While I’ve got a very good medical team now, it hasn’t been an easy ride to find the care I have at the moment.
Going to the doctor is terrifying. You sit in front of a stranger and talk about things you wouldn’t tell another living soul. For those with IBD, you’ll understand the fear when a doctor says, “oh just lie on the bed and let’s take a look.” Words usually followed by your doctor getting too familiar with your behind…
I started seeing symptoms in June of 2016. It started with bloating and a general sense that something wasn’t right, but there wasn’t anything majorly worrying in the first couple months. However, it didn’t take long until I started seeing blood in my stool. The first doctor I turned to was Dr. Google. Something I very much regret now. It scared the living daylights out of me and I decided if I didn’t look, it wasn’t there. I left it for a month until I plucked up the courage to see a real doctor. I was 19 and on my own; sat in the waiting room, my hands were getting sweatier and my heart was going faster. Speaking to a proper doctor made my symptoms real, something I wasn’t ready for.
She was stern, unmoving and intimidating. I told her about the bleeding, bloating and tiredness. Her face set in stone, she said: “Im going to refer you to a cancer unit. I think it’s bowel cancer.” There wasn’t a shred of emotion in her voice and no mention of a test. I went home and told my mum, who got onto our private healthcare and managed to book me in for a colonoscopy three weeks later.
August 2016 and another doctor.
Dwarfed behind his desk, we sat in silence for what felt like hours – although it was only about 3 minutes – as he scanned my notes. I just wanted the chair to swallow me up and transport me somewhere else; anywhere else but here. He did all the talking. He told me he was pretty sure it wasn’t cancer but wanted to do a colonoscopy. The only word I could find was “OK” as he handed me the colonoscopy prep and said, “see you next week!”
After the colonoscopy he said: “I couldn’t find anything wrong with you but I’ll give you some enemas for the time being and we will do another colonoscopy in a months time to see if we can find something.” I felt dirty. Broken. Tired. Hungry. I wanted this nightmare to be over. A month ago, a doctor thought I had cancer and today I’m fine?
I held onto “we couldn’t find anything wrong with you” and went back to university. Two months into my second year I was bed bound. I couldn’t walk, couldn’t eat and couldn’t sleep. I was going to the toilet 20+ times a day, seeing more blood every time and still trying to pass off that I was fine. My dad had enough and dragged me to A&E, kicking and screaming. After five hours, the A&E doctor handed me a prescription for iron tablets and told me to go home. “Oh it’s probably an iron deficiency,” he said, “you’ll be fine with these” he said. My resting heart rate was 156bpm.
Another month passed and I finally saw a gastroenterologist. He had a kind and caring look about him, like he wanted to absorb his patients pain. He took one look at me and ordered an X-ray, ultrasound, a full blood test and fecal calprotectin test (to check the inflammation in my poo). Two weeks later he diagnosed with severe Ulcerative Colitis.
He looked after me for the whole of my treatment, but even under his care things weren’t stellar. I had a sigmoidoscopy (mini-colonoscopy) once a month for just over a year without sedation. I asked for pain relief once and he all but laughed at me, saying, “oh that’s not what we do here. It won’t take long but I’ll find a smaller scope.” I have now come to realise this is not OK. When a doctor does a sigmoidoscopy, they get you to lie on your left side so they can shove the camera where ‘the sun-don’t-shine…’ All through my treatment and for a long time after my surgery, I couldn’t lie on my left side to sleep. I had nightmares for a long time because it reminded me of the pain of the sigmoidoscopy. I still regret to this day not fighting hard enough for that sedation because of the significant trauma I experienced as a result of those scopes.
Then I was referred to my current surgeon (below) and gastroenterologist at St Marks hospital. Finally, I’m under the care of an incredible medical team. My surgeon is like a giant teddy bear – who makes me feel safe and secure. And as for my GI, well she’s a force of nature! She just ‘gets things done’ and done well. She’s the only GI I’ve had, where I feel comfortable to talk about my bowels. She’s frank, honest and knows what she’s talking about. We also have a laugh and she loves to hear about how I’m getting on in life outside the hospital. I couldn’t ask for better care.
It’s taken me nearly four years to have a medical team I trust and that is so important to management of a condition and/or recovery from surgery. Chronic illness is scary enough as it is and your doctors should be on your side every step of the way. Not everyone has a journey like mine, however armed with what I know now, if you’re not happy or you don’t trust your medical team, you’re entitled to find one you do. I wish I’d had the guts to say something to the doctors that didn’t treat me right.
At the end of the day: Your body, your rules!