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I have a chronic illness and it’s back

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.

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13 Comments

  1. Oh Hannah, what is happening to you right is my worst nightmare as someone who also suffers from a chronic illness but has been in remission for the better part of my 20s. Going into this as an adult is so different than as a child and I wish you all the best at this time. Hopefully the medication works and you find pain management that works for you.

  2. Dear Hannah, I wish you all the best. My sister has ulcerative colitis as well and is experiencing one of the worst flare-ups ever. Her medication has stopped working. Although she is in pain, she still goes to work and acts in a children’s Christmas play on weekends. She is a fighter who just gets on while not forgetting to smile and laugh. So are you. All the best.

  3. My brother has suffered from ulcerative colitis on and off for 5 years now and it all started after getting shoulder surgery.
    I hope you can find some relief, living with him I can imagine how uncomfortable you are. Wishing you a speedy recovery ❤

  4. Sorry to hear that Hannah, that must be so frustrating to have a sudden flareup after a decade without! I hope the Azathiaprine sorts it out for you, and you still enjoy Hamilton.

    (Quite healthy here thanks – that was a nice note to end on, particularly when you’re going through this!)

  5. Very sorry to hear it, Hannah. I hope the news after the next round of tests is positive, and it sucks that you have to be in pain again now. 🙁

  6. I was diagnosed around this time last year I I totally get not having parents around to figure everything out for you and how stressful and scary it is when your body stops functioning. also enemas suck.

  7. So sorry to hear this Hannah, my housemate has ulcerative colitis too and she was in a flare up for most of this year and I saw how hard it was on her. I hope your flare up is over soon and make sure you look after yourself! It’s okay to take a step back from things if you’ve over-committed because you couldn’t see this coming and no-one will mind, we just want you to be well xxx

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