Guest Post From Australia For IBS Awareness Month: IBS- A Personal and Professional Journey

IBS Impact is pleased this week to welcome guest blogger Joanna Baker, APD, RN from Melbourne, Australia to share her personal and professional experiences as a person with IBS and a professional in the field for IBS Awareness Month 2019. We thank her for her time and insights.

Joanna is a foodie, a dietitian and a registered nurse. She works exclusively in IBS and food intolerance at Everyday Nutrition. Joanna says the biggest compliment a patient can give her is that she helped them not be scared of food.

 

I’m guessing, whoever said “trust your gut” didn’t have Irritable Bowel Syndrome (IBS). If, like me, you’ve experienced the unpredictable and embarrassing gut upsets that are classic of IBS you’ll know that your gut is far from trustworthy.

My experience with IBS spans both the professional realm and personal “participation”, so it’s a condition that is very close to my heart. I’m honoured to share my story of an existence with IBS here in the South Pacific and a huge thank you Nina Pan for including me in #IBSawareness2019.

Firstly some background, I’m an Accredited Practising Dietitian (the Australian title for a Registered Dietitian) and a Registered Nurse, based in Melbourne Australia, the birthplace of the low FODMAP diet. I’ve been working in healthcare for over 20 years but I have also suffered with IBS for long enough that I don’t remember a life without “gut issues”. My IBS has affected my work, my social life, my intimate life and my mood. It sucks. It wasn’t until I was in my mid-thirties (way too late) that I discovered I didn’t have to “just put up with it”. It’s been a process, but I am now at the point where I feel like I am charge of my gut, instead of my gut being in charge of me. In a nutshell, I know how bad it can be. But, I also know it doesn’t have to be that way.

My IBS story really starts back in the 1970s when my mother first took me to the doctor about my gut issues. I was only about 12 months old and she already knew that cow’s milk just didn’t agree with me. Back then there was no low FODMAP diet. The doctor said “stop giving her cow’s milk, she’s just a gutty baby and will grow out of it”. Well, I didn’t grow out of it, I just grew into a “gutty” teenager and eventually a “gutty” adult. I had never known any different. This was what I thought was normal.

Growing up I was aware that my gut was more sensitive than my friends’ or family’s guts, but I thought it was just me and I had to learn to live with it. I remember as a pre-schooler my aunts and uncles making jokes about how efficient I was at expelling gas, and I remember as a young teenager going home sick a number of times as well as a particularly embarrassing event at Girl Guide camp. All along watching my dad suffer with IBS and thinking, I really hope I don’t get IBS when I grow up.

I started my adult life as an anaesthetic nurse, I loved the complexity and technical side of this but always felt something was missing. It wasn’t until after my son was born when I was in my early 30s that I decided my future was in the prevention of disease. So back to university for a Master of Dietetics.

As a “dietitian to be” I knew part of my job would be supporting people to make changes to their diet, even removing foods they love. Being super conscientious I decided that I should know what it’s actually like to do this, so I began to plan my one week gluten free diet. What did I have to lose besides? It would only be for a week. I could survive.

To cut a long story short, within 2-3 days, life as I knew it was upside down. For the first time ever I discovered what it felt like to be full and satisfied after a meal and not bloated and uncomfortable. Literally. The. First. Time. Ever. I actually got home and didn’t change straight into my tracksuit pants. I (wrongly!) assumed that I must be sensitive to gluten, after all I removed it and felt dramatically better, Right? No, I was wrong. But by the time I knew any better, being screened for coeliac disease meant a gluten challenge, and there was no way I was going to do that. Eventually though, it became apparent that going gluten free wasn’t enough. One thing led to another and before long I found myself on a low FODMAP diet as well. My list of safe foods was shrinking unnecessarily smaller and smaller and my anxiety around food in general was getting larger and larger. In hindsight I now know if I had pursued proper guidance and support at the start, I wouldn’t have wasted a good 7–8 years fearful of wheat before attempting (and passing) the dreaded gluten challenge. You can read more about my story of Reuniting with Wheat  here.

Eventually I started my dietetics degree and began to learn more about what these diets were and how they are supposed to be implemented. I knew I had gone about it the wrong way, but life was too busy and living on a restricted diet seemed like the easier option. I finished my degree and qualified as a dietitian, going straight into private practice where I could focus on my passion, helping people like me.

Gut microbiome research was beginning to grow  and the importance of variety to gut health was plaguing me day after day. I knew I had to challenge, but every time I tried the smallest amount of food outside of my safe list, I suffered for days. About this time I attended a fascinating professional development course at the allergy unit Sydney’s Royal Prince Alfred Hospital (RPAH). This workshop made it evident that it was time for me to get advice from someone who could objectively look at my diet and my symptoms and help me find some food freedom. I already had my head right around FODMAPs, so I spoke to the head dietitian at RPAH. I have Anne to thank for identifying a non-FODMAP trigger which was interfering with my results. Once I removed this, I not only gained more consistent symptom relief, I also found that when I dabbled in small amounts of foods that weren’t on my safe list I didn’t suffer for days.

Anne helped me grow my confidence and with it, the variety in my diet. I was actually passing some challenges and finding my thresholds with others. By the end of the process I had identified 2 major triggers (both of them non FODMAP) and 1 minor trigger (Polyols). In hindsight, I can see why I got an improvement on a gluten free and low FODMAP diet, but why missing the other triggers meant my results were inconsistent. I now feel better, I have more variety, and my diet is much less limited. I would almost say that I can live and eat like a normal person again.

What I’ve learned:

  • Never underestimate the input of a specialist dietitian who can be objective. Even if you’re a dietitian yourself.
  • FODMAP is a journey and not a destination.
  • IBS itself is multi-factorial. Treat it like a puzzle that needs to fit together for you in your own unique way. Don’t limit your IBS toolbox to FODMAPs alone.
  • Being sick is scary and debilitating and so is challenging foods that might make you sick.
  • Food is so much more than energy in. Food is emotional, scary, nourishing, social connection, caring, celebrations and commiseration. Food is an integral part of everyday life.

To dietitians, doctors, nurses and other healthcare professionals, please listen empathetically to your patients. Sometimes just listening to and validating their story is the first step in moving forward. The longer I’m in this game the more I realise that there is so much we still have to learn about food intolerances, IBS and gut health. So be curious about what your patients think their symptoms and triggers are. Think outside the box and help them to troubleshoot if needed.

In Australia, and especially in Melbourne, we are super lucky. We have multitudes of dietitians and doctors who know about the low FODMAP diet and how effective it can be. We have foods in the supermarkets that are certified low FODMAP including breads, pasta, pasta sauces, soups, ready meals, muesli bars, cereals, cookies, yoghurts, milks and more. You could probably eat certified foods for a week and not get bored or hungry.

Unfortunately, like other parts of the world, we are still missing public awareness and the understanding of friends, family and colleagues of  what it’s like to live with an invisible and debilitating condition. It would be so wonderful to have meals identified on menus as low FODMAP or easy to modify to low FODMAP. We want more (and cleaner) public toilets! Lastly doctors, please stop telling patients to “manage their stress” or  just “google FODMAP”. This isn’t helpful and more often than not, Google is wrong. Please refer them to a dietitian who is trained and experienced in modifying nutrition guidelines to manage a medical condition like IBS. It’s a specialised dietitian that can help your patients get as few symptoms as possible AND as much variety as possible at the same time.

If, like me, you are one of the millions worldwide who can’t “trust your gut”, you are not alone and you are doing a great job ❤

2 Comments

  1. Anonomyous

    Reading your story was so interesting and I feel for you and how long it has taken you to sort out your diet issues causing IBS. My experience is similar to yours. I have seen numerous doctors and they just aren’t interested in helping you as a patient. I have spoken to many GPs about my constant diarrhoea and they really just don’t have any solutions or empathy to what your going through. When I was a child I was constantly in pain and had diarrhoea all the time. I was taken to the hospital where at one stage they were going to do an appendectomy because of my abdominal pain. Then they decided it was a grumbling appendix. Now I realise it was because of the milk I was forced to drink with every meal causing my diarrhoea. I have diagnosed myself with lactose intolerance. The gastroenterologist I saw did a test but said its not conclusive test. I have had problems at work where I have literally had to leave a procedure room (nursing) because of abdominal pain and diarrhoea. I had one of the nurses who went to use the toilet after me tell everyone afterwards how I smelled out the toilet and it was disgusting. She said this to everyone all day to doctors and nurses anyone she saw. I was absolutely mortified. It has become a joke in the unit where I work. I don’t think anyone realises how awful this condition is unless they have it themselves. My faith in doctors has gone down to zero because I feel you are on your own.

  2. AA-R

    What were your two non fodmap triggers?

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