Dad down the corridor, Dad pushing the drip along for me. That walk, alongside finally peeing for myself, was my biggest achievement since surgery.
Later that night, however, I felt the all too familiar urge for the toilet. I shuffled to the bathroom and passed some blood. Horrified, I stood wondering what to do. I told myself if it happened again, I would have to tell someone. Of course, it did. I went to sleep uneasily, wondering what would become of me.
Saturday 26th January 2019
I passed blood again in the early hours of this morning. Trembling, I told Brenda, who was on night duty. She assured me it wasn’t unusual, but I wasn’t convinced by the tone of her voice. She’s a trained professional, she’s not going to let me see if something is wrong. All morning, I tried not to think about it, and of course it was the only thing on my mind. Just before Ann came to visit, the surgeons came to see me. I was finally getting my appetite back, and my stoma was gurgling away. They were pleased with my progress and said I should be able to go home once I could change my bag myself. I bit the bullet and told them about the blood, bracing myself for more surgery. “Oh, that’s fine,” said one, brushing it aside like I’d just told him I had a papercut. “It happens. It’s probably from where we’ve stapled the bowel closed.” Fear was instantly pushed aside by the relief flooding my body. I’ve been in a good mood ever since, and I haven’t passed blood since, either. Ann sat with me for a few hours and I actually ate my lunch – cottage pie, which was surprisingly good for hospital food. I chatted to Beth [my sister] on the phone, felt more able to concentrate on things like crosswords and magazines, and Mum and Dad could see I felt better. I just feel more positive, like my life is only going to go up from here.
Sunday 27th January 2019
I was wheeled away, still half asleep in my bed, to A Bay this morning, as D was needed for male patients. I managed some toast and juice for breakfast then began preparing myself for my first solo bag change. For some reason I was more nervous now than when I was thinking about it yesterday. But I went through my supplies, and went over and over the procedure in my mind. Come on, I told myself. You need to do this to get out of here. I changed my bag at about 10am, and it went smoothly. I found myself talking to my stoma as I gently bathed it, calling it Timmy and begging it not to suddenly gurgle and spit output. It behaved itself and I fitted the bag over. I asked a nurse to check it and she said it was perfect. I was thoroughly pleased with myself. Pushing my luck, I asked the nurses if I could go home today. They checked my notes and winced sympathetically. “Not until tomorrow, I’m afraid,” said Brenda kindly. Ah well, I tried.
Mum, Dad and Beth visited today. It was great seeing Beth. I must have looked tired, but I was happy. Beth gave me an envelope with messages from her, Hugh, Katie and Lewis, which made me laugh (and my stomach muscles hurt), and then another piece of paper announcing that we were going on a road trip in April! We are visiting Puzzlewood and other Merlin filming sites! I beamed. I cannot wait to be able to go on a long drive, music blaring, cares behind me, able to explore sites without sourcing the toilets first.
—
I was discharged from hospital and sent home on Monday 28th January 2019. Undergoing surgery was one of the hardest decisions I’ve ever had to make but one month on, I am already feeling so much better. My stay in hospital was a lot less scary than I imagined – the worst part was saying goodbye to my parents and walking to theatre. Everything after that I was able to deal with because I wasn’t alone – I was looked after by so many amazing people, and I had my family around me. Coming home was a relief, but also worrying, as it feels like the next step – managing your bag by yourself. But you’re not left by yourself really – a community stoma nurse visits you at home and is just a phone call away between visits. I’ve adapted really well to the bag already – mainly because it is a much more efficient system than I’ve had for years! It is really not that much of an inconvenience at all – the only slight inconvenience I’ve experienced is having to get up at around 3am to empty it. I have also had to keep an eye on the food I am eating, just for these initial six weeks, to make sure that my bowel is not working too hard. I’ll go over food in another blog post, but in general I am avoiding high fibre foods (most fruit and veg), and sticking to plain food, nothing too adventurous yet – although I have had a mild curry, my first in years!
I am four weeks post-surgery, and my stoma should reach its usual size by six weeks. Already it has shrunk down from the size of a strawberry to the size of a large raspberry. The stitches around began to pull and hurt in the second week, and my stoma nurse had to remove some of them. But apart from that, my scars are healing nicely, my stoma is behaving itself, and I am getting stronger. I do really have to remind myself that I am still in recovery!
Gutless Blog 