Tag Archives: The Stoma Accountant

Adjusting to Life With a Stoma After Surgery

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.

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.

Read Part Six here:
Stoma Surgery Recovery After Ulcerative Colitis

PART SEVEN – LEARNING WHO I AM NOW

Coming Home After Stoma Surgery

Chapter 42: Recovery Isn’t a Finish Line

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.

I could now live a life without colitis pain.

Body Confidence After Stoma Surgery

Chapter 43: The Body I Didn’t Recognise

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.

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 Isn’t the End of the Story

Chapter 49: The Stoma Isn’t the Story

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.

And even now, I’m still becoming.

Continue the story:
After learning to live with a stoma, I wanted to turn the experience into something useful for other people. Read A Call to Hope: what my stoma journey taught me.

Contact your GP or medical team

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 and mental wellbeing.

You can also read Crohn’s & Colitis UK guidance on life with a stoma.

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

👉 View Stoma Supply Organisers on Amazon

Bathroom Storage Basket

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

👉 View Bathroom Storage Baskets on Amazon

Preparing for Stoma Surgery With Ulcerative Colitis

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.

This follows on from Part Four, where my ulcerative colitis flare after remission led to hospital treatment and surgery becoming the only way forward.

PART FIVE – THE WAIT

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.

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.

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 and stoma care are different for everyone, so always speak to your consultant, surgeon, stoma nurse or IBD team about your own treatment and recovery.

You can also read NHS guidance on why an ileostomy may be needed.

NHS guidance on why an ileostomy may be needed

Crohn’s & Colitis UK specifically covers surgery options for UC, including subtotal colectomy with ileostomy and pouch surgery.

Continue the story:
After the waiting came surgery, waking up different, and learning what life with a stoma actually felt like. Read Part Six – Waking Up Different: life immediately after stoma surgery

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 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.

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

👉 View Hospital Bag Organisers on Amazon

Comfortable Loungewear or Pyjamas

Comfortable clothing matters when your body already feels uncomfortable and you are preparing for hospital, surgery or recovery.

Why it helped:
✔ Softer and easier to wear when bloated, sore or tired
✔ More comfortable for resting, hospital packing or recovery days
✔ Helped me feel a little more human during a difficult stage

👉 View Comfortable Loungewear on Amazon

🔋 Portable Charger

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

👉 Find Portable Chargers on Amazon

🔥 Hot Water Bottle (Premium)

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

👉View Recommended Premium Hot Water Bottle on Amazon

Toiletry Bag for Hospital

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

👉 View Toiletry Bags on Amazon

📝Symptom Journal or Surgery Notes Book

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

👉Check Symptom Journals on Amazon

💊 Pill Organiser

Once medications became part of daily life, keeping track of everything became surprisingly stressful — especially with fatigue and brain fog.

Why it helped:
✔ Helped me stay consistent with medication
✔ Reduced stress and missed doses
✔ Simple but genuinely useful

👉 Shop Pill Organisers on Amazon

Ulcerative Colitis Flare After Remission

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.

Continue the story:
After the flare, hospital treatment and failed medication came the waiting — surgery was no longer just a distant possibility. Read Part Five – The Wait: when ulcerative colitis surgery became real

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

👉 See Bamboo Toilet Tissue Options

🩲 Protective Underwear for Men

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

👉 View Protective Underwear Options

⚡ Electrolyte rehydration sachets

I didn’t realise how dehydrated I constantly was until I started replacing electrolytes properly — not just drinking water.

Why it helped:
✔ Helped with fatigue and dizziness
✔ Better hydration during flares
✔ Easy to carry when out the house

👉 Browse Electrolyte rehydration sachets

Living With Ulcerative Colitis After Diagnosis

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.

Continue the story:
After four years of remission, life started to shift again — work, study, confidence, relapse and the point where my world began to move underneath me. Read Part Four – When the Ground Moves: when ulcerative colitis started changing my life again.

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

👉View Premium Hot Water Belt on Amazon

⚡ Electrolyte rehydration sachets

I didn’t realise how dehydrated I constantly was until I started replacing electrolytes properly — not just drinking water.

Why it helped:
✔ Helped with fatigue and dizziness
✔ Better hydration during flares
✔ Easy to carry when out the house

👉 Browse Electrolyte rehydration sachets

📝 Symptom Journal

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

👉 Check Symptom Journals on Amazon

💊 Pill Organiser

Once medications became part of daily life, keeping track of everything became surprisingly stressful — especially with fatigue and brain fog.

Why it helped:
✔ Helped me stay consistent with medication
✔ Reduced stress and missed doses
✔ Simple but genuinely useful

👉 Shop Pill Organisers on Amazon

After Ulcerative Colitis Diagnosis: What Happened Next

Being diagnosed with ulcerative colitis did not instantly make everything easier. In some ways, it made life more confusing. I had a name for what was happening, but I still had questions, fear, hospital appointments, tests, low iron, weight loss, colonoscopy prep and the strange experience of learning a medical language I never expected to need. This is what happened after my UC diagnosis — when the word “mild” sounded reassuring, but my body still felt anything but normal.

This follows on from Part One, where I shared the ulcerative colitis symptoms I ignored before diagnosis — the mucus, blood, weight loss, toilet changes, fear, and the moment my symptoms could no longer be brushed off.

PART TWO – LEARNING THE LANGUAGE

What Happens After an Ulcerative Colitis Diagnosis?

Chapter 6: Waiting With a Name

Being told I probably had ulcerative colitis gave me a name for what was happening, but it didn’t exactly give me peace of mind. If anything, it gave me more to think about.

Before that hospital appointment, my fear had been fairly simple. Terrifying, but simple. I was worried it might be cancer. Now I had this new phrase in my head as well: ulcerative colitis. Bowel disease. Inflammatory bowel disease. Autoimmune. These were words I had either never heard before or had only heard in passing, and suddenly they were being used to describe what was happening inside my own body.

I went home with medication and a diagnosis that still needed to be properly confirmed, and like most people do when they are scared and confused, I Googled it. That was probably my next schoolboy error.

Google is not your friend when you are newly diagnosed with something you don’t understand. One minute you are trying to find a simple explanation, and the next you are reading words like chronic, lifelong, flare, surgery, immune system, complications and bowel removal. It is not exactly the kind of light bedtime reading that helps you settle your mind.

The problem was that none of it really told me what my life was going to look like. It told me what could happen, what might happen, and all the worst-case scenarios, but it didn’t tell me how I was supposed to get up, go to work, raise children and act normal while my body was doing things I couldn’t control.

So I tried not to think too far ahead.

I still had the scan to get through because cancer hadn’t been fully ruled out. That hung over me more than I probably admitted at the time. I had been told there was a likely explanation, but until someone officially said I was clear, my mind kept circling back to the same fear.

The Pentasa suppositories helped settle things slightly. The mucus reduced and the bleeding calmed down, which was a relief, but it didn’t mean I felt well. I was still losing weight, still feeling drained, and still looking like a version of myself I didn’t recognise properly.

People don’t always understand how frightening unexplained weight loss can be. From the outside, weight dropping off can sometimes be treated like a compliment, but when it is happening because your body is not absorbing properly and you feel like you are disappearing in front of yourself, it doesn’t feel like a win. It feels like something is very wrong.

At that stage, I had a name for the condition, but I didn’t have control. I had medication, but I didn’t have certainty. I had a possible answer, but I was still waiting for the one answer I needed most.

I needed to know it wasn’t cancer.

Being Checked for Cancer Before My UC Was Confirmed

Chapter 7: Ruling Out the Worst

The day of the scan came, and I remember feeling like I looked properly ill. Not just tired, not just a bit run down, but ill. I was a mere shadow of my former self, and walking through the hospital corridors made everything feel more real.

We moved around the hospital, passing the chapel and the morgue, which really didn’t help the atmosphere. If you are already worried about cancer, walking past those signs is not exactly what you need to calm your mind. It made the whole thing feel heavier than it already was.

Before the scan, I had to drink a special liquid that was meant to illuminate my insides. There was a lot of it, and I had to get it down in what felt like no time at all. It wasn’t pleasant, and almost immediately my body decided it had opinions.

I needed the toilet, and I needed a wee, which is not ideal when you are about to be put inside a scanner and told to keep still.

I was taken into the scanning room and lay down on what felt like a slab. Another plate was placed over me, and I was moved into the machine with only one real thought going through my head: if this doesn’t hurry up, I am either going to wet myself or I am going to press that emergency button.

A voice came through the speaker telling me that if I needed to come out, I could press the button. That should probably have been reassuring, but it wasn’t. It just made me even more aware that I was trapped in there until it was done.

The machine started making all these beeps, grinding noises and clunks. Even with the earplugs in, it was horrible. You are lying there trying not to move, trying not to panic, trying not to think about why you are there, and also trying very hard not to think about your bladder screaming at you.

It felt like forever.

When it was finally over, I think I visited every toilet on the way out of the hospital. My body had clearly been waiting for permission to empty itself, and once it got that permission, it made full use of the facilities.

Then came the waiting again.

Three days later, the phone call came. I was told I was all clear.

Thank God.

I don’t think I realised how tightly I had been holding onto that fear until I heard those words. Cancer was ruled out. It wasn’t that everything was suddenly fine, because it clearly wasn’t, but that particular nightmare had finally been taken off the table.

At that moment, I took it as a win. I still looked like a zombie. I was still underweight. I still had bowel disease. I still didn’t fully understand what life with ulcerative colitis was going to mean.

But it wasn’t cancer.

And after weeks of carrying that fear around, that mattered more than anything.

Iron Deficiency, Weight Loss and Running on Empty

Chapter 8: Running on Empty

Once cancer had been ruled out, the next focus was trying to get me back to some kind of strength. My body had clearly been struggling, and I needed help to stop losing weight and start absorbing something again.

I phoned the hospital, and they called me in to sort out meal replacement drinks. If you have ever had those high-calorie nutritional drinks before, you will know exactly what I mean when I say they are rancid. They are thick, overly sweet, artificial-tasting little bottles of necessity. They are not something you drink because you fancy one. You drink them because your body needs help and because you don’t really have another option.

So I drank them.

To be fair, they did the job. Slowly, my body started to absorb again. I wasn’t magically back to normal, but I stopped feeling like I was disappearing quite so quickly. At that point, any improvement felt worth holding onto.

My blood tests also showed that I was lacking iron, which explained a lot. No wonder I felt like I had nothing in the tank. I wasn’t just tired in the normal sense. My body was running on fumes.

So I was called in for an iron infusion.

That meant being plugged into a machine through a cannula while iron was pumped directly into my veins. It sounds dramatic, but the actual experience was more strange than scary. You sit there watching a bag of something your body badly needs slowly go into you, and it hits you that your body has reached a point where it can’t quite sort itself out on its own anymore.

That is a weird feeling.

But it worked.

Over the next few days, I started to feel alive again. Not fixed, not cured, and definitely not suddenly full of energy, but there was a shift. A bit of colour came back. A bit of strength. A bit of mental clarity. The fog lifted just enough for me to realise how low I had actually dropped.

That was another thing I learned during this stage. When you have been unwell for a while, your version of normal starts to change. You get used to feeling awful because it happens gradually. Then something improves, even slightly, and you suddenly realise how bad things had become.

The drinks helped. The iron helped. The scan had ruled out the worst fear.

But the bigger questions were still there.

How much damage had the disease done? How far had it spread? What treatment would come next? Was this something I could actually live with, or was it going to keep taking more from me?

That is when I met the consultant who would become a major part of my life with this disease.

My First Colonoscopy and Bowel Prep Experience

Chapter 9: The First Scope

Not long after the scan and iron infusion, I met my new consultant. He would become my guide through ulcerative colitis, my Mr Miyagi, my Master Splinter of the IBD world.

He explained that they needed to see how far the disease had spread, and the way they would do that was with a colonoscopy. A camera would be fed through the rectum and up around the colon, all the way to the appendix.

Again, my heart dropped.

I had already had one medical instrument go the wrong way during the examination on Level 8, and now I was being told that a camera needed to go on a full guided tour. I know these procedures are normal to the medical team, but when you are the person on the receiving end, it feels anything but normal.

Then he handed me the bowel prep.

Picolax.

Even now, that word makes me shudder.

Try to imagine the worst drink you have ever tasted, then times it by a thousand. That is Picolax. It is seriously disgusting. It isn’t just the taste either; it is the smell, the texture, the whole experience. I can still gag just thinking about it.

And the worst part is, it does exactly what it is supposed to do.

It emptied me like a broken hosepipe.

There is no polite way to describe bowel prep. Once it starts, you are committed. You don’t make plans, you don’t wander too far from the toilet, and you don’t trust your body for even a second. You just accept that you are about to be cleared out completely and repeatedly until there is absolutely nothing left to give.

The next day, I was starving because I wasn’t allowed to eat properly. From memory, jelly babies were allowed, but not the red ones, which felt like an unnecessary personal attack when you are already miserable and hungry.

By the time I got to hospital, I was anxious, empty, hungry and very aware of what was about to happen.

Before the procedure, I had a quick chat with the doctor, who explained the risks, including the very small risk of bowel perforation. I know they have to tell you these things, but hearing it right before someone is about to put a camera through your bowel is not exactly relaxing.

Then I was guided into the room where the magic happens.

And by magic, I mean the least magical magic show ever.

There were screens everywhere. I was lying there in a gown, facing the equipment, with my dignity somewhere outside the room. The sedation went into the cannula, and that strange super-drunk feeling started to come over me. The room blurred, my thoughts slowed down, and then came the procedure.

Even with sedation, I remember enough to know it wasn’t pleasant. The feeling of it going up and around was horrific at points. I kept telling myself it would be over soon. That became the only thought I could properly hold onto.

It will be over soon.

Eventually, it was.

I was wheeled into recovery to come round from the sedation, waiting for the holy grail of hospital recovery: tea and toast. But more importantly, I was waiting for answers.

Being Told I Had Mild Ulcerative Colitis and Proctitis

Chapter 10: Mild

After the colonoscopy, I was given the summary of what they had found.

At that moment, I was told I had mild ulcerative colitis called proctitis.

The word mild stuck with me.

When you hear the word mild, you naturally want to feel reassured. Mild sounds manageable. Mild sounds like the lower end of the scale. Mild sounds like something that shouldn’t completely take over your life.

And in that moment, I did feel a bit reassured.

The disease was confined to the rectum. It hadn’t spread through my whole colon. It had a name, a location and a plan. Compared with all the fears I had been carrying, especially the fear of cancer, that sounded like good news.

The consultant explained the science behind it as simply as possible. Ulcerative colitis is an autoimmune disease, where your body sees part of itself as a threat and attacks it. In my case, my immune system was attacking my bowel.

That is a difficult thing to get your head around.

Your own body, the thing that is meant to protect you, has basically got confused and started fighting the wrong enemy. It isn’t something you caused, and it isn’t something you can just think your way out of. It is your immune system behaving as if part of you is the problem.

He explained that there wasn’t a cure in the simple sense, but there were treatments. The next step would be to try different medications and find what worked for me. There were options. There was a plan.

But every drug came with risks.

At that point, I heard the word risks, but I didn’t really take it in properly. I was too focused on wanting my life back. I wanted the blood gone. I wanted the mucus gone. I wanted my weight back. I wanted to stop feeling frightened every time I went to the toilet. I wanted to stop thinking about my bowel every hour of the day.

So when they talked about medication, side effects and future treatment pathways, I nodded along and focused on the part that mattered most to me.

This could be managed.

That was the word I held onto. Manageable.

I left believing that the worst might be behind me. I had been scared it was cancer, and it wasn’t. I had been told it was mild. I had medication. I had a consultant. I had a plan.

At the time, that felt like enough.

What I didn’t understand then was that mild doesn’t always stay mild, and ulcerative colitis was only just beginning to teach me its language.

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 Crohn’s & Colitis UK guidance on getting a diagnosis.

You can also read NHS guidance on inflammatory bowel disease symptoms.

Continue the story:
After diagnosis came the longer reality of learning to live with ulcerative colitis every day. Read Part Three – The Long Middle: learning to live with UC after diagnosis

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.

⚡ Electrolyte rehydration sachets

I didn’t realise how dehydrated I constantly was until I started replacing electrolytes properly — not just drinking water.

Why it helped:
✔ Helped with fatigue and dizziness
✔ Better hydration during flares
✔ Easy to carry when out the house

👉 Browse Electrolyte rehydration sachets

💊 Pill Organiser

Once medications became part of daily life, keeping track of everything became surprisingly stressful — especially with fatigue and brain fog.

Why it helped:
✔ Helped me stay consistent with medication
✔ Reduced stress and missed doses
✔ Simple but genuinely useful

👉 Shop Pill Organisers on Amazon

🔋 Portable Charger

Hospital waiting rooms, emergency toilet trips, and long appointments meant my phone battery was always dying at the worst times.

Why it helped:
✔ 3m Cable + 45w Super fast charger
✔ Useful during long flare days out
✔ Something I quickly stopped leaving home without

👉 Find Portable Chargers on Amazon

🔥 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

👉View Premium Hot Water Belt on Amazon

Ulcerative Colitis Symptoms I Ignored Before Diagnosis

Before I was diagnosed with ulcerative colitis, I ignored symptoms I should have taken seriously. Mucus, blood, weight loss, toilet changes, fatigue and fear slowly became part of everyday life. At first, I convinced myself it was probably piles, stress, food, or something that would go away on its own. This is the beginning of my UC diagnosis story — and the part where I wish I had listened to my body sooner.

PART ONE – BEFORE I LISTENED

Early Ulcerative Colitis Symptoms I Ignored

Chapter 1: It Wasn’t Haemorrhoids

My story didn’t start with a dramatic collapse, a blue-light ambulance, or some big obvious medical emergency where everyone around me suddenly knew something was wrong. It started with something much more ordinary, much more awkward, and probably the exact reason I ignored it for longer than I should have.

It started with going to the toilet.

I don’t know why talking about poo is still so taboo, but it is. We all do it. Every single one of us. It is one of the most normal things in the world, yet the second something changes, people would rather pretend it isn’t happening than talk about it properly. I was exactly the same. Instead of seeing it as my body trying to warn me, I saw it as something embarrassing that I didn’t really want to deal with.

In 2013, I was 26 years old and started noticing strange symptoms when I went to the toilet. At first, it was constipation. Then I noticed white streaks on the stool afterwards. I didn’t know what that was at the time, but I now know it was mucus.

Mucus is one of those things you don’t really think about until you see it somewhere you don’t expect to see it. Your colon naturally produces mucus, and it helps protect the lining of the bowel, but when you start seeing it regularly on your stool, it can be a sign that something is irritated or inflamed.

Of course, I didn’t know any of that then.

I was a 26-year-old bloke in 2013, and my expert medical approach was basically to ignore it and hope it went away. That was my first major schoolboy error.

Looking back now, I wish I had taken it seriously sooner. I wish I had gone to the doctor straight away. I wish I had understood that your body doesn’t usually send warning signs just for the fun of it. But at the time, it was easier to bury my head in the sand and carry on.

I wasn’t thinking about bowel disease. I wasn’t thinking about ulcerative colitis. I wasn’t even really thinking about being ill. I just thought something strange had happened and, if I ignored it long enough, normal would eventually come back.

So that is exactly what I did.

Life carried on around it. I had a beautiful girlfriend, and between us we were raising four children full-time. We had also just had a daughter together, which brought us to five children in total. Life was busy. Properly busy. There were school runs, work, family routines, food shops, bills, noise, chaos, and everything else that comes with a big family.

I had also started working at Waitrose, which had replaced the big Co-op in town. On the surface, things were going okay. I was working, helping raise a family, and trying to build a life like anyone else.

But quietly, in the background, my body was starting to tell a very different story.

At that point, I didn’t listen. I just carried on, hoping the problem would disappear on its own.

When Blood and Mucus Became Impossible to Ignore

Chapter 2: Hoping It Would Go Away

The problem with ignoring symptoms is that they don’t always politely disappear just because you are embarrassed by them. Mine didn’t go away. They got worse.

The mucus was no longer just appearing on the stool. It started coming out with blood as well. That should have been the moment I stopped messing about and got help properly, but even then, I tried to explain it away.

I blamed food. More specifically, I blamed a spicy meat feast pizza.

I had eaten one the night before and had diarrhoea afterwards, so in my mind that became the easiest answer. It was much easier to blame a pizza than admit that something serious might be happening inside my body. A dodgy takeaway or spicy meal felt like something temporary, something normal, something I didn’t have to be frightened of.

Deep down, though, I knew.

You know when something just doesn’t feel right. Even if you don’t say it out loud. Even if you keep joking it off or telling yourself it is probably nothing. There is a part of you that knows your body has crossed a line.

My girlfriend could see it too. She knew it wasn’t normal, and eventually she convinced me to go to the doctor. I didn’t want to go, not because I didn’t want help, but because I knew what I was going to have to talk about.

There is nothing enjoyable about sitting in front of a doctor and explaining that blood and mucus are coming out of your bum. Even writing that now feels blunt, but that is the reality of it. At the time, I was mortified. It felt embarrassing, awkward, and far too personal to say out loud to someone I barely knew.

But I went anyway.

The appointment was fairly quick, and after explaining what was happening, I was told it sounded like piles. Haemorrhoids.

Part of me was relieved because piles sounded normal. Embarrassing, yes, but normal. They were something people joked about. Something you could buy cream for. Something that didn’t sound life-changing or frightening.

So I accepted it.

Off I went to the supermarket and bought Anusol. Then came the joy of starting a course of squirting ointment up there and hoping that would be the end of it. It wasn’t exactly one of life’s finer moments, but if it fixed the problem, I was willing to get on with it.

A week passed and nothing improved.

If anything, I started questioning whether I was doing it wrong. Was I using enough? Was it strong enough? Was I being impatient? I wanted the answer to still be simple, because simple felt safe. I wanted it to be piles because piles could be treated, laughed off, and forgotten about.

But the symptoms were still there. The blood was still there. The mucus was still there. The worry was still there.

By then, the doubt had started creeping in properly.

Maybe it wasn’t piles. Maybe it never had been.

Waiting for a Gastroenterology Referral

Chapter 3: When Something Felt Wrong

After the Anusol did absolutely nothing, I went back to the doctors. This time, I wanted more than a quick answer. I needed someone to tell me what was actually going on, because by then I knew this wasn’t just an embarrassing little problem that could be sorted with a tube of cream.

I was referred to the gastro team at the hospital, but that meant waiting. And while I waited, things continued to get worse.

I reached the point where I couldn’t even pass wind without mucus being released as well. That is a strange and horrible thing to experience, because something your body has done automatically your whole life suddenly becomes risky. You start second-guessing everything. Even the smallest sensation makes you tense up because you don’t know what is going to happen.

I was also losing weight rapidly.

This wasn’t healthy weight loss. It wasn’t the sort of weight loss people congratulate you for. This was the kind where you look in the mirror and don’t quite recognise yourself. My clothes didn’t sit right. My face looked different. My body was shrinking, and I had no control over it.

That is when my mind went to the place I had been trying to avoid.

The big C.

Cancer.

Once that thought enters your head, it is very hard to get it back out again. Every symptom suddenly feels more sinister. Every toilet trip becomes evidence. Every day waiting for an appointment feels longer than it should. You try to distract yourself, but the thought sits in the background, waiting for a quiet moment to come back again.

I was naïve about a lot of things back then, but I knew enough to be scared.

The worst part was trying to carry on as if everything was normal. I still had work. I still had family life. I still had responsibilities. The world doesn’t pause just because your head is spinning with worst-case scenarios.

So I kept going.

I went to work. I tried to act normal. I tried to be present at home. But underneath it all, I was frightened. I was frightened that I had ignored it for too long. I was frightened that the first diagnosis had been wrong. I was frightened that by the time someone looked properly, it would be too late.

Looking back, this was the point where the embarrassment started to disappear and fear took its place. Suddenly, talking about poo didn’t feel like the worst thing in the world. Not knowing what was happening felt much worse.

Being Checked for Cancer and IBD

Chapter 4: Level 8

Eventually, the hospital appointment came through.

Me and my girlfriend went to the hospital and made our way all the way up to Level 8. I say made our way up, but we took the stairs because she hates lifts. At the time, that was just one of those little details. Nothing important. Just something that happened. Funny how certain details stick with you when everything else feels like a blur.

We signed in and sat waiting.

I remember feeling nervous, but also desperate for answers. By that point, I had gone past the stage of hoping it would magically disappear. I needed someone to look properly and tell me what was going on.

Eventually, we were called into a small room by a nurse, and I explained my symptoms. This time, I didn’t try to make it sound better than it was. I told her about the blood, the mucus, the weight loss, and the fact I couldn’t even pass wind normally anymore. There was no point being vague. My dignity had already taken enough of a battering by then.

Then she said the sentence I wasn’t prepared for.

She told me they had to make sure it wasn’t cancer, because they couldn’t rule that out yet.

My stomach dropped.

I looked at my girlfriend, and I think my face probably said everything I couldn’t. I had been scared of that word for weeks, but hearing someone medical say it out loud made it real in a completely different way. Until then, cancer had been a fear in my own head. Now it had entered the room.

But that still wasn’t the most uncomfortable part of the appointment.

The nurse then said she needed to examine me.

Now, when someone says they need to examine you in that context, you already know your day is about to get significantly worse. She asked me to go behind the curtain, and all I could think was, “So I’ve got to get my bum out for this lady now?”

I was mortified.

Then she pulled out this long metal instrument that looked like some sort of transformer device from a nightmare, and it suddenly became very clear how this examination was going to happen.

There was no graceful way through it. I took a deep breath and got on with it.

That was the first time anything had gone upwards instead of following the natural downward flow it was designed for, and I can safely say it was not an experience I was keen to repeat.

The examination only lasted a few minutes, but it felt much longer. It was uncomfortable, embarrassing, and one of those moments where you realise that when you need answers badly enough, dignity becomes a luxury.

When it was over, she told me she couldn’t see any haemorrhoids. No piles. So the original diagnosis had been wrong.

Then she told me she knew what she thought it was.

Ulcerative colitis.

A form of bowel disease.

I finally had a name for what was happening, but I had no idea what that name actually meant.

Hearing the Words Ulcerative Colitis

Chapter 5: A Name, Not a Solution

When the nurse said ulcerative colitis, my head started spinning.

Part of me was relieved that there was an explanation. Another part of me was still stuck on the fact they needed to send me for a scan to rule out cancer. So even though I had been given a likely diagnosis, it didn’t feel like an answer that let me breathe properly.

It felt like being handed one piece of a much bigger, scarier puzzle.

I asked what bowel disease actually meant. She explained that there are different types of inflammatory bowel disease, including Crohn’s disease and ulcerative colitis. Crohn’s was a name I had heard before, mainly because I remembered watching Dynamo the magician and finding out he had it. But ulcerative colitis was new to me.

I didn’t know how I had got it. I didn’t know if it could be cured. I didn’t know what it meant for my future. I didn’t know whether my life was about to change a little or a lot.

And hanging over all of that was still the question I couldn’t get away from.

What if it was cancer?

At least one thing was clear. I didn’t need to keep using the Anusol. There were no haemorrhoids to treat because haemorrhoids had never been the problem.

Instead, I was given Pentasa Mesalazine suppositories to use every night to help soothe the inflammation and calm the symptoms. Again, there is no glamorous way to describe that. A suppository is exactly what you think it is, and when you are still getting used to the idea that your bowels are now a medical subject, it feels like a lot.

But I tried to make sense of it in my own way.

In my head, I imagined it a bit like a reverse Gaviscon. Instead of the little firefighter going down to put out stomach acid, this medication was going in the opposite direction to calm everything down in my colon. It might sound ridiculous, but sometimes humour is the only way to process something that feels too big.

And to be fair, it did help.

The mucus settled down. The bleeding eased. For the first time in a while, something seemed to be working. That gave me a little bit of hope, even if I still didn’t fully understand what I was dealing with.

But I still wasn’t putting weight back on. I still didn’t look right. I still didn’t feel like myself. And I still had the scan hanging over me.

So yes, I had a name.

Ulcerative colitis.

But at that stage, it didn’t feel like a solution. It felt like the beginning of a very long lesson I never asked to learn.

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 Crohn’s & Colitis UK guidance on getting a diagnosis.

You can also read NHS guidance on inflammatory bowel disease symptoms.

Continue the story:
After the first symptoms came the waiting, the tests, the fear, and learning what ulcerative colitis actually meant. Read Part Two – Learning the Language: what happened after my ulcerative colitis diagnosis

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.

📝 Symptom Journal

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

👉Check Symptom Journals on Amazon

🔥 Hot Water Bottle (Premium)

During flare days, the cramping and abdominal pain could be relentless. Heat was one of the few things that brought genuine comfort.

Why it helped:
✔ Helped ease stomach cramps
✔ Comfort during sleepless nights
✔ Became part of my daily flare routine

👉View Recommended Premium Hot Water Bottle on Amazon

🔥 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

👉View Premium Hot Water Belt on Amazon

💷 Budget Hot Water Bottle

Sometimes the simplest things help the most. A standard hot water bottle was one of the few things that consistently brought comfort during cramps, flare pain, and sleepless nights.

Why it helped:
✔ Simple and affordable
✔ Easy relief during stomach cramps
✔ Perfect backup for flare days
✔ One of those small comforts that genuinely mattered

👉 See Budget Hot Water Bottle on Amazon

⚡ Electrolyte rehydration sachets

I didn’t realise how dehydrated I constantly was until I started replacing electrolytes properly — not just drinking water.

Why it helped:
✔ Helped with fatigue and dizziness
✔ Better hydration during flares
✔ Easy to carry when out the house

👉 Browse Electrolyte rehydration sachets

🧻 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

👉 See Bamboo Toilet Tissue Options

🔋 Portable Charger

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 during long appointments and hospital waits
✔ Helped me stay connected when I was anxious or away from home
✔ Useful when toilet trips, fatigue and appointments made days unpredictable

👉 Find Portable Chargers on Amazon

💊 Pill Organiser

Once medications became part of daily life, keeping track of everything became surprisingly stressful — especially with fatigue and brain fog.

Why it helped:
✔ Helped me stay consistent with medication
✔ Reduced stress and missed doses
✔ Simple but genuinely useful

👉 Shop Pill Organisers on Amazon