How I discovered I had Ulcerative Colitis.
When I started writing, I vowed that I’d be open and honest about all aspects of my life, even the parts that I really would rather keep to myself. Purely because there may be one person out there, out of the billions on this planet, who see’s one of these posts and thinks “I’m not alone in this”. So today we’re going to be discussing the physical illnesses I am diagnosed with, the one which nobody sees.
My UC Story
Before I moved back in with my mum, we made a promise to one another that if ever we were to get into a serious relationship (and I hadn’t moved out yet), we would either find a place to live with our partner or we would move in with said partner, but that our home would stay a kind of ‘Women Only Sanctuary’. Safe to say that didn’t work out.
My mum met a guy (my now step dad) when I was about 24/25 years old, and after five weeks, he was living with us. Not staying over most of the time, not staying over for a week and then going home for a few days – he was full blown living with us and on the tenancy agreement. So we had a man in the house, a man I didn’t know. A man who, at the time, I didn’t like. A man who was, literally just a man – and due to the attack, this made me feel violated. I felt like my mother had broken the one promise she’d made to me when I moved back home, and I felt betrayed.
My first UC flare
Around the time he moved in, I stopped making my own meals. I stopped going downstairs if I could help it. I didn’t like leaving my room, because that room filled with a flat’s worth of stuff was my only safe space. I ended up ordering a lot of takeaways. Most of them healthy because I was living in an area where you could have fairly healthy food delivered, but some not. I filled out a bit, bigger boobs, bigger bum, it could have been worse, but the effect it had on my body was huge. It triggered one of my first ever Ulcerative Colitisflare ups.
Obviously at the time I had no idea I even had UC, I’d always eaten fairly healthy, and it seemed to come on suddenly and without warning. One night I got severe cramps – the only thing I could really compare them to were the cramps I felt when I miscarried at three months. They were agonising. I ran to the toilet – fully expecting to be having a miscarriage, trying to remember when I was last sexually active, and was in so much pain, I felt like I was going to pass out. I was clutching the bath beside me, seeing stars.
Blood in my stool
It wasn’t a miscarriage, I’d simply passed a stool. (omg ew, she’s talking about taking a sh*t) Yes, I’m aware there are going to be some of you reading this who believe women don’t sh*t, but I’m here to tell you that we do. Incredible right?
When I looked in the toilet bowl though, it was filled with blood. When I wiped, it was covered in bright red blood. I was – literally – scared sh*tless.
I confided in my mum. I sent her photos in case I needed to go to A&E and show them to a doctor, but she put my mind at ease when she told me it was probably just a burst haemorrhoid, and I shouldn’t worry about it. I felt like there was no way I wouldn’t have noticed a haemorrhoid before, and that there was way too much blood for it to be something so simple, but I decided ignorance is bliss and I carried on.
Then the blood started happening daily
Multiple times a day and I was losing so much blood. I was weak, I was light headed, and every time I was on the toilet I swore that I was dying. I was in agony. I told my mum I needed to make a GP’s appointment, and so she accompanied me. He took a stool sample, told me there was nothing wrong, and sent me on my way.
Except something was wrong, I could feel it. I noticed it was worse after any kind of greasy food, and so I started ordering food deliveries from supermarkets, and healthier options when I didn’t have the patience to go downstairs, endure the argument that would inevitable ensue between me and my mums partner and cook myself a meal.
Feeling betrayed, again.
One of the worst experiences was when I was sitting on the toilet, crying, clutching on to the bath, my head resting on the cool surface and trying not to pass out. I heard from the living room below, my mums partner say “If she didn’t eat so much crap, maybe she wouldn’t be shitting blood all the time”. My mum had told him something so deeply intimate, something that was causing me so much pain, and what was worse? I then heard them laughing about it.
I went back to the GP. He noticed that I’d lost a large amount of weight in a very short period of time, and he prescribed me Ferrous Fumarate – a kind of mega iron-supplement. It helped, but only because it made me so constipated I would only go to the toilet once every two weeks.
I started cooking for myself
I cooked healthy meals and drank endless bottles of water, but the family shared a fridge – so that expensive healthy food I was buying for myself? Was being used without my permission. The logic of my mum and her partner being “Well, we cook you meals.” Except, they didn’t. I’d gone months living off of takeaways, cooking for myself – and yes, I admit, I would occasionally (maybe once a fortnight, once a week if I was feeling extremely weak) ask for them to cook for me too. The difference was, they were having bangers and mash, and I was having avocado and roast chicken salads, Greek yoghurt, Quinoa – foods that were expensive. Yet they were being used in his work sandwiches, and they felt entitled to them, like they didn’t need to ask. Because they gave me a couple of sausages and mashed potatoes a week before.
I digress, eventually things reached boiling point and I was told that I needed to leave. Another promise my mum had made to me was that she would never kick me out again (for the third time), and she swore to me that if I moved back home, she wouldn’t. Except she did. I don’t know what I did in a previous life to deserve what happened next, but it must have been something incredible because just as I was giving up hope (and coming up to the day where I would be made homeless), I was offered a property. It was perfect.
Stool test results
I moved in and made it home, met my neighbours, settled into a routine. Yet I was still bleeding insane amounts, and so I spoke to my new GP. He first did a stool sample, which came back negative. He then tried a second, different test, it came back negative. It wasn’t until last year, when I was 27, that he ordered a stool sample called a FitKit (which they usually only give to patients over the age of 70). He got the results, and his face was ashen when I walked in. “I don’t want you to worry, but I’m going to have you booked in for an emergency appointment with a Colonoscopist, as we believe you may potentially have colorectal cancer.” I was seen within two weeks.
As a victim of gang rape, just the initial examination was horrific. Having a man put his fingers inside me made me feel sick, and I wanted to smack him in the face, but the words “Cancer. Cancer. Cancer.” kept echoing in my mind, and I endured. He sat stony faced as he told me he was booking me in for a colonoscopy, they needed to see what was going on and take biopsies.
I was heartbroken
In the two weeks before my colonoscopy, I went to a local music festival with family. I told my dad and he said “Cancer?” and I nodded. He said “Let’s not talk about this now, let’s enjoy the weekend.” I felt like there was just this sob stuck in my chest that wouldn’t come out. My uncle on my dad’s side, and my aunt on my mum’s side (Yeah, my family situation is confusing), both looked at him in shock, and then to me. They held their tongues, because I had held mine. I didn’t leave my tent that entire festival, I tried at one point to go and enjoy the night, but there was an issue with ticketing and I felt a sense of relief when I realised I had to go back to my tent. My dad, my aunt (my dad’s sister), my cousin and my uncle (my dad’s sister's husband), all ran into the festival, leaving us outside. Me and my aunt walked back to my tent. The next morning, when we were packing up to go home, I was drained. I was tired. I was seething. I was hurt. I was heartbroken, and I had an invasive medical procedure coming up. My aunt (on my dad’s side) told me I’d been “Lazy and antisocial the entire festival, the least I could do was help put the tents away”. I ignored the fact that I’d put the f*cking tents up whilst she coincidentally turned up after all the hard labour was actually done and told her that I just wanted to finish my coffee. When the tents were away, I left without saying goodbye. My dad didn’t mention the surgery coming up, he just said goodbye.
I’d never been good with needles, but after three blood tests, I’d gotten the hang of it. My greatest fear was conquered and in all honesty, I didn’t care if they found cancer. I felt disposable, I felt low and I didn’t give much of a f*ck what the diagnosis would be. The night before the colonoscopy I was awake all night attempting to drink the ridiculous amount of laxative they’d given me. I couldn’t, it wasn’t working. I was drinking as much as I could and all it was doing was making me want to be sick. I couldn’t eat anything, I was trying to drink around 4 litres of laxative that tasted like sh*t and all it was doing was making me bloat and feel nauseous. The next morning they put the cannula in, told me to wear a hospital robe with no back, and no knickers.
Then they walked me to the room where the procedure would take place – past a load of other patients, as I tried to hold my robe closed at the back, whilst also carrying my belongings. The doctor seemed nice enough, he gave off a good vibe, and the two women who were in with me seemed nice too. They told me to lie on my side and that I would feel calmer and calmer until I was completely anaesthetised and relaxed (very floopy, one nurse called it, recalling patients saying the funniest things whilst under the influence of the medication).
Except that’s not what happened with me...
I was given Fentanyl for the pain, Gas and Air, and something else which I can’t for the life of me remember. I should have been off of my tits. Instead, I felt five seconds of warm heat in the back of my head, and then felt normal again. I felt everything. I was in agonising pain as air was pumped inside of me and I felt the tugging sensation as fifteen biopsies were taken. The doctor doing the procedure was shocked, he said “She shouldn’t be feeling anything but discomfort.” to one of the nurses. When I was wheeled into the recovery room, patients who had been through the same procedure were still out of it. I was texting my nan – entirely coherent. The nurse, and the doctor couldn’t believe it. I was told I shouldn’t have felt anything but mild discomfort and that in future if I needed an operation I was to tell the people doing the procedure about this. I had my blood pressure taken twice and was discharged within half an hour.
The results came back eventually. I was called in to see another Colonoscopist. I was cancer free, but I had Ulcerative Colitis, and was at risk of getting colorectal or bowel cancer in future. I thanked him and was put on suppositories for UC, indefinitely. I’m still on them.
Living with UC is exhausting.
Recently I started bleeding again, as bad as before. I was prescribed steroid suppositories to take twice at night – but all my local chemists and their suppliers are out of stock. I’m awaiting a call back to figure out my next move.
I’ve been on a vegetarian diet for over a week now, I’ve also cut out eggs. I can pinpoint almost immediately if something doesn’t agree with me, as I’ll get severe cramps.
Living with UC is exhausting. It tires me out, I suffer from immense fatigue and vitamin deficiencies. Along with Fibromyalgia, ME and suspected EDS (currently undergoing tests). I am in constant pain – despite being on hospital strength prescription painkillers.
“You’re not disabled!”
I’m registered as disabled, but to look at me, you’d think I was totally fine. If someone was to see me getting out of a car parked in the Disabled bays, they’d no doubt screech “You’re not disabled!”. Yeah, tell that to my arsehole and the rest of my body.
When I went to Disney in 2019, I was given a badge which gave me priority and allowed me to enter all rides through the exit due to my PTSD, panic disorder and Physical illnesses (at that point, only Fibro and ME) and the looks I got. Bloody hell, you’d have thought I’d squirted them with a piss filled Nerf Gun. I can’t wait to see the looks on their faces when I go in 2021 and I’m still registered disabled.
And that children, is how I lost faith not only in my original doctor who let me down for four years, but also in my parents and my bodies ability to be knocked out by modern medicine. That’s the story of my colon, how it hates anything that tastes good and brings me joy, bleeds like I’ve been shot when it’s having a temper tantrum over a slice of bread, and why I am now struggling to 1) Not slip back into my ED, and 2) Cut the damn thing out myself.
Thanks for listening, sleep tight.
What is your comfort level disclosing your IBD to your employer?