I listened to a podcast of Jeremy Vines radio show on BBC radio 2, broadcast on Monday 20th May 2019. Part of the show was a discussion about IBS with a handful of sufferers calling in with their own IBS stories.

The first caller, a lady named Charlie, called in and described what day to day life was for her. It was incredibly difficult to listen to Charlie and how badly IBS has affected her life. I’ll come back to Charlie but for now lets back track a little to the beginning of the discussion.

Jeremy was joined by Dr Sarah Jarvis who is a GP and often appears on TV and radio as a medical adviser. It’s important to mention here that my experience with GP’s over the 10 years of suffering with IBS culminated into being told, ‘just live with it’ and my personal favourite ‘just take immodium’. My expectations are not high in the slightest! So when Dr Sarah instantly aired on the side of sympathy my ears were pricked.

Starting the segment off with statistics, Jeremy stated that 1 in 5 people will suffer IBS at some stage in their life adding that some have flare ups and some live with it daily.

Dr Sarah stated that she was very, very, very glad she doesn’t have it because it is a miserable condition. I’m liking Dr Sarah already as I’ve never heard a doctor have sympathy for what I live with on a daily basis.

To gather a general perception of what people think the condition entails, Jeremy gave his take on IBS as being something suffered by young stressed out women. Dr Sarah said he wasn’t entirely wrong but men suffer too continuing that just because it’s related to stress it doesn’t mean its not a real condition. Are you kidding me? That sentence also suggests that there’s a chance it isn’t a real condition! It feels very real to me and the millions of people who suffer. Sarah also added that IBS is thought to be caused by a mismatch between the messages in the gut preventing the different bits of the gut from coordinating correctly but nothing would show up on a scan as there wouldn’t be anything physical to see.

Responding to Jeremys statement of ‘we don’t know what causes it’, Dr Sarah said it may appear that way but there are lots of ideas on the causes and it’s more likely to be a number of them.

Dr Sarah is clearly knowledgable on the subject of IBS and coming back to my earlier statement about GPS’s she knows a hell of a lot more than any GP I’ve seen in the past. She mentions food intolerance, probiotics and FODMAP’s which is music to my ears, all the things I keep telling sufferers are the answer to recovery. I get the impression that she knows GPs aren’t sympathetic to IBS suffers by apologising on behalf of her fellow doctors if patients have ever been told, ‘it’s only IBS’.

Cue the first caller Charlie. A 45 year old woman, around my age too. Her story was incredibly difficult to listen to as I mentioned earlier. Charlie has been suffering with IBS for 4 years and described it as ‘a living hell’. Despite enduring every test available on the NHS to look for a cause she has been discharged by her hospital consultant with a diagnosis of IBS. The question here is, why is the IBS diagnosis the end? Surely that should be the start of her consultant led recovery! Imagine being sent away to your living hell with no hope of recovery.

How does charlie cope with her day to day life?

• She takes 4 Immodium tablets per day which I suspect help to calm things down but not solve the problem.
• She doesn’t have a partner because as she said, it’s an embarrassing way to live. 16 diarrhoea fuelled trips to the toilet daily is both embarrassing and exhausting.
• She’s barely clinging on to her job as IBS is set to rob her of that too.
• Her mental wellbeing is suffering to point of being suicidal.
• She’s begged to be referred to a dietician but has been refused.
• She now has a BMI of 17 due to not being able to keep any food in which in all probability will continue to decline.

Taking all of that into consideration, how on earth has her hospital consultant told her theres nothing more that can be done? And they say IBS isn’t life threatening!

I think this is where my admiration for Dr Sarah ends. She is advising the caller to ask to be referred to a dietitian as if they are available to everyone and assuming that’s what normally happens. It may even be a perfectly normal thing to do at her GP practice in London but where I live and presumably where Charlie lives this simply isn’t that case.

I, like Charlie, was suicidal due to IBS ruining my life beyond recognition. In 10 years of suffering IBS I was never once asked about what I eat. No suggestions were ever made to me regarding diet. There was never a mention of a dietician. In fact, 50% of the tests I’ve had during diagnosis were suggested by myself following research I’d carried out. It took 10 years to get an endoscopy carried out as not one doctor thought it relevant to take a look inside my gut. I demanded to be referred to a dietician and eventually my GP casually said ‘We have a dietician at the surgery every week, why don’t you make an appointment!’ What!

By the time I saw a dietitian, I’d been doing a lot of research into the Low FODMAP diet. It all looked very complicated so I needed help to get started. I entered the room and the dietician looked me up and down with a puzzled look on his face. He introduced himself and asked what he could do for me. I said I suffered with IBS and needed help with the Low FODMAP diet. He said ‘the what diet?’ I repeated again the Low FODMAP Diet. He said he’d never heard of it and asked me to explain it to him. He went on to explain that he was confused as to why I’d been sent to see him as he helped people to lose weight and live a healthier lifestyle. He could see I didn’t fit into either of those categories. He apologised for not being able to help me but wished me luck.

I then asked to be referred back to my hospital consultant and the GP told me that I’d been discharged so it wasn’t possible. Eventually via much discussion I was granted an appointment with my consultant. He said I should do the Low FODMAP Diet but there weren’t any Low FODMAP trained dieticians available to me. He couldn’t even print off the resources I needed to get started because the hospital didn’t allow it, instead telling me to write down ‘Stanford FODMAP PDF’ and google it when I get home.

The point I’m trying to make is that help isn’t out there for everyone. I’m not sure if it depends on whether your GP has an interest in IBS matters or your NHS Trust Region has resources but there is no constancy throughout the country. Dr Sarah was pleading with poor Charlie to get help but there just isn’t any!

I’m desperate to speak to the distressed caller. I want to tell her that I’ve been where she is right now. I was told to ‘just take immodium’ or ‘just live with it’ I’ve tried to pass on my contact details through the Jeremy Vine show to no avail. She needs to know that the Low FODMAP Diet does work if done correctly and given enough time.

I’m proof that you can do it by yourself despite everyone saying you need the help of a dietitian. In the absence of help, try your best to research and give it a go, making sure to stay healthy and concentrate on all the delicious foods that you can eat safely.