Belly Burdens at the 2017 Health e Voices Australia Conference

A few weeks ago, I had the privilege of attending the 2017 Health e Voices Australia Conference in Sydney. It was a fantastic experience – the speakers and panellists were amazing, I met some fun and inspiring people, and the conference in general had a very positive energy!

I would like to share with you my top takeaways from the conference:

Sometimes it helps to have a bit of a sense of humour about what you are going through.

This was something that came through from quite a few of the speakers, and made me remember the saying that “laughter is the best medicine” – it really is true! Sometimes a smile or a laugh can ease the awkwardness, and make you feel a little better too.

For so many of us, it can be very awkward to talk about our experiences (particularly with a bowel condition like mine!), and sometimes the easiest way is to make a joke out of it. For example, our conference MC Shelly Horton told a very funny story at the about a mishap that led to an oddly shaped scar on her abdomen. Speaker Turia Pitt also had a funny and sarcastic way of talking about her newfound “fame” since her ordeal – she doesn’t like it, but she’s never had stage fright!

Q&A with Turia Pitt

Regardless of the condition or disease, we all have similar challenges.

After talking with people advocating for a whole range of conditions, including diabetes, mental illness, cancer and psoriasis, I realised that even though we have different symptoms, we still have the same sorts of challenges. This was particularly humbling, but also quite comforting.

I realised in these discussions that we all have to manage horrible symptoms and treatments, often with multiple medications. We all have to deal with awkwardness and cynicism. We all think about our identity following diagnosis, and what labels we want to use (or not). As panellists Brittani Nicholl and Luke Escombe discussed, we all have to juggle the different “compartments” of our lives. We all deal with varied levels of anxiety. We all have to deal with people not fully understanding the sometimes “invisible” nature of our symptoms. We have all been told in one way or another that we “don’t look sick.” And for those with chronic illnesses, we all want to find a cure.

Panel with Brittani Nicholl and Luke Escombe

It is incredibly important to always use positive and supportive language.

When you are feeling fatigued or in pain, it can be very easy to let yourself be negative or even depressed. To think that you deserve this, or that you have somehow done it to yourself. Or to want to give up fighting. It can also be tempting to compare yourself to others in a similar situation, either to make yourself feel better or to justify how crappy you feel. I’ve been in that kind of head space many times too.

However, this doesn’t help you, or others in your community. So as hard as it is some days, we have to stay positive and support each other. As many of the speakers and panellists at the conference said, we need to think of ourselves as “surviving,” not “suffering.” Speaker Nick Bowditch suggested that we think of our “flaws” or “defects” as our “gifts” or “superpowers” instead, because they make us stronger and better in the long run. We also need to use more positive words like “living with” rather than “battling.” And we need to push ourselves and others upwards, not pull them down further into those dark places.

A little "10 second dance party" every now and then also helps!

We need to do more to recognise the mental health components of our conditions.

Sometimes positive language and supporting each other isn’t always enough however, which is where this point comes in. We often forget that these conditions have mental or psychological components as well. Or we either hide or brush it off, because is seen as a weakness.

In the larger health advocate and patient support community, we need to work to change that perception. We all need to be able to acknowledge that it is okay to feel anxious, depressed, stressed, or just generally miserable – because having a chronic illness in particular just plain sucks! We need to be able to take care of ourselves both physically and mentally. We need doctors and other medical professionals to understand this side of it, and direct us to others that can help. And we need to remember that just like everything else, we are strong enough to handle it and work through it.

It is important to be authentic when sharing our experiences.

As several of the speakers and panelists pointed out at the conference, people will see through any fake information or lies, and it won’t give them a good impression of you. So, in order to reach and help more people, we as bloggers and advocates must be completely authentic. As part of this, we also need to share our real experiences, even if it is messy (without going too overboard of course). I would therefore like to use this as an opportunity to pledge to always be authentic with my writing and posts, and will try to share more and more of my experiences with all of you.

Photo credit: Janssen ANZ

On that note, please also refer to the below disclaimer from Janssen ANZ for the 2017 Health e Voices Conference Australia.

Bad Bellies and Pasta

Growing up, pasta was my absolute favourite food – especially Spaghetti Bolognese. Even today, a bowl of pasta is my go-to comfort food, and the one thing I am very comfortable with cooking.

That’s why when I learned that I was fructose intolerant and wheat was one of the worst culprits, I was initially very much at a loss. On the one hand it forced me to step outside my comfort zone and try cooking other types of food, but I still missed having a bowl of Bolognese for dinner every now and then!

The first type of pasta that I tried was one made with corn, but I quickly got a very bad stomach ache and reflux after only a couple of mouthfuls, so that was clearly not the way to go! Over the last few years however, I have tried many different types of gluten free and other low wheat options, and settled on a few that seem to work better for me.

So, here are my recommendations for different types of pasta that are more fructose friendly:

• San Remo Gluten Free pasta: I have mentioned this one in previous posts, but I can’t get enough of the San Remo Gluten Free pasta range – it really is amazing, and very similar to regular wheat pasta in taste and colour. This pasta also holds its texture reasonably well when cooked. The San Remo Gluten Free pasta range is made with maize starch so it’s not entirely fructose friendly, but it is still a good option. The only negative points I have about this range is that there are less styles of pasta available compared to San Remo’s wheat pasta range, and they only come in 250g boxes.

• Latina Fresh Gluten Free Beef Ravioli: Ravioli was particular favourite of mine growing up, so I was very excited when Latina Fresh came up with a Gluten Free range! The ravioli can get quite soft when cooked, but it still tastes good. Just be careful to limit your portions though, as there is a small amount of onion in the filling. The packets are quite large, but the uncooked ravioli freezes well, so I always keep the leftovers in the freezer for another day.

• Latina Fresh Gluten Free Lasagne Sheets: Just as I was excited by the Latina Fresh Gluten Free Beef Ravioli, I was also very relieved when they released fresh gluten free lasagne sheets. After struggling with dry gluten free lasagne sheets for months (which sadly includes San Remo’s version), I found that the Latina Fresh Gluten Free Lasagne Sheets were so easy to use – cooks perfectly, and tastes almost like the wheat version! These gluten free lasagne sheets also freeze well when cooked.

• Guzzi’s Golden Pasta Gnocchi: This is a good low wheat option if you want something different, as the gnocchi is made with 81% potato flour. The Guzzi’s Golden Pasta Gnocchi range is also made fresh, and cooks very well. Again, be careful with your portion size, as this gnocchi is made with wheat flour. These also freeze well when uncooked.

Recipes for Bad Bellies: Fructose Friendly Chocolate Chip Hot Cross Muffins

For those that celebrate it, I hope everyone enjoyed their Easter holidays!

And as we say goodbye to Easter for another year, I decided to try something a bit different – Hot Cross Muffins. There have been a few recipes floating around online recently, but I chose to adapt this one by Anna from FODMAP Journey.

The main differences from this recipe were that I used raw brown sugar (because that was all I had), chocolate chips instead of dried fruit (because I am a chocoholic – and dried fruit can be tricky for me), and piped on the white chocolate crosses (for a bit of a different look). They also turned out to be more like cupcakes, perhaps because my muffin tins were a bit bigger than what Anna used – I used two tins of 12, which made 24 muffins/cupcakes in total.

Ingredients

225g butter, melted

200g raw brown sugar

150g almond meal

100g buckwheat flour

1 tsp mixed spice

1 ½ tsp baking powder

¼ tsp salt

3 whole eggs, whisked

140g milk chocolate chips

The rind of 2 oranges

3 tbsp orange juice

50g white chocolate

Instructions

• Preheat the oven to 170°C, and line two muffin tins with paper muffin or cupcake cases.
• Whisk together the melted butter and brown sugar.
• In a separate bowl, combine the almond meal, buckwheat flour, salt, mixed spice and baking powder. Then, slowly add this mixture to the sugar and butter.
• Add the eggs, orange juice and rind and beat well with an electric hand mixer. Then, gently fold in the chocolate chips, making sure to leave lots of air in the mixture.
• Pour the mixture evenly into the muffin cases, and put in the oven for 30-40 minutes.
• Take out of the oven and allow to cool. 
• Once cooled, slowly melt the white chocolate (careful that it doesn't burn!), and then pour it into a piping bag and pipe the crosses onto the muffins - be creative!

I found that these have an interesting mixture of spices, chocolate and orange - almost like a Jaffa taste! They also go very nicely with a dollop of cream! :)

Bad Bellies in the New Year

I hope everyone has had a good holiday and New Year! :)

I don’t usually make New Year’s resolutions, but this year I thought I’d make an exception.

In 2015, I continued to slowly gain weight, and by November I discovered that I was now the heaviest I have ever been. I am not in danger, but I do not feel good about myself, and don’t feel healthy either. Therefore, I have decided that my New Year’s resolution for 2016 is to prioritise my health!

There are three parts to this resolution: more exercise, more cooking for myself, and more focus on understanding my belly.

EXERCISE

I have already started working on this part of my resolution. In November, I realised that while it was good for improving my fitness in the long term, swimming twice a week was not intensive enough to help me lose weight. I was very conscious of not pushing my body too hard, as this can put extra stress on the body as previously discussed, so I decided to add walking to my weekly routine.

I first started with a gentle 10 minute walk to and from my local public swimming pool on my swimming days, and after a few weeks, added a 30min walk on Monday evenings. After I was comfortable with this, I started trying to jog some parts of my walking route. At this point, I am now going for a walk/jog twice a week on top of swimming twice a week, and have already lost 3kg!

To help me with this, I have also invested in some good quality running shoes and comfortable clothing, and borrowed my partner’s old GPS watch (see photo below). My partner has been running regularly for a couple of years, and he has been very helpful and encouraging in this, which has really helped with my confidence and motivation! ♡

COOKING FOR MYSELF

As I have mentioned previously, I am not the best cook. I can cook basic things, but have no instinct or creativity for it, and often no energy either. However, last year I started living with my sister who is a very good cook, and she has helped motivate me to try cooking new things and experiment with making things that are more suitable for my belly. :) I have decided to put much more effort into learning how to cook more for myself this year, which will hopefully help me to both improve my health and decrease my symptoms.

I am also looking forward to trying out the below cookbook, which was a Christmas gift from my family. Sourdough bread (particularly when made with spelt flour) has been confirmed by Monash University to be better for those with fructose malabsorption and IBS in general, as the long fermentation process seems to use the FODMAPs in the flour, thus making it easier to digest.

UNDERSTANDING MY BELLY

I have also realised that while I now have a much better understanding of UC and fructose malabsorption, I still have a lot to learn about my belly and its trigger foods. Therefore, I have resolved to put more effort into testing my tolerance levels for different foods, and working on my diet in general.

The first step in this was creating a new food table card (see photo below), which has a more up to date list of good and bad foods based on fructose and fructan levels (using the Monash University Low FODMAP Diet and FODMAP Friendly apps as guides), and it is now colour coded – including putting the best and worst foods in bold, based on what I currently understand about my trigger foods. I have also given copies of this card to my family and others close to me, to help them better understand my situation with food, and work as a guide if they are cooking for me.

Recipes for Bad Bellies: Fructose Friendly Chocolate Chia Seed Pudding

I have recently been experimenting with making chia seed puddings, and making them fructose friendly. In today’s post I will share these experiences with you and give you my favourite recipe so far – Chocolate Chia Seed Pudding.

Chia seeds come from the flower Salvia hispanica (see photo below), and originated in Central America. There is a good reason that chia seeds are called a “superfood” – they are high in dietary fibre, omega-3 fatty acids, calcium, manganese, phosphorus, and protein, and low in cholesterol. They are also gluten free and low in FODMAPs, and therefore fructose friendly! However note that some people with IBS can have trouble with chia seeds – perhaps because of the fibre.

The below recipe for Chocolate Chia Seed Pudding is adapted from this recipe by Minimalist Baker.

Ingredients

1/3 cup chia seeds

1 cup milk

½ cup cream

1/4 cup cocoa powder

2 tbsp maple syrup

1 tsp cinnamon

1 tsp vanilla extract

Instructions

• Mix milk, cream, cocoa powder, maple syrup, cinnamon and vanilla extract in a bowl. Add chia seeds and stir well.
• Immediately pour the mixture into a mason jar, and place in the fridge to set overnight. It will be very runny at first, but will be thick and almost jelly-like once it has set.

I usually like eating this pudding with strawberries on the side, and it also lasts 2-3 days as it is quite filling!

Enjoy!

Defining Bad Bellies

For this week's post, I would like to share what I have learned over the last year about the categorisation of bowel disorders.

It is now my understanding that IBD and IBS have very different causes, and are very different types of disorders. As a summary of my research, I have created the below charts. 

Note that I have chosen a few of the more well-known disorders for simplicity. For a more complete list of autoimmune disorders, refer to this list, or refer to here for a full list of functional gastrointestinal disorders.

Recipes for Bad Bellies: Fructose Friendly Ice Cream

I have recently been experimenting with making ice cream, using my ice cream machine, and adapting recipes to make them more fructose friendly. So far, I have been using recipes from The Ice Cream Book, by Joanna Farrow and Sara Lewis. I would like to share a couple of these with you in today's post.

For now, I will focus on cream-based ice cream, which is made with a custard.

The basic recipe for the custard is as follows:

Ingredients

4 egg yolks

75g caster sugar

1 tsp corn flour (which I substituted with potato flour)

300ml low fat milk

300ml whipping cream

Instructions

• Whisk the egg yolks, caster sugar and cornflour (or potato flour) until the mixture is thick and foamy.
• Pour the low fat milk into a large saucepan. Heat the milk on the stove and bring it just to a boil, and then slowly pour in the egg yolk mixture, whisking constantly.
• Using a double boiler technique (one pan with water underneath the pan with the custard), heat the custard slowly, stirring constantly. Once it thickens and the colour turns from off-white to yellow, remove from the heat and leave to cool.

• Add additional flavours (see below).
• Once the custard and other ingredients have cooled, stir in the whipping cream and then add the whole mixture to the ice cream machine. Churn for 25-30min until thick. Once ready, spoon the ice cream out of the ice cream machine and into a plastic container, then leave in freezer to set over night.

Note that I substituted potato flour for the corn flour, as potato flour has a similar consistency to corn flour and does not have a strong flavor. Considering the corn flour is just used as a thickening agent, potato flour is sufficient as a substitute.

Using this custard base, I have made two variations of ice cream – Chocolate Ripple, and Chunky Chocolate. 

Below are my versions of these recipes:

Chocolate Ripple Ice Cream

Additional ingredients

250g dark chocolate, broken into squares

25g butter

30ml golden syrup

90ml full cream

Instructions

• After preparing the custard mixture, add 150g of dark chocolate and stir until melted. Remove this chocolate custard mixture from the heat and leave to cool.

• Put the remaining dark chocolate into another saucepan and add the butter. Heat gently, stirring until melted and combined. Add the full cream and heat until smooth, then remove from the heat and leave to cool.
• Once the custard mixture and whipping cream have been churned in the ice cream machine, spoon out the ice cream into a plastic container, alternating layers of ice cream and chocolate sauce. This recipe makes approximately 1.5L of ice cream. Leave in freezer to set over night.

Note that the use of golden syrup in this recipe means that it is already fructose friendly, as golden syrup is a fructose friendly alternative to honey.

Chunky Chocolate Ice Cream

Additional ingredients

200g milk chocolate

50g dark chocolate

50g white chocolate

Instructions

• Once the custard mixture has been prepared, add break 150g of milk chocolate into small pieces and add to the custard, and stir over the heat until melted. Remove from the heat and leave to cool.
• Chop the remaining milk chocolate, as well as the dark chocolate and white chocolate. Mix the three types of chocolate in a bowel and leave to the side.
• Once the chocolate custard mixture and whipping cream have been churned in the ice cream machine, gently fold in the chocolate pieces. Spoon out the ice cream into a plastic container, and then leave in the freezer to set over night. This recipe makes approximately 1.5L of ice cream.

World IBD Day: Reflecting on Me and My Belly

Today is World IBD Day 2015. This is the first time this has come around since I started my blog, and last month was also the anniversary of my first diagnosis, so I would like to use this as an opportunity to reflect.

A lot has changed since that day in April eight years ago, when a urinary tract infection caused my first ever major flare up, and led to my diagnosis with Ulcerative Colitis (UC). Six and a half years later, I also found out that I had developed fructose malabsorption (FM). It hasn't been easy to deal with, but starting this blog has helped me learn more about my conditions, and about both IBD and IBS in general. It has also helped me understand my belly, and slowly accept that it is part of me.

There have been many parts to this process. Firstly, I have come to accept that since the diagnoses, my life has changed significantly, and will continue to change. With the help of the research I have been doing for my blog, I am starting to understand that UC in particular is a chronic disease, and that means that this body is what I have to live with. While I am still determined to contribute as much as possible to the fight for a cure, I also know that I need to be realistic about how I need to live my life. I need to do what is necessary to feel better – even though this may take extra time and effort, and cost more money. I have had to accept that taking prescription medication every day, going to regular doctor appointments (such as the dreaded colonoscopies!), and being careful of what I eat, have become part of my new routine. And although all of this can be frustrating, it is worth it to avoid the alternative – pain and discomfort. On the other hand, this has also given me the opportunity to cook interesting things for myself, and generally have a healthier diet.

Another thing I have come to realise is that these conditions did not just suddenly develop. I think that I have had UC and FM for most of my life, but had not realised what the symptoms represented previously. Now that I have a better understanding of the full range of possible symptoms, as well as the potential associated health problems, I am becoming more convinced that I have had belly problems since I was a young child. I have memories of stomach aches after meals, and severe reflux episodes that would last for several hours, or even a few days. I have also always had problems with mouth ulcers, which seem to be linked to IBD, and I was born with dermatitis, which I believe can also be common in people with bowel conditions. I have also found out that auto-immune diseases in some form seem to run in my family, on both sides, and that they seem to have developed in severity through the generations. This has also helped me accept that there was nothing I could have done differently to prevent developing UC and FM, and that it was not my fault.

I am also learning to accept that my body will likely never be completely healthy, and therefore my symptoms may be unpredictable and difficult to manage. I know that I may also be prone to other health problems, and have to be extra careful. Most of the time I have quite good days, and I can go to work or spend time with loved ones without any problems at all. However, I have bad days, and even very bad days. There are days when I feel bloated and have painful cramps and/or on and off all day, or for several days in a row, and the only way to treat it is to give my belly time to recover, which often involves several trips to the toilet. The worst days are when I have to force myself to get out of bed in the morning after only having a few hours’ sleep, because I have had a bad stomach ache during the night. If this happens a few nights in a row, I will then inevitably catch a cold or something similar, which of course makes me feel worse. Sometimes, all I can do is lie down in bed with a heat pack on my belly, and try to rest.

In retrospect, these experiences have made me realise that I am stronger than I originally expected. Even if a flare slows me down for a while, I take pride and comfort in the fact that I have always been able to get through it. My favourite quote is, “That which does not kill us, makes us stronger,” by Friedrich Nietzsche, and I find that this helps motivate me during the bad days. I am learning to understand my belly and how it responds to certain things, and I am getting more used to feeling when a flare is coming on, so I can brace myself when it hits. I can feel when things are moving in my belly, and I am starting to work out what the different feelings mean. Although the gurgles and hiccups sometimes alarm those around me, I am also learning to hear and feel what they mean – almost like how a mother can hear the differences in her child’s cries (if that makes any sense!). And because I am learning to understand my body and how to manage my symptoms, I am becoming even more determined not to let these conditions define me, or ruin my life.

I believe that this inner strength has helped me overcome other frustrations. I am starting to appreciate that although they may try, no one else can really understand what I am going through, and that is okay. Some people might make jokes or comments that are inappropriate and can be irritating, but I know that it just shows their ignorance. This is the result of a lack of awareness of IBD and IBS in society, and starting my blog is one way that I am helping to rectify that. My family, partner and friends do their best to help me with managing my diet and my symptoms, but they can still forget which are my worst trigger foods, and I often have to remind them. I now understand that it is not worth getting upset about this - sometimes I even have trouble remembering the whole list, so it is unfair to expect it of them. First and foremost, it is my responsibility to take care of myself and my belly, and any help and support from others is a bonus. It is also my responsibility if I have a weak moment with food. However, I also understand that if something does go wrong, this can have an impact on others too, and potentially ruin their plans, so I need to avoid this when possible.

Finally, I am also becoming more and more aware of the fact that I am actually luckier than most with my situation. Yes, I have two bowel conditions and that sucks, but both are relatively mild and under control. With the help of my medication, my UC has been in remission for several years – in fact, I have not had severe bleeding since that first major flare up prior to my diagnosis. Also, although FM is probably the most difficult food intolerance to manage, it is getting easier to work out my diet, and keep my belly settled. The stories I have read about other bloggers, celebrities, and other people in Facebook groups, have definitely put things into perspective for me. I am constantly reminding myself that it could be much, much worse. I also know that I am still quite young, and that the general pattern with these conditions is for the symptoms to worsen over time. While I hope that it will never be necessary, I know that there is a chance I may need surgery one day, so I will do what I can to prepare myself for this possibility.

To finish, I would like to give some advice to anyone reading this and reflecting on their own situation: learn everything you can, and listen to your belly. I feel that this is the best way to really understand and accept what is happening to your body, so you can get on with your life!

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Bad Belly Lingo

One thing that I struggled with when I first started researching bowel conditions and joined online groups was the particular “lingo” that is used within this community. Apart from all of the scientific and medical terms, there are also several acronyms and abbreviations, which can be difficult to decipher on your own.

Here is a list of the abbreviations and acronyms that I have seen and their explanations, perhaps this can help you as well:

• IBD – Stands for “Inflammatory Bowel Disease.”
• UC – Stands for “Ulcerative Colitis.”
• CD – Stands for “Crohn’s Disease.”
• IBS – Stands for “Irritable Bowel Syndrome.”
• IBS-C – Stands for “Irritable Bowel Syndrome with Constipation.”
• IBS-D – Stands for “Irritable Bowel Syndrome with Diarrhea.”
• IBS-A – Stands for “Irritable Bowel Syndrome Alternating.”
• IBS-B – Stands for “Irritable Bowel Syndrome Both.”
• FODMAP – Stands for “Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols.” Relates to the Low FODMAP diet.
• LI – Stands for “Lactose Intolerance.”
• FM – Stands for “Fructose Malabsorption.”
• HFI – Stands for “Hereditary Fructose Intolerance.”
• GF – Stands for “gluten free.”
• BM – Stands for “bowel movement.”
• FF – Stands for “fructose friendly.”
• SCD – Stands for “Specific Carbohydrate Diet.” Read more here.
• AIP – Stands for “Auto-Immune Protocol.” Relates to the Auto-Immune Paleo diet.
• GERD – Stands for “Gastroesophageal Reflux Disease.” Read more here.
• GI – Stands for “gastrointestinal.”
• Prep – Refers to “bowel preparation,” which is done before a colonoscopy.
• Spoonie – Someone with a chronic disease. Refers to the Spoon Theory.
• Dx – Symbol for “diagnosis.”
• Rx – Symbol for “prescription.”
• Flare – Refers to a severe episode of symptoms.
• 5-ASA – Stands for 5-aminosalicylic acid, otherwise known as mesalamine, which is a type of medication used to treat inflammatory bowel disease. Read more here.

Monitoring Bad Bellies

Last month I had another colonoscopy and gastroscopy, which now works out to be my about my fourth colonoscopy and second gastroscopy since my UC diagnosis. This week, I would like to share my experiences with this process, and best tips for how to get through it!

Disclaimer: I will be discussing the colonoscopy process as per my experiences in Australia, however they may differ slightly from your experiences, particularly in other countries. It is common for doctors to give out a “bowel preparation kit,” which will contain strict instructions for dietary restrictions and preparation materials, so please follow these instructions first.

DIETARY RESTRICTIONS

The first phase when preparing for a colonoscopy is to restrict your diet, which will help with cleaning out the colon. Cleaning out the colon is necessary to give the doctor a clear view during the procedure. This phase commonly begins from 48 hours before the procedure, and is a two-step process.

Firstly, on the second day before the procedure, you need to follow a low-fibre diet. I was given the following restrictions:

• No red meat
• No brown bread, cereals, or other foods containing whole grains or seeds
• No foods or drinks with a strong colour (especially red or purple)
• No fruit or vegetables, except for potato or pumpkin
• No full fat dairy products

Next, on the day before the procedure, you are restricted to a clear liquid diet until midnight. I was told that the following were approved clear liquids:

• Water
• Clear fruit juices
• Black tea or coffee (i.e. no milk, although sugar is allowed)
• Cordial
• Clear broth
• Clear jelly (as long as it is not red or purple) - my favourite is Aeroplane Jelly (see image below)
• Icypoles (or popsicles)
• Clear soft drinks
• Clear sports drinks

My main tip for this part of the preparation process is to stay at home on the day before the procedure if possible. Because there are no carbohydrates allowed on the liquid diet, it can be difficult to maintain high energy levels, and therefore you may feel quite tired.

My second tip is to always have a drink or other liquid in your hand or by your side at all times, as this will encourage you to keep hydrated. Additionally, constant sipping will help to fill your stomach, and therefore keep hunger at bay, albeit temporarily.

Also, please note that you may need to stop taking medications or supplements during the liquid diet day, as this can complicate the bowel preparation process, so make sure you check on this with your doctor.

BOWEL PREPARATION

Next, the “fun” part – the laxatives. In fact, this is the part that I dread the most when it comes to having a colonoscopy, and I have to confess that because of this, I often put off having the colonoscopy done for as long as I can!

Every time I have had a colonoscopy, I have been given PicoPrep to take, which primarily contains sodium picosulfate, magnesium and citric acid. There are many different types of laxatives that are used in bowel preparation, and some of them are listed here.

I was given three sachets of PicoPrep, and instructed to take them as per the below schedule. Each time, I had to dissolve the powder into a glass of warm water, and then drink it slowly.

• First sachet at 5pm.
• Second sachet at 6pm.
• Third sachet at 7pm.

Here are my tips for this part of the process:

• Add a clear liquid like cordial to the water with the PicoPrep, which will help cover the flavour. The PicoPrep itself is very sour, I believe due to the fact that it contains citric acid, and it also has a bad smell, so having something else with it can help to get it down. My cordial of choice is lime cordial (see photo below) - although this now means that I can’t drink lime cordial at any other time, or any other lime-flavoured drink, because it always reminds me of having a colonoscopy! 

• Stay close to the bathroom, as it will only take an hour or two for the laxative to take effect, and after that you will need to make very frequent trips to the toilet. Also, make sure you have plenty of toilet paper in the house, as you will need it!
• Keep drinking in between doses, as this will keep you hydrated and help with clearing out the bowel. 
• Watch TV or read a book during the night, as this will help to pass the time and distract you from what is happening in your belly. However, make sure that you also set alarms, so that you don’t lose track of time and forget to take the next dose. 
• This time I found that the PicoPrep made me feel nauseous, and perhaps my anxiety about what was to come was making the nausea worse, so it was difficult to drink the last dose. To help with this, I took sips every 5-10 minutes until I got it all down, and also lay down in between sips to help settle my stomach. 
• If possible, ask someone to stay with you during the night, just in case something goes wrong or you need help – and to keep you company during the ordeal! 
• I found that having chicken noodle soup, with the noodles and other solid parts strained out, helps to make you feel like you are eating real food. Also, having jelly helps you feel like you are eating something more substantial.
• Go to bed early if you can, as you will need as much sleep as possible. However, getting a good sleep will not be easy as you will still need to make trips to the toilet during the night. For me, the best sleeping position when you do go to bed is to lie on your back, as this will help settle things in your belly for a little while. 
• I often experienced pain and chafing due to the frequent toilet trips, and sometimes using regular toilet paper made things worse. Therefore, I suggest alternating toilet paper with wet toilet wipes like these Kleenex ones if they are available to you, as they can sometimes be a bit softer on the skin. 
• Remember that you must stop drinking any liquids at midnight, and cannot have anything in the morning either.

THE PROCEDURE

Firstly, I will explain what happens during the procedure, for both a colonoscopy and a gastroscopy.

During a colonoscopy, the doctor uses a colonoscope, which is a long, thin plastic tube with a camera and light at the end. This is inserted through the anus, and used to inspect the inner lining of the large intestine. Biopsy samples are also taken for testing. A colonoscopy is commonly used to monitor IBD symptoms, but it is also used to check for signs of bowel cancer. Particularly for those with IBD, it is recommended that you have a colonoscopy done every three years on average, however this depends on the severity of your symptoms. In my case, my doctor has asked me to have one every two or three years. Again, it is best to discuss this with your doctor.

A gastroscopy is similar, but instead an endoscope (also a long, thin plastic tube with a camera and light at the end) is inserted into the throat, and used to inspect the inner lining of the oesophagus and stomach. A gastroscopy can be used to look for ulcers or polyps, however in my case it was used to check for possible damage caused by acid reflux.

Now I will describe the details of the procedure, which again is based on my personal experience. On the day, I was asked to come to the day clinic around 30 minutes before the appointment time to fill out paperwork and settle payment, and was then asked to change into a hospital gown. As part of this, I also had to remove all jewelry. Next, I was taken into one of the operation rooms, and asked to lie down on my side with my knees bent. I was then sedated while the procedure was performed, which took around 30 minutes.

Remember that you cannot drive after being sedated, so make sure you have someone with you who can drive you home afterwards. My doctor also recommended that I have someone stay with me for the rest of the day, in case there are any complications.

RECOVERY

In my experience, recovering from a colonoscopy is also a two-step process – on the day, and during the following 2-3 days.

On the day, after being brought out of the sedation, the immediate recovery process in my experience has always been as follows:

1. Continue lying down until you have woken up properly and feel more lucid, during which time the nurse will check your blood pressure.
2. The nurse will then lead you into the recovery room, where you are asked to sit down, and are given some water and food, such as sandwiches. This was the first time I have had a colonoscopy since my FM diagnosis, and I found this part problematic, as the sandwich selection was limited and not fructose friendly. In the end, I just had a plain cheese sandwich as it was better than nothing, but only had a few mouthfuls, as I did not want to get a stomach ache as well.
3. While you are in the recovery room, the doctor will come and tell you his initial observations and give you a written report.
4. After about 15 minutes, you will be given permission to change back into your clothes, and then led into the waiting room so you can go home.

After going home, I usually find it best to take it easy for the rest of the day, and sleep early that night. I am usually very tired, and don’t feel up to doing much anyway. Also, I try to only eat simple and “safe” foods, so as not to agitate my belly further.

In my experience though, it usually takes 2-3 days before I feel like I have fully recovered, both in terms of the fatigue and stabilising my belly. I still went to work that week, but tried to take it easy as much as possible and stick to “safe” foods.

THE FOLLOW UP

Finally, you will often need to make a follow up appointment with your doctor, particularly to hear the results of the biopsies.

I am happy to say that my results for the colonoscopy were good, and my UC is still in remission! However, unfortunately the doctor discovered that there was some persistent but minor damage in my oesophagus due to acid reflux, so I have been given a prescription for Nexium to help with this. On a positive note though, the damage has reduced since the last time I had a gastroscopy.

Do you have any other tips for surviving a colonoscopy? Please comment below.

Bad Bellies and Travel

Before I begin, I hope that you have enjoyed your holidays, and for those that celebrate it, had an enjoyable Christmas and New Year! 

I apologise as well to my readers that I have not posted for a few weeks – I had been very busy at work, and then was travelling for Christmas, so did not have time to write.

For my first post of 2015, I am going to write about my experiences with my belly over this recent holiday.

POTENTIAL ISSUES WHILE TRAVELLING

I have found that this time around, being the first proper trip overseas since my FM diagnosis, I have struggled more with my belly on this holiday compared to on previous trips. I was travelling in Hong Kong for a week, and had a lot of trouble with reflux in particular.

I believe that there are a few possible reasons for this, as I have listed below:

• Ingredients used in food – Due to the different cuisine and language barriers, it was often difficult for me to ascertain the exact ingredients used in the foods I was eating. Since my belly often reacted negatively after eating, it was likely that some of the ingredients were also my trigger foods.
• Availability of specialty foods – From my experience, particularly in Asian countries, there is less acceptance or understanding of bowel conditions and food intolerance. This certainly seemed to be the case in Hong Kong, as it was difficult to find specialty foods, or restaurants that will cater to my dietary requirements.
• Different water – In general, people with bad bellies can be more susceptible to having problems with unclean water, or even just water that their body is not used to, so this may have contributed to my symptoms.
• General stress of travelling – Travelling can be stressful in general, as you are worrying about flights, packing, accommodation, and so on. As previously discussed in this post, stress can have a negative effect on bad bellies, so this could have also been a factor for me.

MANAGING SYMPTOMS WHILE TRAVELLING

For those with IBS and/or IBD, travelling can generally be challenging. Here are a list of trips for managing symptoms while travelling (summarised from here and here):

• Bring plenty of medication – Make sure you bring plenty of medication with you, and get more from your doctor or pharmacy before you leave for your trip if necessary.
• Access to bathrooms – Where possible, try to be aware of the bathroom situations on transport and in the areas you are travelling ahead of time, in case an emergency arises. If you feel more comfortable, request an aisle seat on planes. It could also be a good idea to look up how to ask “Where is the bathroom?” in the local language.
• Bring an “emergency kit” – I have not done this before, but may do so in future. This means having some supplies in your hand luggage in case things go wrong, and may include items such as a change of clothes, spare medications, copies of medical documentation, baby wipes, snacks, tissues, and so on.
• Be careful with the water – Where possible, always boil water before drinking it, or buy only bottled drinks. Also be careful when eating uncooked vegetables and fruit. This will also help you to avoid “traveller’s diarrhoea,” which can be worse for people with IBS or IBD.
• Bring snacks – Rather than avoiding foods and therefore not eating enough, bring your own snacks so you know that you always have something that you can eat.
• Speak to people around you – If necessary, speak to your friends or people such as flight attendants about your condition upfront, so that if there is an emergency, they will be more understanding and better able to help you.
• Avoid stress – Try to relax before and during the trip as much as possible, so that you keep your belly as stable as possible. Ways to do this involve carefully planning your trip in advance, including making sure you are properly covered with travel insurance, and being careful with eating on the day of travel.

Do you have any other tips for managing bad bellies while travelling? Please comment below.