Beating Ulcerative Colitis

By Keith Buckley

Become part of the solution to your ulcerative colitis health challenges with our new success programme, now published for your e-reader. Contained within 3 sub volumes: 'Beating Ulcerative Colitis' is written by and for sufferers of this chronic and often life limiting condition. The aim of 'Movements' and our programmes, is to provide information for those who live with and overcome the challenges that their condition brings. We look at the optimum way to successfully live with a range of symptoms and how to manage their effect on daily life. The programme contains three key elements and is designed to become part of the user's own personal toolbox for successful management of their IBD condition. These are, 1 - The Programme, a collection of 200 + sections on living with ulcerative colitis - 2 - The Marketplace - covering 'partners in care', everyone supporting those living with ulcerative colitis today - 3 - The Journal, the author's own, frank, diary of life with ulcerative colitis and the process of treatment, surgery and convalescence.

• Language: English
• Publisher: Keith Buckley
• Release date: Aug 19, 2014
• ISBN: 9781898650577

Keith Buckley

Keith Buckley lives in North Yorkshire but was born in Oldham, Lancashire. Following a career working in building societies and banking he is the founder of a new publishing community called Movements (part of Sharp Edge Publishing). With the strap line, 'community, concern and care through communication', Movements is encouraging sufferers of chronic conditions to support each other by sharing their experience of living successfully with their symptoms and daily challenges. Movements is also bringing together all providers of products and services to this community, truly becoming 'a bridge between commerce and care'. Together with illustrator Andrew Gordon, he is originating and publishing information and strategy based programmes covering a wide range of conditions. Launched in 2014 - Movements 'Muffins' is a new imprint of Movements/Sharp Edge Publishing. It will further develop the Movements theme, making titles more accessible to a wider audience. When not aiming for these lofty ideals he enjoys motorcycling, watching motor sport (especially F1 & sports car racing), spending time in Crete and trying to learn Greek!

Book preview

The author and publishers wish to thank the countless number of people who have, often selflessly, given of themselves and contributed to the success of this series of publications. A great debt of gratitude will be owed to you by all those helped by these Programmes.

Now it is your turn to become involved, and to be part of the solution: All 3 volumes of your copy of ‘Beating Ulcerative Colitis - Your Own Ulcerative Colitis Success Programme for e-Pub readers,’ are contained within this publication. To register your copy, please send your e-mail address to [e-mail]. Updates of e-Pub Programmes will be issued periodically. Provided you have downloaded one of the e-Pub reader’s to your laptop etc, you should be able to access your Programme on a wide range of devices. Thank you for joining us, and becoming part of the solution to the challenges of living with and ultimately beating the effects of ulcerative colitis on our lives.

To discover more of our publications, especially our ‘Success Workbook’, check out our website - http://www.movements.me.uk & of course and major digital and physical book retailers etc.

‘You only get one spell on this wonderful planet, and it’s up to you to make the very best of it’. ‘If it benefits other people as well, then so much the better’. Richard Noble – Land speed Record Holder 1983 - 1997 & Project Director Thrust SSC Land speed Record Holder

Please note the information contained here about treatments that you may come into contact with, or hear about in connection with ulcerative colitis and any related conditions is simply intended to improve your general awareness and is given for guidance only. It is provided to help you to have a basic understanding of how they work. We are not trying to replicate the knowledge and expertise of your professional care team. The provision of information within the volumes of this e-Pub Programme aims to help you to feel included in the process of deciding the best course of action you should take to build your own success strategy. The original Programme was created over a period of several years - itself an indicator that ulcerative colitis may be around in your life for a while. Much of the content here has been contributed to by many people I have met, or heard from, during my journey with this chronic condition. As you begin to live successfully with your symptoms and circumstances, no doubt you will also influence others too!

Welcome to Movements

‘Mao said that every journey begins with a single step and so it is. Every organisation, every ‘movement’ begins with a single person voicing an idea.’ - Positive Nation

The idea behind the creation of ‘Movements’ probably wasn’t very original, but it was certainly overdue. Now that it is here I hope it will become a new community of sharing and support that cuts across conditions, cultures, social groups, patients and professionals, as well as national boundaries. A community, which looks to give everybody touched by life limiting conditions an opportunity to help themselves and each other by exchanging information, strategies and ideas, as well as a few hopes and dreams.

‘Movements’ stemmed at first from the need to offer a facility to regularly update the original ‘Beating Bowel Disease’ series of Programmes. This would keep the information and comment provided within each both up to date in medical terms and also current in the sense of what those reading them felt about how they reflected their own experience of living with the conditions being covered. During the major life upheaval that has been my family’s long dance with ulcerative colitis, (a form of Inflammatory Bowel Disease), and then surgery, I felt that there was a real gap in the provision of accessible, relevant information for both new and existing sufferers. That gap left me feeling isolated, misunderstood and lonely, living with a condition that wasn’t regularly discussed outside of the medical profession and the major national IBD associations. More importantly there was nothing readily available that helped me to make sense of how I felt emotionally about what was happening to my body and my life. This sense of real isolation, borne partly also from a general ignorance of IBD that I had felt, led to the idea that I should keep a Journal/Diary of my feelings and the events surrounding my ongoing treatment (this has been developed into the Journal volume of this Programme). I originally wanted to publish this effort as a booklet in its own right but soon realised that such a small work would not create enough of an impact to provide any real benefit for other IBD sufferers. Instead I wrote and published an audio book, ‘Living with Ulcerative Colitis’ which sold well, raised money for the National Association for Colitis and Crohn’s (NACC), now known as Crohn’s & Colitis UK, and is still reaching folks, but I knew there was a need for much, much more. This feeling led to the desire to create not only a series of written Programmes, but to make them both comprehensive and uniquely interactive, so that each reader, lay and professional alike, could become a contributing ‘personal partner’ in the drive for a successful way of firstly managing life with bowel disease or dysfunction, and ultimately chronic conditions in general.

I also felt that just another series of self-help books on their own would not be enough to reach fellow sufferers and their families, for there are plenty out there in the market already. Such books, no matter how well written, would still have been too remote, too impersonal and still full of gaps. If I were to take on this task, any publications that resulted from my efforts would have to be able to grow with the experiences and triumphs of their readers. They would also have to be capable of delivering a universal sharing of information in a way that the existing self-help groups, by their very structures, cannot currently achieve.

There had to be a way of creating a series of personal Programmes and then growing them into a worldwide, interactive, relevant, people based resource for today’s communities as well as tomorrow’s (sorry to go on so much, but this matters to me). There was, and we went ahead and launched the 3 volume physical version of the first in a series of ‘Beating Bowel Disease’ publications. Now, already we are publishing this additional range of accessible e-Pub Programmes, each may be supported by our new ‘Success Workbook’, as a personal partner to use during your own journey with IBD, or you could provide your own materials (check out the web site - http//:www.movements.me.uk).

The idea and then creation of ‘Movements’ has never been with the intention of challenging or replacing the excellent self-help clubs, groups and associations that currently exist all over the world. Rather it should be thought of as a supplement to them, with profits from our activities generating funds to donate to the work of these fine bodies. I have made countless references to a ‘new community’ throughout this and our other programmes and in any publicity material that you may come across. It is at the very heart of everything that is to follow. ‘Movements’ will I hope, become many things to many people, but most importantly as a new type of ‘universal community’, I want it to grow to become a major force for change in the lives of those facing life challenges. I especially want to change and improve attitudes towards chronic disease in general. This has been done successfully with AID’s and to a lesser degree with some forms of Cancer, so I hope that together we can also change perceptions and prejudices, firstly about bowel disease and dysfunction, followed by chronic or life limiting illness, thus removing one of the last taboos in society today.

When you purchased this e-Pub Programme you also bought the opportunity to join ‘Movements’ free of charge and to remain a ‘personal partner’. Your registration and ‘partnership’ will enable us to provide you with revised, updated versions to enable you to keep your Programme ‘up to date’ with the latest information, plus the comments and opinions of other participants, whether they be lay, commercial and professional. You will also be given the chance to regularly contribute to this growing work yourself via the update sheets that are provided within the ‘Success Workbook’ or via e-mail (mailto:[e-mail]), where you can send in your comments and suggestions. No matter who you are, or where you live, your experiences, opinions and suggestions really will count in the lives of others. It is vitally important that as many people as possible contribute to the growing content, variety and relevance of all of our physical Programmes, Kindle, iBook & e-Programmes.

Regardless of my efforts and research, and despite using the contributions of countless other sufferers and carers, my writing is, at first, inevitably going to be largely restricted to how I interpret their views and suggestions in the light of my own experiences. When you contribute to future versions the writing, ideas and experiences covered and shared will become broader and more relevant to other sufferers, their friends and families as well as yourself and me!

Important

Because of the desire to grow this and other Programmes in the first series, and get them published at the earliest possible opportunity, some of the sections, may initially seem a little lightweight, or unfinished, this is deliberate and will change as your contributions grow and sections develop or become complete. This was a decision taken to get this e-Pub Programme into the market quickly so that we could begin to collate more experiences and thoughts and share them with others as swiftly as possible. Half-way through the years it has taken me to develop and produce this first series of Programmes, I felt, following some timely and sensible advice from a very wise friend, that it would be better in the long run if we all had the chance to read about what a broad group of sufferers were going through as soon as possible, rather than the naturally limited number that I could correspond with or meet in person. With this in mind, my hope is that this work becomes, ‘less mine and more yours - belonging to everyone’, very quickly after its initial publication.

As part of the initial funding arrangements to get this project off the ground, I approached every commercial and professional enterprise I could find that is involved in the support of sufferers of IBD and other forms of bowel disease and dysfunction. If a company agreed to join me and become part of ‘Movements’, I agreed that this would be as a ‘commercial partner’ in the venture and that I would do my best to ensure that all readers of our Programmes would be made aware of the generosity of each company or practice. I also believed that such an arrangement could be an additional benefit for personal partners of ‘Movements’ as special offers etc may be made available from time to time by such organisations.

This has led to the development of a second, companion volume to this part of your ‘Beating Ulcerative Colitis - Your Own Ulcerative Colitis Success Programme for e-Pub’ containing a work called ‘The Marketplace’. This second volume gives each of the ‘commercial or professional partners’ in our community, large and small, a chance to profile themselves, and to let the rest of us know what services or products they provide to the broader IBD community. This volume will include statutory and voluntary bodies as well, ranging from the largest international organisations that serve us, down to regional self-help groups. Our aim will be to eventually create the ultimate directory of products and services for our community, so please try to do your bit also by supporting such companies, groups, professionals and practitioners whenever you can.

‘If you know of anyone who we have failed to include, please let me know who they are and I will contact them, even if they only currently operate within your local area.

‘Movements’ will develop into more than simply an information base - in fact we aim to support you in as many ways as we can. So the third volume of your e-Pub Programme contains my Journal/Diary and encouragement for you to keep your own. Even you don’t wish to organise it yourself, the available ‘Success Workbook’ will also be the point for all of the forms and other aids that together we conjure up to make your journey as easy as possible. As with other sections of the e-Pub Programme, the success of this volume in the long-term will owe a great deal to you and your future input. Most importantly perhaps, within the ‘Success Workbook’, you will find a ‘Movements’ registration form and update forms for use when you tell us who you are, and when you wish to submit your ideas, strategies and comments. Our overriding theme is ‘Community, Concern & Care through Communication’ - ‘Movements’ will offer this and much, much more, for I am convinced that whoever we are within the IBD community we all have so much to give and share for the benefit of everyone.

Definitions

‘Sharp Edge Publishing’ is the publisher of the Programmes, e-Programmes, Kindle Programmes & ‘Success Workbooks’, there is an ISBN reference available for each of our Programmes.

‘Movements’ is not a ‘club, association or society’. Whilst ‘Movements’ is owned by ‘Sharp Edge’, it is really just a community bound together by an ideal, and the opportunity to inform and encourage each other. It is driven by the need to seek the best way forward to successfully manage our condition and our circumstances.

‘Personal partners’ are individual participants of the ‘Movements’ Programme. Participation is derived by purchasing a Programme, Kindle Programme, or e-Programme, and Success Workbook.

‘Commercial partners’ are companies or organisations featured within the Programmes, Kindle Programmes, or e-Programmes, and especially within ‘The Marketplace’.

‘Professional partners’ are those engaged in practices which may provide services and support to the IBD community, i.e. Financial Advisers, Solicitors etc.

‘Practitioner partners’ are those working within the medical community, often in a private capacity, either as Allopathic or CAM practitioners.

The term ‘Movements’ partner (whether personal, professional, practitioner or commercial) in this context does not confer any membership status, responsibility, liability or benefit to any person or group of persons, beyond the right to submit comments or material for consideration, in the knowledge that it may be included in ‘updates’ for distribution within the published Programmes and possible inclusion in future editions.

‘Movements’ Milestones Day Book

We aim to create a separate publication containing only encouraging stories from all of our ‘partners’, to help folks get through particularly difficult days during flare-ups or other events. If you have a special event or story that you are happy to share with others, then please drop me a line, clearly stating that your submission is for the ‘Milestones Day Book project’.

'Movements’ Partners Emergency Kit

We believe that there is a real need for a kit that should be available for ‘partners’, which would enable them to plan for a toilet emergency. This should be of value to IBD sufferers and would be similar to those designed for use by folks with an ileal pouch and ostomists alike. We are currently in discussions with several leading manufacturers to see if the creation of a universal handy kit could be made available for ‘Movements partners’ for little or no cost that would match the excellent kit that is currently provided for ostomists when they leave hospital. I will keep you posted!

Digital Editions

Our world is changing rapidly and whilst the ‘Movements’ ideal of a ‘universal community’, sharing information and experiences, strategies and ideas, is a constant, the world of publishing isn’t. To this end we are also developing completely ‘digital’ versions of our Programmes across all of the latest platforms, i.e. using Kindle, PDF, iBooks & ePub, and more as they come along. Watch this space!

Who is this e-Pub Programme written for?

‘Patients who understand the natural course and best management of their disease are less frustrated by its complications and better able to tolerate the effects of illness and treatments. Informed patients also raise the consciousness of the medical community, enabling their doctors to learn more about the best possible treatments for them’. - Crohn’s & Colitis Foundation of America Inc

1. Anyone who wishes to be aware of ulcerative colitis and its symptoms and how to successfully manage living with this condition.

2. Anyone who has been diagnosed by a GP/Physician as having or suspected by them of having, proctitis and/or ulcerative colitis, and who wishes to understand the disease.

3. Anyone wishing to take steps to minimise the risk of developing Inflammatory Bowel Disease (IBD) & ulcerative colitis in particular (Crohn’s disease is covered in other Programmes within the ‘Beating Bowel Disease’ series).

4. The families and/or lay carers of those diagnosed as suffering from ulcerative colitis.

5. All professionals involved in the provision of support, products and services for sufferers of IBD.

Never forget that any and all abdominal symptoms that persist should be reported to and investigated by a qualified medical practitioner, never attempt to self-diagnose.

All of the lifestyle information, shared experiences and comment contained within this e-Pub Programme are just that, a collection of observations and comment obtained from countless sources, both lay and professional, as well as the author’s record of his own personal experience of living with IBD. The developing health, lifestyle and dietary information contained within this, your copy of ‘Beating Ulcerative Colitis - Your Own Ulcerative Colitis Success Programme for e-Pub’, are offered as descriptions, comments or suggestions based upon the shared experiences of others, and ultimately your own.

Any Programme aimed at helping you to improve your health and quality of life must only be undertaken following consultation with, and advice and support from, your own medical practitioner. Whilst this e-Pub Programme has been designed to be capable of adaptation to meet your own set of personal circumstances, it is not intended to replace or supersede any existing medical advice, nor dissuade you from following any future recommendations made by your care team.

The author, publisher, or future contributors cannot assume any responsibility if any of the information, lifestyle, attitude or dietary suggestions contained within this e-Pub Programme do not have the desired or expected effect to the level hoped for by the reader. Never forget too that we are all unique, what helps one may hinder another, it is you and your care team that will choose to make the difference for you. Together with them, you will be the reason for the success of your Programme and management of your ulcerative colitis.

Take every day as it comes, life is always an adventure, tackle new things at your own pace, always be kind to yourself, contribute to ‘Movements’ and our updates as often or as little as you wish.

Never ever believe that you are alone with your condition - for I and many others have been there too. All over this country and in the world, around 5 million others are today living with similar symptoms to yours and have had the same questions, concerns and fears that you may also have had.

We all share much of what you are going through!

Finally always consult and listen to a qualified medical practitioner before taking any action, before or after reading any of the information contained within these pages - and remember this is your personal Programme (& Success Workbook, if you have one), keep it at the heart of your own successful coping strategy, and develop it in conjunction with your care team.

Most of all, when you are able to - laugh and have fun, for life is for living, even when you are living with ulcerative colitis - IBD - Inflammatory Bowel Disease!

How to read and use: ‘Beating Ulcerative Colitis - Your Own Ulcerative Colitis Success Programme for e-Pub’

‘The involvement of the sufferer in their own treatment is of vital importance’. - Gastroenterologist

This Programme and is the culmination of almost 40 years of suffering and learning to adapt to the need to live as normal as possible with what in my case was originally thought to be a dysfunctional and then found ultimately to be a diseased gut. The drive to provide a central focal point for the many millions of sufferers of bowel disease and dysfunction worldwide became paramount to me late in 1993, when thanks to a long stay in hospital and subsequent convalescence following my own original abdominal surgery, the opportunity arose to consider the difficulties I had experienced (along with the problems faced by fellow sufferers) in greater depth. During this time I discovered that although there was a great deal of literature available about the various aspects of the IBD condition, each was written largely from a single perspective and none looked at the total picture, nor did they offer any real hope to those living within a wide range of circumstances with the various symptoms and challenges that IBD or curative surgery cause (during my research I have bought and read over fifty books about IBD or various ways to relieve symptoms, so I write from a broad understanding of current literature).

What I believe was missing was a way that offered an approach to tying all of the diverse information, opinions and suggestions that exist about living with IBD, together in a relevant, personal manner - in a way that considered what it ‘felt’ like to have IBD. I reasoned that perhaps a different kind of publication might be the answer, firstly a physical Programme that allowed readers to discover and then select the most suitable approaches available to meet their needs, matched to their circumstances - written for them and ultimately by them, followed by a digital Programme (Kindle, e-Pub or PDF), possibly supported by a 'Success Workbook'. Hence the idea of the ‘Organic’ or ‘Living Book’ was hatched. The Programme contained here has been developed from this original aim and is designed and published to try to achieve all of these lofty ideals. I am not however arrogant enough to believe that I have created such a perfect and complete work within these files and pages, despite many years of effort. What is possible however is that between all of us we will together create such a work in the near future - in many different formats - for now I have merely made a start.

The unique feature of this e-Pub Programme and the others within the series however is the ability for you the reader, and ultimately ‘partner’ in this process, to very quickly have a real impact on what each contains and thus on the lives of others. Many of you reading and working through this Programme may be doing so at a different stage in your own journey of discovering, suffering, adjusting to, learning about and then freeing yourself from many of the symptoms that you experience of ulcerative colitis. Much of what you read within these pages may not be part of your 'journey' to date or may not appeal to you as a basis for changing your relationship with your condition. On the other hand, you and all other readers will have the opportunity to explore every symptom and visit and consider all of the known and suggested ‘cures’ and ‘methods’ for alleviating, controlling or ultimately beating your ulcerative colitis and its associated symptoms.

This e-Pub Programme is designed to become your own ‘library’ of information and ideas. I cannot make any predictions about how much of it will benefit you, but what is obvious is that the more you invest of yourself in the Programme, to personalise it, make it your own, recording your disappointments and successes, the more it will become a wonderful record of a unique journey that you can then possibly share with others. As you become another improved, or ex-sufferer, who has grown in confidence over their disease management or recovery rate, perhaps then, together with your contributions, we will be able to take ulcerative colitis and all forms of bowel disease and dysfunction out of the darkened ghetto of fear, ignorance and misunderstanding, into the light of public awareness, compassion and understanding.

To gain the maximum benefit from this Programme (& any Success Workbook) you are advised to –

1. Take time to study the various sections. Written in a casual, almost conversational style, most are intentionally reasonably short and all are meant to be easy to understand. Be prepared to mark key sections and passages to highlight specific concerns, successes or ideas for using yourself or for passing on to others. If a section seems unfinished or light on information and you are able to fill in the gaps then please write to me as soon as possible. If I had tried to complete all of the sections before this version was published it may have been delayed by a further year or so. I for one do not believe it would have been worth the wait, for the longer the text stayed on my computer the greater the time it would be before anyone received any benefit from all of the ideas it stored.

2. Use the spaces within the Success Workbook sections that are there for your personal notes. If you don’t have, or don’t want to write in, your own Workbook, then take a copy of the relevant pages (for your own use only - please) or use a loose leaf pad, and build up a personal portfolio of notes and action points for yourself. You could perhaps also keep these within the Workbook binder, or in a separate ring binder of your own, just for your use.

3. Ensure that when you ‘get into’ the Programme, straight away from day one, you do so firstly with a ‘calm frame of mind’ and secondly with an ‘open attitude’ that is ‘possibility based’ - i.e. starting from the premise that everything may work for you and that this should be a real positive step for you. If you have not already done so, it may be a good idea to read the Welcome to ‘Movements’ section at the front, after you have finished reading this one, it will help you to understand the thinking behind this project.

4. Never forget that this is your Programme - read and act on it for yourself, at your own pace - it has after all been prepared for you and may eventually be largely written by you.

5. Try not to let any negative thoughts or ideas hinder your progress, if you do have any such recurring thoughts, jot them down in the ‘Sin Bin’ section of your Workbook (see the Journal volume) and leave them there, especially if you are being very honest with yourself. Incidentally we are working on an inspiring ‘Movements Milestones Day Book’ that should help anyone to cope with such thoughts and feelings, especially on the darker days when your ulcerative colitis is a greater challenge than usual. More info on this separate project is to be found within the previous Welcome to ‘Movements’ section.

6. Use the various sections and suggestions to their fullest extent and be prepared to revisit these as you go along - they will help you to realise and then remember what works for you.

7. The contents/running order of the Success Workbook or any loose leaf Workbook you use are not set in tablets of stone. If you wish to, take advantage of the format and re-arrange the sections into any order that suits you. Each is backed by a separate essay within this Programme, often containing recurring themes from differing perspectives.

8. Buying and owning ‘Beating Ulcerative Colitis - Your Own Ulcerative Colitis Success Programme for e-Pub’ grants you the right to copy and use any part of the materials - for your own use only - use this advantage for your own benefit - but please don’t allow an abuse of it. The more copies of all of our Programmes we sell the greater will be the funding contribution that will be given to support less fortunate sufferers and their families and to fund further research into this troubled gut that so many of us seem to share - unauthorised copies will spoil this aim as the levels of funding we will be able to contribute will be reduced!

9. Read the section on ‘Mindmapping & Mindscaping’ early on, it will help you to understand how your mind works, and perhaps a little about mine as well.

10. Although this e-Pub Programme and separately available ‘Success Workbook’ is designed to be a stand-alone source of help to ulcerative colitis sufferers and their loved ones, its benefits will be enhanced greatly if you also keep in touch after you make progress, especially if your symptoms are under control or have disappeared. Continuing to be a ‘personal partner’ will also allow you to give, share and receive so much more from others who are also taking part in a similar journey to yours. It will also be your passport to continuing updates.

11. To gain the maximum benefit from the Programme you are also advised to contribute! One of the strengths of this e-Pub Programme is the relationship that you will develop with all of the other ‘readers/partners’. Your willingness to contribute to the body of information and experiences that this Programme will continue to build and develop through the updates system, will greatly enhance its quality and value as you share your successes and challenges, firstly with me and then ultimately with everyone else.

12. Take note of the companies, charities, organisations and practitioners that are profiled within ‘The Marketplace’ contained in the second companion volume, and support them if you are able. They are along for the journey as well and many have already declared their commitment to your success by financially contributing to become ‘corporate or commercial partners’ as well as continuously improving their own range of products and services that directly or indirectly support IBD sufferers. Incidentally as ‘The Marketplace’ - ‘Volume two’ - of this Programme is more than just a directory of products and services, the profiles of each of the contributors are meant to provide you with further information on those who are constantly aiming to bring you and the rest of us relief from our daily challenges. There is also an opportunity for those who are customers to let me have feedback, which will form the ‘Movements Partners Profile’ section of each entry. This feedback will be useful for other ‘Movements personal partners’ and for our ‘commercial partners’ too. Also, if you know of any company, service or practitioner who is missing from ‘The Marketplace’ who you believe should be invited to join us, please send me their details and I will contact them to arrange for their immediate inclusion (there is a nomination form in the Success Workbook to help you - or you could simply e-mail ([e-mail]).

13. Read and inwardly digest. Simple ownership of this Programme and a Workbook is not enough. It will not do much for you on your e-Pub device, digital reader, phone or computer, and resting the Workbook on a bookshelf or levelling off a table leg (ring-binders are notoriously bad for this) is a complete waste of your resource. Taking the plunge and buying a copy was a great first step, particularly at the price. You now need to use it, work through it, personalise it and tell your medical practitioner and others (including me) how you are getting on. As already requested please let me have your feedback, either as you go along, or when you have finished your first reading. Especially tell me if you spot any errors or ways that we can improve the contents for you and other readers through the regular updates as well as the second and further editions.

14. Maintain your e-Pub Programme by overwriting or saving the revised versions when they arrive (this will not be to a set timetable). Your Programme is formed by Volumes, Chapters, Sections and pages. Any updated editions will either contain replacement pages or possibly a completely fresh version. As the e-Pub Programme develops many pages will be replaced with new ones that contain revised information or illustrations (so keep lots of notes in your ‘Success Workbook’, or similar personal record.

15. Finally - and this message is repeated throughout all of our Programmes, I hope you will glean from these pages that you are not alone with your condition - we are all with you every inch of the way. On behalf of all other sufferers, I am committed to you living successfully with your IBD. I have experienced many, if not all, of the symptoms of living with this chronic condition, together with both clinical and surgical interventions. The inclusion of, pretty frank, extracts from my own Journal/Diary, means that as the project develops you will also get an insight into my own ongoing challenges and progress too.

A final thought from the beginning:

This Programme has been written to help you to overcome the difficulties of living with ulcerative colitis. If any of it frightens you, then I apologise here, for this has not been my intention. However, rather than aim for literary awards, I did set out to be as clear, honest and relevant as I possibly could be. If any part of the e-Pub Programme causes you concern please let me know about it and, if I am able, I will try to modify it in later editions and through the issue of the updates. Notwithstanding this, ulcerative colitis is a form of Inflammatory Bowel Disease (IBD), and I do not wish to lessen the seriousness of the condition and its impact on lives by being too trite, cautious, casual or flippant – I, and many others have suffered too much pain for that. How long it will take you to read all of the material contained within the Programme will depend upon your circumstances and your own needs and desires. The layout is such that each part of the whole, i.e. each section, can be read and reasonably understood on its own (that is also why some ideas and comments are repeated throughout). The loose-leaf format of the Success Workbook also allows you to store or remove pages or forms so that you do not have to carry everything around with you at all times. Treat the material like a pair of old but very comfortable slippers, as part of your life and designed to make that life better.

When you are considering your own situation please take time to remember others who are on a similar journey, and do not forget that any suggestion or tip that has helped you, no matter how small, could also do the same for many others all over the world, so please share your thoughts and ideas via the ‘Movements’ updates (see the ‘Journal’ volume of the Success Workbook).

What matters is that together we will challenge the damaging effects of ulcerative colitis successfully!!

An Important Medical Disclaimer!

The content of ‘Beating Ulcerative Colitis - Your Own Ulcerative Colitis Success Programme for e-Pub’ is written only to educate, support and inform.

Under no circumstances is it meant to replace orthodox medical treatments and the expert care and advice of a qualified GP, physician, surgeon, or care team.

Sharp Edge Publishing and ‘Movements’ does not render medical advice to its customers or ‘partners’.

The ‘Movements’ Programme and its updates are only a vehicle for the sharing of information and life experiences. Whilst every reasonable care is taken to ensure the accuracy of information shared and provided, rapid advances in medicine and treatments may cause information contained here to become outdated, invalid or subject to debate. Whilst such is our aim, ongoing accuracy cannot be guaranteed.

‘Sharp Edge Publishing’ and contributors to ‘Movements’ programmes, Kindle, PDF & e-Programmes assume no responsibility for how information presented is then used by individuals or groups. If you believe for any reason, that you may be unwell, always seek the advice of your GP, physician or member of your care team in the first instance.

For the sake of confidentiality, it has been necessary to change the names of many of the people mentioned or featured within this e-Pub Programme. In all cases the sources of information and comment have been promised absolute and complete confidentiality when it has been requested (this promise will also be given to future ‘update’ contributors).

To get the best from this e-Pub Programme and any Workbook, it is essential that you renew and then maintain your relationship with ‘Movements’ and renew your personal copy regularly with the updated version provided.

Copyright - All rights reserved.

Sorry to be so serious!!!

Volume One - The Programme

Chapter 1. The Welcome Sections

1. Preface

‘Properly, we should read for power. Man reading should be intensely alive. This book should be a ball of light in one’s hand’. - Ezra Pound

Very little of the material within this e-Pub Programme & any Workbook is entirely original. Although before I am accused of plagiarism I had better explain that a task such as writing a totally original book on any chronic medical condition would be very difficult, in the case of ulcerative colitis it is impossible. We are only in possession of all of the knowledge that we currently have about the function of the gut because of the sterling work of those who have gone before us. So whilst the contents may not be totally original, the concept, thanks to the countless number of individuals who have been willing to share their experience of Inflammatory Bowel Disease (IBD), really is. These contributors seek to understand their condition whilst also living the best life they can with it. Thanks to them, and everyone else who joins in, this Programme may, for the foreseeable future, play a role in expanding the body of knowledge and shared experience of IBD sufferers.

The purpose of this e-Pub Programme then is clear and is two-fold:

From its very conception through to the final publication, it has been and will continue to be a ‘distillation of all of the available comment and thinking’ I have been able to find on, and approaches to, the challenge that is life with this type of IBD. It is deliberately presented in an easy going readable style, and a considerable amount of information contained here may surprise you, for I have searched in many unorthodox places for ideas that may be of use to sufferers. Many techniques and strategies that work for individuals with other forms of chronic illness have been suggested as worthy of consideration for those suffering with ulcerative colitis - they have been offered with very little to lose but a lot to gain, and may provide a basis for parts of your own personal Programme and success strategy. There is a real chance that many of the sections will initially seem irrelevant to you. I really believe though that all are at least worth a read, if only so that you can give me feedback on how you feel about them. On the other hand if something you hadn’t previously considered actually works for you, then rejoice, for if it does we have all moved forward - and again perhaps you could let me know how you have fared.

It is also a ‘call to action’ for each individual, (whether you are a sufferer, family member, carer, colleague, friend, health-care professional or interested party) with a desire to support the control and ultimately the eradication of IBD.

Many of the thoughts, practical information and ideas that I have picked up during my own healing journey, after the removal of my colon, have been generously shared with me by countless others, often with an openness and candour that was quite breathtaking. Now, through the pages of this e-Pub Programme I am doing the same, acting as a conduit for information and ideas, passing on thoughts and suggested approaches, including your own, to managing this condition, hopefully this time with a much wider audience, yet also because most of us read alone, especially with you on a one to one basis.

The style of writing in this e-Pub Programme is almost conversational, and perhaps sometimes controversial, because I want us to be able to fearlessly address your situation together, as if I was alongside you as you read and consider your response to the information contained. Ultimately though this is your Programme, so your experiences, ideas and views, no matter what your perspective is, are more important here than mine!

The format owes much to the input of professional and lay carers as well as other sufferers. I have also enjoyed great support from several long-standing friends. All have been willing to listen to details of the sometimes very slow progress I have made over the months, and then years that this project has taken to bring to fruition. To each one of them I offer my sincere thanks (most of their names are to be found elsewhere). The excellent logos, illustrations and the layout that will develop within these pages owe much to the work of a brilliant young illustrator, my friend and colleague, Andrew Gordon. Andrew lives daily with the symptoms of Crohn’s disease and has also been a major contributor to the companion -‘Beating Crohn’s Disease – Your Own Crohn’s Disease Success Programme’.

The eventual publication of the first of these Programmes is also largely down to another friend, Gary Reed, our Management Consultant. Gary, instead of saving struggling businesses or growing the balance sheets of huge manufacturing concerns, has been spending plenty of his time supporting this project, offering guidance, criticism and encouragement. By guiding and then sometimes forcibly cajoling me to meet my own deadlines, he has ensured that my feet have remained firmly on the ground.

Positivity:

Living with and then overcoming any chronic illness, like success in life itself, is a long but often rewarding set of events and experiences. During my own struggles I have heard of and also met so many folks who I can only describe as ‘over comers’. These are people with such will power and tenacity, and with such a love for life itself, that their positive drive and commitment to their future has frankly often left me speechless and humbled. I hope that their stories and ideas, as contained here will be able to help you to succeed in achieving your own health goals. I further hope that with your feedback, through the pages of this e-Pub Programme I may also become a full member of your health care team - staying with you all the way as you also successfully ‘overcome’ your own challenges.

For all of those who have been prepared to contribute their thoughts and suggestions to this Programme, there has been a common thread. It has been this - never, ever give up. Things will get better, the pain will subside, the struggle will end, a way will be found, eventually, to beat all that is ulcerative colitis, it is up to all of us to help to find that way as soon as possible, and in the meantime to help and support each other.

2. Acknowledgements

‘Hello! Welcome to, ‘Beating Ulcerative Colitis – Your Own Ulcerative Colitis Success Programme for e-Pub.’ - Keith B.

This Programme is part of a series of publications that are aimed at helping sufferers of each of the many types of gut related illnesses and diseases that plague the lives of so many - conditions that tend to be kept secret from all but the very closest confidants of sufferers.

This series would not have been written though if it had not been for the tremendous support of many, many people. First of all I want to thank Margaret and Ben for their indefatigable support - for always being there, as wife and son they have shared almost every aspect of my journey I couldn’t wish for better travelling companions. It was their encouragement and patience as family and carers that gave me the will to face up to my condition, to finally agree to move onto surgery, convalescence and recovery. They also gave me the confidence to press on and to begin to live again both with the symptoms of IBD and then the clinical and surgical treatments.

My thanks and gratitude also go to my GP’s, Doctor Les Dobson, of The Bow St Surgery, Guisborough. Doctor Mike Betterton & Doctor Peter Lavelle of The Hillside Practice, Skelton. Consultant Surgeon Professor Ben Corbett and Consultant Anaesthetist Chandra Kumar, who together with the dedicated surgical, nursing and support staff of The Cleveland Nuffield Hospital, North Tees Hospital, Middlesbrough General Hospital and James Cook University Hospital (formerly South Cleveland Hospital), have ensured that I am still here and able to contribute. My very special thanks also go to Consultant Gastroenterologist, Professor Michael G. Bramble, who has treated my condition for over 21 years and has very kindly offered advice and criticism on much of what is written in many of the sections within this and other Programmes. As a valued member of the medical profession, Mike has no equal. His ability to never be phased by anything nature, or patients, throw at him has earned him far more friends within his community than he will ever realise (well he will now because he will have proof read this text). I must also mention here the sheer professionalism, encouragement and love that I and other sufferers have been shown by James Cook’s Colorectal Clinical Nurse Specialist Alison Beck, and Julie Morrisroe and Carole Younger, Senior Stoma Care Nurses of the former Langbaurgh NHS Primary Care Trust, now part of James Cook (thanks guys - ‘er ladies).

I am sure you will appreciate that there have been countless other people too, in addition to those above, who also deserve a similar mention. There is insufficient space here to list everyone who has also given of their time and/or skills to restore me back to health and bring this project to fruition, so I have put together a list of key supporters at the back of this volume. If you are missing from the list, please accept my apologies and let me know, I will do my best to rectify matters by way of an early update.

It is only with the ongoing help and support of the above, my family, colleagues, friends and so many others, who are at the back or did not wish to be named here that this project has developed from an idea into this series of ambitious global Programmes in a wide range of formats - thank you to every one of you. Most of all however, thank you if you have, for buying this copy of ‘Beating Ulcerative Colitis – Your Own Ulcerative Colitis Success Programme for e-Pub’. I know it was expensive, but for every copy sold the ‘Movements’ ideal will be allowed to grow and develop, helping sufferers worldwide to share their experiences and to become part of yours.

A significant donation will also be made for every copy sold to fund practical support for sufferers of IBD everywhere, as well as much needed research into the causes of bowel disease and dysfunction. I have no doubt that together our efforts will ultimately put an end to much suffering and will even save lives.

Included within the initial purchase price are of course, future updated versions that will eventually be published periodically plus other information for ‘partners’ via our website: www.movements.me.uk.

Please let me have your views concerning what you have read. Whether you agree, or disagree - what you are going through, your daily challenges and even what progress you are achieving yourself. Who knows, your contributions may well be included in future editions of this Programme.

It has been estimated by some commentators that there is currently around one diagnosed IBD sufferer per 4000 of the population in the developed world (accepted figures do vary and are subject to debate), with many more who haven’t yet sought a diagnosis and an even greater number where figures are still to be collated and published. If by pooling all of our individual stories together we can make the lives of many of them more tolerable then we will have all succeeded.

Cheerio and thank you again!

K.

3. Introduction

‘Medicine will turn one day to the prevention of diseases rather than their cure. Man was born to be healthy and the best medicine I know is an active and intelligent interest’. - Charles Darwin

It is quite common for books and programmes of this nature to be written as a result of the author’s personal experience, this one is no exception. Most of my early teens and adult life seem to have been plagued by what was usually referred to by my family or friends as a ‘gippy tummy’. During those years I became a good customer of the companies that supplied the pills and potions that either made you go to the loo, or stopped you from going too often. Social gatherings were always a challenge, with a regular need to ‘disappear’ for a trip to the toilet - a journey that was usually announced in whispered, almost conspiratorial tones to whoever was near to me at the time.

To many people, ulcerative colitis is something that they have heard of because someone who they know suffers with it. In my case, discovering what my childhood doctor and I had always assumed to be Irritable Bowel Syndrome (IBS) during my youth, was now, as I reached my thirties, actually something far more serious was a bit of a shock to the system. Yet it meant that my wide circle of friends, colleagues and acquaintances now also had someone that they knew who had ulcerative colitis – me!

As part of the Inflammatory Bowel Disease (IBD) family, ulcerative colitis was to become a part of every aspect of my life. Although I did my utmost to keep my illness under wraps, all of my ‘day to day’ activities, both at work and at home, were tempered by the need to cope with the restrictions that my condition placed on me. Everyone’s story is different though, set apart from the rest, each with its own drama and intensity - my story, possibly like yours and many others, was personal because the symptoms were so uniquely part of my every waking moment. Whilst they may have been similar to those of others, my years of suffering still belonged only to me, and yours I am sure you will find, seem to belong uniquely also only to you. This sense of isolation, being alone with our pain, urgency and fears has meant that until now, there has been no satisfactory mechanism that allowed each of us to express what was happening to us, within a collective, that as well as giving us a voice, also went some way towards answering our cries for help - as well as those of future sufferers.

‘Beating Ulcerative Colitis - Your Own Ulcerative Colitis Success Programme for e-Pub’, is far more than just my experiences and ideas though. They have only been the starting point, rather it has been written for you by others alongside me, and is now also being written also by you. For my part, all that I intend to do is to describe and then comment on what I have been through and what is happening to me now. I also wish to add to this by passing on the information and suggestions that I have received from countless others far more qualified than I, in the certain knowledge that you will surely benefit from some if not all of their collective wisdom and experience. This series of Programmes will never reach any natural conclusion (until a cure is found), for with each generation comes a new group of sufferers tackling their condition and circumstances in different way, with the support of those around them. This Programme, the creation of ‘Movements’ and the series to which it belongs, has been published principally to inform and support today’s sufferers and those to come in the future.

It is also as a call for openness, for the more we all share of ourselves, the more we shall understand our own situation, as well as that of each other. The original e-Programme PDF was deliberately offered with a loose-leaf Success Workbook for a very practical reason. I wanted to offer the flexibility that a normally bound book would prevent and I want everyone’s copy of the Programme to be an up to date resource that was always relevant to their situation and experience, and available to read on a wide range of equipment. The loose-leaf format of the Success Workbook allowed for a personalised programme to be developed by the ‘partner’. With this e-Pub Programme, you could either purchase a Success Workbook, or use your own ring binder, together with a loose-leaf file, for use alongside your reader.

I have aimed for as simple and user friendly a layout as possible and I have tried to make it able to become the most comprehensive Programme of information for sufferers of ulcerative colitis there is today. I hope you will agree that it works well. If however you disagree with anything then please let me know and also let me have your suggestions for any changes and improvements (e-mail me at mailto:[e-mail]). If you have bought one, you will see that the Workbook mirrors the volumes, giving you space to enter your own thoughts, additional information, ideas and fears - enabling you to really make this copy of the e-Pub Programme your very own.

Most of all there will be room for your plans, strategies and results. This is so that your copy of this unique Programme is structured around your needs and circumstances. Remove the Workbook sheets as you wish, and if you feel like it, re-arrange them also. Convert it into a system that suits your style the most. Above all, use the materials that are supplied, and if you do not want to spoil any of the pages, feel free to photocopy them - for your own use (if you are using your own system, the same applies - you control what is recorded etc).

Enjoy the information, humour and the poetry, contribute to the Programme, expand your mind and your life, take on board some or all of this growing body of experience that has been assembled from all corners of the globe – then join me as together we begin to end the rule that Inflammatory Bowel Disease has had over too many lives for far too long.

I really wish that someone had put together a series of Programmes like these a long time ago. In the early days, when I was first diagnosed and began to suffer symptoms, it would have made my journey of discovery less frightening by helping me to firstly understand what I was going through and secondly by offering readily accessible information on the easiest ways to adapt to living with ulcerative colitis - successfully!

If you have any questions or comments, especially on any topic that you feel the Programme has failed to address, or if you are able to add to our body of information and experiences, please complete one of the Update Sheets which are found within the ‘Journal’ volume of the Success Workbook (if you have bought one) and send it in, or simply write to me at the e-mail address provided.

I really am looking forward to hearing from you. Your ongoing feedback will make this project worthwhile.

4. Foreword

‘Suffering, which looks and feels like such a determined enemy, can be a valuable ally. Only you can decide which one it will be’. - Joni Eareckson-Tada

Ulcerative colitis, a form of Inflammatory Bowel Disease, or IBD to use the accepted abbreviation, is one of two increasingly common forms of bowel disease that people experience today. The other is Crohn’s disease, named after an American, Dr Burrill Crohn, who in 1932, along with his colleagues, Dr. Leon Ginzberg and Dr. Gordon Oppenheimer, of the Mount Sinai Hospital of New York, identified it as a distinct and separate disease.

My GP tells me that many of his patients who complain of tummy or bowel problems and who haven’t got Irritable Bowel Syndrome (IBS) or a case of food poisoning, are increasingly being diagnosed as sufferers of Inflammatory Bowel Disease (IBD). Despite these growing numbers, up to now, there has been no book, audio-tape or video that has formed a complete programme for individual sufferers of these forms of bowel disease and those around them, let alone an e-Pub Programme. The strength behind this version and indeed the series of which it is part, is that it has been prepared by someone who has endured many of the symptoms that others suffer and know only too well.

Keith Buckley has been a long-term sufferer of a dysfunctional colon, and was finally diagnosed as having ulcerative colitis when only in his early thirties. He has spent a lot of time, following his surgery, seeking out contemporary thinking on the function and control of problems surrounding the digestive system, both from the traditional and the complementary medicine camps. Keith is not a medical practitioner, until recently he was actually a Manager for a mortgage bank! He does however posses an almost evangelistic zeal for bringing bowel problems and more importantly, suggested solutions to such problems out into the public domain, and to bring also a logical, almost business-like approach to the awareness, understanding, treatment and management of the range of conditions and symptoms that are linked to many forms of bowel disease.

This e-Pub Programme and the separate Success Workbook have been produced with several aims: to share information and experiences, to raise awareness and considerable funds for support those suffering with these dreadful conditions and to enable further research into bowel disease in the widest possible context to be undertaken.

Keith is also seeking to provide a focal point for all sufferers of such disease and dysfunction, offering a vehicle for what he calls - ‘a cross condition exchange of views and suggestions for the successful personal management of our various challenges’. Such an aim needs widespread support, I therefore commend this Programme to you - buy several copies, give them to fellow sufferers, offer them as presents, spread hope so that together we can all improve our quality of life!

All of the diseases and syndromes that are linked to the function of the digestive process cause more chronic suffering and personal misery than almost any other health related matter, yet the funding for research into the causes is paltry compared to other areas of medicine.

If Keith goes some way to changing this situation, with our help, then we will all be winners!

Barry Cottril

5. Suggested optimum reading methods

‘Such a large body of work as this e-Pub Programme may seem daunting at first, so I have looked at why someone would have bought, and may now be reading, these volumes’. - Keith B. (again)

How you read or work through and use this Programme & any Workbook may be different depending on who you are and why you