Shaun's story
9th September 2021

After struggling with IBS for most of his life, writer Shaun Levin used lockdown not only to experiment and try new treatments for his IBS, but also write a book about his experience.

I have given my life to IBS, never questioned its power over me, considered it my duty to calm it, make sure it never erupted in public. At its command, I’ve kept it hidden, reined in my life, numbed spontaneity, stayed at home, not gone out, obeyed, honoured, and never questioned its control over my life.

Everything I have done, every choice I’ve made, every person loved, every place visited has been shaped and decided by my IBS. The hyperbole and truth of such statements jolts me every time I read them. My world changed somewhere around 1985 when I was about 20 years old.

An incident of extreme food poisoning, (an apple eaten straight from a tree), triggered the onset. At the time, I was serving in the Israeli army during the country’s invasion of Lebanon, and the constant dread and nearness of death, added to that night of diarrhoea that weakened me to the point of immobility. No one else suffered the food poisoning, so I no longer think of that apple as the beginning of it all! There is never just one reason for IBS. Yet echoes of that long-ago expulsion from the Garden of Eden continue to ricochet.

Early on, I found the medication that enabled me to function in the world, even though, to this day, I can still count on one hand the times I’ve left the house before midday. Mornings are the worst. I’m a writer, so when people ask if I could be somewhere in the morning, I insist my mornings are my writing time. It sounds sacrosanct! This is not a lie, but it’s not the complete truth.

Having IBS has shaped my life, and because I can’t leave the house in the morning, I write in the morning. It’s a way of being productive and telling myself it’s a choice. If it wasn’t for IBS, I may never have become a writer.

The anti-spasmodic, Lomotil, helped, but never made my IBS entirely manageable. Lomotil took the edge off. It was the only medication that worked. Lomotil is no longer available in most parts of the world, and even in India, from where, until recently, I had regular supplies mailed to me, a prescription is now needed. My contact in Papua New Guinea says he can’t be the middleman anymore. The absurd lengths I’ve gone to source Lomotil, sadden and confound me. My man in PNG is only one example. Back in the 1990s when Lomotil was available in the UK, I had a GP in London who, when I asked him to up the number of Lomotil pills he prescribed me each month, as I was travelling to be with my father while he was dying, said I was “behaving like one of my heroin addicts.” His insensitivity propelled me to find another GP, a kind and involved doctor, but his words were also a prophecy.

I have found myself many times over the past 25 years behaving like a heroin addict. Then, when in 2020 the pandemic suggested not leaving the house was actually the healthy option, I decided to experiment. I was about to run out of Lomotil and needed to find a way to manage in the world, even if it’d have to be with great caution and anxiety. So, I bought a range of over-the[1]counter antispasmodics: mebeverine, loperamide, others I no longer remember. A lab rat in my own locked-down living room. I tried each one for three or four days.

Loperamide seemed to be the only one as effective as Lomotil, albeit as part of a cocktail with other supplements. For many years, I’d wanted to write a book about my life with IBS. My main motivation was to explain to those closest to me what it’s like to live with a condition that restricts the way I move in the world. To the innocent eye, I function. I run writing workshops, I travel, get invited to writer’s retreats, publish books, but underneath all that is something messier, embarrassing, diminishing.

Sophie Lee’s website IBS Tales has been a great comfort to me over the years, just as The IBS Network has been – a place to feel connected, not alone – so when I saw her Sophie’s Story, I bought a copy, mainly to see how someone else had put together a book about living with IBS.

On my hunt for an alternative to Lomotil, I wanted to try what she’d tried! So, I started taking a daily dose of calcium. Then I stumbled upon an article, or maybe it was in Sophie’s book, about Saccharomyces Boulardii, and somehow, all three together, made it possible to leave the house after ‘the morning rush’ was over. And I started writing my book.

A graphic novel seemed like the right form to do it in. I wanted to show what it was like to live with IBS. The strange paradox of IBS, and maybe IBS-D more than others, is that, for the one who has it, the condition is both very visible (privately) and hidden (publicly). I wanted to bring that complexity to the page. And I wanted to dream about being free of IBS, to believe that if I wrote about it, I’d somehow purge it from my system, even if it is the main reason, I am who I am today.

I want to – and I think I do, as I write this and as I work on the book – feel like I have some control over a condition that has controlled my life for almost forty years.

Shaun Levin is the author of Seven Sweet Things and Snapshots of The Boy, amongst other books.

You can see more about his IBS graphic novel, Why I Don’t Visit You, at patreon.com/shaunlevin