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.

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!

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.

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.

Recipes for Bad Bellies: Fructose Friendly Mason Jar Fruit Salad

Following on from last week’s post, this week I decided to try making a Mason Jar Fruit Salad.

I adapted this recipe for Triple Berry Nut Salad. In order to make the salad more fructose friendly, I substituted maple syrup for the honey. And, just because I like them, I added in some kiwi fruit, swapped the whole almonds for shaved almonds, and had some Greek yoghurt on the side. Greek yoghurt can also be generally better for bad bellies than other yoghurts, as it is less likely to contain thickeners made from wheat or other ingredients with high amounts of fructose or fructans, and tends to contain less lactose than other yoghurt.

Here is my recipe:

Ingredients

For the dressing:

Juice from half an orange

Juice from half a lemon

2 tsp of olive oil

1 tsp of maple syrup

For the salad:

1 punnet of strawberries, quartered

½ cup of blackberries

½ cup of raspberries

1 kiwi fruit, sliced

½ cup blueberries

Approx. 2 tsp of shaved almonds

Greek yoghurt

Instructions

• Combine the orange juice, lemon juice, olive oil and maple syrup for the dressing, and mix well. Add this to the bottom of the jar.
• Add the blackberries and raspberries.
• Add the strawberries.
• Add the kiwi fruit.
• Add the blueberries.
• Because the shaved almonds will quickly become soggy from touching the fruit, put them in a zip-lock bag. Then, fold up the bag, and put it in the top of the jar.

• During your lunch break at work, tip out the salad onto a plate, add the yoghurt to the side, and enjoy.

Note, however, that this recipe does not work with frozen berries! I learned this the hard way when the time came to eat the salad, and I discovered that there was now a lot more juice in the jar than before. Below is a photo what happened when I tipped the salad out onto a plate. It was a little difficult to eat like this, but still tasted okay. I realised that the frozen berries must have released more liquid as they defrosted overnight. Additionally, the fruit had compacted down quite significantly since the day before when I had prepared the salad, and I believe this is because the fruit had also softened during the night, possibly also due to the berries defrosting. I have therefore also concluded that this salad must be eaten quickly, and can only be made with fresh fruit!

Recipes for Bad Bellies: Fructose Friendly Mason Jar Salad

Last week, I discovered a new phenomenon – the Mason Jar Salad. By layering ingredients into a Mason Jar (or something similar), this is a very clever way to make a salad, especially to have for lunch at work.

ABOUT THE MASON JAR SALAD

The basic principle of a Mason Jar Salad is the way you layer the ingredients in the jar, particularly to keep wet and dry ingredients separated, to ensure that the salad stays fresh. Additionally, after you then tip the salad out onto a plate or into a bowl, the ingredients should mix together well, i.e. with the dressing on top, and leafy greens on the bottom. Here is a summary of the basic formula:

• First layer (bottom of the jar): salad dressing
• Second layer: “hearty” vegetables (e.g. tomatoes, cucumbers, carrots, capsicum, broccoli, celery)
• Third layer: other vegetables (e.g. beans, mushrooms, corn, avocado)
• Fourth layer: grain layer (e.g. pasta, rice, couscous, quinoa)
• Fifth layer: protein (e.g. chicken, fish, eggs, other meat) and cheese
• Final layer (top of the jar): leafy greens (e.g. lettuce, spinach, cabbage), nuts and seeds

As long as you keep to this basic formula, even if you are not using ingredients from all the layers, the salad should keep fresh in transport to work, and fall out of the jar correctly.

MASON JAR SALADS FOR BAD BELLIES

There are many websites that provide a good range of recipes for Mason Jar Salads, such as this one, or this one. Just by doing a search on Google, you can find even more. However, most of these recipes are not completely suitable for those with fructose malabsorption, or IBS in general – but they are easily adaptable.

This week, I chose to adapt this recipe for a Greek Chicken Mason Jar Salad. Most of the ingredients in this recipe are on the low-fructose content list, but I still made a few small changes. First, I did not put in any salad dressing, because pre-made ones tend to contain ingredients that affect my belly, such as garlic. Additionally, I am not a big fan of olives, so I substituted them for carrot. And finally, I added in parmesan cheese, for a little extra flavour, and pine nuts, for a bit of crunch.

Therefore, here is my recipe:

Ingredients

1 small-sized chicken breast fillet, cooked and sliced into small cubes

5-6 mini Roma tomatoes, chopped into halves

½ half of a cucumber, sliced and chopped into halves

1 medium-sized carrot, sliced and chopped into halves

1 small piece of feta cheese, chopped into small cubes

Approx. 1 tablespoon of parmesan cheese, shaved

Approx. ½ tablespoon of pine nuts, roasted

1-2 handfuls of lettuce leaves, chopped into medium-sized pieces

1-2 handfuls of spinach leaves

Instructions

• Add tomatoes, cucumber and carrot to the bottom of a small- or medium-sized Mason Jar (or similar - must be a glass jar with an airtight screw lid).

• Add the feta cheese and parmesan cheese.
• Add the chicken.
• Add the pine nuts, lettuce and spinach.
• Ensure that the ingredients are packed into the jar tightly, and then put on the lid.

• During your lunch break at work, tip out the salad on a plate or in a bowl (you may need a fork or spoon to help), and enjoy!

I was very happy with the result - the salad was still very fresh, and tasted really good! And my belly was completely fine. This is something I will definitely try often.

Have you tried making a Mason Jar Salad? Please share below.

Planning Meals for Bad Bellies

One of the things that I find most difficult about having two digestive disorders is planning my meals within the constraints of both, while also keeping to my budget. Some days, the question “What am I going to eat?” can therefore be very difficult to answer.

This week, I would therefore like to share my progress in this, and what I have learned so far.

MY GENERAL EATING PLAN

For several years, through school, university and now work, I have typically kept to the following daily meal structure: a small breakfast (usually some yoghurt), medium-sized lunch (like a sandwich or some fruit), and then my largest meal in the evening. This has been largely influenced by my general lifestyle – something quick as I leave in the morning, a slightly bigger meal in the middle of the day to keep me going at work, and then a good dinner when I get home and can relax. In particular, having yoghurt for breakfast seems to settle my stomach in the morning, which I believe is due to the probiotics in the yoghurt. Occasionally, I will also have some small snacks during the day, such as some biscuits or nut clusters, and try to keep hydrated as much as possible. This is the general pattern on weekdays, as I work full time during the week.

On the weekends, things are generally a bit more relaxed – I might have a larger brunch after sleeping in, rather than two separate meals for breakfast and lunch. Additionally, it is more common for me to eat out on the weekends, either with friends or my partner, whereas during the week I tend to prepare my own meals at home.

As discussed in this previous post, there are several different diets that could be useful for managing IBD or IBS, and I generally follow a combination of two or three different diets, depending on the situation. Similarly, you can find several suggested meal plans for IBD and IBS, such as this one, this one, or this one. However, I have found that neither of these are completely suitable for my situation, and thus I continue to rely on my own process of trial and error.

DIFFICULTIES WITH MY MEAL PLAN

I do try to be strict with my meal schedule during the week at least, as it is recommended to have regular meal times to help with digestion, both with IBD and IBS. There are a few factors that can make this difficult for me however, as summarised below:

• I am not the best cook. – Because I don’t seem to have much of either a talent or instinct for cooking, I find that cooking can take a lot of effort, and as a result, I often end up cooking very basic meals. Sometimes this can be good for avoiding trigger foods, but at the same time it means that I often lack variety in my meals.

• Specialty foods or ingredients are often expensive, or difficult to find. – While I try to be strict about avoiding my trigger foods, this can sometimes be quite costly, as specialty foods, often found in the health food aisle of the supermarket or in specialty supermarkets, are often more expensive than other “regular” foods. Additionally, although this it is becoming more common in Australia due to products by GlutenFree4U and Dr. Sue Shepherd’s Low-FODMAP range (see image below), it is often quite rare to find foods that are suitable for people with FM.

• It is easy to be lazy after a long day at work. – As discussed above, I am not the best cook, and when you add feeling tired after a long day, cooking can be the last thing I want to do!
• Sometimes I lose my appetite during a flare. – On days where I am feeling bloated or have a stomach ache, eating and cooking are often the last things on my mind.
• It is more difficult to avoid trigger foods when eating out. - As previously discussed, eating out can add an additional layer of complexity for avoiding trigger foods, as you often have less control over what you eat, and restaurants are not often able to cater for food intolerances – but this is becoming more common.

I am slowly working on my cooking skills and learning new recipes, but this has been a slow process. To help with this, I make sure to have leftovers to put in the freezer at much as possible when cooking, and when eating out, I look for restaurants or cafes that can cater to dietary requirements.

Do you have other suggestions for planning meals for IBS and/or IBD? Please share below. 

Bad Belly Aches

For sufferers of IBD and/or IBS, stomach aches and abdominal pain are an extremely common phenomenon, and very often taken as a given. For many, including myself, there is often a silent struggle to manage the pain, while also not letting it take over our lives. However, not all belly aches are the same.

This week, I would therefore like to share the different types of belly aches I have experienced.

TYPES OF BELLY ACHES

As the below image shows, there are numerous causes of abdominal pain. For our purposes, however, I am just going to discuss the ones that are directly related to the digestive tract.

According to this 2012 article, there are two main types of abdominal pain that occur with IBD: visceral, and somatic. Visceral pain is categorised as occurring within internal organs, and the exact cause is often difficult to identify as it is often a dull and inconsistent sensation. Somatic pain, on the other hand, usually has musculoskeletal sources, and tends to be a much more intense pain.

I feel, though, that these two categories are insufficient to cover all of the types of abdominal pain I have experienced, particularly because they are very general categories. Instead, I prefer to identify my types of abdominal pain based on what I believe has caused them, and how they feel:

Indigestion pain – This pain often occurs if I eat foods that contain too much fructose or fructans, and often starts very quickly after eating. It is a quite intense pain, and is located in the area of my stomach, directly below my ribs. Depending on what I have eaten, it can last between 30 minutes and 2 hours.

Bloating pain – This type of pain often follows indigestion, and is localised lower down in my abdomen, in the area of my intestines. When I am bloated, I often find that the pain quickly increases if I am wearing form-fitting pants, due to the pressure on my belly, so I have to switch to tracksuit pants if possible. Sometimes the bloating can be improved through passing wind, but it can often take some time before it settles down completely, perhaps 2-3 hours on average. Additionally, the pain can ebb and flow as the gas moves through the bowel, so it is not a constant pain.

Hunger pain (1) – This type of pain is a strange one, and appears to be less common among those with IBD and IBS, but I have noticed happening to me a few times over the last 2-3 months. I believe I have experienced two different types of hunger pain: hunger pain that happens before meals, and hunger pain that happens after meals. The first type of hunger pain seems to happen because I have not eaten quickly enough after starting to feel hungry. This is often because I am meeting others for a meal, and have to wait for them to arrive and for our food to be prepared. This type of hunger pain feels similar to indigestion, but seems to be caused by hunger instead, as my stomach was always empty when it happened. It can sometimes last for 1-2 hours, and is not immediately helped by eating. Therefore, I am now very careful to have a precise eating schedule as much as possible.

Hunger pain (2) - The second type of hunger pain I have experienced was much more intense, and occurred with other symptoms. The first (and so far, only) time I noticed this pain was late one night when returning home after dinner, and although I had tried to be careful with what I was eating earlier that night, I started feeling very bloated while driving, and also slightly light-headed. Thankfully, I was able to get home safely, but by that point I was also feeling nauseous and unsteady on my feet. I had thought that it would be fixed by sitting on the toilet, but if anything, this made the pain and dizziness worse. The pain was very intense, and it felt like my stomach was being squeezed and twisted like a wet towel. I went to bed, and when I woke up 3-4 hours later, it was as if nothing had happened! I now believe that perhaps I had not eaten enough for dinner earlier that night, hence I quickly became very hungry again. To avoid this, I try to have little snacks with me to eat during the day if I start to feel hungry, and am also very conscious of eating enough at meal times.

Diarrhea pain – This pain often happens when I feel diarrhea coming on, and sometimes happens with nausea as well. The pain is felt lower in the abdomen, in the area of the colon, and bowel movements can be very uncomfortable. Depending on what has caused the diarrhea, it can last for 30 minutes or 24 hours.

Constipation pain – This type of pain occurs when constipated, and usually happens when I am attempting to have a bowel movement. There are usually be short, stabbing pains in the anal region as the pressure builds, and there is also some residual pain in the area following the bowel movement (if successful).

MANAGING AND TREATING ABDOMINAL PAIN

There are many methods to manage and treat abdominal pain, which mainly fall under three categories: pharmacological, behavioural, and procedural. Firstly, pharmacological methods include anti-inflammatory medications, such as those commonly taken by people with IBD, and general painkillers. Behavioural methods are largely focused on promoting relaxation and reducing stress, so as to help reduce symptoms. Finally, procedural methods involve treatments such as acupuncture and nerve blockers, which aims to directly treat the pain. If these methods are insufficient, however, surgery may be also necessary, such as a colectomy.

In my experience, my IBD medication seems to somewhat lessen the abdominal pain, but does not completely prevent it. Therefore, I manage my pain in two stages: prevention, and treatment. In other words, I do the best I can to avoid being in situations that will cause abdominal pain or make it worse, such as being careful with my diet and avoiding stressful situations. Additionally, as previously discussed, it is recommended that people with IBD have smaller meals and snacks throughout the day, as this can make it easier for the body to digest the food. If the pain still occurs, however, I then do what is necessary to treat it, and thereby help it to alleviate quickly. This can include sitting on the toilet, passing wind, or using a heat pack. My favourite type of heat pack is a wheat bag, like the one in the photo below:

Do you have any tips for managing abdominal pain? Please share below.

Bad Bellies and Diet

In my opinion, the most frustrating thing about having FM is its sheer complexity, as fructose is in almost every food. Additionally, having UC adds an extra layer of complexity for me. From what I understand, this is a common problem in general for people with IBS and/or IBD. Many people, including myself, have therefore tried to simplify things by creating special types of diets, hoping to make things easier to manage on a daily basis.

This week, I am therefore going to share some of my research into these types of diets, as well as how I have adapted them for my own needs.

COMMON DIETS FOR BAD BELLIES

In my research and so on, I have often come across discussions about different types of diets that are suitable for IBS and/or IBD. Here is a summary of the ones that I have read about most:

The Gluten-Free Diet – This diet is mainly designed for people with Coeliac Disease, and focuses on eliminating all foods containing gluten (wheat, rye, triticale and barley). This diet can also be useful for people with FM, as many foods that contain gluten also contain high amounts of fructans. Here is a good summary of this diet. For those with FM, however, this diet can still be risky, as mainly gluten free products use corn flour as a substitute for wheat flour. Additionally, specialty gluten-free products can be expensive, so some people can find it difficult to maintain this diet.

The Low FODMAP Diet – The Low FODMAP Diet was developed by Dr. Sue Shepherd in 1999, as a form of treatment for people with IBS, and has two phases – first, restricting all high FODMAP foods for 6-8 weeks, and then developing the diet to suit the individual’s condition. FODMAP stands for Fermentable Oligosaccharides (includes fructans), Disaccharides (includes lactose), Monosaccharides (includes fructose) and Polyols (includes sorbital and xylitol). Dr. Shepherd has now began developing her own range of "FODMAP Friendly" foods, as well as encouraging other companies to make their foods "FODMAP Friendly." Foods identified as "FODMAP Friendly" carry the below logo. While this is a very good diet to help with identifying trigger foods and tolerance levels, in some cases it may not be appropriate, as some people only have problems with one or two types of foods, or their problem foods may not be fully covered by the FODMAP categories.

The Paleo (Paleolithic) Diet – Reportedly the most popular diet in the world in 2013, the Paleo Diet is based on the premise that we should only eat the same sorts of foods as our ancestors did, and keep to the types of foods that our bodies are built to digest. In essence, this means no processed foods. Here is a good resource for understanding this diet. This diet is said to be very healthy and this has been supported by several studies. Some are still sceptical however, arguing that this diet is not necessarily sustainable, as the life expectancy of our ancestors was much lower than it is today.

Going Organic – This diet focuses on consuming only foods grown naturally, in order to avoid consuming harmful chemicals and environmental damage. This includes avoiding plants grown using pesticides or fertlisers, avoiding meat from animals given growth hormones or other drugs, and only using products from animals raised in a “free range” environment. Here is a useful summary of the main arguments for going organic. This diet can also be problematic however, as it can be difficult to determine whether foods are definitely organic, and organic foods are often more expensive.

The High-Fibre Diet – The High-Fibre Diet is often recommended for people with IBS-C, as previously discussed in this post, as it can help to reduce constipation. The most fibre-rich foods are often fruits, vegetables, and whole grains. However, this diet is not suitable for people with IBS-D, as too much fibre can cause diarrhea. Here is a good list of fibre-rich foods. Additionally, it can be difficult for people with FM to maintain this diet, as many high-fibre foods also contain high amounts of fructose or fructans.

The Low-Fibre (Low-Residue) Diet – The Low-Fibre Diet is therefore recommended for people with IBS-D, as it can help to reduce diarrhea. It is also recommended for people who have had bowel surgery. Rather than completely eliminating all fibre, this diet focuses on consuming only soluble fibre. Here is a useful summary of high- and low-fibre foods.

The Low-Fat Diet – This is of course a very common diet for weight loss, however it is also recommended for people with IBS because high-fat foods usually have lower levels of fibre, and can therefore cause constipation. Here is a good guide for following the Low-Fat Diet. When following this diet though, it is important to remember that not all fats are unhealthy, as discussed here.

The above diets are generally more appropriate for managing IBS, however some aspects of them are also applicable for those with IBD. As discussed in this article, people with IBD should avoid high-fibre and high-fat foods. In addition to this, it is important to keep hydrated, foods with prebiotics or probiotics may be helpful, and vitamin supplements may be necessary (as discussed in this previous post).

Have you found a diet that works best for you? Please comment below.

MY DIET

While all of the above diets have their benefits, in my own experimentation so far, I have found that neither of them are quite right for my situation. This is because none of them are specifically tailored for people with FM or UC. Therefore, through a combination of trial and error, elimination and substitution, I am slowly developing my own diet.

I have previously discussed my main trigger foods and tolerance levels, and these elements have helped guide me when I am thinking about what to eat each day. Additionally, I have found that different types of diets can be useful for certain situations. For example, when I am going to a function or event, it is sometimes easier to just list “gluten-free” for my dietary requirements. When cooking for myself, however, I will usually aim for something closer to the Low FODMAP diet - selecting the aspects applicable to my FM - as I am able to have more control over the ingredients used. Additionally, if I am having trouble with my bowel movements, I may try to either reduce or increase my fibre intake.

In my experience, and also in my general opinion, there is no such thing as a perfect diet, and it is neither healthy nor sustainable to be too restrictive in what you eat. As I mentioned in my first post, restricting my diet too much following my FM diagnosis just resulted in weight gain and fatigue. I am therefore focusing on what my version of healthy is, both because of, and in spite of, my FM and UC.

Have you had similar experiences with your diet? Please comment below.

Bad Bellies and Sleep

I have previously touched on the affect that sleep patterns have on the digestive system, but what about the effect that the digestive system has on your ability to get a good night's sleep?

For the last 2-3 years, I have struggled to get a full night's sleep. I did actually get a full night's sleep on one night last week, but I don't remember the last time I slept through the night before that, and it has not happened since. I have experienced two main types of sleeping difficulties: tossing and turning all night, and waking up two or three times during the night. While I have gotten used to it over time, and can cope on only a few hours of sleep most days, I have noticed that it can have a negative effect on my energy levels. I believe this has actually been a factor in the fact that I have had two car crashes in the last 18 months – thankfully, I am fine, but I can’t say the same for the cars! Additionally, I have found that if I have several nights in a row where I have slept very badly, I will inevitably get sick, usually with some form of cold or the flu.

However, for a long time I have struggled to figure out why I have had difficulties with sleeping for so long. Of course there are some nights where it is obviously due to things like stress from work, a bad stomach ache from a flare-up, or as a result of other symptoms from having a cold, but on other nights there doesn't seem to be a logical explanation.

So, I have been doing some research. As it turns out, I am not alone - difficulty sleeping and insomnia are common complaints among people with fructose malabsorption. As discussed on this blog for example, people have trouble waking up during the night, and being unable to fall asleep. Although it focused on the link between fructose malabsorption and depression, and not the link with sleep, this study concluded that there is a tendency for those with fructose malabsorption to digest L-tryptophan. This is because high levels of fructose in the body can interfere with the absorption of L-tryptophan in the digestive tract. L-tryptophan is an amino acid that is responsible for producing hormones such as serotonin and melatonin, among other things.  Melatonin helps control the body’s sleep cycle, and therefore with less L-tryptophan and as a result less melatonin, this means that those with fructose malabsorption can experience disruptions in their sleep patterns.

After reading this information, I have noticed in retrospect that when I have had a particularly bad belly day, I do seem to have more trouble with sleeping compared to other days. Additionally, the time when I started having sleep difficulties seems to correspond with when I first experienced symptoms to do with my fructose malabsorption. This is something I am going to focus on more moving forward, and perhaps through experimenting with my diet, I will be able to sleep through the night more often! I will share what I work out later on :)

Have you noticed that your sleeping patterns are connected to your diet and IBS? Please comment below.

Talking about Bad Bellies

Lately I have been reflecting quite a bit on the different ways that people talk about and respond to chronic disease, and in particular in my experiences with IBD and IBS. In my experience, I have found that there is a relatively low level of understanding and awareness about these diseases among the general public. For example, many people confuse my fructose malabsorption with an allergy. (This quiz is a good way to clarify the differences if you are unsure yourself, or just to test your own knowledge).

Additionally, because IBD and IBS often involve “toilet issues,” which are generally seen as things you don’t discuss in public, I have found that there is often a mixture of embarrassment, disgust, shock and pity when I talk to others about what I am going through.

This week, I thought I would therefore write about the range of experiences I have had with this, and share a bit more about my individual symptoms.

MY SYMPTOMS

As discussed in previous posts (like this one, or this one), my symptoms often seem to be due to a combination of my IBD and IBS. This can sometimes mean that within a few hours, I can have several different things happening in my belly. Here is a quick summary of my main symptoms:

Bloating – This often happens when I have eaten foods with high fructans content, such as bread.

Flatulence – This happens regularly most days, and is worst after eating foods high in fructose or too much dairy. It is also quite common for me to have a lot of gas in the mornings, which I believe are due to a combination of my FM and UC.

Stomach pain – This also mainly after eating foods with high fructans content, and can also sometimes happen when I am hungry, which I believe is due to my UC.

Abdominal cramps – This seems to be more of a symptom of my UC, and often occurs with constipation.

Acid reflux – This usually occurs after eating foods with high fructose content, such as apple and onion.

Alternating constipation and diarrhoea (IBS-A) – This seems to depend on what I have eaten during the day, as well as my stress levels and hormonal changes (such as during my period).

Difficulty with sleeping – This is usually worse after eating too many problem foods during the day.

SUFFERING IN SILENCE

In my opinion, one of the biggest barriers for understanding IBS and IBD is the negative stigma around them. I have experienced having people tell me that it is “too much information” when I talk about my symptoms, or that I am “causing too much trouble” and just “making excuses” when I mention my dietary requirements. Up until recently, I was often embarrassed about my symptoms, and did everything I could to hide them because of these kinds of attitudes. I wouldn’t speak up when I was in pain, even when I could hardly stand, would never break wind in front of my boyfriend, even in private, and was hesitant to tell people about my dietary requirements when going out to eat, even if they asked. 

It seems to me that this is a common way for most sufferers of IBS and IBD to deal with their illness, and I think this is why many people have been shocked when I have told them about my illnesses for the first time. Because of this, I can relate to articles such as this one, which highlights things people say that can be hurtful when they don’t understand what you are going through, such as “You don’t look sick.” In a lot of ways, because most people don’t understand them, it seems that diseases like IBD and IBS are taken for granted, and aren’t seen as being “that serious.”

EMBRACING MY ILLNESS

To help change my own perception of my illnesses, I have recently joined some support groups via social media, and I have been pleasantly surprised by the support and positivity in these groups. I has been heartening to find that there are thousands of people out there with similar symptoms and experiences to my own, and who are looking for answers to similar questions. Through these groups, I have finally felt a sense of solidarity, and of community.

Through these groups, I have also heard about people like Bethany Townsend, followed by Daniel Searle, and others, who are defying social stigma and no longer hiding their colostomy bags – showing they are not ashamed of their condition. Although I am fortunate to not need a colostomy bag at the moment, I have still been able to relate to these people, and they have inspired me to be more accepting of my own conditions. This is also a great article, as it talks about embracing your illness as part of you. I would like to be able to reach this point with my conditions as well.

Have you had similar experiences when talking about your illness, or do you have inspirational stories to share? Please comment below.