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IBS: The acronym of doom

Before being diagnosed, I thought of IBS as indigestion or stomach ache and sadly I thought that it was people whinging about normal occasional stomach ache that everyone gets. I never said it aloud to anyone but regardless, I’m sorry. Wow! If only I had known those old work colleagues who mentioned IBS just before my eyes glazed over – I had no idea.

IBS sort of snuck up on me. I had just had my little girl when I noticed a pain just below my ribcage on the right. My daughter was only 3 days old so assuming it was birth related I ignored it. Three weeks later it was still there so I mentioned it to my GP, blood tests and tablets… it starts! Seven months after my initial doctors appointment, now on appointment 7, I was referred to a gastroenterologist. The tests that followed were, at best, horrendous!

A Gastroscopy, It didn’t sound too scary… that is until they tell you it’s a camera that goes down your throat into your stomach. It’s only small they said… wielding what looked like a hosepipe towards me. “Swallow, Swallow, Swallow – okay you can now relax” … relax – hahaha! Relaxing as your body goes into a ‘panic! the doctors are trying to kill me’ mode is not good!

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Once over they say “see it wasn’t so bad, was it?” How exactly was I meant to answer that. I think I smiled and nodded. The answer in my head was ‘no, it was about 5 million times worse than I imagined and there is no way you are getting within 6 feet of me again’. Just smile and nod, smile and nod.

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Definitely the worst of my tests but not the only one. MRI and CT’s where you have to drink radioactive cordial (yuk), stomach emptying studies where you eat radioactive scrambled egg and ultrasounds. I also resemble a pincushion and am sure there’s a vampire somewhere enjoying the contents of my veins. It would be fifteen months before I was finally diagnosed with IBS. My consultant told me IBS is the name they give to these sort of things when they don’t know what is wrong.

Just how deflating is that? You’ve had months of being prodded and poked, you are starting to understand how a lab rat feels and then some wise guy tells you he doesn’t know why so you have IBS.

So, I’m coming to terms with this acronym. Irritable bowel syndrome doesn’t really do it justice. If I had named it IBS would be called EPIC Excruciating Painful Innard Cramps. IBS makes it sound like some mild discomfort. Maybe that’s why I thought so little of it.

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I certainly don’t anymore. I am gutted! I have ‘trigger foods’ – these are foods that set off the IBS and make it worse. For me, its always there. The pain that I can pinpoint to a millimetre is still there, I am nauseous 80% of the day with certain smells sending my system into overdrive.

My trigger food items include Pizza, alcohol, bread, cheese, coffee, gravy – there is a long, long list. I’m vegetarian too, so cheese and bread made up a chunk of my diet – they still do, I just know I am going to pay for eating them. I can almost count the minutes after eating before it starts!

The NHS website says that IBS is thought to affect up to one in five people at some point in their life and it usually first develops when a person is between 20 and 30 years of age. Around twice as many women are affected as men. The condition is often life-long, although it may improve over several years. IBS is unpredictable and you may go for many months without any symptoms, then have a sudden flare-up. The condition can also be painful and debilitating, which can have a negative impact on your quality of life and emotional state. Many people with IBS will experience feelings of depression and anxiety, at some point.

If you know someone with IBS, think of them a little today, they are probably suffering. It’s not a bit of a stomach upset, if everyone who has it feels like I do – that’s a lot of people in a lot of pain. A lot of people who’ve been through tests galore to find out no one has any idea why they are in pain or what they can do to help.

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