Alexandra’s Story – IBS

Tell us a little bit about you

I’m Alexandra, 22 years old and born and bred in South West London. I work as a jeweller full-time, and this is also my biggest hobby. I love jewellery and fashion. One of my favourite pass times is wandering around central London for hours, trying my best not to rinse my bank account!

Can you remember when your IBS symptoms began?

I never had any stomach issues until I went to university. Every morning I’d wake with diarrhoea symptoms, and I’d also experience nausea, cramping and trapped wind. I was quite anxious, which may have caused some of my symptoms. I saw a gastroenterologist who diagnosed me with short-term Irritable Bowel Syndrome (IBS).

I’d spend my days running home from lectures with diarrhoea. It affected me so much that I had to drop-out of university. My gastroenterologist suspected that my symptoms may improve as university may have contributed to my stress and anxiety.

My symptoms continued after university, and taking loperamide would get me through day to day. After ruling out a number of other digestive diseases, my gastroenterologist introduced me to the low FODMAP diet for IBS, and I felt like a whole new person. For months my symptoms had almost disappeared! I’d experience diarrhoea maybe once every few months, it was good to have a relief from these symptoms.

How are you recently?

Unfortunately, there was a period more recently where I struggled with severe diarrhoea for around eight months, even though I hadn’t come off the FODMAP diet. My diarrhoea became more frequent, around three times every day and it would make me very anxious. I couldn’t leave the house. I’d panic about getting diarrhoea, and inevitably, then get diarrhoea.

For this period, I was practically house bound. Living in London, I relied on public transport to get to work and my biggest worry was having an accident on the train.

The last few weeks have been looking up a little. I’ve been leaving the house every week, and I’ve purchased a car to get me to and from work, which has helped with the anxieties surrounding having an accident in public.

How does IBS and diarrhoea affect you?

During my worse weeks, I wear adult diapers and keep a potty in my car. At 22 years old, having an accident in public is a genuine worry for me. I want people to know that IBS is more than ‘just a poorly stomach’, it’s a chronic digestive condition.

It’s really unhelpful when people say things like ‘it could be worse!’ I’m allowed to feel how I’m feeling, and belittling that doesn’t help me. I’m allowed to mourn the fact that my body isn’t the same. I’m allowed to grieve the old me.

Due to my age and how I look, I can see people judge me I use disabled toilets. Having a hidden disability badge on me has helped.

What do you find helps you?

Hot water bottles are my best friend when I’m struggling. I’ll also take loperamide which helps to slow down my bowels. I also drink peppermint tea throughout the day, rest where I can, and love a comforting hot shower. Though I did used to go to the gym and do more vigorous exercise, I find low-intensity walking more helpful for me.

What do you wish you were told sooner about diarrhoea or IBS?

I wish I talked about IBS more openly, sooner. I’m recently single and newly dating. The thought of telling someone I was seeing about my bowels mortified me. But at the same time I wanted to be open and honest. I found the courage, and every single person I’ve told has been so lovely and understanding about it. People were kinder than I gave them credit for – I quickly realised that I was the one who’d built it up in my head. The people that are right for you will be understanding of your condition. Plus, it’s a great way of filtering out all of the people who aren’t worth your time!

What advice would you give to others like you?

Don’t feel embarrassed, and don’t keep everything locked-up inside – it never helps. I’ve been pushing myself to accept myself and my symptoms, and to stop hiding my struggle. This has really helped, and I can talk openly about it now! Please know that it’s okay to have IBS. It’s also okay if it’s severe and you’re young. You’re not alone. There are other women your age that are struggling with IBS too, and that’s why I’m sharing my story today.