This is the closing reflection on my ulcerative colitis to stoma journey — from the early symptoms I ignored, to diagnosis, medication, remission, relapse, hospital admissions, stoma surgery, recovery, and learning to live again. It is not a neat or simple story, but it is the full journey of how ulcerative colitis changed my body, my confidence, my future, and eventually gave me a voice through The Stoma Accountant.
This page brings the whole journey together in one place, including the symptoms I ignored, what happened after diagnosis, the long years of living with ulcerative colitis, the flare that changed everything, preparing for surgery, waking up with a stoma and learning who I am now.
This follows on from A Call to Hope, where I shared a message for anyone living with ulcerative colitis, facing stoma surgery, recovering with a stoma, or wondering whether life can feel normal again.
My journey with ulcerative colitis didn’t follow a straight line.
The Early Ulcerative Colitis Symptoms I Ignored
It didn’t begin with some dramatic collapse or obvious medical emergency. It began quietly, with symptoms that were easy to dismiss because they were awkward, embarrassing, and not the sort of thing people naturally want to talk about. At the start, I wanted to believe it was something simple. Something that would go away. Something I could ignore until life carried on as normal.
What started as mucus, blood, weight loss and fear slowly turned into years of appointments, medications, scans, scopes, hospital rooms, false hope, side effects, and setbacks. Before the medication journey truly began, I had to understand what happened after my ulcerative colitis diagnosis and what those first hospital appointments meant.
There were moments where treatment worked and I thought I had finally found solid ground. There were also moments where drugs failed spectacularly and pulled that ground away again.
That is one of the hardest parts of living with a condition like ulcerative colitis. It doesn’t just affect your body. It affects your ability to trust life.
You learn not to get too comfortable. You learn that a good few weeks doesn’t always mean the storm has passed. You learn that a medication working today doesn’t guarantee it will work forever. You learn to live with hope, but also with caution, because you have been disappointed before.
Vedolizumab gave me four years of life back, and I will always be grateful for that. Those years were part of learning what living with ulcerative colitis after diagnosis really meant. Those years mattered. They gave me room to breathe, room to work, room to study, room to start building a career, and room to remember that I was more than a disease. For a while, I wasn’t just surviving. I was moving forward.
When Ulcerative Colitis Took Control Again
Then Covid arrived, my treatment stopped holding things together, and the stability I had built began to fall apart again.
I lost control in ways I never imagined I would. I planned routes around toilets and bushes. I carried a rescue pack. I wore protective underwear. I sat in traffic terrified of what my body might do. I lost work, delayed plans, fought through exams, and kept trying to build a future while my body was pulling me backwards.
Eventually, my body made the decision that medicine no longer could.
When Stoma Surgery Became Hope
Surgery wasn’t a dramatic rescue. It wasn’t the easy option, and it definitely wasn’t a failure.
It was the necessary step after everything else had been tried. It was the moment where keeping my colon was costing me more than losing it.
That is a hard thing to explain unless you have lived it.
From the outside, surgery can sound like the worst-case scenario. From the inside, when your quality of life has been stripped down to pain, urgency, accidents, fear and exhaustion, surgery can start to look like hope. Not simple hope. Not easy hope. But hope all the same.
I had to learn my body all over again. I had to face a stoma, a bag, scars, weakness, and a version of myself I didn’t fully recognise at first. I had to learn how to empty the bag, change it, trust it, dress with it, sleep with it, and live with it. I had to rebuild physically and mentally, one small milestone at a time.
But slowly, something shifted.
I realised I wasn’t planning toilet routes anymore. I wasn’t bleeding. I wasn’t living in constant fear of accidents. I wasn’t carrying the same panic into every car journey, every dog walk, every day out, or every normal family moment. My body was different, yes, but my life was wider again.
I lost the version of my body I had always known, but I gained a future that felt possible again.
What Ulcerative Colitis Took From Me
That doesn’t mean I am grateful for everything that happened. I don’t think we always need to wrap trauma up in a neat bow and pretend every painful thing was secretly a gift. Ulcerative colitis took a lot from me. It took confidence, energy, dignity, jobs, plans, time with my family, and years where I should have been living rather than surviving.
But I can say this: it didn’t take everything.
It didn’t take my humour. It didn’t take my determination. It didn’t take my ability to rebuild. And, eventually, it gave me a reason to speak openly about things I once felt too embarrassed to say out loud.
Living with a stoma isn’t the story people always expect to hear, but it is the story that gave me my life back. More than that, it gave me a voice.
Why I Started The Stoma Accountant
That voice became The Stoma Accountant.
At first, I created this blog as a way to document what was happening and cope with something that felt bigger than me. I wanted somewhere to put the fear, the practical details, the emotional bits, and the reality of what it was like to go from ulcerative colitis to surgery and life with a stoma. I didn’t know whether anyone would read it. I didn’t know whether it would matter to anyone else.
But if sharing this helps even one person feel less alone, less afraid, or more informed about their choices, then every difficult part of this journey has meaning beyond me.
Because this was never just a story about illness.
It is a story about ignoring symptoms until you can’t anymore. It is a story about embarrassment turning into fear, fear turning into answers, and answers turning into a long road you never expected to walk. It is a story about medication working, medication failing, and learning that hope can come in different forms.
It is a story about family, work, studying, setbacks, surgery, recovery, humour, dignity, and finding yourself again after your body changes.
Most of all, it is a story about endurance and adaptation.
I am not the same person I was before ulcerative colitis. I am not the same person I was before surgery either. But maybe that is the point. Maybe the goal was never to get back to who I was before all of this happened. Maybe the goal was to become someone who survived it, learned from it, and found a way to use it.
My Story Did Not End With Surgery
My story didn’t end with surgery.
It finally had room to continue.
And it is still being written.
Contact your GP or medical team
This is my personal experience of ulcerative colitis, stoma surgery, recovery and learning to live with a stoma. It is not medical advice.
If you are experiencing symptoms, facing surgery, recovering with a stoma, struggling with your mental health after diagnosis or treatment, or unsure about your own care, please speak to your GP, consultant, IBD team, surgeon or stoma nurse.
Life after stoma surgery with ulcerative colitis can be hard to imagine when you are still unwell, scared, exhausted, or waiting for answers. When you are planning every journey around toilets, dealing with medication that may not be working, or facing the possibility of surgery, hope can feel distant. This is a message for anyone living with UC, facing stoma surgery, recovering with a stoma, or wondering whether life can ever feel normal again.
For me, life after stoma surgery with ulcerative colitis was not about everything becoming perfect. It was about getting space to breathe again, learning that surgery was not failure, and slowly realising that a changed life could still be a full life.
This follows on from Part Seven, where I shared what it was like adjusting to life with a stoma after surgery — coming home, learning bag changes, dealing with body confidence, leaks, mental health, humour, and slowly realising the stoma was not the end of my story.
If you are reading this while you are still unwell, still waiting for answers, still counting toilets, still planning every journey around whether there is somewhere safe to go, I want you to know something important.
You are not weak for struggling.
I know how easy it is to feel like you should be coping better. You look around and everyone else seems to be getting on with normal life, while your whole day can be controlled by your stomach, your symptoms, your medication, or the fear of what might happen if you leave the house. It can feel embarrassing, frustrating, lonely, and at times completely unfair.
Living With Ulcerative Colitis Can Take More Than Your Health
Ulcerative colitis has a way of taking things quietly. It doesn’t always happen all at once. It chips away at your confidence, your independence, your energy, your spontaneity, and your ability to trust your own body. One day you realise you are no longer just going out; you are planning. You are checking toilet locations. You are thinking about traffic. You are wondering if you can hold it. You are carrying spare clothes, wipes, bags, medication, or whatever else you need just to feel safe enough to leave the house.
That is not dramatic. That is what living with this disease can become.
When Medication Does Not Work for Ulcerative Colitis
If you are fighting through medication after medication, wondering why your body won’t respond the way it is supposed to, that is not a failure on your part. I know it can feel personal when a drug doesn’t work. You put your hope into it, you deal with the side effects, you wait for the improvement, and then sometimes your body just says no. That can be crushing, especially when you have already built yourself up to believe this might finally be the thing that gives you your life back.
But that is the nature of this disease. It can be stubborn, unpredictable, and cruel. Some treatments work for some people and not for others. Some work for a while and then stop. Some give you hope and then take it away again. None of that means you didn’t try hard enough. None of it means you failed.
Facing the Fear of Stoma Surgery
And if surgery has been mentioned, or is sitting in the back of your mind like a threat, I understand that fear.
I lived with it for years.
There is something terrifying about the idea of losing part of your body. It is not just a medical decision; it is emotional. It is personal. It affects how you see yourself, how you imagine your future, and how you think other people might see you. Before surgery, I had so many questions in my head. What would life be like with a stoma? Would I still feel like me? Would people notice? Would I cope? Would I regret it? Would I ever feel normal again?
Those questions are real, and you are allowed to have them.
Surgery Is Not Giving Up
But I want to say this clearly: surgery is not giving up.
For some of us, surgery is the point where we stop sacrificing our whole life just to keep a diseased organ. It is not the easy option. It is not the lazy option. It is not failure. It is sometimes the option that gives you a future when everything else has been tried and your body simply cannot keep going the way it is.
I won’t pretend it is easy. I won’t pretend it is painless. I won’t pretend you wake up after surgery and suddenly everything feels perfect. Recovery is hard. Learning a stoma is strange at first. Your body looks different. Your routines change. Those early changes were part of adjusting to life with a stoma after surgery, one small routine at a time. Your confidence has to rebuild slowly, and your mind sometimes takes longer to catch up than your body does.
But I can tell you this honestly.
Life After Stoma Surgery Is Still Yours
There is life on the other side of it.
Not a perfect life. Not a life without awkward moments, learning curves, or difficult days. But a life where you can start making plans again. A life where leaving the house doesn’t have to revolve around toilet routes. A life where your body is not constantly dragging you back to fear, urgency, pain, blood, and exhaustion.
For me, the stoma was not the end of my story. It was the reason my story got to continue.
That is why I now share my full ulcerative colitis to stoma journey, because I know how hard it is to believe there can be life on the other side when you are still in the middle of it.
That might be hard to believe if you are in the middle of it right now. I know that when you are still unwell, hope can feel almost annoying. People tell you things will get better, and part of you wants to believe them, but another part of you is too tired to hold onto it. When you have been let down by your own body again and again, hope can feel risky.
Hope After Ulcerative Colitis and Stoma Surgery
But you are allowed to hope anyway.
You are allowed to hope for answers. You are allowed to hope for treatment that works. You are allowed to hope for surgery if that is the route you need. You are allowed to hope for a life that feels bigger than hospital appointments, medication schedules, toilet anxiety, and pretending you are fine.
You are also allowed to have bad days. Being positive and determined all the time is not realistic. I have had wobbles too. I still do. That does not mean you are going backwards. It means you are human.
If my story reaches you at a point where you feel scared, embarrassed, exhausted, or alone, then I want you to know that I get it. I know what it feels like to be the person scanning for toilets. I know what it feels like to sit in hospital waiting rooms hoping someone finally has an answer. I know what it feels like to feel betrayed by your own body. I know what it feels like to wonder whether life will ever feel normal again.
And I also know what it feels like to come out the other side and realise that life is still there waiting for you.
Changed, yes.
Different, definitely.
But still yours.
You Are Not Alone With UC or Stoma Life
If you are on the reading end of this blog and you are going through something similar, please know that you are not alone. Whether you are newly diagnosed, flaring, waiting for test results, facing surgery, recovering, or trying to learn life with a stoma, there are people who understand more than you realise.
You are going to be okay, even if okay looks different from what you imagined.
And until you can fully believe that for yourself, borrow a little bit of hope from someone who has been there.
In the closing reflection, I look back at the whole journey from first symptoms, diagnosis, flares, surgery, recovery and learning to live again.
Continue the story: After hope comes reflection — looking back at the whole journey from symptoms, diagnosis, flares, surgery, recovery and learning to live again. Read Closing Reflection – The Whole Journey
Contact your GP or medical team
This is my personal experience of ulcerative colitis, stoma surgery, recovery and learning to live with a stoma. It is not medical advice.
If you are facing surgery, struggling with symptoms, recovering with a stoma, feeling unsure about your options, or finding the emotional side difficult, please speak to your consultant, IBD team, surgeon, GP or stoma nurse.
Waking up after stoma surgery was not the inspirational moment people might imagine. It was pain, morphine, confusion, trapped wind, hospital noise, surgical wounds and the shock of realising my body had changed forever. After years of ulcerative colitis, my colon was gone and I had an ileostomy. This part of my story covers the first days of stoma surgery recovery — learning to walk again, meeting my stoma, emptying my bag, getting stronger, going home, and slowly realising that I was no longer trapped by the disease.
For anyone facing stoma surgery recovery after ulcerative colitis, the first few days can feel like a mixture of pain, relief, fear, confusion and small victories. Recovery is not just about healing from the operation. It is also about learning your new body, trusting your stoma, and realising that every small step forward matters.
This follows on from Part Five, where I shared what it was like preparing for stoma surgery with ulcerative colitis — the pre-assessment, Covid rules, steroid tapering, family emotions, accidents, and the night before colon removal.
PART SIX – WAKING UP DIFFERENT
Waking Up After Stoma Surgery
Chapter 32: Pain First
I woke up and everything was a daze.
I woke up in the recovery room and the first thing I remember seeing was the pale peach colour around me. Everything was blurred, heavy and strange, like I was there but not fully connected to what was happening yet. My brain was trying to come round, but my body seemed to get there first.
The pain was immediate. It wasn’t the kind of pain that slowly builds or gives you time to understand it. It was just there, deep across my body, reminding me before anything else could that I had just been through major surgery. My colon was gone. I had an ileostomy. My body had been opened, changed and stitched back together, and even through the fog of anaesthetic, I knew something massive had happened.
There wasn’t a big emotional moment at first. I didn’t wake up thinking deeply about my future or processing the fact I now had a stoma. I was too drugged, too sore and too disorientated for that. All I wanted was pain relief. That was the only clear thought I had.
I asked for something to help, and I was given a morphine button. At that point, that button felt like the most important thing in the world. It gave me a tiny bit of control in a situation where I had none. I couldn’t move properly. I couldn’t fully think straight. I didn’t even know exactly what state my body was in yet. But I could press that button when the pain came forward, and for a while that was enough.
I closed my eyes again and drifted in and out, letting the medication do what it needed to do. Recovery didn’t begin with bravery or inspiration. It began with pain, confusion, morphine, and the simple fact that I had made it through the operation alive.
At that moment, my wider ulcerative colitis to stoma journey had moved from fighting the disease to learning how to recover from what it had taken.
The First Night in Hospital After Colon Removal
Chapter 33: The First Night
When I woke again, it was dark and I had been moved onto a ward. I was still completely out of it from the morphine, and the whole room felt slightly unreal. I could hear noises around me, but everything seemed to reach me through a haze. I kept pressing the pain button whenever I could because the way the morphine washed over me made the pain easier to cope with, even if it also made my head feel like it wasn’t properly attached to my body.
Then the night became something I can only describe as a nightmare. There was an older man near me who became incontinent, and the smell was overwhelming. I know that might sound harsh, but when you are lying there after major surgery, unable to move properly, drugged up, exhausted and in pain, everything feels amplified. Smells, sounds, lights, movement — it all becomes too much very quickly.
Then a younger man in front of me woke up. I don’t know what condition he had, so I can only describe what it was like from where I was lying. He didn’t really speak as much as scream the same things over and over again, without much of a break. It went on for hours, and I was so tired and off my head on morphine that I couldn’t work out whether I was awake, half-asleep or trapped in some horrible dream.
I remember thinking, “What is going on? Am I in hell?” That sounds dramatic now, but at the time it genuinely felt like that. I had just had my colon removed, I was trying to understand what had happened to my body, and I couldn’t get away from any of it. I couldn’t just stand up, walk out, or reset myself. I was stuck there, trying to cope with the pain and the noise and the smell and the shock of it all.
Eventually, a nurse came over and asked if I wanted a change of scenery. I remember saying yes straight away, as long as it was quieter. At that point, I didn’t need much. I wasn’t asking for luxury or comfort. I just needed somewhere that gave me half a chance of resting, because that first night had completely overwhelmed me.
Managing Pain, Nausea and Trapped Wind After Surgery
Chapter 34: Finding My Head
When I woke up in the new room, it still felt busy, but it was somehow calmer. There were other older gentlemen around me, and because I had been wheeled in tired and not in my right mind, my memory of the room felt slightly distorted. I remember thinking there seemed to be more spaces than there probably were, like my brain was trying to piece the scene together through medication and exhaustion.
The pain around my torso was there, but it was bearable compared with the pain in my chest. That chest pain was immense. It felt like pressure, trapped wind and discomfort all rolled into one, and because it didn’t feel like the surgical pain I had expected, it worried me. Every time I tried to drink, even just a sip of water, it felt like it turned into trapped wind and pushed pressure up into my chest.
That was when I realised I needed to get my head clear before I could properly start recovering. I couldn’t focus on walking, eating, learning the bag or anything else while my mind was spinning and my body felt like it was working against me. My first goal became simply being able to see straight and understand what was going on around me.
I kept asking for pain relief and anti-sickness because the nausea and motion feeling seemed endless. Some medication came through tablets, some through the cannula, and I was still using the morphine button as well. The problem was that although the morphine helped the pain, it seemed to be making the sickness worse. The stoma team came to see me and said they had heard I’d had a bad night. Usually, they would have wanted me up and starting to learn things, but because I was in such a rough way, they decided to leave it until the next day.
They also noticed I was on morphine and suggested that could be causing the sickness. Eventually, my button was changed to another drug that included anti-sickness. It wasn’t quite as strong as the morphine, but it helped with the surgical pain without making me feel so constantly sick, which felt like progress in itself.
The physiotherapist also came to see me, but once I explained how rough I felt, he agreed to come back the next day. Then the surgical team came to check what was now called my stump, because my bowel was no longer connected in the way it had been before. That meant another uncomfortable examination and another one of those moments where dignity had to step aside because this was now just part of the recovery process.
By the end of that first full day, I still couldn’t eat or drink properly. Every sip of water seemed to create more pain and pressure in my chest, and I kept wondering what it was. Was this normal? Was something wrong? Was this pain connected to the surgery, or was it something else entirely? I had gone into surgery expecting recovery to hurt, but I hadn’t expected this strange chest and trapped wind feeling to become such a barrier.
Taking My First Walk After Stoma Surgery
Chapter 35: The First Walk
After sleeping through so much of the previous day and night, I woke up feeling the tiniest bit better. Not well, not comfortable, and definitely not ready to leap out of bed, but slightly more present than I had been. When you are recovering from major surgery, even feeling a tiny bit better can feel like a victory.
I remember thinking that this might be the day I started to properly recover. Breakfast came, and I tried to take things slowly. I had toast and managed about half a slice with butter. At the time, that felt sensible. Better than nothing. A small step towards eating again.
Unfortunately, my body didn’t seem to agree. The pain that followed was horrible, and it made me question everything again. I was hungry and wanted to get stronger, but every time I tried to take something in, my body seemed to punish me for it.
The physiotherapist arrived shortly afterwards and explained that moving might help with the trapped wind pains. In theory, that made sense. In reality, when you have barely moved since surgery and even sitting up feels like a massive task, the idea of walking feels almost ridiculous.
Getting to the side of the bed was the first battle. I was weak, sore and nervous, and as soon as I sat up, the room started spinning. The physiotherapist told me to take a moment, but my determination kicked in. I grabbed his arm, pulled myself up, and somehow got to my feet.
Then came the first steps. They weren’t proper confident steps. They were tiny, careful, pitter-patter steps while I held onto my magic button machine and tried to convince my body that moving was safe. We walked out of the room, and not only did we make it out, we completed a full lap of the ward.
That was huge.
Before surgery, a lap of a hospital ward would have meant nothing. After surgery, it felt like climbing a mountain. The pain was intense, and even though I burped at one point, hoping it would release some of the pressure, it didn’t really bring the relief I wanted. But I had done it. I had got up, moved, walked and made it back.
Afterwards, I was placed in a chair while they changed my bed. Even sitting upright made me feel dizzy and frail, but there was something important about not being flat on my back. It felt like a small shift from being completely helpless towards being part of my own recovery.
That was when the ward laps started to become a goal. I called them victory laps, because that is what they felt like. Each one was proof that my body, however battered, was still capable of moving forward.
Meeting My Stoma for the First Time
Chapter 36: Meeting My Stoma
Later that day, the stoma nurse came to see me. The nurses had already left a pack by my bed with everything I would need while I was in hospital: stoma bags, wipes, bin bags, adhesive remover spray and all the other bits that were suddenly part of my new normal.
The stoma nurse started going through everything with me and explaining how it all worked. Then he noticed that my bag was full, so before we could go too far into the lesson, it needed emptying. I was still feeling dizzy and rough, and all I could think was that I really hoped I didn’t pass out while this was happening.
There is something incredibly humbling about that moment. You are sitting there weak after surgery while someone teaches you how your body now works. It isn’t just medical. It is personal. This was my body, my stoma, my bag, my life from that point onwards, and I had to learn how to manage it.
He used the adhesive remover spray and slowly peeled the bag away from my skin. That was the first time I properly came face to face with my stoma. I don’t know exactly what I expected to feel. I had practised with a fake one before surgery, and I had imagined this moment plenty of times, but imagining it and seeing the real thing are completely different.
Surprisingly, my first thought wasn’t panic. It wasn’t disgust or horror either. It was more like, “It’s not actually that bad. I can live with this.”
That doesn’t mean it was easy, and it doesn’t mean I instantly accepted everything. But I didn’t fall apart, and that mattered. This thing I had feared and prepared for was now actually there. It was swollen, red, strange and new, but it was also doing the job my diseased colon could no longer do.
That first proper look stayed with me. It was the moment the stoma stopped being an idea and became something real. It was part of me now, and whether I was ready or not, I had to start learning how to live with it.
Early Recovery With a New Ileostomy
Chapter 37: New Year, New Me
Recovery Day 3 was New Year’s Day, which felt strange in itself. Most people start a new year with plans, resolutions, hangovers or leftover Christmas food. I started mine in a hospital bed with a new stoma, a body full of pain and a head full of questions.
That day, I started taking Nystan. I was hoping it would help with the horrible pain that seemed to be stopping me from eating and recovering properly. I wanted so badly to eat, build strength and move forward, but every time I tried, something in my body seemed to fight back. I had a couple of doses during the day, and although part of me was convinced it wasn’t going to work, I kept taking it because I needed something to change.
My consultant, Dr Walker, came to check on me, and I explained that the pain I was struggling with didn’t feel like normal surgical pain. It felt separate, like something else was going on alongside the operation recovery. Then the ward doctor came and told me my inflammation markers were still up, which was exactly the kind of thing I didn’t want to hear after having my colon removed.
My immediate thought was, “Great, I’ve just gone through all of this and the colitis is still there.” I know now that inflammation markers after surgery can be complicated, and it doesn’t always mean what your frightened brain thinks it means. But at the time, I needed to believe the disease had gone. I had gone through the surgery because colitis had destroyed my quality of life, so hearing that my markers were still raised hit me hard.
Then came the catheter removal. The healthcare assistant assured me it wouldn’t be painful, which turned out to be a lie. I took a deep breath in, then out, and when it was removed, it stung like hell.
After that, I had to manage three wees in twelve hours, otherwise I would need a bladder scan and potentially risk having the catheter put back in. That was not happening. I didn’t care how weak I felt or how much effort it took to get up and down; I was determined my body was going to work because I absolutely did not want that catheter back.
From that point, I started going to the toilet on my own. It sounds like a basic thing, but in recovery it was another milestone. Every little bit of independence mattered, and on New Year’s Day, in the strangest way possible, it really did feel like new year, new me.
Learning to Empty My Stoma Bag
Chapter 38: Small Victories
Recovery Day 4 was the day I decided I was going to empty my bag on my own, with supervision. That might sound like a small thing from the outside, but it didn’t feel small at all.
Until you have a stoma, you don’t realise how much confidence comes from learning the practical side of it. Accepting that you have a bag is one thing. Knowing you can actually manage it yourself is another. Emptying it for the first time was a huge step towards believing I could cope outside the hospital.
That first bit of confidence became the start of learning the routines that would later shape everyday life with a stoma.
I emptied the contents into a sick bowl, wiped the bottom of the bag, closed it back up and realised it wasn’t as hard as I had built it up to be in my head. That doesn’t mean it wasn’t strange, because it absolutely was, but it was manageable. In that new world I had been thrown into, “manageable” was a very powerful word.
I had started to feel a little better, so I went for two victory laps of the ward. Two laps felt amazing at the time, although I quickly learned that recovery always made you pay for effort. After pushing myself, I slept a lot of the afternoon away because my body clearly needed to recover from recovering.
The surgical team came round and said I was looking fit, healthy and really well. It was strange hearing that while still feeling so weak and battered, but I took it. In hospital, any positive comment becomes something you hold onto. It makes you feel like maybe you are doing better than you think.
That night, my stoma area started itching where I couldn’t scratch, which was a very specific kind of frustration. I could feel it, but I couldn’t properly do anything about it. I ended up watching Netflix until it settled down, and that became another reminder that recovery wasn’t just about pain going away. It was about learning all these new sensations and working out what was normal for this changed body.
Showering, Family Visits and Hospital Recovery Milestones
Chapter 39: The Best Day
Recovery Day 5 was the first day I had enough energy to take a shower. That might sound gross, but after days in a hospital bed, sweating, being checked, taking medication, being attached to things and feeling completely unlike yourself, a shower feels like a proper milestone.
It wasn’t relaxing in the way a normal shower is. It was tiring, awkward and took effort, but it made me feel more human. Hospitals have a way of reducing you down to being a patient, and something as simple as washing yourself gives a little piece of your identity back.
Afterwards, I rested in the chair and managed to finish reading the Justice League comic my daughter had got me for Christmas. That little bit of normality meant a lot. I wasn’t just the man in the hospital bed with the new stoma. I was still Dad. Still Chris. Still someone who could sit and read a comic from his daughter and feel connected to life outside the ward.
That day, I emptied my bag twice on my own, with a healthcare assistant holding the bowl. My shoulder pain had started to die down, and the cannula was removed, which felt like another little piece of freedom. Every tube or line that came out made me feel slightly less like I belonged to the hospital and slightly more like I might be heading home.
The best part of the day was seeing my fiancée and my two youngest kids. Because of Covid, they weren’t allowed onto the ward, but I was able to meet them outside for ten minutes. Ten minutes doesn’t sound like much, but after major surgery, no visitors and days of hospital walls, those ten minutes meant everything.
Seeing them gave me even more determination to get well again. It reminded me why I had gone through the surgery and why I needed to keep pushing through the difficult bits. I managed five victory laps in total that day, which felt amazing. My strength was definitely starting to return, and for the first time, going home didn’t feel like a distant idea. It felt possible.
I got to sleep at around ten, although I woke again after observations and the itchy stoma site returned. Even on a good day, recovery still liked to remind me it was in charge. But compared with where I had been a few days earlier, this really did feel like the best day so far.
Going Home After Stoma Surgery
Chapter 40: Going Home
Recovery Day 6 started with a feeling that it was going to be a good day. I woke up, went to the toilet, managed two victory laps before eight in the morning and had breakfast. After everything that had happened, that felt like a strong start.
Then the registrar came to see me and asked, “Do you want to go home?” I don’t think there are many sentences that sound better than that when you have been in hospital recovering from major surgery.
She said Dr Mitchell would come and see me, but she was happy for me to go home that day. She also explained that my inflammation markers were back down, which gave me a massive sigh of relief. After worrying that the colitis was somehow still there, hearing that things were settling finally allowed me to breathe a bit easier.
Dr Mitchell came round next, checked me over and explained that the glue would go after about two weeks. He said I was recovering really well. The final step was getting the all-clear from the stoma team.
That meant changing the bag by myself while they watched. It wasn’t just a practical test; it felt like a confidence test. Could I manage this without someone stepping in? Could I go home and look after this new part of my body? Could I trust myself enough to leave the safety of the ward?
I changed the bag completely unaided, and I did it properly. The stoma nurse was happy to send me home, and that moment felt massive. It wasn’t just about getting a medical sign-off. It was proof that I could do the thing I had been so scared of. I could manage the bag. I could learn this new routine. I could start taking care of myself again.
After that, I waited for my medication to take home, and then I was sent on my merry way. I had woken up thinking it was going to be a good day, and for once, I was right. I was going home.
The First Week at Home With a Stoma
Chapter 41: The Quiet Realisation
Leaving hospital felt strange because I wasn’t leaving as the same person who had gone in. I had walked into that building with a diseased colon that had controlled years of my life. I was leaving without it, with a stoma, a bag, surgical wounds, weakness, pain and a body I now had to relearn.
Going home wasn’t the end of recovery. It was the beginning of a new kind of recovery, one without nurses nearby, without buzzers, without regular observations, and without someone there to step in if I panicked. Hospital had been hard, but it had also been a safety net. Home meant I had to start trusting myself.
The first week back was tough. There were so many basic things I had taken for granted that I suddenly couldn’t do properly. Sitting up was difficult because my stomach muscles were so weak. Sleeping on my side wasn’t happening, which was frustrating because I have always found it hard to sleep on my back. I couldn’t lift anything heavier than the kettle, and because I suffer with OCD, not being able to clean the house properly drove me mad. With seven of us in the house, it doesn’t stay tidy for long, and having to just sit there looking at things I couldn’t sort out was difficult.
Even bending down to pick things up from the floor became impossible, and you don’t realise how often you do something that simple until it is taken away from you. The stairs became one of my biggest challenges and eventually one of my biggest triumphs. At first, getting up and down them was a slow pitter-patter process, one foot at a time, either holding onto my fiancée or clutching the bannister like my life depended on it. I avoided them unless I absolutely had to use them.
Then, little by little, I improved. I went from barely managing the stairs to walking up and down with one foot on each step, only holding on with my fingertips. That kind of progress gives you pride in a way you don’t expect. Before surgery, stairs were just stairs. After surgery, they became proof that I was getting stronger.
There were still frustrations, awkward moments and plenty of learning to do, but underneath all of that, one truth started to settle in. The disease had gone. For the first time in years, my bowel wasn’t controlling every decision. I wasn’t planning toilet routes, having accidents, bleeding, living on steroids or carrying the same fear everywhere I went.
I wasn’t fully healed, and I wasn’t suddenly confident with everything. I still had to learn how to live with the bag properly, how to trust my body again and how to rebuild strength. But I wasn’t trapped anymore.
And after years of ulcerative colitis taking more and more from me, that was the first real glimpse of freedom.
Contact your GP or medical team
This is my personal experience of recovering after stoma surgery for ulcerative colitis, including hospital recovery, pain relief, learning to walk, meeting my stoma, emptying my bag and going home. It is not medical advice.
Recovery is different for everyone, so always speak to your surgeon, stoma nurse, consultant or IBD team about your own recovery, stoma care, diet, medication, pain, wounds and any symptoms that worry you.
Some of the links below are affiliate links. This means I may earn a small commission if you buy through them, at no extra cost to you. I only include things that genuinely connect to my own experience.
Things That Helped Me During Stoma Surgery Recovery
By this stage, I was no longer preparing for surgery. I was recovering from it. My body was weak, sore and changed, and even simple things like walking, showering, sleeping, eating and managing my stoma bag took more effort than I expected.
These are a few practical things that helped during the early days of stoma surgery recovery, hospital discharge and the first week at home with a new ileostomy.
Comfortable Loungewear or Pyjamas
Comfortable clothing matters when your body already feels uncomfortable and you are preparing for hospital, surgery or recovery.
Why it helped: ✔ Softer and easier to wear when bloated, sore or tired ✔ More comfortable for resting, hospital packing or recovery days ✔ Helped me feel a little more human during a difficult stage
Hospital waiting rooms, emergency toilet trips, and long appointments meant my phone battery was always dying at the worst times.
Why it helped: ✔ Kept my phone charged for messages, calls and updates with family ✔ Useful during long waits, appointments and hospital stays ✔ Helped me feel less cut off when I was away from home
A toiletry bag sounds basic, but when you are going into hospital, having your personal items together can make a big difference.
Why it helped: ✔ Kept essentials like toothbrush, deodorant and shower items organised ✔ Made hospital packing quicker and less stressful ✔ Helped me keep a small sense of normal routine while away from home
When surgery is booked, having your hospital things organised in one place can make the whole process feel slightly less overwhelming.
Why it helped: ✔ Kept important items together instead of scattered everywhere ✔ Made packing for hospital feel more manageable ✔ Helped me feel a bit more prepared when everything else felt uncertain
Once stoma surgery was booked, ulcerative colitis stopped being something I was only trying to manage and became something I was preparing to leave behind. My colon was going to be removed, I was going to have an ileostomy, and suddenly everything felt real. This part of my story covers the final wait before surgery — pre-assessment, Covid rules, steroid tapering, stoma nurses, practice bags, Christmas, accidents, family emotions, and the night before everything changed.
For anyone preparing for stoma surgery with ulcerative colitis, the waiting can feel just as difficult as the operation itself. You are trying to understand what will happen to your body, what life with an ileostomy might feel like, what recovery could look like, and how to keep your head steady while everything around you carries on as normal.
Waiting for Stoma Surgery After Ulcerative Colitis
Chapter 26: The Countdown Begins
Once surgery was agreed, everything changed in the house, even though nothing looked different from the outside.
There wasn’t some huge dramatic moment where life suddenly stopped. The washing still needed doing. The kids still needed parenting. Christmas was still coming. The dog still needed walking. Meals still had to be made, presents still had to be sorted, and everyone was still trying to carry on as normally as possible. But underneath all of that, there was this quiet countdown ticking away.
The conversation had moved from if to when.
For years, surgery had been the thing at the end of the road. It was the last resort, the thing mentioned in hospital rooms when drugs failed or symptoms became too much. It was always there in the background, but it still felt slightly distant. Something that might happen one day, but not quite yet.
Now it was real.
My colon was going to be removed, and I was going to have a stoma.
Looking back, this was the moment my wider ulcerative colitis to stoma journey stopped being something I was writing about and became something I had to physically live through.
There was no more waiting to see if one more drug could pull me back. No more hoping a flare would settle. No more trying to convince myself I could keep pushing through if I just held on a little longer. My own immune system had caused too much damage, and no medication could reverse what had happened.
The surgery was booked for ten days’ time.
Because it was Christmas week, I was allowed to go home and spend the festive period with my family, as long as things didn’t get worse and I didn’t need emergency surgery before then. That is a strange thing to be told. Go home. Enjoy Christmas. Make memories. But also prepare yourself to come back and have an organ removed.
I don’t think you can ever fully prepare for that. You can read the leaflets, ask the questions, meet the nurses, talk about the operation, and tell everyone you are okay. But there is still a part of you that stands on the edge of it all thinking, “How do I actually get my head around this?”
I was beginning to come to terms with the fact that I was having one of my organs removed, but I don’t think I was ever going to be mentally prepared in a neat and tidy way. At some point, I was just going to have to take a deep breath, step out of my comfort zone, and go through the looking glass.
The anxiety wasn’t just mine either. Emotions were starting to run high in the house, even when nobody said it directly. Everyone was dealing with it in their own way. You could feel it sitting underneath normal conversations, Christmas plans, cups of tea, wrapping paper, and all the usual family noise.
Did that mean Christmas 2020 was ruined? Absolutely not.
If anything, I became more determined that it wasn’t going to be. I wanted the kids to have Christmas. I wanted us to make the most of it. I wanted memories that weren’t only about hospitals, illness, and surgery. I didn’t want ulcerative colitis taking that as well.
Around the same time, I had been working hard to get the blog up and running. Partly, it was for my own coping mechanism. I needed somewhere to put everything that was happening in my head. The fear, the questions, the practical side, the emotional side, and all the things that are hard to explain properly out loud.
But I also hoped that if someone else ever found themselves in the same position, they might read it and feel a little less alone. That mattered to me. I knew how isolating bowel disease could feel, especially when you’re dealing with symptoms people don’t talk about openly. If sharing the messy, honest version helped even one person, then it was worth doing.
Getting the blog set up wasn’t as straightforward as I thought it would be. I gave the design a good crack, although I could see all the little imperfections, which was probably my OCD kicking in. But it didn’t need to be perfect. It just needed to exist. I needed somewhere to document what was about to happen.
I also decided I needed to feel like myself before surgery.
So that day’s theme became: to feel fresh again.
I finally got my hair cut by Gareth at Scallywags. Clean cut. Shaven. More like me. It might sound like a small thing, but when your body feels like it is falling apart and a major operation is waiting for you, the small things become important. Looking in the mirror and seeing a version of yourself you recognise can give you something to hold onto.
I remember wondering how long it would be after surgery before I felt fresh again. How long before I looked like myself? How long before I felt like myself? How long before this huge change stopped feeling like something happening to me and started feeling like part of my life?
I didn’t know the answers.
All I knew was that the countdown had started, and I needed to keep my head as steady as I could.
Pre-Assessment Before Stoma Surgery
Chapter 27: Pre-Assessment Day
The next big step was pre-assessment at Torbay Hospital.
It was the furthest I had driven in over a week and the longest I had been out of the house since being admitted. When you are living with severe urgency, pain, and constant symptoms, even a hospital appointment becomes something that needs planning. You don’t just get in the car and go. You think about toilets, timing, traffic, how your stomach feels, and what might happen if your body decides it has other plans.
To make things even more interesting, I was tapering off Prednisolone quickly ready for surgery, which meant the colitis was starting to unmask itself again. The steroids had been holding certain symptoms back, and as they reduced, the disease started reminding me exactly why surgery was happening in the first place.
By the time I got to the hospital, I had already needed two toilet stops.
Then came the joy of trying to find where I actually needed to go. I remember walking through the winding corridors, confused by signs that seemed to suggest Level 7 existed but somehow didn’t give access to pre-assessment. I went up and down the wrong stairs, trying to make sense of where I was meant to be, while my stomach started to burn.
All I could think was, “Really? Why couldn’t this have happened ten minutes ago?”
Eventually, I found the elevator that took me to pre-assessment. The doors opened, and thankfully the reception desk was straight ahead. The ladies behind the counter greeted me, and the only thing I could get out was, “Do you have any toilets around here?”
They did have toilets, but because of Covid, I had to wait while they took my details and temperature first. That was one of those moments where the rules made sense, but your body absolutely did not care. I remember thinking, “Great. Thanks, Covid. Delaying the inevitable once again.”
My temperature was 36.4, and I was finally pointed in the right direction. Thankfully, I made it in time.
After that, I sat in the waiting area with my thoughts racing. What was about to happen? What would they ask? What would they tell me? Was this appointment going to make everything feel more real than it already did?
Part of me even imagined asking someone to take photos for the blog, like I could somehow turn the appointment into a documented milestone. In reality, I knew I probably wouldn’t. Some moments disappear too quickly, and others feel too strange to interrupt.
I was taken into a room where they checked my height, weight, and blood pressure. I have found those observation machines can be temperamental at the best of times, and this one seemed determined to prove that point. It took multiple attempts, which is exactly what you want when you’re already anxious and trying to get through a hospital appointment without your body kicking off again.
Then came the MRSA swabs.
The first part was a bit like a Covid test. One swab around the mouth, one up both nostrils, and then the lady left the room so I could do the third one along my groin on my pant line. By that point, I was learning that pre-surgery preparation comes with a lot of small indignities that nobody exactly advertises.
Next, I went into another room and met Jane.
She went through all the questions about previous medical conditions and talked me through what would happen on the day of surgery. She also confirmed something I knew was probably coming, but still didn’t want to hear.
Because of Covid, I wouldn’t be allowed visitors.
That hit hard.
Having major surgery is frightening enough. Having it during a pandemic, knowing your family won’t be able to come and sit by your bed afterwards, adds a completely different weight to it. It meant I would be going through the immediate aftermath largely on my own, surrounded by hospital staff and other patients, but without the familiar faces I needed most.
Jane also talked me through the medicines I would need before the operation, gave me an information pack, and explained that how long I stayed in hospital would depend partly on how quickly I picked up using my new stoma.
My new stoma.
Even that phrase felt strange.
That evening, I had my first little practice with the stoma kit. The stoma nurse at Torbay had given me a pack with a fake stoma, some stoma bags, and a guide on what to expect. I’m not going to lie, it was weird. There is no other word for it.
Having this red thing attached to my stomach, even as practice, felt bizarre. The bag felt peculiar stuck to my skin with the adhesive. I kept wondering what the real thing would feel like. Would it feel heavy? Would I constantly notice it? Would it pull on my skin? Would I feel like something was hanging from me all the time?
I didn’t know.
What I did know was that I was going to have to get used to it, because there wasn’t really a choice anymore. This wasn’t an optional bit of kit. This was about to become part of how my body worked.
That night, the reality of it all sat with me properly.
The appointment was done. The instructions were given. The practice bag had been tried. The countdown was still moving.
And surgery no longer felt like something in the distance.
Family, Fear and Accepting Stoma Surgery
Chapter 28: Happy Birthday to Me
Christmas Eve was also my birthday.
The big 33.
I was rudely awoken by the cat meowing at about 5:30 in the morning, which wasn’t exactly the grand birthday entrance I might have hoped for. Then I spent the next half an hour bleeding in the bathroom, because ulcerative colitis clearly didn’t care that it was my birthday.
But I wasn’t letting it ruin the day.
Not that day.
It was Christmas Eve, it was my birthday, and for once the disease and the operation could do one. I know that sounds blunt, but that was genuinely how I felt. I had given so much of my time, energy, body, and mental space to this illness. I didn’t want it owning that day as well.
When I came back into the bedroom, I was showered with gifts from my beautiful fiancée, my son, and my youngest daughter. In that moment, I can honestly say I was happy. Not pretending to be happy. Not putting on a smile so people didn’t worry. Actually happy.
That mattered more than I can explain.
When you are seriously unwell, happiness can sometimes become something you perform for other people. You smile because you don’t want the room to feel heavy. You joke because it makes everyone else more comfortable. You say you’re fine because explaining the truth is exhausting. But that morning, surrounded by my family, I felt something real and warm cut through all the fear.
The children made that day what it was.
Being a parent is an amazing thing. That unconditional love is just there, set in stone. Being a step-parent is different. It comes with its own challenges, its own place to find, and its own quiet questions about where you fit. I had been a stepdad to my three older girls for nearly a decade. They had always called me Chris because their dad was still around, so there had always been that natural split in the father figure role.
But I had tried my best.
That birthday, they spoilt me rotten. Not with expensive presents or anything over the top, but with words. And those words had me in floods of tears.
I don’t think they realised how much I needed that before surgery. With everything coming the following week, I needed to feel grounded. I needed to feel loved. I needed to know that the people I had helped raise knew what they meant to me, and maybe that I meant something to them too.
That day gave me a kind of peace I didn’t know I needed.
I looked at my family and felt unity. My tribe. That might sound dramatic, but that is what it felt like. They were my people. The ones I was doing all of this for as much as myself. The ones I wanted to come home to. The ones I wanted a better life with once the illness was no longer controlling everything.
The day was still painful. The dizziness from tapering the steroids was annoying, and my body was still very clearly unwell. None of that magically disappeared because it was my birthday. But emotionally, I felt stronger.
People had started asking whether the bag would be forever. Would I get it reversed one day? Would I want things put back to how they were?
At that point, my quality of life had been so bad that appearance wasn’t the thing leading my thoughts. I knew reversal might be an option for some people, but I also knew it could mean going back to the toilet many times a day. In my eyes, that sounded like being back at square one.
I didn’t want to go back to living around symptoms, panic, accidents, protective underwear, rescue packs, and fear. I didn’t want my life to keep being measured by where the nearest toilet was. I wanted freedom, even if that freedom came in a form I never expected.
So by that point, I think I was at peace with the transformation.
Or at least, as much as anyone can be at peace with something before it actually happens.
Christmas Before Ulcerative Colitis Surgery
Chapter 29: Merry Christmas, Ya Filthy Animal
Christmas Day itself came and went in the strange way Christmas sometimes does when something huge is hanging over you.
I actually wrote about it on Boxing Day because I needed to disconnect from everything for a bit. I didn’t want to spend Christmas obsessing over surgery, the blog, or what I was going to write. I wanted to enjoy the day with my family, even though truthfully, I don’t think it was possible to fully put the operation out of my mind.
Our Christmas started at 2:30 in the morning because my very excited youngest daughter misread the two on her Lego Superman alarm clock as a five. Classic Christmas chaos. Thankfully, she went back down until six, then woke the others up, and the stockings and presents began.
For a while, it was just Christmas.
There was wrapping paper everywhere, excited children, noise, presents, food, and all the little moments that make the stress of Christmas worth it. I tried to stay present in it, because I knew things were about to change. I knew this was the last Christmas before surgery, before the stoma, before my body became different forever.
But colitis still found a way to give me a Christmas present of its own.
Because I was coming off Prednisolone ready for surgery, the symptoms it had been holding back were starting to rear their ugly heads again. Blood, mucus, urgency, pain. All the things I was desperate to leave behind were making one final appearance.
Me and my fiancée decided we should get the dog walked as early as possible, so we took him over to the Botanical Gardens in Shaldon. We drove across the bridge, and then I got the feeling.
Not just a normal “I need the toilet” feeling.
The horrible one.
The stabbing pain that started on my right side and moved across to the left. The kind of pain that tells you something is moving through, and your body is giving you very little warning. At that stage, it could have been mucus, blood, stool, or all of the above. The only thing I knew was that I needed a toilet quickly.
Luckily, there was a disabled toilet on route, so I parked nearby. Then I saw the queue. A socially distanced queue of about six people waiting, because all the normal toilets were closed.
There was no time.
I jumped back in the car and carried on to where we were going, hoping there would be somewhere quiet enough for me to sort myself out. I was trying to stay calm, but that kind of urgency doesn’t leave much room for calm. Your brain goes into emergency mode. You’re scanning for options, planning exits, calculating seconds, and hoping your body gives you just a tiny bit more time.
It didn’t.
The accident happened.
I don’t know whether you have ever been in that situation, but I have been in it many times, and I can tell you it does not get easier. It makes you feel humiliated, filthy, ashamed, and exposed, even when nobody else knows what has happened. Even when you understand logically that you are ill. Even when you know it isn’t your fault. Emotionally, it still hits you hard.
I grabbed my rescue pack and dealt with it as best I could. That pack had become part of my life by then: protective underwear, spare underwear, wet wipes, dog poo bags, anything that meant I could clean myself up and not leave anything unsanitary behind. It wasn’t glamorous, but it was necessary.
I caught up with my fiancée and the dog because I wanted to make sure I at least got five minutes of exercise before going home. It was Christmas Day, and it was busy. Families were everywhere. I remember speeding past people, convinced they would somehow know what had happened, even though realistically they probably had no idea.
That is what this disease does to your head.
It makes you feel visible in the worst possible way, even when nobody is looking. It makes you feel ashamed of something you didn’t choose. It takes an ordinary moment, like walking the dog on Christmas Day, and turns it into something you have to recover from.
That day was the first time in a long time that I properly felt sick. I knew I was clinically poorly, but this was different. I felt like other people could look at me and see a poorly man. I felt the sadness of it, not just the symptoms.
By then, the waiting felt long. I wasn’t dreading surgery in the same way anymore. I was willing it to happen. I wanted no symptoms, no drugs, no accidents, no more Christmas Day moments ruined by a colon that had already taken enough from me.
Three days to go.
The Night Before Colon Removal Surgery
Chapter 30: Zero Hour
The next day was Covid swabbing day.
Anyone who hadn’t had a Covid test at that point might have imagined it was worse than it was. It wasn’t pleasant, but it wasn’t something to be afraid of either. I parked in a bay at Newton Abbot Racecourse, they swabbed my throat, then up my nostril, and it was done within about five minutes.
In and out.
I just needed it to come back negative, because by then the thought of anything delaying surgery was almost unbearable.
That same day was also the first day I was completely off steroids, and my body noticed quickly. The pain became unbearable. It wasn’t just my usual symptoms anymore. They were now joined by this excruciating stomach pain that wouldn’t go away and became worse when I ate.
I assumed it was something to do with coming off Prednisolone, but whatever it was, it felt like my body was having one final protest before surgery. It was as if my colon knew its time was up and wanted one last go at making life difficult.
We took Christmas down that day as well. That might sound like a small thing, but it felt practical and necessary. I didn’t know how mobile I would be after the operation, and I didn’t want to come home to jobs that needed doing. Once the decorations were gone, the house looked massive and clean. A proper squash and a squeeze moment.
But the pain wouldn’t leave me alone.
It kept grinding away in the background, then pushing itself right to the front. I was getting close to the point of calling an ambulance and going into hospital early. That was the reality of where I was. I wasn’t waiting comfortably. I wasn’t calmly counting down the hours. I was in serious pain, trying to make it to the planned surgery date because I knew I was nearly there.
One more full day. That was what I kept telling myself.
One more full day and then we would be at zero hour.
The strange thing about waiting for major surgery is that time feels completely wrong. It moves too fast and too slowly at the same time. Part of you wants more time because you know life is about to change forever. Another part of you wants the clock to hurry up because you cannot keep living as you are.
That was exactly where I was.
I was scared, of course I was. I don’t think anyone goes into something like that without fear. But I was also ready. Ready for the bleeding to stop. Ready for the accidents to stop. Ready for the drugs to stop. Ready for my life to stop being controlled by a diseased colon that had taken far too much from me already.
The night before surgery wasn’t peaceful. I was in pain, my mind was busy, and my body was exhausted. Everything felt heavy. I thought about my family, my fiancée, the children, the years of illness, the hospital rooms, the drugs, the false starts, and all the times I had hoped something would work only to end up back in the same place again.
I also thought about the version of me who had first ignored those symptoms all those years earlier. The 26-year-old bloke who thought it might just go away. Now here I was, days after my 33rd birthday, preparing to have my colon removed.
That is a lot to take in.
But underneath all of it, there was one clear thought.
I couldn’t keep living the way I had been living.
So if this was the way out, then I had to take it.
Zero hour was coming, and this time I wasn’t running from it.
Letting Go Before Life With a Stoma
Chapter 31: Letting Go
Surgery day arrived.
I woke up feeling determined but anxious, which is probably the only honest way to describe it. I knew this operation needed to happen. I knew my quality of life had become almost non-existent. I knew I couldn’t carry on with the bleeding, urgency, accidents, pain, rescue packs, and the constant fear of what my body might do next.
But knowing something is right doesn’t automatically make it easy.
The previous 24 hours hadn’t exactly helped. I had spent the day drinking the pre-surgery drinks, but then spent the night throwing them back up. Not the ideal preparation when you are already weak, in pain, and about to have major surgery.
I was still in agony. The pain that had been building since coming off the steroids was still there, grinding away in my stomach. Part of me kept thinking that hopefully this would go once I had the ileostomy. Hopefully this was the final stretch. Hopefully, when I woke up, this diseased part of me would no longer be controlling everything.
We arrived at the hospital, and I made my way through the familiar winding corridors towards the surgical admissions room I had been in before. There is something strange about walking into hospital knowing you won’t be walking out the same.
I had been in hospital plenty of times by then. Appointments, scopes, infusions, admissions, blood tests, waiting rooms. But this felt different. This wasn’t another attempt to calm things down. This wasn’t another drug, another scan, or another “let’s see how you go.” This was the line.
When I got to surgical admissions, they took my temperature.
It came up as 37.8.
The ladies behind the desk started to panic slightly because it was high, and immediately my brain started doing what brains do in moments like that. Was it nerves? Was it the illness? Was it because I was wrapped up in my fleecy hoodie? Was it Covid?
Surely it couldn’t be Covid. I had been so careful since my test. I had shielded myself as much as possible because I needed this operation to happen. At that point, life felt non-existent without it.
I remember stripping layers off and almost pleading with them that maybe I was just too wrapped up. They took it again. It was still high, but within the allowed parameters, and I was allowed through. That felt like the first hurdle of the day.
From there, I was taken to a room where I changed into a gown and put on the surgical stockings. I answered questions, confirmed my details, confirmed what was happening, and waited.
That is the odd thing about surgery day. For something so huge, there is a lot of waiting. You are mentally standing on the edge of the biggest moment of your life, but around you everything is routine. Forms, observations, names, wristbands, staff coming in and out. To them, it is a working day. To you, it is the day your life splits into before and after.
The stoma nurse came in and drew a black mark on my belly. She explained that this was where my stoma was going to go. I had talked about it, practised with the fake stoma, seen the bags, and tried to imagine life afterwards, but that black mark made it real in a completely different way. That spot on my stomach was about to become part of me.
Then I met the anaesthetist. He explained how I would go under slowly and joked that if they counted down from ten, they would probably end up at minus twenty. I appreciated the humour, even if my head was too full to fully enjoy it.
Finally, I met the surgeon. He wasn’t worried about the temperature and suspected it was because of the colitis rather than Covid, but they still needed to test me again so that if I did have it, even though I had been shielding, I would recover somewhere different. Another Covid test. Another small reminder that this was surgery during a pandemic, and nothing about it was going to be simple.
Then I waited a little longer.
I don’t know exactly what I thought about in those final moments. Probably everything and nothing all at once. My family. My fiancée. The kids. The years of illness. The accidents. The rescue pack. The drugs. The exams. The jobs. The version of me who had tried so hard to keep going even when my body was falling apart.
Eventually, it was time.
I was taken down to the surgical room and laid on the bed. A cannula was inserted into my hand, and an oxygen mask was placed over my face. The anaesthetist told me they were just filling my lungs with air and to keep taking deep breaths.
So I did.
I breathed in and out, trying to stay calm, knowing there was nothing more for me to do. No more fighting symptoms. No more trying to hold on. No more pretending I could control what my body was doing.
For once, I had to let everyone else take over.
I closed my eyes and handed myself over completely.
The next part of the story was waking up after stoma surgery and beginning to understand what life with an ileostomy actually felt like.
Contact your GP or medical team
This is my personal experience of preparing for stoma surgery after severe ulcerative colitis, including pre-assessment, steroid tapering, Covid testing, stoma nurse support and waiting for colon removal surgery. It is not medical advice.
Surgery, stoma care and recovery are different for everyone, so always speak to your consultant, surgeon, stoma nurse or IBD team about your own treatment, operation and recovery.
You can also read NHS guidance on why an ileostomy may be needed, and Crohn’s & Colitis UK information about surgery options for ulcerative colitis.
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Things That Helped Me While Waiting for Surgery
By this stage, I wasn’t dealing with early symptoms anymore. I was dealing with waiting for surgery, hospital packing, pre-assessment, family emotions and preparing for the operation.
These are a few practical things that helped me feel slightly more prepared during one of the hardest stages of my UC journey.
Hospital Bag Organiser
When surgery is booked, having your hospital things organised in one place can make the whole process feel slightly less overwhelming.
Why it helped: ✔ Kept important items together instead of scattered everywhere ✔ Made packing for hospital feel more manageable ✔ Helped me feel a bit more prepared when everything else felt uncertain
Comfortable clothing matters when your body already feels uncomfortable and you are preparing for hospital, surgery or recovery.
Why it helped: ✔ Softer and easier to wear when bloated, sore or tired ✔ More comfortable for resting, hospital packing or recovery days ✔ Helped me feel a little more human during a difficult stage
Hospital waiting rooms, emergency toilet trips, and long appointments meant my phone battery was always dying at the worst times.
Why it helped: ✔ Kept my phone charged for messages, calls and updates with family ✔ Useful during long waits, appointments and hospital stays ✔ Helped me feel less cut off when I was away from home
A hot water bottle or heat pad was one of those small comfort items that helped me feel a little more settled during painful or uncomfortable days before surgery.
Why it helped: ✔ Provided gentle comfort when my stomach felt sore or unsettled ✔ Helped during rest days when I was exhausted and run down ✔ Made home feel a bit more comforting while waiting for surgery
A toiletry bag sounds basic, but when you are going into hospital, having your personal items together can make a big difference.
Why it helped: ✔ Kept essentials like toothbrush, deodorant and shower items organised ✔ Made hospital packing quicker and less stressful ✔ Helped me keep a small sense of normal routine while away from home
A symptom journal or notes book can be really useful when there is a lot to remember and your head feels full of appointments, questions and emotions.
Why it helped: ✔ Gave me somewhere to write symptoms, questions and hospital information ✔ Helped me remember what I wanted to ask doctors or stoma nurses ✔ Made the waiting stage feel slightly more structured and less chaotic
