We have seen the memes about the confusion of having a uterus and experiencing stomach pains. Is it period cramps? A cyst? Food poisoning? Do I need to call an ambulance? The difference between mild irritation, and actual blind panic. Over the last 2 years, I started to get some answers…
In August 2018 I moved home from university. I had completed my degree and thought I had an exciting year ahead of me. Not traditional, but definitely exciting. I’m lactose intolerant, but it really hit me after eating Brighton fudge; I tried to savour it, but eventually I realised it was making me sick. I cried in pain, late at night, on the toilet with my stomach swollen to triple its size and the worst nausea I’d ever had. Every night I’d be up until 2am. This wasn’t normal. My stomach would get temperamental, but it wouldn’t keep me up at night and I definitely wouldn’t be in this much pain.
I went to my GP with a list of symptoms and estimated time frames, and he confirmed my suspicions. He thought I had an IBD. Crohn’s disease is an inflammatory bowel disease (IBD) where any part of your intestine (from your mouth to your anus) can be inflamed and cause a selection of awful symptoms. I’d been ordered a blood test and a very glamorous stool sample to check my inflammation levels. They were worryingly high. I’d been misdiagnosed with IBS six years prior. IBS is Irritable Bowel Syndrome, it is not the same as an IBD. It can cause all the symptoms I was experiencing, but it doesn’t cause the same inflammation typical of an IBD, and there is no blood loss with IBS.
I had to go through many doctors and tests before anything was confirmed. First was a Colorectal Surgeon for an initial assessment, surgeons in general are often blunt and not super friendly so prepare for this. I always brought lists so I wouldn’t forget anything. He referred me for a small bowel MRI and a Colonoscopy. The colonoscopy prep was worse than the procedure: strict diet, practically starved for a few days beforehand, instructed to drink two litres of moviprep (which is vile, by the way, very salty), with a 6am wake up to drink the second litre. We drove to the hospital, the staff let my mum stay with me longer than most patients are allowed because I’d not had any procedures since I was four and was extremely anxious. I watched the screen showing inside my colon, probably not the most normal reaction. My MRI was a pretty different story. I wasn’t allowed to drink anything (which is worse than not eating for me), on a strict diet too, and I had to drink a litre of plastic tasting liquid over the course of an hour and not pee. The liquid is to expand your insides so they can get the best view, then pump buscopan and dye into an IV line. I waited three months before I heard anything, even though I chased them up every few weeks.
I was diagnosed on June 4th 2019. The initial plan: start mercaptopurine. I’d had no preparation for this moment, I had no idea what I was supposed to expect. Rather than talking me through anything, they printed off some Crohn’s and Colitis UK website pages, and handed it over with my prescription and blood forms. I wasn’t told anything that day, which led to more issues down the line.
6 weeks later, I was in my local A&E. My blood inflammation had shot up over 250 (‘normal’ is under 10). I screamed and cried in agony. I had massive black and blue welts all over my lower legs. I’d been dumped in a chair for seven hours into the night and as we threatened to leave, they put me in a bed. My GP thought I had Erythema Nodosum, a rare skin condition… which isn’t so rare with Crohn’s. It affects one in seven people with Crohn’s and no one had thought to even mention it to me. One in seven! This was concluded to be a very intense IBD flare and I was put on steroids for the second time that year.
I was starting to get to grips with what was happening, piecing together phrases and language used in letters between my doctors. I have one of the common types of Crohn’s which develops in the ileum (the last part of the small intestine), sometimes called terminal ileal Crohn’s (which sounds scary doesnt it? Terminal… it just means ‘the end’ and also just means ‘incurable,’ which is true here too) because it affects the end of the ileum. Having Crohn’s is a bitch as a dyslexic, everything is spelled complexly and very similarly. Sigh. Crohn’s affects one person in every 650 people in the UK, which is shocking right? Why don’t people know more about it? Because it’s all about poop.
A few months later I had a perianal abscess (peri meaning near…). Abscesses are collections of pus that can become swollen and painful. They either burst by themselves or need surgery. It is rare for medication to work once it has become an abscess. I had to get surgery to drain mine after two unsuccessful courses of antibiotics and it’s now considered a fistula. Abscesses and fistulae can appear anywhere in the body, but Perianal Crohn’s is all about the ‘back passage’. It includes symptoms such as fissures (tears/splits in the lining of the anal canal or anus and can regularly re-tear causing bleeding and pain during bowel movements), skin tags (often misdiagnosed as piles/haemorrhoids, it wasn’t until my colonoscopy that it was confirmed I had a skin tag. I’d been through nasty medications for piles because I’d been misdiagnosed again), you can also have haemorrhoids. Once the abscess was drained, it was a long and painful recovery process. I’d not been informed that my abscess was now a fistula (narrow tunnels between one area and another).
For both Erythema Nodosum and my perianal abscess, I had no idea what was happening to my body. I’d just been given a website and a stack of booklets that didn’t make much sense and often made you catastrophise. I still hadn’t met a consultant by January 2020 and my mum was having to look at my butt everyday from November to March. My IBD team had ghosted me and weren’t returning my emails or phone calls, I’d not yet found my online community… I was alone. I felt so depressed and hopeless.
Crohn’s, and other gut related illnesses, still have a heavy taboo around them because no one talks about going to the toilet. I know a lot of people who have experienced bleeding from their rectum or when peeing who didn’t seek help right away. This is precious time to catch chronic conditions before they develop into something much harder to treat. The above was a brief overview of my story. One of the best things that I could have done sooner, was find community. I made friends online who had Crohn’s disease too. I got a therapist to deal with medical trauma I’d been facing since my diagnosis, she coincidentally has Crohn’s as well. Knowing you have to face this condition for the rest of your life, finding a support system is imperative.