Image by Nina Cosford
I started writing this on Twitter whilst sat on the toilet but realised I’m going to need more than 280 characters. I have a chronic illness called Ulcerative Colitis. I’ve spoken about it before online and I made this video about it 6 months ago. You can watch that to find out more about it in general but this is what’s happened recently.
On 31st October I got the IUS (mirena coil) inserted. Shortly afterwards I started to get intermittent cramps in my stomach. They would last for about 30 seconds and felt a bit like trapped wind. They would happen several times a day and I assumed it was my body getting used to the coil.
But it didn’t stop and the pains got worse. It took a few weeks to realise that maybe these pains weren’t in my uterus but in my intestine. Period cramps for me are a constant dull ache but these pains would come and go like contractions. And this was a pain I was all too familiar with: hello ulcerative colitis! But it was just the pains, no other symptoms.
As someone with a chronic illness I take regular medication, have outpatients appointments at the hospital every 6 months and I have a direct line of contact with a specialist nurse. So I called them up and told them about my symptoms. I was asked to come in to chat and do a stool sample and blood test but I was going to New York so had to wait another week until I was back.
So on Tuesday 12th December I went to hospital with a sample of my shit in a bag, handed it in and did a blood test. Because I didn’t have any of the other symptoms (urgency to go to the toilet, diarrhoea, blood, mucus etc.) the nurse wasn’t convinced. I’ve not had a flare up for 10 years, I’ve been so healthy! She suggested it could be the coil and if the tests don’t show up any inflammation then I should go back to the family planning clinic.
Naturally, the first thing I did when I got home was tell my boyfriend we have to use condoms until we know what’s up and I took a pregnancy test. Not pregnant. Phew.
2 days later I speak to my nurse and turns out… yes, my disease is active. So now what? I’ve been prescribed Azathiaprine (an immunosuppressant that I was on for 9 years but came off in 2016) and enemas. Fun. The Azathiaprine won’t do anything for 3 months and the enema is to soothe the pain.
Next week I’m going in for a mini colonoscopy. I didn’t quite catch the name of it but basically I don’t need to do the whole emptying your bowel beforehand thing. And I won’t need anaesthetic. Thank fuck because I’m seeing Hamilton with my family that evening. Tickets I bought about a year ago!
Once they’ve had a look inside me to get a better idea of how serious it is the doctors create a plan.
The rest is unpredictable. This disease is unpredictable. And that’s what terrifies me. Right now the pains are horrendous. I’m still mostly functioning but when a pain comes on I can’t breath, I can’t speak, I can’t think. It’s difficult when you’re interacting with people who don’t know what’s going on. Other symptoms have also started to develop.
I’m scared of medication not working and then trying a million different things whilst I get more and more ill. I don’t want to be hospitalised but that’s what happened last time. My hospital appointment was the same day I had a meeting with my manager about 2018 plans and now I’m terrified I won’t be able to do any of them if I get too sick.
The last time I had to deal with this I was 15 years old and my parents were there to hold my hand through everything. Now they’re over 200 miles away and I have to figure this literal shit out for myself.
There’s no message here. Just an update. And a warning that things might change over the next few weeks/months. But fingers crossed I’m fine.
Thanks for reading. I hope you’re healthy.
The image by Nina Cosford is part of her “Out of Order” series made for WaterAid to raise awareness of the fact that 1 in 3 women in the world don’t have access to a safe or clean toilet. Obviously, as a woman but also as someone with ulcerative colitis I am extremely lucky to always have access to clean and safe toilets. Please consider donating to WaterAid here. From now until 31st January 2018 the government will double every £1 donated as part of the charity’s Untapped Appeal. Thank you.