IBD Insights: Living with the Disease
IBD, which stands for inflammatory bowel disease (including Colitis & Crohn’s Disease and Ulcerative Colitis) is a serious, chronic digestive disease that affect five million people worldwide. There is no cure and no known cause. At APC we are investigating the role the microbiome, immune system and lifestyle may play in IBD.
A better understanding of these diseases will allow us to develop new therapies, treatments, and innovations that are tailored to tackle this chronic disease that impacts millions worldwide. IBD Insights is co-authored by researchers and a panel of patient collaborators as part of a wider public and patient involvement (PPI) study. We understand and value the importance of incorporating the patient voice in how we plan, design, manage, conduct, and disseminate our research at APC, all the way through to how our work is channelled into industry and the food and health products we consume.
PPI is research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’. IBD Insights was created to share information our PPI panel felt was important to the IBD community. The articles will include a summary of the PPI panel’s perspective written by Kevin Moore (one of the participating patients) alongside a short piece titled “the science behind” to explain more on the actual science and written by Naomi Hanrahan, an APC PhD researcher and reviewed by an expert panel.
Everyone’s IBD journey is personal to them, but it is the hope of this PPI project that some of the information we cover will apply to the reader and add value to others going through some of the same challenges.
This mini- series will contain five separate posts:
1) Patient-to-patient tips on disease management
2) Defined or restrictive diets for IBD
3) The Microbiome, Nutrition and IBD
4) Mental and Physical well-being and IBD
5) The PPI experience
Part 1: Patient-to-Patient tips on disease management
Patient-to-Patient tips on disease management
Our first IBD Insights: living with the disease focuses on tips on managing the disease from the patient’s perspective. Our PPI panel members - all with diverse experiences and backgrounds - share their viewpoints on what works best for them regarding disease management, diet, and lifestyle when living with IBD.
- When you have an IBD, the disease is yours to keep as it is in your body, so you are part of the team managing the disease.
- Be an empowered patient by being an advocate for yourself and your disease:
- Be curious! Ask your health care team plenty of questions, no matter how small, large, stupid or complicated they might seem.
- Learn and educate yourself about the disease and treatments.
- Trust your healthcare team but don’t be afraid to challenge their decisions if you are not happy with them.
- If you don’t understand or feel comfortable about advice being given, challenge it and ask questions to understand it so you can make informed decisions for yourself.
- You are a key team member in any discussions and decisions about your disease.
- Know your own body and trust your intuition, particularly if major life changing decisions are being made about you and your treatment options, eg. surgery.
- Look after your general health and fitness.
- Be regimented about your medication. Take it as prescribed and try not to forget it. Even when you are feeling well and symptom-free, do not stop taking your prescribed medication, unless advised to do so by your healthcare team.
- Learn and know about your medication. You will potentially be on it for a long time:
- What type is it? (eg NSAID, 5-ASA, biologic, steroid etc)
- How is it given? (orally, though IV etc)
- What dosage are you on?
- How often do you have to take it?
- How does it work?
- Is it taken before, after or with food?
- Any side effects to be aware of?
- What other medication options are available as alternatives to what you are on?
- Avoid taking advice from unqualified sources such as online forums, unknown websites, other sick patients in hospital, random acquaintances (eg, “my brothers, neighbours, cousin also has UC and says you should…”).
- Find out who your assigned nurse practitioner is (if you have one) and get acquainted with them. They are an invaluable resource for answering questions you may have and for helping you out if you start to experience a flare up.
- Learn, be aware and understand the disease symptoms. There are many.
- If you have newly developed IBD symptoms contact your healthcare team or GP and get it checked out. They could be early stage indicators of a flare up.
Part 2: Defined or restrictive diets for IBD
Our second IBD Insights: living with the disease focuses on defined or restrictive diets for IBD. Our PPI panel members - all with diverse experiences and backgrounds - share their viewpoints on what works best for them regarding disease management, diet, and lifestyle when living with IBD.
- A patient that is in flare may need to restrict their diet, under the advice of a doctor or dietician, to give their bowel a chance to recover during the flare. But the diet will only be restricted during the flare up.
- It is best to return to a “normal” diet when the flare up is under control, unless advised otherwise under medical advice.
- Only follow a restricted diet when advised by a healthcare professional.
- Ask your doctor/dietician for follow-ups or advice on how best to return to a varied diet once disease symptoms subside, and you are feeling better.
- For some people, eating certain foods during a flare can be problematic. In this situation, the focus should be to eat plain, nutritious food wherever possible.
- In society today there can often be a perceived negative association between food, diet and IBD. All IBD patients will be asked at some point, “So, what can’t you eat?” or “You probably can’t eat that because of your IBD.” Be careful not to be drawn into the negative food bias of IBD as it can unnecessarily restrict you and damage your relationship with food.
- Try and experiment with new and different foods. Don’t give in to food fear. When you try new foods, you may discover you like and can tolerate them. However, if they do not agree with you, your body will tell you. Trust your body!
Defined diets for IBD - the science behind
The “science behind” section of this series was written to inform the PPI panel of certain topics that they considered to be important to the IBD community. The intention of this is to be a resource to help empower people living with an IBD through understanding. It is not a list of guidelines but topics that can be discussed with your healthcare team. This was a highly collaborative project; some of the experts who contributed their expertise to this project and fact checked this blog series are listed below.
Expert panel members
- Silvia Melgar – funded investigator with APC Microbiome Ireland, College of Medicine and Health UCC, Diet-Microbe and gut inflammation group research lead. Expertise provided in immunology, inflammation and host-diet interactions.
- Majella O'Keeffe – Registered Dietician, researcher and senior lecturer in the School of Food and Nutritional Science at UCC. Expertise provided in nutrition and dietetics and dietary management of IBD.
- Ana Velikonja – Research scientist Arla Foods Ingredients (formerly a Post-Doctoral researcher in Professor Marcus Claesson’s Group at the APC Microbiome Ireland). Expertise provided in Diet, Microbiome and IBD.
Defined diets for IBD – the science behind
Part 3: The Microbiome, Nutrition and IBD
Our third IBD Insights: living with the disease focuses on the Microbiome, Nutrition and IBD. Our PPI panel members - all with diverse experiences and backgrounds - share their viewpoints on what works best for them regarding disease management, diet, and lifestyle when living with IBD.
- When you are diagnosed with IBD there is a large focus placed on food and diet. Embracing this new focus on food with a positive mindset can help you grow your relationship with it.
- With IBD, avoiding processed foods is important. Try eating whole foods and unprocessed foods that are cooked fresh and a wide variety of fruits and vegetables. “Eat the rainbow!"
- Here are some of the positive outcomes of cutting back on processed foods and embracing a wide and varied diet:
- You can learn & experience the importance & benefits of a good diet.
- It will help you feel better day to day, physically and mentally.
- It will open you up to a whole new world of wonderful tastes and flavours as you explore new food types.
- You may learn to cook dishes from scratch, which is a great skill.
- Interest in food and cooking is very social and fun.
- Learning to cook dishes from scratch is a great way to avoid processed foods, and it is a wonderful skill to have. There are thousands of easy, quick recipes out there that can be cooked from scratch and are not difficult to cook, even for the most culinarily challenged people.
- Going on holiday or travelling to places with different/exotic foods may seem daunting, but it does not have to be this way. If you’ve embraced a wide and varied diet, most foods will not be a challenge when abroad.
The Microbiome – the science behind
Diet – the science behind
Vitamins and supplement deficiencies associated with IBD