Pentasa Archives - The Stoma Accountant

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.

For me, living with ulcerative colitis after diagnosis became a long process of learning what my body could cope with, what treatments helped, what side effects changed me, and how quickly symptoms could return even after things seemed settled.

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.

At the time, I did not realise this was only one stage of my wider ulcerative colitis to stoma journey.

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.

That thought would come back later, when failed treatments and worsening symptoms eventually pushed me closer to stoma surgery.

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.

But remission was not the end of the story, and eventually ulcerative colitis started changing my life again.

Contact your GP or medical team

Its not medical advice, This is my personal experience living with UC, flares, medication, side effects and remission.

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 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 While Living With Ulcerative Colitis

Living with ulcerative colitis after diagnosis meant learning how to manage symptoms, medication, flares, side effects and the uncertainty of remission. Some days were manageable, while others revolved around fatigue, urgency, pain, hospital appointments and trying to keep life moving.

These are a few practical things that helped me feel more prepared and organised while living with ulcerative colitis, especially during flare-ups, treatment changes and the long middle part of the journey.

🔥 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

Wearable hot water bottle belt for abdominal cramps during ulcerative colitis flare symptoms

👉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

Electrolyte rehydration sachets for hydration during ulcerative colitis flare symptoms

👉 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

Symptom journal for tracking ulcerative colitis flares medication and symptoms

👉 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

Pill organiser for managing medication after ulcerative colitis diagnosis

👉 Shop Pill Organisers on Amazon

After Ulcerative Colitis Diagnosis: What Happened Next

A man reflecting on what happened after his ulcerative colitis diagnosis, including tests, colonoscopy and proctitis

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.

For anyone newly diagnosed with ulcerative colitis, the period after diagnosis can feel overwhelming. You may have a name for what is happening, but that does not mean you instantly understand the tests, medication, symptoms, hospital language, or what life with inflammatory bowel disease might look like.

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.

That fear did not disappear after diagnosis; it became part of learning how to live with ulcerative colitis day by day.

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.

Over time, that lesson continued as symptoms returned, treatments changed, and I had to learn what living with ulcerative colitis really meant.

Contact your GP or medical team

This is my personal experience of what happened after my ulcerative colitis 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

Things That Helped Me After My Ulcerative Colitis Diagnosis

After my ulcerative colitis diagnosis, I was trying to understand hospital appointments, tests, medication, bowel prep, low iron, weight loss and what this new condition actually meant for my life.

These are a few practical things that helped me feel more prepared during the diagnosis stage, especially when appointments, medication and uncertainty started becoming part of everyday life.

These are not cures or medical recommendations — just small things that helped me feel slightly more prepared during tests, diagnosis, medication, hospital appointments and learning what UC meant.