Program: Getting to the bottom of IBS

Yumi

Hey ladies, we've got an episode coming up with the glorious Esther Perel about how to build your village. You know what I mean? The community of people around you who know if you're okay or not, who will show up when you cry for help, who are part of your life in the most meaningful and generous ways.

Yumi

And I want to hear from you about the importance of your village and maybe not just the things that they do for you, but what you do for them. From picking up the kids from school when you've ended up in hospital, to showing up for your once a week run or dropping food over when you needed it the most. They're the people who check in without being asked, who are in tune with what's going on for you and you can lean on them and they on you. Tell us a story about how your village saved you. Send a voice note to ladies at abc.net.au.

Issy

I was in the bathroom far more than you should ever be in the bathroom.

Jess

Irritable bowel syndrome. This is a really chronic gut condition where the bowel essentially becomes overly sensitive and unpredictable.

Naomi

My stomach pain used to be really, really severe with almost anything I ate. And I thought that was just perfectly normal.

Issy

My stomach would gurgle a lot. I felt quite gassy. It was embarrassing.

Yumi

Hello, welcome. Please take a seat. Try and make yourselves comfortable if you can. My name is Yumi. I'll be looking after you today. On the menu we have some specials actually. We have bloating, abdominal pain, gas, cramping, nausea. There's also some side dishes of constipation. And the soup of the day is diarrhea with croutons. And if you can't decide, we can arrange a mixture of everything. A veritable ploughman's lunch of the many gut troubles available. It's also known as irritable bowel syndrome or IBS. In the first episode of this two-part series, we spoke about what you can do to have a happier, healthier gut.

Yumi

Go back in the feed if you haven't listened yet. In this episode, we're going to look at one of the most common digestive conditions facing women, IBS. According to Monash University, one in seven people have IBS and women are twice as likely as men to be diagnosed. Living with this condition can mean a whole lot of discomfort, embarrassment, anxiety, and regular or irregular inconvenience. A study published in the American Journal of Gastroenterology found that people with IBS are more likely to miss work. And even when they make it into work, they're less productive. I mean, it's hard to be on a team's call when you're on the loo. And while there's no cure, there are lots of things we can do to improve symptoms and lead a better, less gassy, less shitty life. I'm Yumi Stynes. Ladies, we need to talk about deflating IBS.

Issy

Absolutely not. Literally out of nowhere, I started getting a really upset stomach all the time.

Yumi

This is Issy. She's now 24, but as a 16-year-old high school student, she was suddenly struck down with mysterious and debilitating symptoms.

Issy

So a lot of gas, a lot of cramping, a lot of diarrhea. And then I had those symptoms every single day and I couldn't understand why it had happened. Most nights I would struggle to go to sleep because of the pain I was in. And then I would find that most mornings is when I would be quite physically unwell. I would end up going to the bathroom sometimes six to ten times just in the morning.

Yumi

Oh God, you poor thing. What was it like trying to go to school when you were so unwell?

Issy

There were points in year 12 where I was threatened to be expelled from certain classes that I was doing because I was just too unwell to be there.

Yumi

Issy had always loved school, so this was not what she'd envisioned for her final years.

Issy

The last thing you want is for everyone in your school to know that you have stomach problems and I hated being around people when I was so unwell. I felt really embarrassed being around them.

Yumi

She had blood tests, poo tests, urine tests. She blew into a balloon to test her stomach for bacteria. She was poked and prodded.

Issy

And each week I'd come back for the results from the previous week and they'd say, do you feel better yet? And I'd say, no I don't. And they'd order another test.

Yumi

Almost a year after Issy first went to the GP for her symptoms, she was referred to a gastroenterologist. She was hopeful that now she might finally get some answers.

Issy

And the first thing that he said to me was, are you sure you're not just doing all this to get out of a maths exam? Which was really awful to hear. I've been so unwell for so long. You know, it's clearly not getting me out of a single maths exam, it's actually getting me out of all of them. And what I want to do is be able to go do that maths exam, but I can't.

Yumi

Feeling let down and no closer to a solution, Issy, like so many of us do, started experimenting.

Issy

So I started eating gluten-free foods and not having dairy and just sort of assuming what might help.

Yumi

Meanwhile, the gastroenterologist sent Issy for a gastroscopy, which is where a doctor looks into the stomach via the throat, as well as a colonoscopy, where they have a look by going in via your bum hole. It's like the worst kind of fun park ride. The tests ruled out bowel cancer, which was a huge relief for Issy. So she found herself back, guess where, at the GP again.

Issy

They reviewed the results and they said, look, we haven't found anything. All we can really say now is that you probably have IBS. It's the diagnosis that we give you when we have nothing else to tell you.

Yumi

And how did you feel when you heard that?

Issy

I was very glad to have a name for it. But really, the answer is that we don't have an answer. I was given a one page, just an A4 slip of information about the low FODMAP diet. And I was told by my GP, this is a diet you could follow. It helps some people with IBS. You can give it a go if you want. And that was it.

Jess

This is a really chronic gut condition where the bowel essentially becomes overly sensitive and unpredictable.

Yumi

This is Associate Professor Jess Biesiekierski. She researches diet and gut disorders at the University of Melbourne and has been in the bowels of IBS for over 20 years. IBS is a swirl of things you're not meant to talk about at the dinner table.

Jess

It's characterised by common symptoms that include gut pain, bloating, constipation, diarrhoea or alternating between all of those. It's like a balloon slowly inflating inside your stomach. Pain that feels like someone's twisting your insides and looking like you're six months pregnant after one meal. How many people are affected by IBS? Up to 20% of Australians, most of whom are women. And when you actually widen that lens to more general gut symptoms, the surveys that we have suggest that it is closer to 50% of adults at one point in their lives will experience some gut health problem or these gut symptoms that are really distressing and burdensome.

Yumi

Women are twice as likely to have IBS. Jess says that this may be in part because of our lady chemicals.

Jess

We have the key sex hormones, estrogen and progesterone. These actually influence our gut motility, that visceral sensitivity, so how aware and sensitive we are to occurrences or stimulus in the gut.

Yumi

Oh, hi, just popping in here to say that when Jess is talking about gut motility, she's referring to how long it takes for food to go from your mouth and through your digestive system. This process is often sped up, which means diarrhoea, or slowed down, which means constipation, for people with IBS.

Jess

And many women will actually describe flare-ups around their period due to hormonal changes that are affecting that gut motility and sensitivity.

Yumi

According to research, there's a few different things that might lead to someone having IBS. One of them might surprise you. So there's

Jess

increasing awareness of the role of childhood trauma and things that are occurring early on in life. If

Yumi

you had to be hypervigilant as a kid, there's a chance that this can ramp up your gut's sensitivity.

Jess

And there's lots of research and awareness now being done in that space to understand how something early on can then lead to that IBS onset later on in life.

Yumi

Other potential causes of IBS include repeated antibiotic causes, gut hypersensitivity, low-grade mucosal inflammation, a possible genetic link, a previous gut infection that includes food poisoning. People with IBS may also have an inflamed gut.

Jess

We know that people with IBS actually have an increased intestinal permeability, sort of leaky gut.

Yumi

My producer, Tamar, has IBS and her troubles. She reckons they started after a bad bout of food poisoning overseas. What I don't understand is why she ended up with IBS and another person who gets food poisoning is fine afterwards. Is it about what you started with? Is it about the health in your microbiome before the food poisoning incident?

Jess

Yes, in that stability of diversity. So the more diverse gut microbiome we have, the more healthful benefits it's associated with. And it may have been that perhaps that diversity before that onset of the food poisoning hasn't been able to recover. And whether that was the food poisoning hit her harder, whether it was the diversity wasn't as stable and as diverse to start with, or any one of those other factors that we've just listed. For

Yumi

someone listening who's not familiar with IBS, can you explain what impact it can have on a person's life?

Jess

So people with IBS actually show two to three times higher rates of anxiety and depression than the general population. And we know that that occurs because there's this bidirectional relationship between IBS and mental health disorders. The gut and the brain share this same gut brain signaling. So when that network gets out of tune, both mind and the gut can suffer. And is why when we then talk about treatment and triggers, you can't think about just your gut without thinking about your mental health as well. So what do you mean when you say bidirectional? So the gut and the brain are constantly in communication with each other. The communication signals include hormones, neural signals, even signals that are being sent from our dear microbe room. So nerves, hormones and immune signals. In IBS, effectively that gut brain signaling gets really noisy. And those normal gut sensations are then misinterpreted as pain. Ah.

Yumi

And I guess by being bidirectional, what you're saying is that, yes, your brain is affecting your gut, but your gut is also affecting your brain. Correct. Yeah, OK. Correct. Like at one end, you've got John Lennon and at the other end, you've got Paul McCartney. And if one's not happy, then often the other isn't either.

Jess

If you think about when you may have a stressful event coming up or something that's really nervous, a grand final, an exam, an oral presentation, those are times when your body is essentially really heightened to anything that is occurring within your gut and that stimulus that might be there. So at times of anxiety and stress is when you're more likely to also feel gut symptoms.

Yumi

Ah, like the nervous poo.

Jess

Yeah, the nervous poo, the nervous wee.

Naomi

If I was coming in today and I had a really bad IBS bout, I'd be like, what should I eat in the morning? I don't want to shit in between this. This

Yumi

delightfully frank human being is Dr Naomi Ko Bellick. Naomi is a science communicator and self-described hot girl with IBS.

Naomi

I always find that the hottest people have IBS and it tends to be women, right?

Yumi

You have permission to leave the room. Go to the bathroom any time you want.

Naomi

OK, I went just before I came in.

Yumi

Naomi's IBS symptom of choice is diarrhea.

Naomi

I shit four to six times a day. The real sloppy plops. That one's me. I'm the queen of the sloppy plops.

Yumi

Right. Man, I actually don't love poo talk. Oh, condolences.

Naomi

My deepest condolences. Strap yourself the fuck in.

Yumi

Naomi is now 31 and she's been at war with her digestion her whole life.

Naomi

I have vivid memories of my gong gong back in Singapore, like rubbing orange oil on my stomach from as young as I can remember.

Yumi

So gong gong trying to rub orange oil into your tummy was to try and soothe the digestive upset. Is that

Naomi

the idea? A hundred percent. Just to make my tummy better. Also, I'm still just a big fan of belly rubs to this day.

Yumi

I'm like a dog. OK, apart from the frequent pooing and the texture thereof, what were the other symptoms?

Naomi

The pain. It was really, really painful. I think women are kind of just conditioned to accept pain. So I just thought it was normal. But my stomach pain used to be really, really severe with almost anything I ate. You know, with babies, how you like roll their legs to release gas. That'd be me in bed. I'm there like rolling my legs. I'm like, let it out. Let it out so you can sleep not in pain.

Yumi

Naomi always thought that being rubbed in orange essence and spending half the day in the bathroom was normal. And then a couple of years ago, she went to donate blood.

Naomi

And there's a box you meant to tick that says I haven't had diarrhea in the last seven days. And I was like, well, what do you mean? I have diarrhea every day. And they told me to go and see a doctor. Oh, yeah. And my doctor was like, why didn't you tell me about this? And I was like, I thought it was normal. What do you mean?

Yumi

Oh, is that right? So then your doctor was like, oh, my God, why didn't you tell me? And then what was next? What was the process to diagnose

Naomi

IBS? So with my symptoms, it was very easy for my doctor to diagnose my IBS. And then we started talking about different potential treatment options.

Yumi

Like Issy's GP, Naomi's doctor suggested she try the low FODMAP diet. And if you don't know the FODMAP diet, we'll go into it in detail in just a sec. The thing that worried Naomi about the diet was that she would need to cut certain foods out, at least for a little while.

Naomi

Restrictive diet freaks me out a little bit. I think it can bring up some disordered eating. And I think it's very culturally limiting for me, both of my Singaporean and Croatian heritage. And I was like, no, not more. So that wasn't what I ended up going with.

Yumi

You know, I'm low FODMAP. How are you feeling? Fucking fine. It's just mainly onion and garlic. Yeah. Like I can do the other things without too many consequences, but those ones out and

Naomi

I'm pretty good. I'm quite sure onion and garlic set me off, but I'm like la la la la la la la.

Yumi

Naomi, just try it. Try it for a couple of weeks. You'll be like, oh, my God, my God.

Naomi

Are you my doctor?

Yumi

Yeah, I am. Dr. Stynes over here. Look out.

Naomi

Yeah. 

Yumi

Naomi has taken a la la la la la la la approach to treatment. But according to associate professor Jess, the first option to try when it comes to getting IBS under control is to really examine what you're eating, avoiding key dietary triggers and looking at other exercise and hydration and stress management approaches.

Jess

And then if you've got specific symptoms, target those. So, for example, if constipation is the key symptom, then looking at fibre and particularly soluble fibre in the diet. If there is gut pain or diarrhoea is a key symptom, then there is medication that can be prescribed for that.

Yumi

OK, so that's something that's very practical. What about targeting what's going on in our minds?

Jess

So psychological approaches include CBT, which is cognitive behavioural therapy, gut directed hypnotherapy and mindfulness. These target that gut brain signalling and effectively try to retrain how the brain is interpreting those gut signals.

Yumi

How do you talk to your gut signals?

Jess

If I take CBT as an example and one of the CBT approaches that has a particularly strong evidence base is something called exposure based CBT. And so it's looking at your avoidance behaviours and how you can retrain your approach to things that you typically associate with being fearful of.

Yumi

That might be reframing fears around eating out if there isn't a toilet nearby or not knowing what's on the menu at a restaurant or being invited for dinner at a friend's house where you're not in control of the food. Beyond CBT, probably the most well-known treatment for IBS is the low FODMAP diet.

Jess

The low FODMAP diet is centred on avoiding fermentable carbohydrates. FODMAP is an acronym that stands for fermentable oligosaccharides, disaccharides, monosaccharides and polyols. Bit of a mouthful, much easier to say FODMAPs. And effectively, these are a group of carbohydrates that are rapidly fermented. They draw water into the bowel, hence potential diarrhea. And once they hit the bowel, they're rapidly fermented by the bugs in our gut, hence bloating, gas production, flatulence and disruption of motility.

Yumi

Things like onion, garlic and cow's milk are high in FODMAPs, as are lentils and chickpeas. But then there's foods that you might not expect, like cherries and cashews. The diet, which was developed by researchers at Monash University, identifies all the foods that are high in these FODMAPs so someone with IBS can figure out what is making them fart like they're trying to commit a murder or be doubled over in pain in the bathroom. But Jess says it's important not to go it alone at the

Jess

start. You spend time with a dietitian learning how to reintroduce those FODMAPs and effectively retrain your tolerance to some of those key FODMAP foods.

Yumi

Oh, what do you mean? So you should eat little bits of them?

Jess

Yes. Yes. No, they hurt. So the gold standard approach for the low FODMAP diet education is three phases. Firstly, restriction, where you remove these high FODMAP foods from your diet. See if that helps. If there has been symptom improvement, then we start to work out which of these FODMAPs are your key trigger and work out what is your tolerance level to each of those FODMAPs. And then the third phase is called personalisation, where we spend time with the patient, talking to them about how they can live, understanding how they can continue trying to build their tolerance and reintroduce and expanding their diet in the long term.

Yumi

Sure. And just to be clear, not everybody has the same triggers, do they?

Jess

Correct. Correct. And when you're trying to work out which is best, a FODMAP approach or something like a psychological approach, like a CBT, we also don't know which one will work best for whom.

Yumi

The minute I hear about microbiomes and not having a healthy population of them, my mind goes to fecal transplants. Should I be offering my poo to my producer, Tamar?

Jess

If you yourself undertake screening to see if you are a super donor. So there's a long list of things that you need to tick off to ensure before you start handing out your poo willy nilly. Well, what does a super donor have? There's a long list of ensuring that your poo is of the most diverse and stable and healthy bacteria composition. So it is best done, actually, by somebody who lives with you in the same household, because there is so much similarity in their microbiome overall. And then it's more likely that your microbiome will take it on board.

Yumi

Right. That's so fascinating. So but just to be clear, people shouldn't be doing this at home themselves.

Jess

Right. No, don't look it up on YouTube because you will. It's possible, but I would I would never recommend it. Many hospitals I know around Australia are using FMT in a research trial. So if somebody is looking to be involved and to give it a go, then it is highly likely they can find somebody in their city.

Yumi

Issy, our mate who was accused of faking tummy pain to get out of maths tests, eventually went down a more conventional route to treat her IBS, but it took her a while to get there. After finally being diagnosed at 17 after a year of searching for answers, she was sent on her way from the GP with nothing more than a weak smile and a pamphlet on the FODMAP diet.

Issy

I remember just coming home to my dad and just saying, I've been told I've got IBS. I might maybe try this diet. But honestly, just looking at the A4 page, it just looked incredibly complicated. And my dad and I sort of looked at it and thought, well, we're not doing that.

Yumi

Issy carried on trying to manage her symptoms by cutting out certain foods and with over-the-counter medications. But finally, at the age of 22, six years after her diagnosis, she went and saw a dietician.

Issy

For the first time in my whole experience of being unwell and getting my diagnosis of IBS, I actually had someone really talk to me about what it meant to have IBS and what it means to do the low FODMAP diet and actually explained it to me wholly. And that was incredible. I couldn't believe that it had been so many years that I'd gone by without a health professional actually taking the time to explain any of those things to me.

Yumi

Issy and the dietician made a plan. The first step was to cut out a lot of high FODMAP foods to see if that improved her symptoms.

Issy

At the end of that period, I did certainly feel a large improvement. I was going to the bathroom far less regularly, had less cramps, less gas pain. It helped a lot.

Yumi

After this period of fairly strict elimination, Issy started slowly reintroducing foods to see what her triggers were and figured out that dairy was a big one. Yeah, we're looking at you, ice cream and cheese, you perfect problematic princesses.

Issy

So I have lactose free or, you know, vegan dairy products if I want to.

Yumi

Issy's not so hung up on what she can't eat. Instead, she's looking at improving her health.

Issy

Now I really am able to focus on things like fibre, protein, carbs and have a really good, healthy diet while still remaining low FODMAP and keeping weight, which has been amazing. That's been a really good change. Whilst on the low FODMAP diet, you are having to restrict some things. You can still have a really good diet and a really good relationship with food.

Yumi

Issy has also realised that stress is a big trigger for her IBS, so she stays on top of her mental health.

Issy

I see a psychologist. I try to be very aware of my myself and my body and how I'm feeling and use, you know, just some mental health strategies to try and focus on that and keep that at a minimum, which I found has been helpful. But I would say I am quite an anxious person. So unfortunately, it does still remain a pretty big trigger for me. But I think I'm managing it as well as I could.

Yumi

As for Naomi, she's still eating everything and anything. Consequences be damned. But like Issy, she is keeping her anxiety in check.

Naomi

I do have an incredible psychologist. I have less stresses in my life. I'm someone whose IBS is much, much, much more manageable. I used to have stomach pain like every day, quite frankly, and really bad stomach pain, at least like two to three days of the week. Yeah. Whereas now I'm probably going to have stomach pain like once every three months. Like it's much more manageable.

Yumi

Naomi's guts are not perfect, but she's in a better place to deal with the daily special of loose stools when they do come.

Naomi

I also think that understanding what's happening in your body is really empowering. Like I'm not trying to sugarcoat the IBS can be really horrible. It can be. I've experienced that. But I think understanding what's happening in my body, understanding different treatments and how they work makes me feel much more in control and empowered in navigating that situation and having doctors that I trust who are empathetic, who don't dismiss me and who listen to me. When you find the good ones, you've got to sink your teeth in and hold on to them for dinner.

Yumi

Ladies, it's fun to make jokes about poo-poo when you're feeling good and your tummy's settled, but it's really no fun at all to be at the mercy of your unpredictable body, especially when it's the kind of stuff that you can't talk about while circling the smorgasbord or slinging sausages at a barbecue. If you're one of the many, many people experiencing IBS symptoms, find a GP who knows about this stuff. It's a bit like menopause. Some doctors are down. Some doctors act like they've never heard of it. Find your person and be tenacious. If you think you have IBS, there's heaps of resources on the Monash University's IBS portal, including how to approach the low FODMAP diet. I partially follow it and I still get to eat amazing food. Being strict about the things I need to avoid has massively stepped up my quality of life.

Yumi

And hey, Associate Professor Jess Biesiekierski is looking for subjects for a new gut research study she's heading up. If you're interested in donating your data to science and tracking your diet and poos for a few months, check out gutresearchstudy.com. The link will also be in our show notes. And if you like this episode, please do us a solid and share it with someone who you think will get something out of it. This podcast was produced on the lands of the Gundungurra and Gadigal peoples. Ladies, We Need to Talk is mixed by Ann-Marie de Bettencor. It's produced by Elsa Silberstein. Supervising producer is Tamar Cranswick. And our executive producer is Alex Lollback. This series was created by Claudine Ryan.

Marc

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