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 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.
But that isn’t how it happened.
From Diagnosis to Medication and False Hope
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. 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 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.
Learning to Live With a Stoma
What followed wasn’t instant freedom.
I woke up in pain. 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 my colon, but I gained time.
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.
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, or struggling with your mental health after diagnosis or treatment, please speak to your GP, consultant, IBD team, surgeon or stoma nurse.
After four years of remission, I thought I had finally built a life that was bigger than ulcerative colitis. I was working, studying, retraining as an accountant, and planning a future that did not revolve around hospital appointments. Then the symptoms slowly started to return. Urgency, blood, fatigue, anxiety, rising inflammation, Covid, job loss, protective underwear, hospital treatment and failed medication all became part of the story. This is the part where remission ended — and ulcerative colitis started changing my life again.
This follows on from Part Three, where I shared what life was like living with ulcerative colitis after diagnosis — the flares, medication changes, side effects, treatment escalation, Vedolizumab, and the remission that finally gave me some breathing space.
PART FOUR – WHEN THE GROUND MOVES
Life After Ulcerative Colitis Remission
Chapter 19: Building Something New
For four years, Vedolizumab gave me something I hadn’t had properly since all of this started: breathing space.
Not just breathing space from the physical symptoms, but from the mental load that comes with living around ulcerative colitis. When your body is behaving, you don’t realise how much room that gives your mind. Suddenly, life isn’t only hospital appointments, medication, toilet checks, side effects, blood tests, and waiting for the next thing to go wrong. You can actually start thinking beyond the illness.
During those years, I was still working at Waitrose, mainly as part of the night team. Nights suited me in a strange way. I found it easier to stay awake through the night, sleep in the morning, and fit life around that routine. It worked for where I was at the time, and after everything I had been through, having a routine that worked felt like a win.
But the healthier I became, the more I started to feel like I wanted something else.
It wasn’t that I was ungrateful. Waitrose had been a massive part of my life. It had given me stability when my health hadn’t. But once I started feeling well again, I also started feeling like I was wasting my life in a job that didn’t really have a future for me. I had finally got my health back to a point where I could look beyond just surviving, and once that happened, I couldn’t ignore the feeling that I needed to build something.
So, like most life-changing decisions in the modern world, I turned to the internet.
I searched for careers where you could start at the bottom and work your way up through qualifications. I wanted something structured, something with a clear path, and something where effort could actually lead somewhere. After years of my body being unpredictable, that structure really appealed to me.
Accountancy came up, and for some reason, it clicked.
It felt practical. It felt achievable. There were levels, qualifications, progression, and a clear route forward. I could start at the bottom, study, pass exams, and build a career step by step. That mattered to me because, for so long, ulcerative colitis had made life feel like something I was reacting to rather than choosing.
The only problem was money.
The course wasn’t cheap, and I wasn’t exactly swimming in spare cash, so I contacted Retail Trust. They helped people who had worked in retail for a number of years with grants to better themselves. I applied, hoped for the best, and thankfully they awarded me the grant. That was the start of my AAT Foundation Certificate in Accounting, Level 2.
From that point on, life became a bit ridiculous, but in the best way. I was working nights, studying during the day, and still juggling family life around it all. It was tiring, but it was a different kind of tired to illness tired. This was tired with purpose behind it. I wasn’t exhausted because my body was falling apart. I was exhausted because I was building something.
And somehow, it worked.
I started knocking out distinctions in my exams, and each one gave me a bit more belief that I was on the right path. I wasn’t just the bloke with bowel disease. I wasn’t just someone trying to get through each day. I was building a career.
For the first time in a long time, life felt like it was properly moving forward.
Then Waitrose announced they were selling the shop to Lidl, and the whole store was being made redundant.
Just like that, the ground shifted again.
I had two exams left, bills to pay, a family to support, and this new dream that I was only just starting to believe in. I had to think quickly. I needed a job, but I also needed to keep studying. I didn’t want to stop now, not when I had finally found something that felt right.
That was when I decided an apprenticeship might be the best route. It would give me a steady income and allow me to continue with the qualifications without having to fund everything myself. I went to my first proper interview in years at a manufacturing firm in Exeter, and I was honest about the situation. I needed to continue my redundancy notice, keep studying, and start the new job around all of that.
To my surprise, they accepted it.
I got the job, and that felt massive. I had taken my first step into office work, and Level 3 was on the horizon. For a little while, life felt good. I was studying, working, progressing, and starting to believe that maybe I was finally building the future I wanted.
When Ulcerative Colitis Symptoms Started Returning
Chapter 20: Cracks in the Shield
I don’t know whether it was because the exam was harder than the year before, whether life was getting more stressful, or whether my time with Vedolizumab was simply running out, but around October 2019, things started to change. The old symptoms came back: blood, mucus, and that familiar sinking feeling when you look in the toilet and instantly know something isn’t right.
After four lush symptomless years, I had almost forgotten what it felt like to live with that constant uncertainty. Not completely, because I don’t think you ever truly forget, but enough that I had started trusting my body again. I had built routines. I had started a new career path. I was studying. I was planning. I had begun living as if my body was on my side again.
Then suddenly, the disease reminded me it was still there.
My treatment was increased from every eight weeks to every four weeks to see if Vedolizumab could get things back under control. I think everyone wanted it to work. It had already given me so much life back, and I desperately wanted to squeeze more time out of it.
But it wasn’t meant to be.
That was hard to accept. When a drug has changed your life, you almost feel loyal to it. Vedo had pulled me out of one of the darkest places I had ever been. It had given me four years where I could work, study, parent, function, and live without everything revolving around toilets. So when it started failing, it didn’t just feel like a medical change. It felt personal.
Somehow, I kept progressing with my exams through that year, but I wasn’t the same student I had been during Level 2. The distinctions disappeared. A couple of passes only just scraped over the line, with the odd merit here and there.
Before, I had wanted the highest marks I could get. I wanted to prove to myself that I was good at this. But once the symptoms came back, my ambition changed. I didn’t care about being the best anymore. I just wanted to pass. That was it. Pass the exams, get through Level 3, keep moving towards Level 4, and keep the dream alive, even if everything else felt like it was starting to fall apart.
Eventually, Vedolizumab was stopped, and I was put under a new consultant. More scopes followed to see how bad things had become, and the answer was not exactly comforting. The inflammation was getting worse.
And then, just to make everything more complicated, the pandemic began.
Covid, Immunosuppression and a Severe UC Flare
Chapter 21: Covid and Collapse
Covid changed everything for everyone, but when you are already unwell and your immune system is being played around with by medication, it adds another layer of fear and uncertainty.
Luckily, I live in a part of the country where cases were fairly low at the start, but that didn’t stop the worry. Guidance was changing constantly. Nobody seemed to fully know what was safe, what wasn’t, or what people like me were supposed to do. At the same time, my colitis was getting worse, and the timing could not have been worse if it tried.
Because of Covid, the use of stronger steroids was more restricted, so I was put on Budesonide first. It was a less strong steroid, and for me, it did absolutely nothing. They had to be sure, so another scope was booked. By that point, I knew my own body well enough to know I needed the proper steroids. I remember thinking that I wasn’t leaving without them because I knew they were the thing that would at least calm things down.
Eventually, I got Prednisolone again.
Alongside that, I was started on a new treatment called Tofacitinib. This one was different because it came in tablet form rather than an infusion. The plan was to start on a high dose for eight weeks and then reduce it by half. The tricky part was that I was still taking Prednisolone during those first eight weeks, so it was hard to know what was actually working. Was the Tofacitinib helping, or were the steroids just masking everything like they had done before?
I was told to come off the Prednisolone before the Tofacitinib dose reduced, and that was when the truth showed itself. The drug had not worked.
As the steroids came away, the symptoms came charging back.
Then, just to top everything off, I lost my job. The accounts department had budget cuts, presumably due to Covid, and I was let go. There was no big dramatic scene, no shouting, no massive argument. Just another part of my life being pulled out from underneath me at the exact moment I needed stability the most.
So there I was: sick, jobless, trying to finish accountancy exams, trying to manage a disease that was getting worse, and trying not to let the whole thing swallow me up.
Because of Covid, our wedding had to be postponed until 2021 as well, and that was another emotional hit. It wasn’t just one thing going wrong. It was everything stacking up. The symptoms, the job loss, the uncertainty, the wedding being delayed, and the pressure of still trying to become qualified while my body was working against me.
I was sinking, and I don’t think there is a softer way to say it. I was going deeper into depression, and for once it wasn’t only the illness itself. It was everything around it. Every time I tried to build something, colitis seemed to find a way to shake the foundations.
Bowel Urgency, Accidents and Protective Underwear
Chapter 22: Losing Control
This was when control really started disappearing.
I began having accidents left, right, and centre. Driving was one of the worst situations, especially sitting in traffic. When you have bowel urgency, traffic becomes more than annoying. It becomes terrifying. You can’t just pull over anywhere, and you can’t explain to a line of cars that your body is about to betray you. You just sit there gripping the wheel, trying to breathe through the panic, hoping you can hold on long enough.
This was when I discovered protective underwear, and I have worn it ever since.
The first time you have to make that decision, it hits hard. It isn’t about the product itself. Protective underwear is practical. It helps. It gives you a safety net. But emotionally, it felt like crossing a line I never imagined I would reach. It made the illness feel visible to me, even if no one else could see it.
I contacted a counselling service for people with ongoing medical conditions because mentally, I knew I wasn’t in a good place. The problem was that my symptoms were so bad they were overriding even the anxiety. I couldn’t sit and unpack everything emotionally because my body was still screaming the loudest.
My life became route planning. I was constantly thinking about toilets, bushes, quiet places, and anywhere I could secretly go if I had no other choice. That sounds extreme unless you have lived it, but when your bowel gives you seconds rather than minutes, you stop thinking like someone going out for the day and start thinking like someone preparing for an emergency.
I carried what I called a rescue pack. It had protective underwear, spare underwear, wet wipes, dog poo bags, and anything else that might help me clean up, change, and not leave a mess behind if the worst happened. It wasn’t glamorous, but it was necessary, and I wasn’t prepared to be unsanitary or leave anything for someone else to deal with.
That was my reality.
I wasn’t just living with ulcerative colitis at that point. I was planning every movement around it. Every journey had to be thought through. Every outing came with a backup plan. Every traffic queue felt like a threat. Every stomach pain made my heart drop.
My world started getting smaller again, but this time it felt even crueler because I knew what freedom had felt like. I had four years of it. I had built a life during remission. Now I was watching it close in around me.
Starting a New Job While Flaring With Ulcerative Colitis
Chapter 23: The Job I Nearly Didn’t Apply For
Even with everything going on, I still needed to finish my exams. I had two left for Level 3, and somehow, despite the symptoms and everything else happening in the background, I sat one of them and did really well. That gave me a bit of hope, but I still had the final exam hanging over me.
At the same time, I was applying for jobs.
Interviews were happening over Teams because the world had changed, and everything felt more competitive than ever. I kept trying, but I wasn’t getting anywhere. Every rejection chipped away at me a little bit more.
I reached a point where I had almost given up on the dream of becoming an accountant.
That is painful to admit, because accountancy had become more than just a career idea. It was proof that I could build something outside of illness. It was something I had chosen for myself. But when you are sick, unemployed, and constantly being knocked back, even the things you want most can start to feel out of reach.
Then my car had to go in for its MOT, and out of nowhere, my mechanic said, “Why don’t you contact the accountants in town? They’re really nice people.”
I had never even thought about just dropping a CV into a local accountancy practice. The idea scared me a bit, if I’m honest. Working in an actual practice felt like a big leap. I had some experience in manufacturing, but an accountancy practice was different. It felt more serious, more real, and more like the thing I actually wanted, which somehow made it more intimidating.
But at that point, what did I have to lose?
So I sent my CV and a cover letter, and as it turned out, they were looking for someone. They gave me the job.
I was over the moon. After everything, I had landed the kind of role I had been working towards. A proper accountancy job. A chance to keep moving. A chance to prove myself. But, of course, my condition was still there, looming over everything.
I told them about my constant toilet habits because there was no hiding it. At that stage, it would have been impossible to pretend everything was fine. I needed them to know because I needed to know whether they would be understanding.
And they were amazing about it.
That mattered more than I can probably put into words. Starting a new job while flaring is frightening. You don’t want to be seen as unreliable. You don’t want people to think you are making excuses. You don’t want to be the person constantly disappearing to the toilet. But I also couldn’t control what my body was doing.
So I started the dream job with two feelings living side by side: excitement and fear.
I had finally got a foot in the door. I just didn’t know if my body was going to let me stay there.
Back in Hospital With a Severe Ulcerative Colitis Flare
Chapter 24: Back in Hospital
Not long after starting the job, I had to go for another scope. The results showed I had 30cm of inflammation from the bottom up, and another course of Prednisolone was issued. By that point, though, things were becoming unbearable. The pain when passing stool and wind had reached a level I hadn’t experienced before with this disease. It wasn’t just urgency and blood anymore. It was pain that stopped me in my tracks.
For the first time since being diagnosed with ulcerative colitis, I was admitted to hospital.
That felt huge.
Hospitals had always been part of the story, but mostly as appointments, scans, scopes, infusions, and consultations. Being admitted was different. It meant things had crossed another line.
I had been there since the Wednesday, having hydrocortisone steroids pumped into my veins every four hours. Observations were taken every six hours. Nurses came in and out at all times of the day. There were three meals a day, hospital routines, noises in the corridor, and that strange feeling where time seems to move differently once you are on a ward.
I was also given an injection in my leg to avoid blood clots. I didn’t even know the name of the drug, but I definitely knew how it felt. It was painfully stabbed into my leg, and I remember thinking that illness comes with all these little extras nobody warns you about.
It wasn’t just the colitis anymore. It was the treatment, the monitoring, the injections, the waiting, the loss of privacy, and the realisation that I was no longer managing this at home.
I was still trying to be hopeful, but by that stage, hope was getting harder to hold onto. The drugs had kept buying time, but each one seemed to give less than the last. My body was tired, my mind was tired, and my family was tired.
Deep down, I think I knew the conversation was about to change.
When Ulcerative Colitis Surgery Became the Only Way Forward
Chapter 25: When Hope Runs Out
My consultant came to see me in hospital, and by then I think we both knew where things were heading.
There was still another drug that could technically be tried: Infliximab. But the conversation didn’t feel like the old conversations anymore. It didn’t feel like, “Let’s try this and see if we can get you back on track.” It felt like we were talking about whether one more medication would actually change the outcome or just delay the inevitable.
We agreed that trying Infliximab would likely only buy time, and the best way forward was to remove my colon and replace it with a stoma.
There it was.
The thing that had once sounded terrifying. The thing that had once felt like the very last resort. The thing I had once begged for when Methotrexate had stripped me down completely. Now it was no longer an idea in the distance. It was the plan.
The next day, surgical teams and stoma nurses came to see me, and everything started to become very real. These were no longer vague conversations about what might happen one day. This was my actual body, my actual operation, and my actual future.
In ten days, surgery was booked.
I was told I could go home to spend the Christmas period with my family, unless I ended up in pain and had to be rushed in for emergency surgery. That is a strange thing to be told. Go home, enjoy Christmas, and spend time with your family, but also come straight back if things go wrong because your bowel is now that bad.
The reality was simple and brutal. The condition had reached a point where no drug could reverse what my own immune system had done to my body.
I don’t remember feeling shocked in the way people might expect. I think I had been heading towards that moment for a long time. There was sadness, of course, and fear too, but there was also a strange calmness.
I was exhausted from fighting. Exhausted from hoping the next medication would be the one. Exhausted from planning toilets, carrying rescue packs, wearing protective underwear, losing jobs, forcing myself through exams, and pretending I could keep everything together while my body was falling apart.
Surgery wasn’t what I had wanted at the start. But by then, it had become the way out.
And once that decision was made, everything changed quietly, completely, and forever.
Contact your GP or medical team
This is my personal experience of a severe ulcerative colitis flare after remission, including medication failure, hospital treatment, Infliximab and discussions about surgery.
It is not medical advice. UC treatment is different for everyone, so always speak to your GP, consultant or IBD team if your symptoms return, worsen, or stop responding to medication.
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 a Severe UC Flare
By this stage, I wasn’t dealing with early symptoms anymore. I was dealing with a severe flare, urgency, accidents, hospital appointments, exhaustion and the reality that treatment options were running out.
These are a few practical things that helped me feel slightly more prepared during one of the hardest stages of my UC journey.
🧻 Bamboo Toilet Tissue
Nobody really talks about this, but when you’re using the toilet constantly, softer toilet tissue makes a massive difference.
Why it helped: ✔ Gentler during frequent toilet trips ✔ Reduced irritation ✔ One of those small comforts that matters
This was one of the hardest things for me to accept during severe flares. But when accidents became a real possibility, protective underwear gave me a small sense of security during one of the lowest periods of my illness.
✔ Reduced anxiety when leaving the house ✔ Helped during long journeys and hospital visits ✔ Gave me confidence during severe urgency ✔ Helped me maintain some independence ✔ A practical backup during unpredictable flares
After my ulcerative colitis diagnosis, life did not simply go back to normal. I had a name for what was happening, but now I had to learn how to live with it every day. This part of my story covers the long middle — the flare-ups, fatigue, urgency, medication changes, steroid side effects, Methotrexate, Vedolizumab infusions, and the four years of remission that finally gave me some breathing space.
This follows on from Part Two, where I shared what happened after my ulcerative colitis diagnosis — the tests, hospital appointments, colonoscopy prep, low iron, and trying to understand what mild UC and proctitis actually meant.
PART THREE – THE LONG MIDDLE
Learning to Live With Ulcerative Colitis Every Day
Chapter 11: Learning to Live With It
After the colonoscopy, I remember walking away with a strange mix of relief and confusion. I had been told I had mild ulcerative colitis, or proctitis to be exact, and that word “mild” made it sound like something fairly small and manageable. At the time, I wanted to believe that. I think I needed to believe it. After all the fear, the weight loss, the scan to rule out cancer, and the worry that had been building for weeks, hearing that it was “mild” felt like a bit of breathing space.
Of course, I didn’t really understand then what living with a lifelong bowel condition actually meant. I didn’t understand that mild doesn’t always stay mild, and I definitely didn’t understand how much trial and error can be involved in finding a treatment that actually works.
I was sent home with Pentasa Mesalazine suppositories to use every night. There is no glamorous way of putting that. My new bedtime routine involved finishing the day by putting medication somewhere medication had never been invited before. It was awkward, embarrassing, uncomfortable at first, and not exactly something you casually bring up in conversation over a cup of tea.
But it helped.
However undignified it felt, the medication started doing its job. The bleeding eased, the mucus settled down, and things started to feel a bit more stable. I wasn’t cured, but I felt like I had been given a small amount of control back. At that stage, that was enough to make me feel hopeful.
I tried to make sense of it in my own way. In my head, I imagined the suppositories like a reverse Gaviscon. Instead of the little firefighter going down to put out stomach acid, this was something going in the other direction to calm my colon down. It might sound ridiculous, but sometimes humour is the only way to make something uncomfortable feel a bit more manageable.
Life carried on. That is one of the strange things about being diagnosed with something chronic. You don’t always get a dramatic pause where the world stops and gives you time to adjust. You still have to go to work. You still have bills to pay. You still have a family to support. You still have a normal life sitting there waiting for you, even when your body has just changed the rules.
So I went back to work at Waitrose and tried to carry on as normally as possible. I still had children to help raise, routines to keep, and responsibilities that didn’t disappear just because I had been given a diagnosis. I wanted life to go back to how it had been before all the symptoms started. I wanted this to be something I could manage quietly in the background.
For a while, it did feel liveable. Not perfect, but liveable. I still had ulcerative colitis, and I still had to manage it every day, but it wasn’t controlling every minute. I could work. I could function. I could almost convince myself this was going to be the version of the disease I had to deal with.
A nightly inconvenience. A few appointments. A bit of embarrassment. Something manageable.
Looking back, I think I was desperate for that to be true.
When Ulcerative Colitis Symptoms Started Coming Back
Chapter 12: The First Cracks
The problem with ulcerative colitis is that it doesn’t always stay where you leave it. Just because something settles for a while doesn’t mean it has gone away, and just because a treatment works at first doesn’t mean it will keep everything under control forever.
For a while, the Pentasa helped enough for me to get on with life, but eventually the familiar signs started creeping back in. It wasn’t dramatic at first, and that is what makes it difficult. You don’t always wake up one morning and suddenly know you are flaring. Sometimes it starts with small changes that you try to explain away.
A bit more urgency. A bit more mucus. A bit more worry when you go to the toilet. Then the blood comes back, and deep down you know you are not imagining it.
That is the part people don’t always understand. Once you have seen blood and mucus coming from your body, you don’t forget it. Every toilet trip becomes a check. Every stomach pain becomes a question. Every bad day makes you wonder whether the disease is waking up again.
Back to the hospital I went.
This time, the conversation moved on to stronger medication. The first drug they wanted to try was Azathioprine, an immunosuppressant designed to calm the immune system down and stop it attacking my bowel.
By that point, the risks didn’t matter to me in the way they probably should have. I just wanted the symptoms to stop. I wanted to stop seeing blood. I wanted to stop worrying about mucus. I wanted to stop thinking about toilets and start feeling normal again, or at least as close to normal as I could get.
So I took Azathioprine alongside the Pentasa and hoped this would be the thing that finally kept the colitis quiet.
Unfortunately, it wasn’t.
That was one of the first proper lessons I learned about this disease. Treatment isn’t always a straight road. It isn’t as simple as being given a tablet, taking it, and getting better. Sometimes a drug works. Sometimes it half works. Sometimes it does absolutely nothing. Every time one option fails, you feel the ground shift a little bit underneath you.
Azathioprine was supposed to be the next step forward. Instead, it became another thing crossed off the list.
Prednisolone and Steroid Side Effects With UC
Chapter 13: Enter the Steroids
When Azathioprine didn’t do the job, I was introduced to Prednisolone.
The demon steroids.
I know that sounds dramatic, but anyone who has been on them will probably understand exactly what I mean. Prednisolone can be incredible and awful at the same time. Physically, it worked fast. Really fast. Within days, the flare settled, the bleeding stopped, and the urgency eased. It was like someone had turned the volume down on the disease.
When you have been living with blood, mucus, panic, and that horrible feeling of not trusting your own body, that kind of relief feels massive. You don’t care too much about the warnings at first because all you can focus on is the fact that you are not running to the toilet constantly or checking for blood every time you go.
But then the side effects arrived.
I couldn’t sleep properly. My mind was racing all the time. I felt wired, restless, and constantly on edge. Worst of all, I felt angry. Not just a bit irritable, but properly full of rage over things that would normally never bother me.
That was probably one of the hardest parts because I am not naturally that person. I have always been fairly placid. I am not someone who kicks off easily or loses it over nothing. So to suddenly feel like this angry version of myself was walking around in my body was horrible.
It is a strange feeling when a drug helps your body but makes your mind feel like it has been hijacked.
At the same time, I couldn’t deny that the symptoms had improved. That is the cruel trade-off with steroids. You know they are not a long-term answer, and you know they come with side effects, but when they work, you cling to the relief. You tell yourself it is worth it because at least the bleeding has stopped. At least the urgency has calmed down. At least you can function.
So I carried on. I told myself it was temporary. I told myself that once the flare settled, things would stay calm. I told myself this was just another rough patch and that I could get through it.
But ulcerative colitis had other ideas.
When a UC Flare Comes Back Harder
Chapter 14: When It Comes Back Harder
For a while, I managed to stay in a sort of remission. I was still using the nightly Pentasa and still living with the knowledge that the disease was there, but life was ticking along. It wasn’t perfect, but it was manageable enough for me to believe things might stay that way.
Then it came back.
Not gently. Not politely. It came back with a vengeance.
This was the worst my symptoms had been up to that point. I was going to the toilet up to fifteen times a day, and it wasn’t just normal toilet trips either. It was blood, mucus, pain, urgency, and that horrible feeling that your body has taken control while you are just trying to keep up with it.
People hear “fifteen times a day” and probably imagine it as an inconvenience. It is so much more than that. It drains you. It interrupts everything. It makes leaving the house feel like a risk assessment. You start thinking about toilets before you think about anything else.
Work, shopping, family days out, car journeys, even simple things suddenly come with questions attached. Can I get there? Is there a toilet nearby? What if I can’t hold it? What if something happens in public? What if I get stuck somewhere with no way out?
That kind of thinking wears you down.
Back to the hospital I went, and this time the next drug on the list was Methotrexate. This one arrived at my house in the form of injections, a bit like EpiPens, which I had to administer myself into my stomach.
I thought the injection part would be the thing I struggled with most, but strangely, it wasn’t as bad as I expected. Don’t get me wrong, injecting yourself in the stomach is never going to become a hobby, but I managed it.
The thing I remember most was the smell of the alcohol cleaning wipes. I don’t know why, but they made me gag. Even now, certain medical smells can throw me straight back into that headspace.
At first, I thought maybe I could handle Methotrexate. I had handled suppositories. I had handled steroids. I had handled scopes, hospital appointments, embarrassment, and all the indignity that comes with bowel disease.
But then the side effects kicked in, and this felt different.
Methotrexate Side Effects and Reaching My Lowest Point
Chapter 15: The Lowest Point
Methotrexate took something out of me that is hard to explain. I have never felt so physically and mentally frail in all my life. It wasn’t just tiredness. It was like my body had been dampened down, and my mind had gone with it.
I felt hollow. Fragile. Like I was still technically getting through each day, but there was nothing left in reserve. The worst part was that I was still getting symptoms. I was taking this strong medication, dealing with the side effects, injecting myself, feeling awful, and yet the colitis was still there in the background causing chaos.
At some point, the balance shifted.
I looked at my partner and said, “I can’t do this.”
And I meant it.
This wasn’t one of those dramatic comments you say in a bad moment and then move on from. I genuinely couldn’t see how this was supposed to be life. I felt like a train wreck. I was exhausted from the symptoms, exhausted from the drugs, exhausted from trying to be okay when I absolutely wasn’t.
That was the first time surgery properly entered my head.
Not as a distant possibility. Not as something doctors might mention one day if things got worse. I actually wanted it gone. If removing part of me meant getting my life back, then so be it. That is how low things had got.
We went to the hospital unannounced because I was desperate. We weren’t there for a routine appointment. We were there to plead with my consultant to take this seriously and ask whether surgery could be the answer.
By chance, we arrived when the consultants were having a meeting. My case was put to the team, including my consultant’s boss, and once they had finished, we were called in.
She talked us through the surgery calmly and clearly. She explained what it would involve and what the process could look like. And instead of terrifying me, it actually made sense. For the first time, surgery didn’t feel like a failure. It felt like a way out.
Then she said there was one more drug they wanted to try.
One more.
Vedolizumab Infusions as One More Treatment Option
Chapter 16: One More Chance
The drug was called Vedolizumab.
My first thought was that it was a ridiculously long name.
At that stage, I wasn’t full of optimism. I wasn’t walking into it thinking, “This is definitely going to save me.” In my head, it felt more like a final hurdle before surgery. If they needed me to try one more medication before we moved on, then fine. Let’s get the ball rolling.
It was explained to me that Vedolizumab hadn’t been around for colitis for that long, but it had been showing good results, especially with Crohn’s patients. I also had to stay on Methotrexate temporarily while starting it, to keep my immune system suppressed enough that it wouldn’t attack or reject the new treatment.
I didn’t love that part.
Methotrexate had made me feel dreadful, but if staying on it was the price of getting to the next stage, I accepted it. I just wanted something to change.
The first Vedolizumab infusion took place in hospital. I was hooked up through a cannula in my arm and sat there for the hour-long infusion, watching this medication slowly make its way into my body.
I’m not going to lie, the first experience was trippy.
Not trippy as in seeing unicorns dancing around the ward, but trippy because I had stupidly read the side effects beforehand. That was a mistake. Every sensation suddenly felt suspicious. Every slight twinge made me wonder whether something was happening. My brain had basically turned into a side-effect checklist.
The infusion finished, then I had another hour of flush to make sure everything had gone through properly. After that, I was sent on my way.
I felt lightheaded, so I sat in the car for about half an hour before even thinking about driving home. I wasn’t taking any chances. Once I got home, I spent the rest of the day in bed, partly because I felt rough and partly because I didn’t trust my own body enough to do much else.
At that point, I had no idea whether it had worked. I didn’t know if this was going to be another failed treatment, another delay before surgery, or the thing that would finally give me some life back.
I didn’t know that one of the biggest moments in my whole UC journey was only a few days away.
The Moment Vedolizumab Started Working
Chapter 17: Starcross
That weekend, me and the family went away with close friends to Woolacombe Bay.
Looking back, I think we all needed it. Not because it magically fixed anything, but because sometimes you need a break from hospitals, appointments, medication, side effects, and talking about illness. You need to pretend, even for a short while, that life is normal.
It was on the journey home that everything changed.
We were driving down the motorway when that familiar feeling hit me. The urgent one. The one where your body gives you very little warning and expects you to come up with a plan immediately.
I saw the sign for Exeter services and thought, brilliant, I can stop there, go to the toilet, then we can carry on home and unpack.
Somehow, I completely missed the turning.
That is not what you want to do when your bowel is already sending alarm bells through your entire body.
We ended up having to drive through the back roads home, via Starcross and Dawlish. I was trying to stay calm, but inside I was panicking. The need to go was immense. I honestly don’t know how I managed to keep it from coming out.
I remembered there was a Sainsbury’s on the route and thought maybe I could stop there, but then as we approached Starcross, I saw the sign for the train station. A memory popped into my head that there were toilets there.
That was enough.
I threw the car into the car park, parked across about three spaces, and jumped out.
And then I had what can only be described as the most enlightening poo of my life.
For the first time in months, it was solid. Formed. Normal. There was no blood, no mucus, and none of the usual chaos that had been attached to every toilet trip for so long.
I just sat there in disbelief.
It sounds ridiculous to say that a poo changed my life, but anyone who has lived with active ulcerative colitis will understand. When your body has been producing blood and mucus for months, when every toilet trip has been a reminder that you are unwell, seeing something normal again feels unbelievable.
That was the moment I knew the Vedolizumab had worked.
I was in remission.
Four Years of Ulcerative Colitis Remission
Chapter 18: Four Years of Breathing
I stopped taking Methotrexate because it was still making me feel rubbish, but I continued with Vedolizumab infusions every eight weeks. And for four lush, symptomless years, I got my life back.
That still feels amazing to write.
Four years without the constant bleeding. Four years without mucus taking over every toilet trip. Four years without living every day around urgency and fear. After everything that had happened, that kind of normality felt huge.
My consultant still mentions how quickly my body responded to Vedolizumab. He has said more than once that he will never forget it, and how happy they were to see me finally getting my life back together.
And I really did.
I was still working at Waitrose during those years, mostly as part of the night team. In some ways, nights suited me. I found it easier to stay awake through the night and sleep in the morning, and the routine worked for where I was at the time.
But once my health stabilised, something else started to creep in.
For the first time in years, I wasn’t just thinking about surviving. I wasn’t planning my life around hospital appointments, side effects, medication, or whether I could get to a toilet in time. My head had space again. I could actually look forward.
When you have spent years feeling like your body is making all the decisions for you, being able to make a decision for yourself feels powerful.
I started to feel like I was wasting my life in a job that didn’t really have a future for me. That isn’t to disrespect the job, because it had supported me and my family for years, but I knew I wanted more. I wanted a proper career. Something I could start at the bottom of and work my way up through qualifications.
So, like most life-changing decisions in the modern world, I turned to Google.
I searched for jobs where you could start from scratch, study alongside work, and build yourself up by passing exams. Accountancy came up, and something about it clicked.
It felt practical. Structured. Achievable. There was a path. Foundation levels, qualifications, progression, a way forward. For someone who had spent years feeling like life was being dictated by illness, that structure mattered more than I probably realised at the time.
The course was expensive, and money wasn’t exactly flowing freely, so I contacted Retail Trust. They supported people who had worked in retail for several years and offered grants to help them better themselves. Thankfully, they awarded me the grant, and I started my AAT Foundation Certificate in Accounting, Level 2.
From there, I threw myself into it.
I worked nights, studied during the day, and juggled family life around it all. It was tiring, but it felt different from illness tired. This was tired with a purpose. I was exhausted because I was building something, not because my body was falling apart.
And it turned out I was good at it.
I started getting distinctions in my exams, and each one gave me a little bit more belief that this was the direction I was meant to be going in. For the first time in a long time, my future didn’t feel like it belonged to ulcerative colitis.
It felt like it belonged to me.
That is what those four years gave me. Not just remission, but the chance to breathe, rebuild, and start becoming The Stoma Accountant before I even knew that name would one day mean something much bigger.
Contact your GP or medical team
This is my personal experience of ulcerative colitis and delayed diagnosis. It is not medical advice.
If you notice blood or mucus in your stool, unexplained weight loss, ongoing diarrhoea, bowel changes, or symptoms that do not feel normal for you, please speak to your GP or medical team. You can also read NHS guidance on inflammatory bowel disease symptoms.
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 The Early Symptoms
When everything first started, I felt completely unprepared. I didn’t understand what was happening to my body, and most days became a mix of exhaustion, anxiety, hospital appointments, and endless toilet trips.
These are a few small things that genuinely made life easier during that period.
These are not cures or medical recommendations — just small things that helped me feel slightly more prepared during the early symptom stage.
🔥 Premium Hot Water Bottle Belt
For me, a wearable hot water bottle belt was a complete upgrade from a normal hot water bottle. Instead of constantly holding it in place or readjusting it every five minutes, the belt wraps around your stomach or lower back so the heat stays exactly where you need it.
Why it helped: ✔ Hands-free comfort during flare days ✔ Stayed in place while resting or walking around ✔ Better support for stomach cramps and lower back pain ✔ Felt more practical during long nights and hospital recovery days
Keeping track of symptoms, food triggers, medications, toilet frequency, and flare patterns helped me explain things properly during appointments — and spot patterns I would’ve otherwise missed.
Why it helped: ✔ Easier GP & hospital conversations ✔ Helped identify trigger foods ✔ Reduced the feeling of losing control
