I was 14 and had blood in my stool, Ulcerative Colitis changed my life forever

Zosia Krajewska, 29, an IT business advisorfrom London, works in the digital world. She was diagnosed with ulcerative colitis at the age of 15, which caused her severe stomach and toilet issues for much of her life. Here, she shares the horrific symptoms she endured before finding the right treatment and how she is determined not to let the condition hold her back in life.

I was 14 and frightened...there was a lot of blood in the loo, much worse than a heavy period. It was on the toilet paper, my underwear and entwined in my stool. I apologise for the graphic description, but imagine diarrhoea mainly consisting of blood. This is the brutal reality of ulcerative colitis.

There had been some blood before, but I’d shrugged it off as ‘normal’ somehow. But, this time I knew something was very wrong. I told my mum, Helen, about the blood. But there were other symptoms I’d been suffering with too: frequent fatigue and breathlessness, abdominal pain, numerous toilet trips, loose stools, headaches and nausea. Mum immediately booked a GP appointment.

The GP inspected my rear end – which at 14 felt bizarre – and said the bleeding was probably an anal fissure. But, my mum wasn’t convinced. When my symptoms continued for a couple more weeks she took me back to the surgery in Oxford, where I lived with her, my dad, and my younger brother Francis.

A different GP was on duty and this time Mum, then a French teacher, came armed with research and notes documenting my symptoms and medical history, saying, "I think my daughter has ulcerative colitis." Sure enough, this GP referred me to the gastroenterologist at the John Radcliffe Hospital in Oxford.

Treatment ordeal

My dad Andrew has UC himself, he was diagnosed as an adult, when generally symptoms are fewer. Mum had joined the dots. UC has a hereditary element: 10 to 25% of sufferers have a parent or sibling with it too.

I was booked in for a colonoscopy in a few weeks. Between then, I turned 15 and we went on holiday. In France however, I had such terrible abdominal pain I ended up in an ambulance to A&E.

The colonoscopy they gave me was an ordeal – from drinking the awful salty laxative (to enable the camera to have a clear look at my colon), to having weird tubes up my bottom. And lo and behold, they diagnosed me with UC. Yet I didn’t understand what lay ahead.

I was discharged with liquid enemas, which Dad had to administer rectally. Luckily, we’re close, or this could have been mortifying. Dad clearly hated seeing me suffering – he would have crossed the earth to help me.

Everything post-diagnosis is a blur, but I remember getting angry, confused and frustrated, pulling out all my IVs and wanting to go home.

Things got worse back home. The medications just weren't helping, and I was back in hospital on a weekly basis, being plied with more drugs. I was on 14 tablets a day, plus the enemas. But I just tried to focus on my GCSEs.

At school I warded off nausea by sucking polos, and kept a sick bag and spare underwear on me, never knowing when a loo trip might strike.

Hospital dashes

When I clearly wasn’t improving, another investigative colonoscopy took place in January 2009. It usually takes 20 minutes; mine was much longer. Outside, the doctors warned Mum: "You need to get your husband here."

The camera had identified that I had 75 per cent ulceration, what they called pancolitis, and they said I needed a 'fire extinguisher to dampen the inflammation'. I was to stay in hospital for a week. "But my GCSEs!" I cried. "Can’t it wait until half term?" Of course, it doesn’t work like that.

By the time I was discharged, all the steroids had left me with a moon face and bloated body. I tired easily, but over the next few months the blood loss eventually stopped.

I was offered counselling but refused it – unwisely with hindsight. I hadn’t realised how all this trauma would catch up with me later. Ultimately, though, I still achieved the A*s and As I wanted, and even went on to lead a dance production.

Thankfully, my health stabilised, and after passing my A levels in 2012, I landed places at top universities in both France and the UK, studying politics and economics.

Everything was fine until summer 2015, when I visited my then-boyfriend in Germany and I ended up in A&E with food poisoning. But unluckily for me, it triggered my next relapse.

I’d broken up with the boyfriend (unrelated to my illness) and I was left heartbroken, looking and feeling terrible. I cried regularly because I felt so ill, turning on the shower so my flatmates wouldn’t hear. Depression descended at the same time as I battled with more blood loss.

Losing weight

I never weigh myself, but within a week I must have lost five kilos (11 pounds). I was far too thin for my 169cm (5ft 5) frame. I needed medical help and luckily, I was passed to one of France’s best gastroenterologists.

At the next colonoscopy, I was sedated (not fully anaesthetised) and I saw my flared colon on the screen. Healthy ones are pink, mine was brown from the blood.

The French doctor determined that I was steroid-resistant – a big problem as this is a key way to treat UC. There was talk of surgery again, harsh medications and another week in hospital. Again, I doggedly continued studying from bed.

Struggling with uni life

Eventually, I stabilised and was discharged. But I can’t lie, life was challenging. At 21, I couldn’t stay out late like other students, conscious I’d be up at 6am for blood tests. Or I’d be heading out with friends for a night and see blood on my underwear, a constant reminder I wasn’t ‘normal’.

The long hours of studying and intense exams exhausted me. I’d dread dashing from lectures to the toilet. I found it hard to sleep, thanks to stomach and joint aches.

Then in 2016, I returned to London for my master's degree, and by the following January [2017] I was put on biologic injections once every two weeks. That medication changed my life. While there was still some blood, I was coming out of the relapse.

Complementary therapies

I’m still on these meds, they’ve been tweaked along the way, and now I go for infusions every two months at the hospital, instead of injecting myself. This may change again, my condition needs monitoring for life, but right now – touch wood – I’m in remission.

Despite being a former physics teacher, Dad sought therapies outside of Western medicine to help and took me to acupuncture. The therapist declared I was one of the sickest patients he’d treated. But after one session, Mum smiled, "I have my daughter back, her eyes are sparkling again." I still go weekly even now.

Protecting my gut health

Unsurprisingly, my gut bacteria has suffered, so guided by a functional doctor I now take supplements: magnesium, turmeric, targeted probiotics and many more to build up my gut health. Personally, I found cutting out lactose, soya and more recently, red meat, all helped. Despite my chronic illness, I suspect my gut health is better than most people’s now!

Then in 2020, I began cognitive behavioural therapy (CBT) for the severe anxiety I’d developed from the trauma. I learned mindfulness and meditation, which I practise daily, focusing on my breath, or going for a meditative walk helps calm abdominal pains or bloating.

Looking after my mental health

I’ve also developed a two-hour, sacred morning routine. Rising at 5.30am, I'll eat my gut-friendly French toast breakfast, read and journal – scribbling down the day’s thoughts and things I’m grateful for. Then I’ll hit the gym, training five times a week is my outlet.

Lifting weights makes me feel physically – and mentally – fitter. These habits, developed over years, have stuck – and they really work. When I tell people about my illness, they look surprised, saying, "but you look so well." I thank them, smile, but quietly think: "You don’t know the strength it’s taken to get here."

My family is amazing and my friends are fiercely loyal. But new relationships – especially staying over for the first time – have to be navigated. Mostly, boyfriends have been totally understanding about my eating and toilet routines.

Today, I consider UC as my strength, not my weakness. I feel my life’s purpose is raising awareness of and improving attitudes towards long-term conditions. Telling my own story helps break taboos.

Eventually, I’d love to work in government, creating policies to help with long-term disability and making real change for the better. I'll forever have this chronic illness, but it won’t hold me back. I’m single now but one day I’d love to get married and have children and pass on all I’ve learned about life. I don’t worry about the future though, I’m focused on the present.

For more information on Ulcerative Colitis and Crohn’s Disease see Crohn's and Colitis UK website.