At the end of December, 2018, I woke up bloated and in pain.
I desperately needed to go the toilet, but despite being just a few steps away from my bathroom, I couldn’t do it.
Next to me, in bed, was my date. We had spent a first lovely night together, and because of the layout of my small flat, a toilet visit meant he would hear everything.
I stayed in pain for hours, smiling through gritted teeth, and was so relieved when he finally left and I could run straight for the loo.
A bathroom visit for me isn’t like it is for most people.
In January 2015, I had emergency surgery to remove my large intestine, and woke up with a stoma bag – I had been living with undiagnosed ulcerative colitis.
Ulcerative colitis is a form of inflammatory bowel disease, which causes inflammation of the large bowel and rectum. Mine was so severely diseased that it perforated.
The surgeons had removed the entire colon, leaving the small intestine, of which they brought the end out through an incision in my abdomen – so that the waste could come out into the ostomy bag.
Ten months later, I had a reversal surgery (where my small intestine was attached to my rectum so I could go to the toilet ‘normally’ again) but what I’m living with is not normal.
I now have chronic diarrhoea and use the toilet a minimum of seven times a day. I experience frequent flare-ups and rectal bleeding. The reversal was supposed to give me back some normality – but unfortunately, it hasn’t worked out that way, and it has been problematic ever since, with medical professionals still trying to find out what’s gone wrong five years later.
If I need to use the toilet it’s usually urgent, and it can be loud. That’s the worst part.
It’s severely affected my mental health and my confidence. It has made me extremely anxious, especially around using public toilets.
I’ve felt sad, angry, I’ve hated the world, but I’ve come to accept that this is my reality, and I can’t do anything about it.
At the time of my initial surgery, I had been with a boyfriend for several years and the stoma bag and subsequent bowel movements were never an issue.
I already felt comfortable with him and we went through it all together.
But when we split up, I was devastated – not just about us, but I worried that my condition and its symptoms meant I would never have a relationship again.
In my head, my bowel disease and post-surgery issues would be a deal-breaker for any future partners, and once they found out, they would be repulsed.
I imagined going on dates and feeling embarrassed about my disability. My worst nightmare was a new love interest hearing me go to the toilet.
After a few months of being single and trying to regain my independence, I joined a dating app.
Still not wanting to face up to my bowel disease, I didn’t think I would meet anyone, but it would be nice to talk, flirt and feel like I was wanted again, albeit online.
After a few days of swiping, I matched with someone. Short messages soon turned into nightly phone calls.
One night, I built up the courage to tell him about my bowel surgery and that I had to use the toilet more than a normal person. He didn’t get it, replying: ‘It’s cool, I pee all the time!’.
I felt too embarrassed to go into any more detail, so I just left the conversation there.
After a month of talking, we organised our first date and I came up with a plan: to not eat all day, and take Imodium to constipate myself.
I was determined to get through the night without using the toilet.
I was so nervous waiting for him to arrive. I was so scared that I would need to use the loo. That he would find out what I was hiding.
But he didn’t.
I was uncomfortable throughout the night, and I felt on edge. He suggested we ordered a takeaway, but I was too scared to eat just in case I’d need to rush to the loo. I watched him eat his kebab instead.
This unhealthy habit soon became a regular thing whenever my boyfriend was around.
Though after a few dates I had told him I have inflammatory bowel disease – mainly because he’d seen the scars on my stomach from the operation – I hadn’t told him the extent of it.
He didn’t know that I was often sitting with him panicking about needing the toilet.
I was scared to tell him because I had become attached and I didn’t want him to leave. I was worried he would find me disgusting and unattractive. I just wanted to keep up this ‘perfect girl’ facade.
But an unfortunate night, three months into our relationship, made me realise I had taken my unhealthy routine too far.
My boyfriend and I were cuddled on the sofa together, as I started experiencing abdominal pain so severe that he ended up taking me to the hospital.
I had taken 30 tablets in the space of 24 hours and it had blocked my bowel.
For some reason, he was invited into the examination room, and the doctor started explaining the issues that the excessive use of this medication could cause with my illness. He told me about severe bowel blockages that can require surgery.
The doctor also asked questions about my stool, such as types and frequency, and clearly didn’t catch on to my desperate eye contact begging him to please shut up.
My boyfriend was pretty taken aback by this new information. He stood there wide-eyed, occasionally glancing at me as if to say: ‘Why didn’t you tell me!’
In the space of a few hours, I had gone from being the girl who never pooped to being the girl with all the bowel problems.
I thought this would be the end for us, and worried that he no longer found me attractive and wouldn’t want me.
I opened up about everything in the car on the way back home. I was prepared for him to drop me off and then to escape back to his house and never see me again.
But I needn’t have worried.
The only thing he was baffled about was why I hadn’t told him about my illness and why I had been putting myself through so much pain instead of being honest.
He also felt bad that I’d been struggling so much, for fear that he would leave me.
He wasn’t angry or upset, he was just concerned about me. He wanted me to know that he was there for me and that my illness was not an issue for him – and that it would never affect the way he feels about me.
I felt relieved, but also angry and frustrated with myself.
In bed that night, as my boyfriend cuddled me to sleep, I went over that night’s events – and most nights that we’d spent together, and I finally understood that the problem wasn’t with him – it was my issue. I had convinced myself that I would be rejected for living with a chronic illness and the shame that entailed.
From that moment on, I decided to try to let these worries go, and to allow myself to be loved for me and not for a version of myself that I thought someone would want.
It took time but I realised that if someone didn’t want to be with me because of my illness, they weren’t worth my time.
I remember the first time I used the toilet with him in the house – I still felt embarrassed, but I just had to get on with it.
And he didn’t care at all, of course.
Two years and a baby later, those first few months of hiding my illness are a distant memory.
I still put on music sometimes to drown out the sound of some of my louder toilet visits, but it just makes him laugh.
I do look back and feel sad that I went to such extremes just because I was scared of rejection.
But I’m now happy, loved-up and no longer embarrassed about my bowel disease.
And I haven’t so much as looked at a packet of Imodium since.
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