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Living With Irritable Bowel Syndrome

Writing by Toni Stanger // Illustration by Sofie Birkin // I tried everything. I tried all the elimination diets, IBS medications, probiotics, psychological therapies, and even yoga. I kept a food and symptom diary for a dietitian, and I ate three small but regular meals a day.

Writing by Toni Stanger // Illustration by Sofie Birkin

IBS could easily mean irresponsible butt shits, but instead it means irritable bowel syndrome. I’m sure you’ve heard of it. You might even be among the 10-15% of the population who has it. There’s this idea that it’s “just IBS” – this small and non-impacting condition.  It’s an idea that I, too, once believed, but it’s actually a huge misconception. The main symptoms of irritable bowel syndrome are stomach pain and cramps, bloating and gas, and diarrhoea and/or constipation. It doesn’t stop there, though, which is why many of us naturally just assume we’re dying. IBS can cause nausea, malaise, hot flashes, loss of appetite and can make you feel generally unwell. It can also cause mental health problems such as anxiety and depression.

When at my worst, uncomfortable bowel movements were causing me the most distress. They were triggering panic attacks so severe that I was refusing to eat most days. I thought if I didn’t eat, I wouldn’t have uncomfortable trips to the toilet, therefore reducing the risk of a panic attack – easy. Well, as it would happen, you kind of need to eat in order to live, so I had to eventually start eating properly again. However, my debilitating anxiety and IBS symptoms didn’t improve, which meant feeling generally unwell overall. I ended up developing full-blown health anxiety (often dismissed as hypochondria), which I had formally diagnosed by a psychiatrist. I just couldn’t – and didn’t – believe that what I was experiencing was caused by something as seemingly small as irritable bowel syndrome; especially when Colitis – an inflammatory bowel disease – runs on my mother’s side of the family.

I tried everything. I tried all the elimination diets, IBS medications, probiotics, psychological therapies, and even yoga. I kept a food and symptom diary for a dietitian, and I ate three small but regular meals a day (plus three small snacks). I had the blood tests, and provided stool and urine samples. I had a colonoscopy to check for the scary things – it turns out that I’m not dying after all. It’s just that my digestive system was carved by the devil himself.

Coming to terms with having irritable bowel syndrome has been incredibly hard for me, purely because it’s difficult to treat. Doctors have reiterated this to me numerous times, explaining how they can treat inflammatory bowel disease and even most cancers these days, but IBS is something difficult. It’s a functional disorder which means no structural abnormalities will show up via endoscopy, x-ray or blood test. It’s thought that the usual digestive process is altered in some way, causing food to move either too quickly or too slowly through the digestive system. People – such as myself – may also have an increased sensitivity to what’s happening in their gut, as nerves in your digestive system relay signals to your brain to let you know when you’re hungry and when you need to use the toilet. This also means IBS can be easily triggered by stress and anxiety, especially considering how closely interconnected the nervous system and digestive system are. It’s very common that people with IBS experience symptoms of anxiety, and it’s often not clear which one comes first. It’s a constant and vicious cycle of hell which often and understandably leads to depression.  They do say around 95% of serotonin – the “happy” chemical – is actually produced in the gut, so it’s no wonder an upset digestive system can cause mental health problems.

I often get caught up in the never-ending debate of which comes first: my anxiety or my IBS? Am I the chicken, or am I the egg? I’ve spent countless hours arguing with myself over this question, and I’ve concluded it’s one with a complex answer. I’ve considered the fact that maybe my irritable bowel syndrome is “all in my head”, and that’s why my symptoms are so bad. I chastised myself for not being able to control my IBS-related anxiety, but I soon realised that I struggle to control it when it’s a direct response to an unpleasant physical sensation that I have no control over. I could never understand why my IBS symptoms cause me to experience anxiety and panic so severe that I find myself feeling frequently suicidal. I feel daft telling people that sometimes, especially when especially when I see so many other people with IBS coping fine/well, so why aren’t I?? I still feel as though I should be able to control my anxiety, but I can’t – so maybe it’s not all in my head like I first suspected. It remains a constant cycle – there are times when I’ve noticed the anxiety first, but for the most part it seems to happen mostly when I’m in physical discomfort.

I’m expected to just learn to live with my irritable bowel syndrome, and find ways to cope with it. But I don’t want to because it’s horrific trying to cope with both mental and physical distress. This is why accepting IBS as a diagnosis is difficult – I don’t want to learn to cope, I want it to just go away. Realistically, I know that IBS doesn’t just magically disappear, and so instead I’m looking for anything to reduce and ease my symptoms. It’s hard trying to keep my mental health from spiralling because of the physical discomfort I experience every single day. How does anyone “learn to cope” with that? I often feel that’s too much to ask; I want a break. The only time my anxiety eases is when the physical stuff does, but having IBS means it’s rare that I find moments where my bowels aren’t in some form of distress. I often criticise myself for not being able to cope as well as I think I should, but it’s going to take some time adjusting to near constant pain and discomfort. I’m told it gets better when you fully accept that this is your life, but it’s hard when it feels like it’s never going to end.

My IBS got severe in November 2016, and I still feel unwell and cannot eat anything without feeling anxious about what’s to come. Many people feel as though their doctors are “fobbing them off” because surely it’s got to be something more serious. I thought the same at first, but after having every test possible I realised that irritable bowel syndrome is actually just that bad. Functional disorders are awful to live with. I’m told there’s no magic cure waiting for me, but I’m still searching for it.

When it comes to treatment, I haven’t exhausted absolutely everything just yet. I have my first follow up at the hospital since my colonoscopy soon, so we’ll see what else the doctor suggests. I say “what else”, but he’s actually yet to suggest a single thing. He didn’t even suggest the colonoscopy – that was me, in a bid to ease my health anxiety (which worked, by the way). The next things on my list are hypnotherapy and Symprove (a probiotic specifically designed to help people with IBS), though I can’t exactly afford either. I can’t work at the moment because irritable bowel syndrome is still heavily impacting my daily life, and my mental health is in the toilet too, swirling around with my IBS like it’s all a big game. Two friends have kindly bought me my first two bottles of Symprove and there’s also something called biofeedback training, so I haven’t given up all hope just yet.

If you’re struggling immensely, like me, I just want you to know you’re not crazy and you’re not dying. It’s also not “all in your head” as many people will tell you– it’s very real and the next time someone tells you “it’s just IBS”, you can tell them to just fuck off.

Toni Stanger

Toni Stanger is a small, cold adult from England. She is a Film and Screenwriting graduate with a passion for cats, cinema and wine. She occasionally writes about film on her blog House of Psychotic Women and practically lives on Letterboxd.

Sofie Birkin

Sofie Birkin is a British Illustrator currently living in Denver, Colorado with her wife and tragic labrador. By day she’s a professional doodler for a marketing agency, and by night she likes drawing powerful women in gaudy colors. When she’s not glued to her tablet, she’s usually obsessing over midcentury jello, ambient lighting, and Parisian lesbians of the Belle Epoque. You can find Sofie on Instagram @sofiebirkinillustration

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