Diarrhoea, bloating, constipation – it's never nice. Luckily for most of us, these issues are an every-now-and-again thing. An annoyance to be grumbled about, medicated and forgotten.
But what if your condition were chronic? What if your bowel troubles were so bad that they affected the rest of your wellbeing, happened on a regular basis and posed serious health risks for the future?
Sophie, 24, from London suffers from Crohn's disease, which is one of the two main forms of Inflammatory Bowel Disease (the other is called Colitis). She tells us that the best way she's heard a doctor describe it is like having "eczema of the inside".
Yeah. Sounds rough, right?
Essentially, Crohn's disease means that the digestive system will become inflamed – sometimes all the way from the mouth to the anus. When Sophie's disease flares up, she is left with mouth ulcers, fatigue, an upset stomach and abdominal pain. She can lose weight (IBD prevents her from being able to absorb the nutrients from food), she can develop fistulas or abscesses, which is where the digestive system creates an abnormal tract between different sections of the bowel or the bowel and skin. It can lead to problems with the joints, eyes and skin. "It really is more than just an upset stomach!" she says.
Crohn's is relatively rare. It's estimated that 157 people in every 100,000 in the UK suffer and the figures for Colitis are even lower (10/100,000), although it is clearly on the increase – especially among young people. Because of this, there are plenty of misconceptions about it that need clearing up. Like the fact that it's not Irritable Bowel Syndrome – something experienced by around 17% of the UK population.
Here, Sophie, who is also a member of Crohn’s & Colitis UK. shares some of the things that, while she appreciates, she kinda wishes people would just stop saying.
Oh, and shout-out to the guy who once called her condition an "extinguisher" and decided to stop seeing her. You can do one.
"You don't look ill"
"This is my key bugbear when it comes to living with IBD. Because I look fit and healthy and, luckily, am able on the whole to live my life how I want to live it, people presume I can’t possibly be ill!"
"My illness is invisible but just because it comes across as if I’m coping with the condition, it doesn’t mean I always am. To look at me, I am any other ‘normal’ 24-year-old, and act like one too, but if you looked inside of me, that would be a different story. Speaking to me today, there would be no sign that I’ve had two surgeries this year and spent time in hospital."
"Don't worry about the future"
"I appreciate that this comment is meant to be supportive and uplifting, but a huge chunk of having a chronic illness is related to coping with things mentally and coming to terms with the journey ahead."
"Upon diagnosis and during flare-ups it’s very difficult not to worry about things such as relationships (I once had a guy I dated call my condition an ‘extinguisher’ and that he didn’t want to continue seeing me), the possibility of having a stoma and the long-term side-effects of the medication I am on, among other things."
"Have you tried cutting out gluten?"
"It’s a common misconception that IBD is caused by a poor diet and poor food choices, however this isn’t the case. Although certain foods might exacerbate symptoms, leading to a flare-up, a poor diet does not lead to or trigger the disease. Also, IBD is certainly not the same as being gluten-intolerant and should not be confused with coeliac disease."
"The condition is very variable depending on the individual. Personally, I am sensitive to wheat, fried food and spicy food but other people’s symptoms may worsen if they consume caffeine, dairy and specific vegetables, for example. It’s important to remember that the disease is very personalised."
"I have IBS, so I know what you're going through"
"I do sympathise with people who have IBS, because our shared symptoms (upset stomach, frequent trips to the loo) can be really debilitating and mean that we need to plan our days more than other people."
"I prefer to sit by the toilet when travelling, for example, and sometimes dread long meetings in case I need to excuse myself to go to the toilet. However, the two conditions are very different and particularly for some people, who spend extensive periods in hospital and struggle to get out of bed, comparing IBD to IBS can come across as trivialising the condition."
"So, does it basically mean you always need the toilet?"
"It’s so important to remove the stereotypes and stigma associated with IBD. People automatically assume that having IBD means you are stuck to the toilet 24 hours a day."
"Yes, increased urgency and frequency to go is often a symptom for many people with IBD, but those living with the condition can experience other symptoms such as extreme pain and fatigue, which can be exhausting on a day-to-day basis."
"This can mean periods where I am not able to work due to symptoms or regular hospital appointments. The lack of understanding can also lead to feeling isolated, embarrassment and loneliness."
"I would never go to 'the toilet' in a public place or at my boyfriend's house"
"One of the most debilitating elements of IBD is the sudden and unexpected need to use the toilet – and this can happen anywhere: at work, on the train, on a first date. The condition doesn’t care about your plans!"
"There is still such a stigma about going for a poo in a public place, with some friends telling me they would never dream of going at their boyfriend’s house, but unfortunately for many people with IBD, they don’t have a choice in the matter."
"I’ve thankfully never been discriminated against when using a disabled toilet, but I know members of the Crohn’s and Colitis UK community have received tuts and glares."
"You don't look like a typical Crohn's sufferer"
"I had this said to me by the health practitioner who came to my house to help me administer one of the drugs I was put on shortly after diagnosis. Although she might have had good intentions, implying I looked healthy and well, this comment played right into the stereotype that to have IBD you must be really skinny. In turn, her observation made me think she was calling me overweight!"
"People with IBD come in all different shapes and sizes, and although weight loss can be a key symptom for many, it’s important to note, yet again, that each person with IBD has different experiences. I know some members of Crohn’s and Colitis UK who have received the reverse but equally as offensive comment of, ‘I wish I had Crohn’s so I could lose weight like you.’"
For more information and support please visitCrohn’s & Colitis UK or phone their information line 0300 222 5700. Take a look at their campaign for better signage on accessible toilet doors in UK supermarketshere.
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