Guest Post from New Zealand for IBS Awareness Month: We Should Be Able to Talk About This

IBS Impact is pleased to welcome a guest blogger this week. Jay Thompson-Munn is now self-employed as a graphic designer and virtual assistant, after transitioning from high-level administrative employment in order to accommodate her IBS and other health conditions which commonly overlap with IBS. She also has several family members with IBS and/or other GI conditions. Jay blogs on various interests at A Jay in the Life and is the administrator of a new New Zealand-specific IBS group on Facebook, IBS Support NZ, to which she welcomes members. She wrote this post specifically for IBS Impact for IBS Awareness Month 2015. We thank her for sharing her perspectives with readers.

I’ve had digestive issues for as long as I can remember. My Mum and her sisters have some form of IBS or gluten and/or wheat intolerance. Yet, oddly it seems to only affect the women in my family. They all experience fairly similar symptoms to me: cramping, chronic constipation or diarrhea, and an aversion to fatty foods, but issues with dairy and/or gluten are the most common for us. Yet none of us have coeliac disease or an actual gluten/dairy allergy, just intolerances. No one on Mum’s side of the family would ever eat “white bread”, (including things like croissants, scones etc.) unless it was a special occasion. We always had grainy breads, or if we were skint, wholemeal – as it’s a bit less tough on the intestines.

I think it helps a lot, having family members who suffer from the same issues. But I guess I always thought it was “normal” to have this happen. Awful as it is, that it happens to so many of us. It’s great to be able to talk to relatives about it knowing they have been through a similar experience and really understand. I think it’s like that with any illness though. But of course it really is very different for every individual.

I’m always the person that gets an “upset stomach” while travelling. People often say I have a “sensitive stomach”. It seems to get off-kilter bacteria-wise very easily and I rely on bottled water even when just visiting Australia! Yet tap water is fine in New Zealand. Over the years, I’ve picked up a couple of different types of bacterial food poisoning (in 2009 I managed to contract campylobacter and was sick for over a month) I understand this can exacerbate gut issues.

I have had to rearrange my life around IBS. One of the reasons I now work from home is that IBS can be a particularly big issue for me in the morning. I often need to be very near a toilet when I’m having a bad-gut day/week. Another reason is that it’s actually hard for me to get up early enough to allow for time for breakfast and to use the toilet before leaving for work – I get a sense of urgency with bowel motions (particularly if I drink coffee, which I no longer do) and it’s a very real concern. It can be incredibly uncomfortable/painful/stressful if I can’t get to a toilet fast enough. That has improved now that I’ve mostly cut gluten out of my diet. But it was pretty hard to dash off to the loo while at work in the morning, from a meeting etc.

I started to feel guilty about spending so much of my salaried time in the bathroom. That is not a nice feeling. Even now, the first thing I do when in a new place is figure out where the bathroom is. I was recently diagnosed with Generalised Anxiety Disorder (GAD) and a big part of this was the stress around finding or being near a toilet when I needed to be, or having to ask strangers where the bathrooms are, or wondering if I was “breaking the rules” using a disabled toilet.

I also have a few other chronic illnesses, one of which is Endometriosis – which often brings its friend IBS along with it. I’ve had to deal with a combination of chronic constipation or chronic diarrhea for a long time. While I have experienced dreadful pains from either or both of these conditions, I’ve had such violent diarrhea and cramps that my body gets so exhausted from the physical stress it’s under, that in the midst of this, I passed out on the bathroom floor. Just what I want my husband to come home to! It’s horrible.

Luckily I have health insurance (these medical woes are so expensive to deal with!), so I was able to see a gastroenterologist through a referral. He recommended seeing a nutritionist, and mentioned the low FODMAP eating plan – where you eliminate all FODMAPs for 6-8 weeks and slowly reintroduce them to see which are causing you issues. I have been following the low FODMAP lifestyle for nearly 2 years now, it has been very successful for me. There is still not a heap of personal experiences with FODMAPs online and still a lot of foods untested for FODMAP levels etc. But it’s certainly making itself known around the health communities. A lot of people are asking questions about it. And I talk about it, a lot! I will happily explain it to anyone who is willing to listen.

On that note, I feel IBS and the treatment methods are not talked about enough. I recently came across a brilliant hash tag on Twitter (started by inflammatory bowel disease (IBD) blogger Sam Cleasby of “So Bad Ass”) #StopPooBeingTaboo – I genuinely think that if we discussed this more often and more openly, people would have relief from their symptoms faster. They would realise it’s VERY common and they absolutely do not need to suffer alone. For example, I have only just recently learned, after 27 years on this planet, that there isn’t really such a thing as a “bowel”! It’s a term used to describe the digestive tract, usually incorporating the small and large intestines. The large intestine is also the colon. These things make up your bowel. I did NOT know this. My research led me to believe the small bowel was the large intestine. No gastroenterologist, GP, or doctor of any form has EVER bothered to show me a diagram (except the Bristol stool chart… but that’s another story) or model of the organs and explain how they work and what actually happens physiologically with IBS.

In terms of treating my IBS, I tend to prefer the natural approach (I was on a lot of heavy painkillers for a long time for Endo and I just don’t want to take pills if I don’t need to) – things that have worked best for me are: regular exercise (yoga is particularly good at massaging the digestive organs), limiting my gluten intake and adhering to the low FODMAP diet, peppermint oil, loads of peppermint tea, ginger tea, cutting back on caffeine and working from home. I have also very recently started drinking Kombucha tea, though there isn’t any conclusive proof this works, it has been used as a digestive aid in many countries for hundreds of years. And I’m currently experimenting with eating more probiotic-fermented foods to increase the positive gut flora.

As for where I go to find information about IBS, how to treat it, what it is etc. I generally take to the Internet for info. I was never really pointed in the direction of resources, to be honest. I have done a lot of sleuthing on my own to find out. I ask doctors very specific questions, often. I look at forums, chat to others, read blogs etc. and a lot of sufferers who talk about their IBS experience online are still too scared/ashamed to use their real name. I think that’s sad. We should be able to talk about this. It’s a bodily function we have very little control over. I have listed some hopefully useful resources below:

Support group:
I was told there isn’t an active NZ wide support network, so I made one! I have created this group on Facebook – I hope to start a website soon!

Monash University FODMAP app:
This is a little on the expensive side for an app, but I have found it endlessly useful while adhering to the low FODMAP diet. It has filters for your specific sensitivities and recipes. I use it at least once a day! It was well worth spending money on.

(Note from IBS Impact. The price of the Monash University app varies by country and currency. IBS Impact receives no funding for the link to Monash’s materials or their sale, but regards them as highly reputable and scientifically accurate, as the original academic research center to develop the low-FODMAP approach. It is our understanding that proceeds are used to continue low-FODMAP research and testing of foods.  As with all of the information on this blog, our main website and social media, it is provided in the interest of reputable public awareness and advocacy, and assisting blog readers dealing with IBS to make informed choices for themselves or their families.)

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