Sofia’s Story – IBS
Sofia has had IBS for a number of years, which seemed to worsen after a bout of gastroenteritis (food poisoning).
Tell us a little bit about yourself
I’m Sofia, I’m a mum of 2 little girls and I’m trained as a teacher. I had the fantastic opportunity to teach in Dubai for a couple of years too. However, when I was out there, I really missed UK chocolate, the Dubai chocolate just didn’t taste the same!
When did your symptoms first begin?
I first noticed symptoms in my mid to late 20s. Every now and again I’d have an ice cream and I’d have to run to the toilet. This happened for a while, where every now and a then I would need to go quite urgently.
What was your journey to diagnosis?
Throughout my life I’d have various tests and told it was “just Irritable Bowel Syndrome”. Last year my symptoms began to get really bad. I went out for dinner with my daughter and I was extremely bloated and then started with diarrhoea. I ended up in A&E because of the amount of pain I was in. I actually went to A&E about 3 times in one week, and one trip I was in there for 18 hours! Unfortunately, I was just discharged and told to take over the counter abdominal pain medication. I was promised a colonoscopy though.
Sadly, as covid cases rose again, it delayed the colonoscopy. After another trip to A&E, the doctor told me I had food poisoning and gave me antibiotics. Unfortunately, this still didn’t help. In the end I decided to go private.
After going private, the doctor told me I had developed post-infectious IBS after a bout of gastroenteritis. I was disappointed to hear that these symptoms can last for up to 6 months. The private hospital decided they did want me to have another colonoscopy to rule out Inflammatory Bowel Disease (my dad has Crohn’s disease) still. The test results came back negative for IBD and I was sent on my way. I was told I would see a dietitian soon, but I’m yet to hear back.
How does IBS affect your daily life?
I spent my 40th birthday, Christmas and anniversaries all at home. My biggest anxiety is that I’ll be out and have an accident in public. I take anti-diarrhoea medication to help with this fear but this makes me really bloated and uncomfortable.
Before I go out anywhere my anxiety always kicks in which then sets off my IBS. I just feel like I can’t go out. People tell me not to stress and relax, that it’s just a ‘tummy ache’ but I feel so unheard by them.
Sometimes my IBS is so bad that my parents have to look after my 2 little girls, all I want to do is to just be able to take them to the park without this worry.
I see all sorts of ‘Instagram gurus’ claiming to ‘cure my IBS’. When I was at my lowest I would have tried anything to get rid of this feeling, and it was so hard not to press the ‘pay now button.’ But they can’t help and I know that now.
What is your experience of other people’s attitudes towards your condition?
My personal experience is a lack of understanding and compassion. I find a lot of the time people think I’m just being lazy and they fixate on the word ‘syndrome’. In comparison my dad has Crohn’s disease. I think because people hear the word ‘disease’ and he comes out of hospital with an official treatment plan, whereas mine is a ‘syndrome’ with no treatment. People have more understanding when he has a flare up. To them it’s an official diagnosis, when really me and my dad have very similar symptoms.
The worst part for me is the impact on my social life. I’m not confident going somewhere I don’t know or I don’t know where the closest toilet is. I find social occasions difficult because of this. For example, there is Ramadan coming up, on the evenings friends and family invite you round to their house. However for the last 2 years I haven’t gone, I’ve stayed at home. I find that when I’m fasting, and I start to eat again in the evening, this can trigger my symptoms and I might need to urgently rush to the toilet.
Normally, before I go out, I take anti-diarrhoea medication to help me. However, when I’m fasting I cannot take this, because I’m not eating for most of the day, so this makes Ramadan even harder for me.
Explaining this to friends and family can be really hard. I don’t have a broken leg to show why I can’t come to the party, I can’t prove to them I’ve been to the toilet 5 times that day and how exhausting it is. It’s really hard, when you just want to fit in.
Why do you feel the work Guts UK does is important?
I think Guts UK is so great at using real people in their stories. Sometimes you just need real people representing you. It gives you comfort and hope, that someone out there is going through the exact same thing as you. It’s relatable, real and raw.
Why have you chosen to share your story today?
I’m at a place now where I want to raise awareness. In my community the response to IBS is ‘oh it’s just a tummy ache.’ But it’s not it’s a debilitating condition.
When I was teaching in Dubai, I suffered from a mental breakdown, my mental health went from 100 to 0 rapidly. I developed really bad insomnia and was absolutely exhausted. I had to spend 6 weeks in a psychiatric ward. My therapist in Dubai recommended I start an Instagram page, just to get out what I was feeling. I find this really helps, when people in similar situations to myself say they can relate to what I’m going through. I hope by sharing my story I can do the same for others.
Guts UK is the charity for the digestive system. Our guts have been underfunded, undervalued and misunderstood for decades. We exist to change that by funding life-saving research, raising awareness of digestive conditions and providing expert information for patients.
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