Managing IBD: a balanced guide to inflammatory bowel disease

By Jenna Farmer and Kay Greveson

Inflammatory bowel disease (IBD) is the term that includes Crohn's disease (which can affect any part of the gut) and ulcerative colitis (which affects the colon and rectum) – two chronic auto-immune conditions that cause gut pain, weight loss, whole-body symptoms and poor digestion leading to nutritional deficiencies. Both are on the rise in the developed world and are newly affecting developing economies such as China (where the author was actually diagnosed). The link with the standard Western lifestyle is evident, yet what elements of that lifestyle can be modified to make a difference? And how can sufferers live with symptoms and 'flare ups' that do not respond to treatment and/or lifestyle changes? What is the real-life experience of IBD and what can be done to take back control? Jenna Farmer offers an holistic and positive guide to living with IBD, combining conventional, nutritional, stress reduction and other lifestyle approaches, drawing on her blogs, ebooks and website www.abalancedbelly.co.uk. Throughout, the book is 'illustrated' with case histories from Jenna's blog and other contacts, and from her own experience of delayed diagnosis and listening to her symptoms.

• Language: English
• Publisher: Hammersmith Health Books
• Release date: Mar 15, 2017
• ISBN: 9781781610992

Jenna Farmer

Jenna Farmer BA, IICT Diploma, TNP Accreditation – Teacher, health blogger and nutritional therapist Since being diagnosed with IBD, Jenna has dedicated most of her non-teaching time to studying nutrition and learning about natural approaches to the disease. She has established a community for Healthy Living with IBD and blogs regularly about issues such as medication, body confidence and different diets. As a qualified Nutritional Therapist she can offer advice on eating plans to improve gut health. (Jenna is donating part of her royalties to UK IBD research charity, www.forcrohns.co.uk)

Book preview

Copyright

First published in 2017 by Hammersmith Health Books – an imprint of Hammersmith Books Limited

4/4A Bloomsbury Square, London WC1A 2RP, UK

www.hammersmithbooks.co.uk

© 2017, Jenna Farmer

Figure 3 (The Bristol Stool Chart) © Rome Foundation.

Cover photograph © JL Pfeifer/shutterstock.com

All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publishers and copyright holder.

Disclaimer: The information in this book is of a general nature and is meant for educational purposes only. It is not intended as medical advice. The contents may not be used to treat, or diagnose, any particular disease or any particular person. Applying elements from this publication does not constitute a professional relationship or professional advice or services. No endorsement or warranty is explicitly given or implied by any entity connected to this content.

As always, if you are have pre-existing health issues and especially if you are taking any medications, you are advised first to consult your health practitioner before making any changes to your lifestyle and diet.

British Library Cataloguing in Publication Data: a CIP record of this book is available from the British Library.

Print ISBN: 978–1–78161–098–5

Ebook ISBN: 978–1–78161–099–2

Editor: Georgina Bentliff

Cover design: Sylvia Kwan

Text designed and typeset by: Sylvia Kwan

Index: Dr Laurence Errington

Production: Helen Whitehorn of Path Projects Ltd

Printed and bound by: TJ International Ltd, Cornwall, UK

This book is dedicated to the best family a girl could ask for – to my husband Matt, who held my hand on our first date at 17 and has never stopped taking care of me since then; to my Mom and Dad, whose support has been constant and unwavering; to Jonathan, Jack, Leanne and Kate and my beautiful niece Ophelia who can brag that she already has her name in print at a few months old. None of this would be possible without each of you and I love you all.

Jenna xx

A huge thank you to all of my readers who made this possible and the IBD community who so willingly shared their feedback and stories (especially Bexie and all the other lovely folks in the Healthy Living with IBD Facebook group).

Contents

Title Page

Copyright

Dedication

Foreword

About the author

Introduction

SECTION I: ADJUSTING TO LIFE WITH IBD

Chapter 1 Being diagnosed

Chapter 2 Dealing with your diagnosis

Chapter 3 Finding support

Chapter 4 IBD and mental health

SECTION II: FOOD AND SUPPLEMENTS

Chapter 5 Nutritional supplements and IBD

Chapter 6 The role of food in managing IBD

Chapter 7 Beneficial foods to add to your diet

Chapter 8 Staying hydrated with IBD

SECTION III: LIVING LIFE TO THE FULL WITH IBD

Chapter 9 Travelling with IBD

Chapter 10 Working with IBD

Chapter 11 Exercising and IBD

Chapter 12 Hospital visits and IDB

Chapter 13 Socialising with IBD

SECTION IV: OTHER POSSIBLE APPROACHES

Chapter 14 Alternative therapies and IDB

Chapter 15 Dealing with a flare-up – a 24-hour self-care plan

SECTION V: APPENDIX, REFERENCES AND INDEX

Appendix – Useful Resources

Index

Foreword

Jenna has written an honest and very personal account of her journey with Crohn’s disease from well before diagnosis and through many of her most difficult and painful moments. She also describes her personal battles and the difficult decisions she has taken. Her nutrition background helps this book stand apart from many other personal accounts of living with Crohn’s disease, with a great deal of detail on diet and dietary therapies, and the section written by Kay Grevson, a specialist IBD nurse, adds clinical detail which the reader will find helpful.

Many patients with Crohn’s and ulcerative colitis will find Jenna’s words resonate with them and this book will provide support and comfort to them, especially the experiences of other IBD sufferers and the broad range of topics covered which deal with many of the less commonly discussed aspects of IBD. There are tips on dealing with investigations, advice about taking care of oneself and discussion of several controversial and important topics in IBD such as diet, anxiety and complementary therapies.

At times funny (the description of inpatient care in China is almost unbelievable!), always engaging, this book is a mixture of advice, information and a warm hug, which IBD sufferers will enjoy reading and which does exactly what Jenna promises: ‘Help you take a balanced and holistic approach to managing your life with inflammatory bowel disease’.

forCrohns, 2017

About the author

Jenna Farmer was first diagnosed with Crohn’s disease in 2012 and has been passionate about raising awareness of what it is like to live with the condition ever since. Her love for healthy eating led to her studying for several Nutritional Therapy qualifications and she began to chronicle her attempts at living a balanced, healthy lifestyle with IBD on her blog www.abalancedbelly.co.uk in 2013. The website covers everything from travelling with the disease to easy-to-digest recipes and medication tips. Over the years, her site has grown significantly and Jenna has written for a variety of other health and nutrition websites also.

About the contributors

Kay Greveson has worked as an Inflammatory Bowel Disease nurse specialist since 2005 and now works as Lead IBD nurse specialist at the Royal Free Hospital Centre for Gastroenterology, London, UK, where in 2014 she founded IBDpassport, an evidence-based resource containing useful information regarding travel and IBD (www.ibdpassport.com). She also has personal experience of IBD, having been diagnosed with Crohn’s disease aged 13. Following university, she embarked on a year-long solo round-the-world trip that gave her personal insight into and empathy with the challenges faced in balancing life and travel with a chronic illness.

Sally Baker is a therapist, speaker and writer who has been working in London for more than a decade. She specialises in helping clients to resolve self-sabotaging behaviour in whatever form it shows up and to resolve and release limiting beliefs that inhibit them from living to their full potential. As well as being a hypnotherapist, she is a Master Practitioner of PSTEC (percussive suggestion technique) and an Advanced Practitioner of EFT (emotional freedom technique).

Introduction

Most books about chronic conditions begin with the facts, perhaps the percentage of people who suffer from the disease, a clinical definition or a checklist of symptoms you mght be experiencing. Yet if you are reading this, then I am sure inflammatory bowel disease needs no introduction. I am certain that, like me, you are all too familiar with the symptoms: the classic ones the textbooks list (diarrhoea, pain, mouth ulcers) and the extra intestinal manifestations that nobody seems to really understand but are just as big a part of the disease (anxiety, skin rashes, nutritional deficiencies – I’m looking at you!). When we are first diagnosed with this (at times, extremely debilitating) disease, a doctor thrusts a leaflet into our hands and sends us on our way. This book does not aim to be one of these leaflets.

I know that facts certainly have their place and there are plenty of websites that will tell you the average age of diagnosis or the percentage of people who require surgery if that’s what you are looking for. Instead, this book aims to do everything else. It aims to provide a practical and balanced approach to help you live with your Crohn’s disease or ulcerative colitis, to provide all the information on things you’d like to ask your doctor but can’t, from figuring out the foods that work for you, to making the most of your appointments to balancing your medication with the appropriate supplement routine.

So what makes me the expert? Well, this book is the culmination of my struggles and triumphs. From the 12 years I lived with stomach pain, anaemia, diarrhoea and abscesses only to be told I had ‘IBS’ and ‘stress’. It’s the story of the moment of diagnosis and beyond, as I learnt to live with and accept my disease.

My diagnosis could be a book in itself, for it took a move to the exotic land of China to finally figure out what was wrong with me. I had always felt unwell but since I had been labelled as suffering from ‘IBS’, managing my symptoms seemed almost part of my daily routine. Yet around a year after I moved abroad, I started to deteriorate and suffered from vomiting and weight loss; within days of seeing a doctor I was finally given a proper colonoscopy and diagnosed with Crohn’s disease. Being alone in a foreign country (the language of which I could not speak – not a word!) forced me to become my own doctor, nutritionist and health advocate all rolled into one. As Crohn’s is extremely rare in China, I could not rely completely on the expertise of the medical professionals and thus began researching everything to do with the disease, treatment and ways to manage it. I navigated my way through hospital visits, Infliximab treatments, blood tests and colonoscopies, all while trying to master the basics of the language and adjust to the reality that my body had been trying to fight itself for the past 10 years.

Alongside my desire to find out everything about the disease was my growing interest in nutrition, which later led me to study for a Nutritional Therapy Diploma. I felt my travelling days were not yet over and was determined to try everything possible to give my body the best support to stay as healthy as it could. I decided to chronicle my efforts at leading a healthy, balanced lifestyle online (www.abalancedbelly.co.uk) and was overwhelmed by the number of people who too needed guidance in managing this condition.

Whilst diet is an important part of my IBD management (alongside many other aspects) this book certainly doesn’t aim to offer a cure or any kind of prescriptive meal plan for sufferers. My experiences have taught me that all the correct food choices (and I use this term very loosely, as we’ll explore later why this is such a hugely personal issue) in the world won’t work if you are stressed out and neglecting your body in other ways. In turn, we also need to recognise that our body sometimes needs more help than we can offer it and know when to turn to the professionals. Like many IBD patients, I’ve had periods of being med-free and periods when I’ve had no choice but to medicate to give my body the best chance possible to recover. Both of these choices are OK. Yet whether we are being treated with medication, awaiting surgery or enjoying remission, it is so important to consider the many aspects of self-care that can help IBD patients, such as food, sleep, exercise, support networks and stress relief. Of course, these self-care methods may, for some, be enough to maintain remission, while for others they will simply work alongside their treatment plan. This book is not designed to tell you what to do but instead how to help you take a balanced and holistic approach to managing your life with inflammatory bowel disease. Throughout the book, you’ll see case studies from other sufferers alongside my own experiences, which I hope will reassure you that, however you are feeling, there’s someone else out there feeling exactly the same. You will also find contributions from Kay Greveson – an award-winning IBD nurse and creator of the IBD Passport (see page 38) – who gives a brief overview of the types of investigations and medical treatments there are for those sufferers who are newly diagnosed.

I hope this book will provide you with the support and guidance you need when tackling this disease. Let me end on a note that many other IBD books don’t acknowledge: I know how difficult it is to live with this disease day