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.
Coming home after stoma surgery was when the real adjustment began. In hospital, recovery had structure, nurses, routines and support. At home, I had to learn how to live with a changed body, surgical wounds, weak stomach muscles, a stoma bag, leaks, bag changes, body confidence, mental health wobbles, and the strange feeling of not quite recognising myself. This part of my story is about adjusting to life with a stoma after surgery — not perfectly, not instantly, but slowly, honestly, and one small milestone at a time.
For anyone adjusting to life with a stoma after surgery, the early days can feel overwhelming. You are not only recovering from an operation, you are also learning new routines, trusting a changed body, managing supplies, dealing with leaks, rebuilding confidence and trying to understand who you are in this new stage of life.
This follows on from Part Six, where I shared what it was like recovering after stoma surgery for ulcerative colitis — waking up in pain, learning to walk again, meeting my stoma, emptying my bag, and finally going home.
Leaving hospital didn’t feel like the end of the story. In some ways, it felt like the start of a completely different one.
When you are in hospital, everything is structured for you. Medication comes at certain times. Nurses check on you. Doctors appear. Meals arrive. Someone is there if something goes wrong. Even when it is hard, and even when you are desperate to go home, there is a safety net around you.
Then you leave.
Suddenly, you are back in your own house with this changed body, a stoma bag, surgical wounds, weak stomach muscles, and a list of things you are not allowed to do. You are expected to rest, recover, learn, heal, and somehow return to normal, except normal doesn’t really exist in the same way anymore.
The first week back at home was tough. Not necessarily dramatic every second, but difficult in the small, practical ways that wear you down. Things I had always taken for granted were suddenly hard. Sitting up was difficult because my stomach muscles were so weak. I couldn’t just move how I wanted to move. I had to think about everything before I did it.
Sleeping was awkward too. I couldn’t sleep on my side, which was a massive annoyance because I’ve always found it hard sleeping on my back. Something as simple as turning over in bed suddenly became something my body wasn’t ready for.
I also couldn’t fully sit up unaided without either pulling myself up or needing someone to help push me. That is a strange thing to deal with mentally. One minute you are an adult who can do everything for yourself, and the next you need help with the most basic movements.
I couldn’t lift anything heavier than the kettle either. That was frustrating enough on its own, but 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 clean for long, and having to sit there looking at things I couldn’t sort out was really hard.
I also couldn’t bend down to pick anything up from the floor, and you don’t realise how often you do something like that until you can’t do it anymore. Dropped something? Normally, you just pick it up. After surgery, it becomes a whole situation.
But my biggest triumph in those early days was the stairs.
At first, getting up and down the stairs was a slow process of one foot in front of the other, pitta-patting my way up and down while either holding onto my beloved’s arm or clutching the bannister like my life depended on it. Generally, I tried to avoid the stairs unless it was really important.
Then little by little, I improved.
Eventually, I could walk up and down holding on only with my fingertips, one foot on each step. That might sound like nothing to someone who hasn’t been through major surgery, but to me it felt massive. It gave me such a sense of pride because it proved I was on the mend.
Recovery wasn’t dramatic. It was slow, uneven, and full of tiny milestones that wouldn’t have meant anything before. But each one mattered.
And regardless of everything I still couldn’t do, one thing was already clear.
Living with a stoma is one of those things you don’t truly understand until it is part of your own body.
Before surgery, I had an idea in my head of how it would work. I thought the bag would fill up, then you would take it off and put a new one on. Simple enough. That was my impression before having the ileostomy.
It turns out that isn’t really the case.
If I changed the bag every single time it had output in it, my skin would be destroyed from constantly sticking and unsticking the adhesive. Instead, I had to learn that the bag is emptied regularly, and then changed separately when needed. That might sound obvious to someone who already lives with a stoma, but before you have one, the whole thing is completely new.
At first, I was just trying to get my head around the practical side. Emptying the bag. Cleaning the skin. Changing the bag. Preparing everything properly. Making sure I had the right supplies nearby. It is amazing how quickly your bathroom routine becomes a full setup.
I needed a new stoma bag, a waste sack, dry wipes, adhesive remover spray, and warm water. The process itself was simple enough once I got used to it, but at the start it felt like a lot. You spray the adhesive remover, gently peel the bag away, clean the stoma and surrounding skin, make sure everything is dry, then position the new bag over the stoma and stick it down properly.
There is a strange moment when the bag comes off and you are faced with your stoma properly. In hospital, everything still felt medical. At home, it felt more personal. This was no longer nurses helping me through it. This was my body, my bathroom, my routine, and my responsibility.
I didn’t hate my body, but I didn’t fully recognise it either.
There were scars. There was a stoma. There was a bag attached to my stomach. There was a body that had clearly been through something massive because it had. I was grateful that the colitis pain had gone, but gratitude doesn’t automatically mean instant confidence.
Getting dressed took more thought. Clothes that once felt normal suddenly felt different. I became aware of where waistbands sat, whether the bag would show, whether it would rustle, whether it would fill, and whether other people could notice it. Most of the time, they probably couldn’t. But I could.
Confidence didn’t return overnight.
It had to be rebuilt slowly, one bag change, one outfit, one mirror glance, and one normal day at a time.
Learning to Trust My Body With a Stoma
Chapter 44: Learning Trust Again
Trusting my body again was probably harder than learning the practical side of the bag.
For years, my body had betrayed me. It had ignored warning signs, failed without notice, and put me in situations where I felt humiliated and completely out of control. So even after surgery, even after the diseased colon had gone, my mind didn’t instantly catch up.
I still waited for something to go wrong.
A leak. A blowout. Pain. A strange feeling. A noise. A smell. Any tiny thing could make my mind jump straight to panic because that was what ulcerative colitis had trained me to do. For years, a stomach sensation could mean danger, so it took time to learn that every unfamiliar feeling didn’t mean disaster.
Emptying the bag at home was one of the first big learning curves.
In hospital, I had emptied it into a sick bowl with a healthcare assistant, and then they took it away. Simple. At home, I tried to replicate that, but it turned out to be more trouble than it was worth. I grabbed an old Tupperware box, emptied the contents of my bag into it, then emptied that down the toilet.
The problem was then I had to clean and bleach the box, which meant putting faeces near the sink, and to be honest, it didn’t feel hygienic at all.
So the next day I tried a different approach. I got down on my knees in front of the toilet, almost like the being-sick position, and emptied the bag straight into the bowl. At first, I thought I had cracked it.
Eureka.
Or so I thought.
Then came one serious schoolboy mistake.
I got into position, undid the bottom of the bag, aimed it straight into the water, and whoosh. The contents were like liquid and gushed into the bowl, hit the back, and fired straight back up at me.
I was literally covered in shit.
There was shit on my jumper, shit on my face, and shit on the walls. The worst thing was I couldn’t even open my mouth properly to shout for help. I sounded like a gagged hostage trying to call out, “Babe, help, help, there’s shit everywhere!”
Luckily, we have an amazing sense of humour in our house. When my partner came to my rescue, we were able to see the funny side of it, even while she helped clean me up and chuckled at the absolute state of me.
That moment taught me two things. First, stoma life involves trial and error. Second, you need humour. You really do. Without humour, some of these moments would feel unbearable. With humour, they become part of the learning process.
From then on, I became much more cautious about how quickly I released the contents of the bag. I tried emptying it while sitting on the toilet, but that didn’t really feel like the method for me either because things could get in the way. Eventually, I found my own way of doing it, and that is what stoma life becomes in the beginning: finding what works for you.
Slowly, trust began to return. Not because everything was perfect, but because I kept dealing with each thing that happened. Every small problem I solved became proof that I could cope.
Mental Health After Stoma Surgery
Chapter 45: Mental Health in the Aftermath
Physically, I was improving, but mentally I was still trying to catch up.
That is something I don’t think people always understand about surgery. Everyone can see the physical part. They can see the scars, the weight loss, the slow walking, the bag, and the obvious recovery. But the mental side is quieter. It sits underneath everything.
I had lost an organ. That is not a small thing to process. Even though the surgery had given me freedom from ulcerative colitis, it still meant part of me had been removed. My body was different forever, and my brain needed time to understand that.
There was grief in that. Not just grief for my colon, because let’s be honest, it had caused me enough trouble by the end, but grief for the years that had been swallowed up by illness. The years of symptoms, medication, appointments, accidents, pain, missed opportunities, and plans that had been put on hold.
There was anger too. Anger at the disease, anger at my body, and anger at how much it had taken before surgery finally gave me a way out. Then there was guilt, because surgery had technically worked. I was pain-free from colitis. I wasn’t bleeding. I wasn’t having accidents. So part of me felt like I should just be grateful and get on with it.
But recovery doesn’t work like that.
You can be grateful and still feel low. You can know surgery was the right decision and still need time to process what happened. You can be relieved the disease has gone and still feel emotional about the body you now have to learn.
Over the next week, I tried to get my mental health in check. I decided to do some drawing and painting, partly for myself and partly to help educate other people. I wanted to get my own head around losing an organ, but I also wanted to show people what had happened in a way that might answer questions they were too shy to ask.
I drew a normal digestive system and then what my digestive system looked like after the ileostomy, with the colon removed and replaced with a stoma. It helped me make sense of it. It turned something frightening and hidden into something visible and understandable.
That was important.
Because the more I understood my new body, the less alien it felt.
Stoma Leaks, Bag Changes and Small Recovery Milestones
Chapter 46: Small Milestones Matter
After surgery, milestones look completely different.
Before, a good day might have meant getting loads done, going to work, studying, cleaning the house, or just living normally without thinking too much about it. After surgery, a good day could be something much smaller on paper, but much bigger in reality.
Walking a little further. Managing the stairs. Emptying the bag without panicking. Changing the bag with everything prepared properly. Getting through a day without a leak. Sleeping a bit better. Leaving the house and realising I wasn’t planning toilet routes anymore.
Those things mattered.
One of the big parts of early stoma life was learning that issues could usually be fixed. At one of my stoma team appointments, I was having problems with my bag leaking on the right-hand side. The faeces kept working its way out in the same place every time, and I thought it might just be something I had to deal with.
I found out the hard way that it could get worse and that no, it couldn’t always wait until morning. Let’s just say it involved showers all round and changed bedding.
At the appointment, the stoma nurse explained that I had a natural crease in my belly, and that was causing the problem. She introduced me to a ring that fitted snugly around my stoma before the bag went on. It also had medicine in it to help treat the slight rash around the stoma.
After a couple of days using them, the side leaks stopped.
That was a massive relief.
It showed me that I didn’t just have to put up with problems. There were products, adjustments, nurses, advice, and solutions. If something wasn’t working, it didn’t mean I was failing. It meant we needed to find the right setup for my body.
The stoma nurse also showed me that there were different types of bags I could try, so I took some samples away. That appointment felt really productive, especially because the nurse I saw also had a stoma herself. I thought that was awesome because she could relate through her own experience, not just from a textbook or training.
Those appointments helped me feel less alone and more in control. Every practical improvement gave me a little bit more confidence. Every solved problem made life feel wider again.
Those small wins were part of learning that stoma surgery recovery was not just about healing, but about finding the right support and routine.
My world had spent years shrinking around illness.
Now, slowly, it was opening back up.
Talking About Life With a Stoma
Chapter 47: Talking About It
At first, talking about the stoma was strange.
I had spent years being embarrassed about bowel symptoms, toilet urgency, blood, mucus, accidents, and everything else that comes with ulcerative colitis. Then suddenly I had this visible thing attached to my body that was both deeply personal and completely life-changing.
It is hard to know how much to say.
You don’t want to make people uncomfortable. You don’t want to overshare. You don’t want every conversation to become about your body. But at the same time, pretending nothing had happened didn’t feel right either.
That was one of the reasons the blog became important.
I had hoped that documenting my experience might help one or two people through what I think is a traumatic experience, but also a metamorphic process. It felt like a second chance at life after living so long with a horrible disease.
What surprised me was the response.
Words cannot describe how proud people made me feel. The support I received in such a short period of time was incredible. I had thought maybe a few people would read it, maybe someone in a similar position might find it useful, but it became more than that.
People listened.
Some people asked questions. Some shared their own stories. Some admitted they had been struggling with things quietly. Others simply showed support in ways that meant more than they probably realised.
I also need to say something about friends and family, because they were incredible. They constantly checked on me, checked on Bex, asked if we needed shopping, asked if the kids were okay, and brought cards, gifts, and even cake. That kind of support is worth its weight in gold.
It made me realise that sharing honestly doesn’t have to mean shocking people or oversharing for the sake of it. Sometimes it just means being real enough that someone else feels less alone, or understands something they didn’t understand before.
That became a big lesson for me.
Talking about it didn’t make me weaker.
It gave the whole experience a purpose.
Finding Purpose After Stoma Surgery
Chapter 48: Finding Purpose in the Mess
The idea of going back to normal started to make less and less sense.
Normal had changed.
I wasn’t going back to the body I had before surgery. I wasn’t going back to the life I had before ulcerative colitis. I wasn’t going back to being someone who could ignore bowel disease or pretend it was something that happened to other people.
But that didn’t mean life was over. It meant I had to build something new.
That is where the purpose started to come in. I didn’t have all the answers, and I definitely wasn’t some finished version of myself who had everything figured out. I was still recovering, still learning the bag, still dealing with awkward moments, still working out what confidence looked like in this changed body.
But I had lived something that other people were frightened of.
I knew what it felt like to wait for surgery. I knew what it felt like to wake up with a stoma. I knew what it felt like to come home and realise you had to learn your body all over again. I knew what it felt like to have embarrassing accidents, practical problems, mental wobbles, and still keep going.
That mattered.
I kept studying. I kept moving forward. I kept trying to build the accountancy career I had started before everything collapsed again. But alongside that, I slowly started sharing more openly.
Not because I wanted attention.
Not because I thought I had all the answers.
But because I knew how lonely it could feel when you are the person searching online for reassurance, wondering what life might look like after surgery, or trying to understand whether you will ever feel like yourself again.
If my story could make someone feel less alone, then the mess had meaning.
The stoma changed my body, but it didn’t end my life.
That sounds obvious now, but before surgery, I don’t think I fully understood it. When you are unwell and surgery is looming, the stoma can feel like the whole story. It becomes the thing you are afraid of, the thing you imagine, the thing you practise with, the thing you wonder about when you look in the mirror.
But once you are living with it, you start to realise it is not the whole story.
It is part of you, yes. It changes routines, clothing choices, toilet habits, confidence, and how you understand your own body. But it doesn’t erase who you are. It doesn’t take away your future. It doesn’t stop you from being a partner, parent, friend, worker, student, or anything else you were before.
In my current thoughts at the time, I remember saying that after living life as an ostomate, it was honestly a walk in the park compared with how I thought it was going to be. That doesn’t mean it was easy every day, and it doesn’t mean there weren’t things I missed.
Because yes, there were things I missed.
I missed the simple relief of needing to fart and just letting it out like, “Ahhh, thank God that’s gone.” That might sound funny, but it is one of those tiny human things you don’t think about until it changes.
But compared with ulcerative colitis, accidents, pain, bleeding, steroids, emergency planning, and living in fear of my own bowel, the stoma gave me something back.
Freedom.
It took time to realise that fully, and it took time to feel comfortable saying it. But the stoma wasn’t the enemy. The disease was. The stoma was the thing that helped me live again.
I am not brave because I have a stoma. I am not inspirational just for existing with one. I am simply someone who reached a point where life had become unbearable and kept going when stopping would have been easier.
The stoma isn’t the whole story.
It is the reason the story got to continue.
Still Becoming After Ulcerative Colitis and Stoma Surgery
Chapter 50: Still Becoming
This isn’t a neat ending.
I think that is important to say because people often want recovery stories to have a clean finish. Illness, surgery, recovery, lesson learned, happy ending. But real life isn’t that tidy.
I was still learning. Still adjusting. Still becoming.
There were hard days, good days, awkward days, funny days, emotional days, and ordinary days. The ordinary days became the ones I valued most because for so long, ordinary had felt out of reach.
An ordinary day without bleeding.
An ordinary day without planning toilet routes.
An ordinary day where I could leave the house without the same fear sitting in my stomach.
An ordinary day where my body wasn’t controlling every decision.
That is what I had wanted for years.
My story didn’t end with surgery. It didn’t end when I left hospital, learned to empty the bag, climbed the stairs, or went to a stoma appointment. Those were all parts of the process, but they weren’t the ending.
Surgery gave my life room to continue.
And I was still working out who I was in that new space.
I wasn’t the same person I had been before ulcerative colitis. I wasn’t the same person I had been before surgery. But maybe that wasn’t a bad thing. Maybe the point wasn’t to go back to who I was before all of this happened.
Maybe the point was to become someone who had survived it, learned from it, and found a way to use it.
The Stoma Accountant didn’t come from a perfect story.
It came from pain, illness, embarrassment, surgery, humour, recovery, and the decision to keep talking anyway.
This is my personal experience of adjusting to life with a stoma after surgery, including home recovery, bag changes, leaks, body confidence, mental health and learning new routines. It is not medical advice.
Stoma recovery and care are different for everyone, so always speak to your stoma nurse, surgeon, consultant or IBD team about your own recovery, supplies, skin care, leaks, pain, lifting, diet and mental wellbeing.
Adjusting to life with a stoma after surgery meant learning new routines, finding space for supplies, building confidence with bag changes and slowly working out what made everyday life easier.
These are a few practical things that helped me feel more organised and in control while learning how to manage my stoma at home.
Stoma supply organiser
A stoma supply organiser can help keep bags, wipes, disposal bags, sprays and spare supplies in one place, which makes daily changes feel less stressful and more controlled.
Why it helped: ✔ Kept all my stoma supplies together instead of scattered around the bathroom or bedroom ✔ Made bag changes feel quicker and less chaotic, especially while I was still learning my routine ✔ Helped me feel more prepared and confident knowing I had everything I needed in one place
A bathroom storage basket can make stoma bag changes feel calmer by keeping everyday supplies visible, tidy and easy to reach when you need them.
Why it helped: ✔ Kept regular-use items like wipes, disposal bags, sprays and spare bags organised in the bathroom ✔ Made bag changes feel less rushed because everything was already within reach ✔ Helped turn a new and overwhelming routine into something that felt more normal and manageable
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.
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 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
