Wednesday 10 April 2019

Questions and Answers with Crohn's Disease Patient Ruth Nugent

By Clara Caslin

Ruth Nugent studied Geomatics (surveying and mapping) in the Dublin Institute of Technology in Dublin. She graduated in 2016 with a second class honours BSc, which she says was one of her best achievements to date. She was in one of her worst flare up of her Crohn's at the time. Ruth left university qualified in land surveying. She currently works for ESB Networks where she is following a career in mapping. She also competes in motorsport in her spare time.

Ruth Nugent


When did Crohn's symptoms start for you?  

My Crohn's Disease symptoms started when I was around 14/15 years old but during the years of 18 to 20 years old, they got progressively worse. I had a vitamin B12 deficiency and some food intolerances from the age of 15 but it wasn't until I was in college that things started to get worse. That was when I decided to start seeing a gastroenterologist for tests to see if there was anything wrong. 

How old were you when you were diagnosed?  

I had just turned 21 and was in my third year in college when I was diagnosed with Crohn's Disease. I had never heard of it before and was terrified. I was put on a course of steroids and wasn't given any more information so it was a tough time trying to come to terms with the diagnosis. I joined the ISCC (Irish Society for Colitis and Crohns Disease) and met other patients and IBD nurses through meet ups and that was when I started to see that there were so many other young people and younger as well as older that had Crohn's or Colitis. 

I met people who had Crohn's since they were a baby, some who had colostomy bags, some who were newly diagnosed like me and even family members who wanted to learn more about the disease. The ISCC helped me a lot with coming to terms with living with Crohn's and I'll always be incredibly grateful for them. I also had huge support from my parents who were willing to go anywhere and do anything to help me physically and mentally. 

What were your symptoms?

My symptoms vary but at my worst stages in the disease my most common and debilitating symptoms included needing the toilet between 4-8 times a day including loss of blood, severe stomach pain, extreme fatigue, mouth ulcers, very bad acid reflux and a variety of other symptoms linked to malabsorption issues. 

How active has the disease been since you were diagnosed?  

I had a few bad flare ups but during 2018, it seemed to get worse very fast. It was my first year in motor racing and I had a few other big things going on in my life so it may have been triggered by stress. I had been trying to manage it through diet and the odd course of steroids until late 2018. I was put on a harsh course of steroids because I was too sick and they made no change whatsoever to the symptoms. This was when my consultant decided to back track through all my blood tests and colonoscopy results over the previous three years to decide a proactive route of treatment. 

It was around this point that it was starting to affect my daily life. I was losing my appetite, limited to what I could eat, losing blood daily and fed up of being in pain and exhausted all the time. I was missing more days in work and found myself more self conscious around people and worst of all trying to explain to anyone what was going on with me.  

What is it like living with Crohn's?

I can't really remember what it's like to not live with Crohn's Disease even though it's only been a few years. The diagnosis completely changed my perspective on a lot of things and changed my outlook on life a little, as dramatic as that sounds! Every day, I deal with one symptom if not a few. On very bad days it can be hard not to let it mess with my mood and sometimes feel a little "why me?".  I have had to have the odd cry, I don't think there's any shame in admitting it. Sometimes, I celebrate achieving things in every day life that may seem small to others because I would have had to push myself to get through it whether it's marshalling at a race, going out on the bike, racing the car when I'm unwell or sometimes simply going to work and getting through the day. 

It can be extremely tough mentally, as well as physically, because all I want to do is keep going and to stay busy and happy but sometimes my body can't keep up. I have learned a lot from other patients lives and following some badass people living with Crohns on social media who are living their best lives! The support my family and friends or even strangers online have given me has influenced me to keep pushing to live as normal as a life as I can and most of the time it is just that. Just add in the mini pharmacy on me everywhere I go and the mental map of where every toilet is at every venue!

What would you say to someone who has just been diagnosed? 

Your diagnosis/illness DOES NOT DEFINE YOU. This is what I firstly had to learn because automatically I felt I was going to be labelled the girl with Crohn's and to some I may be! To me, Crohn's is just a small element of my life that I've learned to use to shape me for the better. I would say not to panic, that there are so many treatments available, not to be embarrassed - you have NOTHING to be embarrassed about. You're a bad ass person who yes, has a bowel disease but you are still you. Find your own way of describing Crohn's disease so you're comfortable to tell whoever you may need or want to tell. Sometimes words like "bowel" or "disease" may make even you cringe so you can always use other words like "digestive illness" or "autoimmune or chronic illness". Please, please, please talk to people about how you're feeling. The diagnosis can be very daunting and you're allowed to feel confused, scared, lonely or absolutely anything you want to feel!

Have you had surgery? 

No, I have been one of the very lucky Crohn's patients who has not had to have surgery yet and hopefully never will. I am friends with a good few patients who have however had surgery and thanks to them, if I was to every face that road, I feel like I could face it with knowledge and support. Everyone I know who has had surgery has said it has either changed their lives for the better or in fact saved their lives so I definitely don't see it as a negative thing!

Have you had to change treatment because it stopped working?

Yes, I stopped responding to any form of steroid treatment so I am now on biologic therapy, which I receive every eight weeks through infusions. It is an artificial antibody drug that is used to treat autoimmune diseases. I'm now four months on this treatment and I'm the closest to feeling "normal" than I've ever been in about eight years! 

Tuesday 2 April 2019

Questions and Answers with Dietician Aoife McDonald


By Clara Caslin

Aoife McDonald is a dietician, who has set up her own clinic called The Digestive Health Clinic. It is located in Cork, Ireland and is launching in the Summer of 2019. Aoife studied BSc. Nutritional Science at University College Cork (UCC) and then went on to do a Postgraduate Diploma in Nutrition and Dietetics at the University of Chester, UK. She has three years experience working in the NHS and has a special interest in gastroenterology. A digestive health programme has been designed by Aoife to help people with Inflammatory Bowel Disease and Irritable Bowel Syndrome to manage their symptoms through diet and lifestyle changes.



What types of food do you recommend for people with Inflammatory Bowel Disease (IBD)? 

There are no foods that are specifically recommended for those with IBD, therefore it is advised that people with this condition aim to follow the dietary guidelines for the general public. These guidelines are based on the principles of a Mediterranean diet, which is largely based on high-fibre plant-based foods such as wholegrains, nuts and seeds, fruits and vegetables, legumes, and olive oil. It also encompasses plenty of seafood such as oily fish, moderate amounts of eggs, moderate intakes of poultry and dairy products (cheese and yoghurt) and low quantities of red meat. 

What types of food do you not recommend?

There is no one particular food that all those with IBD should avoid completely, as sensitivities can vary from person to person. If you have IBD and suffer from digestive discomfort when in remission, I would recommend keeping a strict food and symptom diary to help you to identify any problematic foods. 

Studies have shown that the incidence of IBD is higher in countries where a 'Western Diet' is consumed. This dietary pattern is characterised by refined carbohydrates, high intakes of red meat and regular consumption of processed foods, which often contain additives such as emulsifiers and sweeteners. Adhering to a Mediterranean diet as outlined above may be beneficial to those with IBD, as it inherently limits intake of these types of foods.

What portion sizes should people with IBD eat?

People with IBD should eat 'normal' portions, but 'normal' can mean different things to different people! A good rule of thumb is to fill half your dinner plate with vegetables or salad, one quarter with a wholegrain such as brown rice or quinoa, and the other quarter with a protein source such as lean meat, fish, eggs or legumes. Take a look at the Healthy Ireland guidelines for further advice on portion sizes http://www.healthyireland.ie/health-initiatives/heg/

You may wish to have smaller portions when in a flare-up, or if you experience IBS-like symptoms when in remission, reducing your portion sizes can help with symptom management.

Should IBD patients stay away from fibre?

In general, patients with IBD do not need to avoid fibre, and should aim to have at least 30 grams per day. However, tolerance to fibre can vary significantly from person to person. If you are planning on increasing your fibre intake, always do so slowly, and ensure you are drinking plenty of water too.

Many people with IBD consume low fibre foods when in a flare-up as these are easier to digest, and can reduce the frequency of bowel movements. Once symptoms have improved, patients can slowly begin to reintroduce fibre to their diet, up to their personal level of tolerance. The one exception is in those with stricturing Crohn's Disease, where a low fibre diet may be recommended long term to reduce the risk of bowel obstruction.

Apparently, dairy is bad for IBD. Is that true?

No, dairy is not bad for IBD. Some people may experience transient lactose intolerance if their IBD affects the small bowel, as this is where the enzyme needed to break down lactose is found. When their IBD is back under control and their bowel has had time to heal, these patients are normally able to reintroduce dairy foods back into their diet.

However, if you find that dairy does not suit you,  always ensure that you are replacing these foods with non-dairy alternatives such as fortified soya or almond milk, and soya or coconut yoghurt. Other foods such as tinned fish, green leafy vegetables, beans, soya products, figs, oranges, seeds and some nuts are also good dietary sources of calcium. IBD patients have an increased risk of developing osteoporosis, therefore adequate calcium and vitamin D intake is particularly important.

Would IBD patients benefit from a gluten free diet?

A gluten free diet is generally only recommended for people with Coeliac disease, which affects about 1% of the population. In saying this, many people with IBD find that removing gluten-containing foods from their diet makes them feel better.

If you find that gluten does not suit you, consider the types foods you are eating. For example, pizza and cake contain gluten, but these foods are also highly processed and high in fat, so it may be these components of the foods that are causing discomfort rather than the gluten.

In the 30% of people with IBD who also suffer from Irritable Bowel Syndrome (IBS), removing gluten containing foods from the diet may help to improve digestive discomfort. Foods such as bread and pasta are high in FODMAPs (Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols) which can cause symptoms in those with a sensitive gut. In this case, the reduction in FODMAPs rather than gluten can lead to symptom improvement. Your dietitian may take you through the Low FODMAP Diet process if you also have IBS. 


Should IBD patients avoid alcohol and caffeine?

Patients with IBD do not need to avoid alcohol and caffeine, unless an individual finds that it triggers symptoms for them. Reducing caffeine intake can be useful if you have persistent loose stools as caffeine acts as a stimulant. 

Overall, there are no specific guidelines for caffeine and alcohol consumption among IBD patients, therefore I would recommend adjusting caffeine and alcohol intake on a individual basis. The alcohol guidelines for the general population can be found at www.alcoholireland.ie

What are common problems that you see coming up with your IBD clients?

In clinic, one of the common problems that comes up is Irritable Bowel Syndrome (IBS).  I help patients to manage their functional gut symptoms through diet and lifestyle changes, as well as therapeutic diets such as the Low FODMAP Diet. This diet involves reducing intake of FODMAPs (poorly absorbed carbohydrates) for 4-6 weeks, followed by a systematic reintroduction process. About 60% of IBD patients with IBS achieve clinically significant symptom improvements on a Low FODMAP Diet. For accurate results, this therapeutic diet should only be carried out with patients who are in remission, and under the guidance of their dietitian.  

Other patients I see in clinic may not be able to manage solid foods when in a flare-up. These patients sometimes require exclusive enteral nutrition (liquid diets) followed by a slow reintroduction process called the LOFFLEX diet (Low Fat/Fibre Limited Exclusion diet), which is used when patients are transitioning from a liquid diet back to solid foods. This diet helps patients to identify foods they are sensitive to, and therefore may need to avoid long-term.

On the wards, I see patients who require parenteral nutrition, which is a type of nutrition that is given intravenously. This is normally only needed short-term until the patient can safely eat and drink again.  I also provide dietary advice to patients following surgery who have a new colostomy or ileostomy. 

You can contact Aoife by email:
Instagram: @digestivehealthclinic

Disclaimer: The information provided is not intended to replace medical advice or diagnosis from a physician or other medical provider. Please speak with your IBD team/dietitian if you are planning on making changes to your diet.