Take the Trip

By John Geates

Two of the most understated chronic medical conditions are Crohn’s disease and ulcerative colitis unless of course you have them. The impact they can have on someone and their family is devastating. However, the levels of knowledge and understanding of these conditions by the people who have them, across the medical profession and in society in general are poor due to their complexity and, for some reason, lack of prominence. Living with them and managing them, like any chronic condition, is a real challenge and the purpose of Take the Trip is to help sufferers and their families do that. This book in a very detailed but straightforward manner does examine the difficulties of living with any serious illness or condition but primarily focuses on Crohn’s disease and ulcerative colitis.

TRIP from the book title is a mnemonic for Think subtle - Real knowledge - Individual management plan - Practical guidance. Visually these are shown as the 4 strong roots of the beautiful lavender flower that will help the plant to better health namely the bloom. In other words the author believes that taking this TRIP will lead sufferers to better health and achieving their own ‘health bloom’. Once the bloom is achieved the focus then shifts as to how to manage and maintain this better health and wellbeing. Tangible options are given for sufferers on how they can make this happen.

A considerable amount of detailed information about Crohn’s disease and ulcerative colitis, the symptoms, the importance of accurate diagnosis, the treatments, the drugs and the critical aspects of all of this is presented in a manner that is easy to read and understand.

• Language: English
• Publisher: BookBaby
• Release date: Jan 16, 2017
• ISBN: 9781483588452

Book preview

BIBLIOGRAPHY

CHAPTER 1

Living with and Managing Crohn’s and Colitis

Introduction

This book examines the difficulties faced when living with any serious illness or condition, but with a primary focus on Crohn’s disease and ulcerative colitis. It is my intention to present the views of real-life experts on how to manage such conditions, in various degrees of severity, on a day-to-day basis. I hope that by the end of this this book, you’ll learn that depending on what illness you have and its gravity, as certain forms while debilitating, the illness can be managed and a normal life (and what that means to you) can be pursued. It is realistically about maximising what you can be and do.

The title of the book TAKE THE TRIP is self-explanatory and will get clearer as you read on. The title is metaphorically related to the beautiful lavender flower, which will be discussed across the chapters, and is a very simple concept. TRIP is a mnemonic, referring to the strong roots of the flower, and will help the plant to better health, and hence the bloom. In other words, taking this TRIP with me, I believe, will lead you and me to better health. Every aspect of TRIP is unveiled in this and in the next nine chapters. TRIP stands for:

•   Think subtle (Root 1)—I will refer to this a lot and show you how a subtle or delicate change can and will make a considerable difference to the quality of your life.

•   Real knowledge (Root 2)—You will learn a lot about your illness, the symptoms, the importance of diagnosis, the treatments, the drugs and their critical aspects. The purpose of sharing this knowledge is to help you manage yourself better. We will discuss several options in this context.

•   Individual management plan (Root 3)—In Chapter 2, I will discuss the importance of Individual Management Plans and the benefits these can bring to you. By the end of the book, you will hopefully, like me, have your own plan in operation.

•   Practical guidance (Root 4)—Every chapter is rich in advice, guidance and anecdotes, all based on experience and research. I believe you will find something of use in every single chapter.

"Either write something worth reading or do something worth writing.

Benjamin Franklin (1706-1790) American statesman, scientist and philosopher".

What actually inspired me to write this book was what I had suffered, what I had gone and go through, what I had experienced and, as a consequence, the conclusion that I had not received the best treatment, advice or help that I could and should have. I also figured that if this was how I felt, then you, as a fellow sufferer, would probably feel the same way. Therefore, I decided to try and practise some self-control or self-management. I knew the first step was to significantly increase my knowledge and, as I expanded my knowledge base, I got inspired to share my findings with others.

I thought a useful start might be to get some context for our illnesses. As I began my research, I started to realise what a serious medical condition I had been living with for twenty years (details to follow in Chapter 2)! The following statements will help you understand how common our conditions actually are now and how their incidence is increasing year after year. I was surprised to find out the extent of the current prevalence of our conditions:

Ulcerative colitis affects about 700,000 people in the United States. Approximately 46 percent of ulcerative colitis patients have moderate to severe UC. It’s a disease that’s unpredictable, with symptoms that tend to come and go, possibly developing over time.

http://www.healthline.com/

WHAT IS CROHN’S DISEASE?

Crohn’s Disease is on the rise: incidence rates of the inflammatory bowel condition have been increasing over the last 30 years. It’s particularly prevalent in Europe and North America.

https://www.german-medical-access.com

According to the Crohn’s & Colitis Foundation of America, about 1.4 million Americans have Crohn’s disease or ulcerative colitis. Of those, about 700,000 have Crohn’s. In the years between 1992 and 2004, there was a 74 percent increase in doctor’s office visits due to Crohn’s disease. In 2004, Crohn’s disease was the cause of 57,000 hospitalizations.

http://www.healthline.com/health/crohns-disease/facts-statistics-infographic

Crohn’s and Colitis UK is a national charity leading the battle against Crohn’s Disease and Ulcerative Colitis.

We’re fighting to achieve a better quality of life now for the 300,000 people in the UK suffering physically and emotionally due to these and other forms of Inflammatory Bowel Disease. Ultimately, we want to find a cure.

http://www.eventbrite.co.Uk/o/crohns-and-colitis-uk-8374585597

More than 1 million people currently suffer from Crohn’s disease, and thousands more are diagnosed each year. However, many suffer in silence, as the effects of Crohn’s are often not openly discussed. About seven of every 100,000 people in the United States are diagnosed, most of them between the ages of 15 and 30, according to the Crohn’s and Colitis Foundation of America. There is no cure for the chronic condition.

http://edition.cnn.com/2012/08/07/health/crohns-disease-explained

Who gets Ulcerative Colitis?

The disease usually begins between the ages of 15 and 30 although it can appear at any age. It seems that men and women are equally likely to be affected. About 100,000 people in the UK have ulcerative colitis. It is fairly certain that there is nothing you might have done that could have brought it on.

http://www.bsg.org.uk/patients/general/ulcerative-colitis.html

The condition affects about one in 500 people in the UK. It usually develops between the ages of 15 and 25. The condition is rare in childhood, but it can occur at any time in your life. It’s equally common in men and women.

https://www.bupa.co.Uk/health-information/directory/u/ulcerative-colitis

•   Ulcerative colitis is the most common type of inflammatory disease of the bowel. It has an incidence in the UK of approximately 10 per 100,000 people annually, and a prevalence of approximately 240 per 100,000.

•   Ulcerative colitis can develop at any age, but peak incidence is between the ages of 15 and 25 years, with a second, smaller peak between 55 and 65 years.

•   Ulcerative colitis occurs in men and women at approximately equal rates.

http://patient.info/doctor/ulcerative-colitis-pro

More than 1.6 million Americans live with Crohn’s disease and ulcerative colitis, two diseases that fall under the inflammatory bowel diseases (IBD) umbrella. However, the impact of these debilitating digestive diseases is felt far beyond the patient population, touching the many individuals that make up a patient’s support system.

http://www.ccfa.org/news/awareness-week-2015.html

For some reason, most of my life I thought that I was part of a select few who have been inflicted with these awful conditions. As I started to understand and appreciate how common these conditions actually are, I became somewhat annoyed at the lack of awareness both in the society and, as we will cover in some detail, among medical professionals. The hype and profile that surround other illnesses that are similar with respect to how they dominate and, in some cases, destroy people’s lives are considerably greater when compared with what our illnesses receive. Now, please, in absolutely no way will I detract from the seriousness or consequences of other illnesses or demean them in any shape or form. Neither will I name any other illnesses nor refer to them as I have no intention of starting some form of competition or comparison of severity.

That is not what this book is about. I accept there are significantly worse illnesses and conditions, and I accept the trauma and fatality attached with other sudden ailments. I completely respect all people irrespective of the illness they have and I do not want to raise awareness of our issues at the expense of others, as that would be self-defeating and inappropriate. This book is about sufferers as a whole but with a definite focus on patients with Crohn’s disease and ulcerative colitis. With that in mind, I intend to use this book to battle for a far better awareness and understanding:

•   For those who suffer from ulcerative colitis

•   For those who suffer from Crohn’s disease

•   For people in general

•   For those within the medical profession

Why? The need for this increased knowledge and understanding will become very apparent both for the society at large and for you as you read through the chapters.

For the society at large

Simply put, I believe that diseases that are as serious and impactful as ours and those that are spread so widely across civilisation deserve a much higher profile than they currently have. They should be, in my opinion, much more at the forefront of medical discussions or debates, charity fundraising and focused medical research than they seem to be at present. As an example, a quick look online will tell you the following:

•   The 200 largest US charities do not feature Crohn’s disease or ulcerative colitis.

http://www.forbes.com/lists/2011/14/200-largest-us-charities-11rank.html

•   Wikigiving includes pages for 124 of the best-known and largest UK registered charities, and again Crohn’s disease or colitis does not feature.

http://www.wikigiving.org.uk/index.php?title=Largest_UK_charities

•   The Charities Commission Top 10 charities, 27 October 2015, are listed based on income, and again Crohn’s or colitis charities do not feature.

http://apps.charitycommission.gov.uk/showcharity/registerofcharities/SectorData/Top10Charities.aspx

These are indeed fantastic charities supporting other critical illnesses. In 2011, my friend David Thomson and I made a musical CD for charity and sold it manually and on iTunes. David raised £1000 for Parkinson’s UK, and I raised the same sum for the charity Over The Wall, which has run camps in the UK since 1989 and each camp is for about sixty children who are affected by serious and life-limiting illnesses. I authorised their use of the Scottish Police College site at Tulliallan when I was the director there. As a thank you, the children sang to me one night, and it moved me to such an extent that I worked hard in my own time to raise the money. I had never heard of this charity until I was approached by their chief executive and asked if I would allow them to hold the camp at my college.

Although I have absolutely no regret raising the money for Over The Wall, I do now question why, as a sufferer for many years, did I not raise money for ulcerative colitis or Crohn’s disease, my own condition? But now, following on from my research for this book, I will. I cannot accept that ulcerative colitis or Crohn’s disease is far lower down the ranks as far as charities are concerned. I believe (from my own experience) that such is the situation because of lack of knowledge, publicity, marketing, awareness and understanding. Simply put, we (the sufferers or patients) are not shouting loudly enough, and I am going to do my best to change this situation through a variety of ways, and one is this book.

This is not a criticism of the current Crohn’s or colitis charities that are in place, as they most certainly do fight our corner. One of the best is Crohn’s and Colitis UK.

Let me tell you, this organization works extremely hard in all aspects of our diseases. Since my research, I am now a member (Membership No: 20618248) and I really wish I had joined this group earlier. I have been in touch with this charity group since researching for this book. The group is full of good people trying to help people like us. You and I need to do more to help them achieve their purpose.

If you are a sufferer but not a member, then I would urge you to become one. Upon joining, you receive a card like I got and the information printed on the back of the card can actually come in handy. You will see how as you read some of the anecdotes from our experts in later chapters. You will also receive the following booklets:

•   A quarterly newsletter, which will keep you updated every three months

•   A food guide booklet, which you will find very helpful

•   Your membership magazine called Connect

•   A drugs reference book about all the drugs used in irritable bowel disease (IBD)

I will address all of these aspects in the following chapters and talk about how this charity can help you. I will now help them when I can in the future. It is very important that we all work together to promote our conditions and inform the entire society of the challenges we face dealing with these conditions. Recognition of the seriousness of Crohn’s disease and ulcerative colitis, as well as the abject misery they inflict on those who suffer has to be a priority. Trust me that knowledge is not there currently as I will evidence. Crohn’s and Colitis UK does try to do this as does Crohn’s & Colitis Foundation of America, Irish Society for Colitis & Crohn’s Disease and European Crohn’s and Colitis Organisation.

These are just examples of the many organisations out there working for us. In addition, there is the National Association for Colitis and Crohn’s Disease (NACC), a charity that does excellent work for sufferers not only in the UK but also across the globe. However, I am sure as you take this trip with me, you will see and feel that more can be done and that we also need to do more to support them.

For You

My main focus throughout the chapters, however, will be on how you are affected as a fellow sufferer, your own levels of awareness, how we can help you, and more importantly, how you can actually help yourself. Some people initially question whether self-help is a realistic option, but I hope they will later change their view as they read through the chapters. That is my main hope and intention that somewhere in this book you will find something that will help you.

I will focus on how a delicate or little and simple change can in some circumstances make a huge difference (Think Subtle—the first root of the flower). These changes individually and collectively can definitely help, and the explanations and examples I give here will show you how. Let’s be very clear: this book is about views and opinions based on research, expertise and primarily personal experience. Not all of these will suit or benefit every one of you—that is not realistic. However, I genuinely believe there will be something for most sufferers that will help in the day-to-day management of your condition. Without question, there is a multitude of information throughout the chapters that will get you thinking in a very different and informed way about your condition. Indeed, I would contend that there will be learnings, helpful and thought-provoking issues for anyone who suffers from any form of major illness or condition. In addition, the help models I offer will definitely benefit anyone with any form of condition similar to ours.

I believe you will find some of the stories in the chapters that follow encouraging, motivating, emotional and inspirational. This is not a medical diatribe of facts, theories and ideals. Instead, it is a collection of real life practical examples from those who suffer, people who are engaged daily in the reality of the illness, the treatment and management of the consequences.

In doing this, together we will look at all aspects of daily living, successful careers and all the heartbreak and challenges that go with that. It won’t be a difficult or heavy read but will explain the conditions and what they actually mean and, at the same time, look at treatments and their benefits. There will be criticism of the medical profession for the lack of knowledge across some areas and the effect this can have on a patient.

No medical individual is named or spoken about unless in positive terms as this is not about blaming or getting back at anyone. It is about making you as upbeat as possible in managing illness while recognising the hurdles you will potentially face from certain areas, including the medics, who don’t fully understand your condition. I will explain the reality of why this actually happens, and you will also be provided with advice to help you manage such scenarios.

My initial stimulus for writing this book was the time I became severely ill four months after moving to Abu Dhabi in 2013. After weeks of treatment by a general practitioner and a significant worsening of my health, I was admitted by a specialist in the Burjeel Hospital in Abu Dhabi where, after an intense course of intravenous drugs and steroid treatment, I was soon back on my feet. The same thing happened almost a year later. During those two spells in the hospital, I engaged in significant conversations with my consultant, and while sitting for hours in my hospital room, I reflected on what we had considered, my condition in general and the difference I was experiencing in a new country. My home had been Scotland for fifty-one years and suddenly I was in a substantially different climate. I had probably come from one of the wettest and certainly not the warmest climate to one of the hottest—when we arrived it was roasting hot, averaging 35 to 40 degrees every day and was building towards summer.

Around the same time, I was having lengthy conversations with my daughter Julie who had qualified as a pharmacist and during part of her studies had focused on colitis. We discussed the impact of drugs and how I could best manage them and how to take them most effectively. As a consequence of those conversations with Julie and the consultant as well as my reflections on my condition and treatment both in recent times in Abu Dhabi and over previous years, I started to realise that I only had a surface understanding of my illness/condition, what it actually meant, how it could impact on me and how I could potentially manage it better.

As I will explain in separate chapters, I also started thinking about and then researching the immune system and hydration, their impact and their requirements. I was genuinely surprised at their influence on health in general and the significant difference that they could make, specifically to my own condition of ulcerative colitis and sufferers of Crohn’s disease.

I decided to start writing about what I already knew, as I felt that would actually show me what I didn’t know and what gaps in personal knowledge, treatment and management I had to fill. I figured that this would enable me to work out what I had been doing well, what I needed to do to improve and who I needed to engage with to get information; all this with a hope that it might just lead me to a healthier life. I decided to write about it, as that is what detectives do. Something I practiced as a professional investigator. As you are investigating, for example, a murder you start to question the evidence you have on a suspect and what your next course of action should be, it is always a good practice to write a report that you would present to the prosecutor and assess it through their clinical eyes. You would soon identify where the gaps are and what you would need if a proper case was to be presented against this suspect or if they are indeed in the clear, the chances being equal for both possibilities.

George Leitch, former Detective Chief Superintendent, Strathclyde Police, the difference between amateurs and professionals is that professionals write it down.

The theory worked and I started to unravel a whole raft of issues, both general and personal, that I felt were fundamentally enabling me to have a far better understanding of my illness and how I could potentially influence it instead of simply being controlled and dominated by it (Root 2 Real knowledge). I also realised when doing this that I had actually applied (unconsciously) some significant techniques of my own over the years as I managed my many flare-ups. Thus the idea of this book was born, as I figured that if this process and my findings could help me, then it could also help others.

It is interesting because my focus changed as I worked my way through the research and the interviews and as I actually started writing down my thoughts, analysis and findings. It struck me that there could be a major benefit in doing all this if, by the end of the book you, the readers, fellow sufferers and me, could have our own Individual Management Plan (IMP)—the third root of the flower. This just seemed to become more and more obvious as I wrote the chapters. This idea for the IMP first starts in Chapter 2—Knowledge