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.

Types of Bad Bellies: IBS-C vs. IBS-D

When a person suffers from IBS, there are three main ways that the bowel usually responds: constipation, and diarrhea, or alternating between the two. IBS with constipation is commonly abbreviated as IBS-C, IBS with diarrhea as IBS-D, and IBS with alternating symptoms as IBS-A. For some, this can make it easier to treat IBS, but for those who have a combination of the two, like me, it can make things even more difficult.

Disclaimer: I am not a medical professional. The below comments are based on my own research, and are only meant to be used as a guide. Consult your doctor to help identify the best treatment options for you.

TREATING CONSTIPATION WITH IBS-C

Constipation can be treated with dietary changes, laxatives, and fibre supplements. As previously discussed, dietary changes can help with IBS in general, as avoiding problem foods can help improve symptoms. To help with constipation, however, it can help to add fibre-rich foods to your diet as well, and increase your intake of water. Here is a good list of foods with a high fibre content, and here is a useful guide for increasing your daily fibre intake.

Some of these foods may not be suitable for those with food intolerances though, so fibre supplements can be a good alternative. The most common forms of fibre supplements are wheat bran, corn fibre, calcium polycarbophil, and psyllium. However, keep in mind that while fibre can help with constipation, it may not help with other IBS symptoms, and taking fibre supplement too often can even worsen these symptoms.

Laxatives can be a good quick fix, but the effect is often temporary, and it is not a good for your body to use them regularly.

TREATING DIARRHEA WITH IBS-D

Diarrhea is also generally treated through dietary changes, for example avoiding fried foods, or perhaps even decreasing your fibre intake. Soluble fibre is often best for treating diarrhea because they help to slow digestion, whereas insoluble fibre tends to have more of a laxative effect.

On the other hand, diarrhea can also be treated with medications like Imodium, but it is best to discuss this with your doctor.

TREATING BOTH SYMPTOMS WITH IBS-A

If you have both symptoms, it is best to speak to your doctor about the best way to manage them, as alternating between treatments for constipation and diarrhea can actually make the IBS symptoms worse.

I believe that my IBS-A is related to my UC, as diarrhea and constipation are also common symptoms of IBD. My medication seems to help with these symptoms, but I am still trying to work out how to manage my diet as well.

Do you suffer from IBS-C, IBS-D, or both? Do you have any tips for managing them? Please comment below.

Recipes for Bad Bellies: Spaghetti with Herbed Beef Meatballs

Here is my first cooking-related post! I am not the best cook in the world, but I am making more of an effort these days to cook for myself more and try out different types of recipes that will have a minimal effect on my belly – and also improve my cooking skills in the process!

This recipe is based on the “Herbed beef meatballs with creamy potato nutmeg mash” recipe from the book Food Intolerance Management Plan by Dr. Sue Shepherd. I have made it with mashed potato before, with some green veggies as well, however this time I decided to try the meatballs with a tomato-based sauce and gluten free spaghetti instead. The sauce is my own recipe. Overall, this recipe should make enough to serve 4-6 people.

Ingredients 

For the meatballs:
600g lean minced beef

½ cup gluten free bread crumbs

3 eggs, lightly beaten

Your choice of herbs

Salt and ground black pepper

For the sauce:
1 bottle of tomato passata

1 can of diced tomatoes

Your choice of herbs

Salt and ground black pepper

1-2 packets of gluten free spaghetti, or other pasta
Cooking oil

Instructions

• Preheat the oven to 180°C.
• Combine minced beef, eggs, bread crumbs, herbs, salt and pepper into a large bowel and mix well. 
• Using your hands, roll the meatball mixture into walnut-sized balls. Spread them out on a large plate and cover with cling wrap. Put the plate with the meatballs into the fridge to set for 10-15min. Tip: The meatballs will be easier to roll if you wet your hands with water first. 
• Bring a pot of water to the boil to cook the spaghetti. Once the water comes to the boil, add the spaghetti and cook for approximately 10min, or to the consistency you prefer. 
• Heat up a large frying pan with a small amount of cooking oil. Depending on the size of your pan, fry 8-12 meatballs at a time, for about 5min per batch, so that the outside surfaces are sealed. 
• Line a tray with baking paper. Once the meatballs are fried on the outside, place them on the tray and put the tray into the oven to cook further while you fry the next batch. Once all of the meatballs are fried and in the oven, leave them for another 5-10min, or until browned and cooked through. 
• While the meatballs are cooking in the oven, combine the tomato passata, canned tomatoes, herbs, salt and pepper in the frying pan, and heat the sauce on a simmer. 
• Once the meatballs are cooked through in the oven, add them to the sauce and gently stir through so that the meatballs are coated in the sauce. Add to the cooked spaghetti and serve, with a little bit of cheese on top! 

Here is a photo of my efforts:

For this recipe, I used some very specific products for most of my ingredients, which I have found to be useful for limiting the amount of fructose in my meals. All of these were bought from my local Woolworths supermarket.

Here are some notes about these products, apart from the minced beef, eggs, salt and pepper, which are just standard products.

Bread crumbs – This time I used the “Gluten Free Bread Crumbs” from the shop GlutenFree4U, because it was also marked as being “fructose friendly,” but I have also previously used the “All Purpose Rice Crumbs” by Orgran.

Herbs – I used the “Italian Herbs stir-in paste” by Gourmet Garden, which is good because it is an easy way to add herbs, without any additives that could affect my belly.

Tomato passata – My favourite tomato passata is by Val Verde, and it is great for sauces because it is just a pure tomato puree, and therefore without any added onion powder or garlic.

Canned tomatoes – Along with the passata, I used diced tomatoes in this recipe to add some texture to the sauce. Because they do not have any onion or garlic, canned tomatoes are a good base to make your own fructose free pasta sauce. There are two brands that I like to use: Ardmona, and Macro.

Spaghetti – For this recipe I used the San Remo “Gluten Free Spaghetti” (see image below), which is a good option because it is made with a variety of flours. However, it is not completely fructose free, so it does sometimes make my belly a little bloated. Some other good alternatives that I have tried are potato gnocchi, in particular the Golden Pasta range because it has a very small amount of wheat flour, or the Buon Appetito rice pasta range, which are made with only rice flour. Tip: I have found that the gluten free pastas don’t freeze well after cooked, so be careful with your portion sizes when cooking the pasta if you are planning to have leftovers.

Eating Out - Special Occasions

As you would all probably know, eating out for any special occasion, be it an anniversary, birthday, or even Christmas dinner, is a very different situation than just going out for a meal with friends.

When you are going out for a casual meal with friends, there is generally much more flexibility in where you go or what you eat, so I find it can be easier to choose a meal that will be okay on my belly, i.e. with a limited amount of fructose content. However, with special occasions you may not be able to choose the restaurant, or in the case of something like Christmas dinner where your grandmother is cooking all the food, you will likely not have much control over what ingredients are used. Even if you do get asked about your dietary requirements, sometimes there is not too much they can do, especially since fructose is in a lot of foods. I find that in these situations, it can be especially hard to find that balance between being able to enjoy good food, and at the same time trying to minimise the impact on my belly. I often find that it can be a disappointing experience, as for some dishes the only thing I can do is to avoid them altogether.

My partner and I had our anniversary last month, and we went out for a fancy dinner to celebrate. The issue in that situation was that the restaurant had a seasonal tasting menu, so I didn't know what to expect with the food. I did tell them I was fructose intolerant, and asked them to avoid putting in too much onion and garlic, or apple for the dessert, as these are my top three problem foods, but I still didn't know what would happen.

As it turned out, they only changed one dish for me, as the original dish was crackers made with onions as the topping. The dessert did have some apple in it, but only a little bit in the sauce, so it wasn't a big deal. However, this still indicated to me that like most people, they did not understand fructose intolerance. In general my stomach was okay at first, but this was then ruined by the fact that something later caused both my partner and I to have diarrhea – we still can’t work out what it could have been. My partner was fine within a few hours, but it took about 24 hours for it to clear up properly for me. That is another thing that I have noticed - the effects with something like food poisoning are often worse for me than for others without belly problems, which must be because mine is generally more sensitive and unstable.

Have you had similar experiences when eating out, or have any tips to share? Please comment below.

Famous People with Belly Problems

Celebrities and public figures are often the people we see as our role models or sources of inspiration, and when we find out that they have the same sorts of illnesses, it can make us “regular” people feel just that little bit better!

During my research, I was surprised to find that there are numerous famous people that suffer from IBS and IBD. For their perseverance and achievements despite their illnesses, here is a list of the people that I find to be most inspirational.

ENTERTAINERS

Anastacia – I first found out about Anatascia having Crohn’s Disease shortly after being diagnosed with Ulcerative Colitis. Already a big fan of her music, I was very impressed by her story. Anastacia first noticed symptoms of Crohn’s Disease when she was a teenager, going on to have a large mass, lymph nodes and a piece of her intestine surgically removed. Initially, while taking liquid steroids to reduce her symptoms, she suffered from the side effects of hair loss and weight gain, and as a result became depressed. In her mid-20s, she slowly began to accept Crohn’s Disease as part of her life, even choosing to show the scar on her belly when performing (see image below), of which she was previously very self-conscious.

Amy Brenneman – Brenneman was diagnosed with Ulcerative Colitis during her second pregnancy. In 2010, she had surgery to have her colon removed, and consequently now uses a J-pouch. An Amercian actress, she is well known for her roles in TV shows Judging Amy and Private Practice, and is also an ambassador for the Crohn’s & Colitis Foundation of America.

Jennifer Esposito – An American actress, model and dancer, Esposito is known for her roles in I Still Know What You Did Last Summer and Blue Bloods. She has her own blog where she writes about her experiences with Coeliac Disease, aiming to help others with their experiences.

Cam’Ron (Cameron Giles) – This American rapper and actor has suffered from an ulcer and a hernia as well as IBS, and as a result gave up drinking to help reduce his symptoms. He has even written a song about his struggles with IBS.

Mike McCready – The lead guitarist for American band Pearl Jam, McCready first spoke publicly about his struggles with Crohn’s Disease in an interview with Fox News, describing difficulties with managing his symptoms while on tour. He is a good example of someone who is determined to live a full life even while suffering from IBD.

Cynthia McFadden – An American journalist with ABC News, McFadden has suffered with Crohn’s Disease since her first year of college, when her abdominal pain was nicknamed “George” by her friends. She had 15 feet of intestine removed in 1979, and now has very few symptoms. Despite her condition, she went on to become a very successful journalist, aiming to fulfil her dream of becoming like her idol, Walter Cronkite. She also works with the Crohn’s and Colitis Foundation of America to raise awareness about IBD.

Whoopi Goldberg – A very successful American actress and comedian, Goldberg’s version of the “Got Milk?” advertisement (below) featured lactose-free milk, due to the fact the she is lactose intolerant herself.

Jeff Hordley – Known for his role in British TV show Emmerdale, this British actor began to experience symptoms of Crohn’s Disease when he was 20 years old, and was diagnosed 6 years later. Hordley has spoken of having to drop out of classes and performances during his university studies due to his condition, and eventually had to have surgery to remove the affected parts of his bowel. He has discussed that running regularly and focusing on his fitness has helped to improve his symptoms.

Chuck Lorre – Known as the creator of Two and Half Men and The Big Bang Theory, the American television writer, producer, director and composer was diagnosed with Ulcerative Colitis in 1976. He has spoken of not being able to afford to see a doctor when he first experienced symptoms, and that as a result he believes access to health care is very important.

Katrina Chambers – An Australian reality TV star from the 2011 season of The Block, Chambers has spoken about struggling with symptoms of Crohn’s Disease during filming, which were exasperated by the stress of the show. She has also developed arthritis due to the condition. She writes about her experiences with Crohn’s Disease on her blog,  and is an ambassador for Crohn’s & Colitis Australia.

SPORTSPEOPLE

Sir Steve Redgrave – A British rower, Redgrave was diagnosed with Ulcerative Colitis in 1992, and then diabetes in 1997, but he was determined to fulfil his goal of winning gold at in the Olympics. He was very successful in this, becoming the only rower to win five gold medals in five consecutive Olympics after gold at the Sydney 2000 Olympics. Now retired from rowing, he is an author, philanthropist and motivational speaker.

Denise Lewis – A well known British athlete, Lewis first experienced symptoms of IBS in 1992, which later caused her to have difficulties during a Birmingham athletics competition in 1993. She then had a more severe episode during the 2001 World Championships in Edmonton, Canada, ultimately leading to her withdrawal from the competition. She eventually discovered in 2011 that the cause of her symptoms was lactose intolerance.

Scott Speed – An American race car driver and former member of the Scuderia Toro Rosso Formula 1 team, Speed first experienced symptoms of Ulcerative Colitis when he was 19 years old. His symptoms were exasperated by the high level of stress of races, and when he was 21 years old, he had lost control of his bowels and forced to wear diapers. In 2004, he was advised by doctors that he needed a colostomy; however, he refused because this would end his racing career, and instead chose to manage his condition through medication. Despite his illness, he went on to compete in 34 races, and win two championships.

POLITICIANS

Thomas Menino – The former Boston Mayor, Menino was diagnosed with Crohn’s Disease in 2004. Despite this, he went on to become Boston’s longest-serving mayor, being elected for his fifth four-year term in 2009.

Shinzo Abe – Abe (below) was diagnosed with Ulcerative Colitis after graduating from university, and it is believed to have been a major factor in his decision to withdraw from office during his 2006-2007 term as Prime Minister of Japan. After returning to campaigning in 2012, he spoke of making a “full recovery” due to his medication, Asacol, and was ultimately successful in being re-elected as Prime Minister.

HISTORICAL FIGURES

John F. Kennedy – The former US President suffered from abdominal pain since he was a teenager, and was diagnosed with Ulcerative Colitis in 1934. Medical records later revealed that he had been in significant pain during his presidency, requiring him to take several medications daily, and that his symptoms had worsened when he was stressed. Despite his condition, Kennedy was able to successfully manage situations such as the Cuban missile crisis in 1962, and he was known as a president who was “lucid and in firm command.”

Dwight D. Eisenhower – Former US President Eisenhower was diagnosed with Crohn’s Disease in 1956. Despite his struggles and surgery, he served as commander of the WW2 Allied Forces, and was successfully re-elected for a second term.

William Wilberforce – A prominent English politician during the 18^th century, Wilberforce was believed to have suffered from Ulcerative Colitis, which was possibly the reason for his usage of opium for most of his life. He is known for being one of the leaders of the movement to abolish the slave trade, and leading the campaign for the 1807 Slave Trade Act.