I had been diagnosed with Ulcerative colitis about 2 years after the onset of my symptoms, which began in 2020. I remember having a conversation with my housemate about how many bowel movements were normal. I was on the high end of the NHS ‘normal range’ of 3 times a day while he was on 3 times a week, the other end of that scale.
First symptoms
I became a runner for a short time in my history and it would be after a run in 2020 I would need to run home to get to the toilet. ‘Those post run poops!’ I used to joke, not realising something more serious was happening. It was about this time, I saw small drops of blood on the toilet paper, and moving my bowels became an unpleasant experience. Not only the frequency or the dread of whether there was blood, but the pain that began with every toilet trip.
Getting seen
2020 was an uncertain year for everyone, but finishing my degree and the stress of the pandemic led my body further in the symptoms of inflammatory bowel disease (IBD). It was towards the end of the year, when Ben and I had moved into our house near Cambridge that I saw a doctor about my worsening symptoms.
I had my bloods and stool tested which came back normal. A message on the gp online system brought me a piles diagnosis, which I was immediately sceptical of. It didn’t feel like piles, it didn’t look like piles, I wasn’t in any of the at risk categories and I certainly wasn’t straining to use the loo, the opposite actually.
I called and asked for this diagnosis to be confirmed to which the doctor replied ‘Are you sure? I’ll need to take a look up there’. Am I sure I want an accurate diagnosis? Yes. Am I sure I wanted him to take a look? No. “Book me in” I ordered.
First diagnosis
After what was a vastly unpleasant experience in a side room of the gp office, I got up, got dressed and walked in to hear ‘yes well there is inflammation there so I’ll refer you to a gastroenterologist. It’s not piles.’ Well thanks Doc. With the state of the NHS at this time I went through my work’s private healthcare (which I don’t know what would have happened if this wasn’t available to me, I’m so so so lucky to have been able to access such healthcare).
Within 1 week of speaking to a GP with private healthcare I had an appointment with a private gastroenterologist. Who also needed to ‘take a look’ at my inflammation. Camera number 2. Yes there was inflammation, to what extent needed to be confirmed with a flexible sigmoidoscopy. Camera number 3.
The procedure showed my inflammation was limited to the rectum and gained me the diagnosis of Proctitis: Inflammation of the lining of the rectum. Proctitis can be acute, or chronic, nobody had mentioned chronic to me yet so it felt like a little health blip that I could get medication for and get back to health.
Second diagnosis
The medication came in the form of a suppository (which goes where the sun don’t shine). Unresponsive. Foam enemas. Unresponsive. Liquid enemas. Unresponsive. A course of steroids. Unresponsive. A change in gastroenterologist who also needed a look. Camera number 4. Then a scheduled colonoscopy. Camera number 5.
Then came what sort of shattered my world. January 2022 after my colonoscopy I was diagnosed with Ulcerative colitis. A chronic disease characterised by inflammation of the bowel. Coming to terms with the fact I’d be living with this now for the rest of my life was not easy. A few months after my diagnosis bowel babe died and I went into a rabbit hole looking at my chances of cancer increasing with so many years of inflammation.
After the steroids came the immune suppressants which could take 3 months to show whether they were working. They didn’t. My gastro kept me on the for longer as there was a chance they might still work. They didn’t.
Unresponsive to treatment
My flare up became so bad. The pain in my stomach, the nausea was almost constant, the pain going to the bathroom, the amount of blood, the urgency, the number of times I had to go to the bathroom, the wind which also began pouring with blood.
My immune system was going to town attacking my colon. So it probably didn’t have the strength to deal with the weird diets I’d been trying to get on top of the pain, or the chest infection I came down with in October. I’d actually missed my first work trip abroad because of this chest infection. I’d had sick days before but this was the first time I’d been off for a whole week. That week turned into 5 months off work.
Significant decline in health
My chest infection along with the flare up made me so fatigued I had to go to my mums house to be cared for, as Ben still needed to go to work and I was struggling to cook for myself. From there, I contacted IBD nurses who gave me just so many prescription drugs to get my pain under control. I was vomiting up most of my food, using the toilet 15-25 times a day with just blood coming out. I was almost passing out when I stood up. My friends tried calling me on the phone and I didn’t even have the energy to speak. Ben celebrated his 27th birthday with me silent on the couch drifting in and out of sleep, with barely enough energy to smile.
I had about 8 or 10 enemas to administer day and night, tablets and granules trying to get the flare under control. I slept in my sister’s room because it had an en-suite but I still didn’t make it at times, and so my mum brought home adult nappies for me to wear at night so I didn’t have to clean up my bloody mess spattered on the floor and the walls of that bathroom.
It was bad. Meanwhile the pain in my stomach would not let up. I burned myself daily with scorching hot water bottles as it was the only thing to provide relief. I messaged my IBD nurse every few days asking for something for the pain, anything for the pain.
One morning, I had woken up about 10 times to use the toilet in addition to the three times I had to wake up to take these enemas. During that time I drank two pints of water and I was so so thirsty. I crawled into my mums bed in the morning and she brought me a pint of orange juice. I tried the nurse again for something for the pain and I’d told her about being so thirsty. Was it normal? She then (finally) advised I go to A&E.
A trip to A&E
My mum raced back home and got me in the passenger seat. On the way to the hospital I had to ask her to slow down because I couldn’t handle the additional stomach pain from the bumps on the road. In A&E I was seen very fast for NHS standard. Within about 15-20 minutes I was in a bed being looked at. My mum said my eyes had started rolling. Looking back I feel like I was in a dream. Everything was hazy as I tried to make sense of the questions being asked to me.
Severe dehydration meant it took many, many attempts to put in a cannula to administer those desperately required fluids. I was wheeled from room to room with my mum coming along and wires hanging out of me. I still needed the toilet at this point and had to use a commode for the first time with another ill stranger and my mum behind the thin vail of a hospital curtain. It was loud, and when I asked my mum ‘does it smell bad’. She said ‘yes but it’s okay Lauren’.
Hopsital admission
Eventually I was wheeled into a private room and had my mum and stepdad visit, and later Ben. I fell asleep there, was wheeled into another room, and then finally admitted to a ward. The gastro at the hospital told me the course of action: 1) steroids 2) immunosuppressants and in a possible emergency 3) surgery.
My hospital stay was long, pretty damn dreadful. Downright traumatic if I’m being honest. May now isn’t the time to go into it because I’m starting to feel sick thinking about it. But what comes to mind is the woman that couldn’t speak english, kept stealing scissors and spoke to me aggressively at 3am. What felt like half of my hair falling out after brushing it for the first time in 3 weeks. Having to throw out my sisters pyjamas after yet another time I didn’t make it to the toilet.
This was all before my surgery. After I think of the day I got sepsis, vomiting bile through my nose and mouth over myself and not being able to reach my help button because I couldn’t sit up as I didn’t have the core muscles yet, learning to walk again, seeing my intestine poke through my stomach for the first time.
Then when I was discharged I think of being told at 11am and not being able to leave until around 7-8pm. Crying the first time I got in the car with my mum to go home. Losing even more weight out of hospital. Being skin and bones, and being uncomfortable sitting down, lying down even on a mattress and not having the strength to get up off the floor.
My support network was everything
Thinking about it now I have tears rolling down my face. Wow I had so much good support during that time, from my stoma nurses, my surgeon, my family, friends and Ben. But damn was it so hard. So hard to get through that time. I’ve come so far since then but there is still so much pain when I think hard about that time of my life.
I want to put it out there, I want to show people that there’s light at the end of that long long tunnel. I don’t want them to feel alone or abandon their dreams for something they didn’t chose or can’t control. I didn’t want that for myself and I don’t want that for anyone else. So if I can be a beacon of light for at least one person reading this then I’ve achieved something big.
I understand this is a long read but hold onto your hope, with whatever you may be going through, hold on to your friends and your family because they will help you get through this. Thank you so much to every single individual that helped me get through the toughest times. I’ve tried but I can’t express my appreciation enough for the support, love and kindness.
