Monday 31 May 2010

A Chronies & Collies Grand Day Out! Summer 2010

For some time now I have been very excited about planning this day out and now I'm very close to launching it. This is a special day for Crohnies and Collies and it will be truly a day to remember. I am sure it will such an overwhelming success that it will become an annual event.
This day will be very different  from anything else I've seen - it will be a fun, entertaining, hugely valuable, informative event FOR PEOPLE WITH IBD to get together and spend a day of freedom amongst people facing the same challenges they face.
There will be.....
  • Inspiring talks from high profile figures with IBD telling us how they dealt with obstacles in their high pressure lives to achieve so much.  - (You will be truly amazed!!!!).
  • Highly successful people will share their secrets of how they overcame their IBD to make a full recovery - and go on to fulfil their dreams
  • Breakout discussion groups where everyone gets to share their experience of various challenges and come up with great ideas to make life better.
  • Massive group dance participation - yes, you will enjoy it - even if you can't dance a step!!
  • Networking - "bag a buddy" - become an IBD buddy and establish contact with your very own inspritational IBD buddy.
  • Tuition in whacky valuable processes to get your symptoms under control, including insomnia, panic attacks and instant pain relief. 
  • Learn to interpret your dreams - your mind's way of telling you what you need to do!!
  • Book signings
  • A chance to win a state of the art 121 behaviour change programme.
  • And..... if we're lucky.... we'll have a solo performed live by our mystery international rockstar guest!! I can hardly wait!!
But wait.... before this can go ahead I need to know that our special guests will be performing to a big audience of Crohnies and Collies... - so you need to TELL ME NOW that it floats you boat AND that you will be able to attend this ALL DAY EVENT!!
email me on and tell me "Yes Joy - please put on this GDO (Grand Day Out) for me".
Remember 1. This is ONLY for Crohnies and Collies or their carers.
Remember 2. To make it happen I need to know that there are enough people interested .
Together we can make this happen!
I look forward to hearing from you very soon!!!!
Kindest regards,

Wednesday 26 May 2010

Restless Legs

I was prompted to post this resource after replying to a request for help on a Crohn's forum concerning Restless Leg Syndrome. It occurred to me that it might be helpful to other Crohnies.

For those unfamiliar with the condition, Restless Leg takes a number of different forms, but in the main the symptoms include involuntary limb movements of varying force and frequency accompanied by one or more constant or increasing sensations in the legs including pins and needles, numbness, crawling, extreme heat and cold and  agitation. It is usually worse at night and is associated with insomnia.

I looked into this syndrome a great deal when my Auntie asked me for help. She was absolutely tormented by RL- couldn't sit down comfortably during the day, even to have a meal or after strenuous gardening - having to get up and move around, and at night it kept her wide awake,  no matter how exhausted she was. I discovered that there seem to be as many variations of the condition as sufferers and there is a lot of disagreement about the diagnosis. In her case we associated her symptoms with the cocktail of medication she was taking, as she was acutely sensitive to most drugs.

Never happy to leave it at that, I felt sure we could get to the bottom of this reaction and achieve at least some improvement.We explored which situations made the condition better and worse (I am well used to analysing symptoms and matching them with conditions and combinations of situations in my work with clients' conditions): The conclusions we drew with her condition were:

1. The symptoms worsen with tiredness - which makes it doubly infuriating since the RL condition itself causes insomnia.

2. Worry makes it worse.

3. Waiting, and other "imposed inactivity" makes it worse.

4. Engrossment in something enjoyable takes it away or alleviates it depending on the degree of absorption.

5. Relaxation makes it better.

6. Hypnosis works best of all the things we tried. (I am an NLP Master Practitioner and Hypnotherapist). This might sound rather insane - but the brain plays some really cute tricks: Our interpretation of the uncontrollable and irratic movement was that the movement was the brain's inappropriate overactivity owing to the medication that she was taking: her overactive mind was trying to accomplish things and solve problems and wouldn't let her body rest. I don't know whether you meds insomniacs and meds Restless Leg'ers and can identify with that?

In her case the approach was to persuade her overactive mind that she deserved a rest and that it had a duty to work out how to rest in order to do justice to tomorrow's tasks. That way we were turning the relaxation into an active task that fully absorbed her unconscious mind and so allowed her to switch off the need to do other things. Well it worked for her - but like I said - everyone is different. We did most of this work over the phone as we lived over 200 miles apart, and that seemed just as effective as in person. It was rather challenging as initially, the condition prevented her from relaxing sufficiently to be receptive to the process. It was as though her mind was fighting the relaxation, but once she was talked into relaxing, she was very receptive and the relief was very effective.

Hope this helps. Your comments are very welcome. Joy x

Top Secret!

The Prof has spoken! I had my wrists slapped ever so gently for blogging about the pilot study - for fear that it might jeopardise the research findings. I was very embarrassed. I can tell you all about it once it's complete but for the moment, Mum's the word.

Thursday 13 May 2010

Insomnia? I'm feeling rather brave....

I've been reading the accounts of many Crohnies suffering from insomnia. These symptoms of insomnia are apprently side effects of some types of medication. I have many client cases to demonstrate the success of the programme I have created in which the tools and techniques deal very effectively with  insomnia resulting from e.g. stress and an inability to switch off. I have not so far, however dealt with insomnia induced by medication. After great deliberation I have decided to run an interative webinar (attendance strictly by invitation only) to test the effectiveness of this programme in dealing with medication induced insomnia.

I am relying on your feedback, folks!! If you are a Crohnie and suffer from insomnia which you associate with your medication, let me know whether you are interested in attending this webinar.(Please only apply if you are serious and fully intend to attend.)  If there are sufficient numbers interested, I will put the webinar together. There really need to be 100+ attendees so it would be great if you could forward this blog to your Crohnie mates. The interactive part of the webinar will feature attendees raising issues live. It should be very exciting. If it proves successful, there will be follow up webinars to explore feedback from the programme and track the results of the participants. This webinar could represent a breakthrough in the treatment of insomnia and I do hope you want to be part of therapeutic history. Please express your interest by emailing me at telling me of your experience of insomnia and your reasons for wanting to take part in the research. I look forward to hearing from you!!

Wednesday 12 May 2010

I’m so glad there’s some else who thinks humour and IBS / IBD treatment go together.

I’ve been euphorically repeating, “Fantastic” over and over for some minutes now, with the odd rejoicing hand clap. Fantastic in a good way – not, “beyond belief”

Why “Fantastic”?

I’ve just had my scheduled conversation with Peter Whorwell, Professor of Medicine and Gastroenterology at the University Hospital South Manchester and whose team undertakes research into functional gastrointestinal disorders as well as caring for large numbers of these patients from all over the UK. Peter Whorwell pioneered the use of hypnotherapy in the treatment of IBS (Irritable Bowel Syndrome) and published his first study on this topic in The Lancet in 1984. The blog that follows is about IBS, not IBD that I usually talk about. Nonetheless, the key idea of communication between the brain and the gut is common to both Peter’s approach and my own.

There are a number of reasons for this event warranting my “Fantastic” outburst:

First, Peter is a most amiable, down to earth, easy-to-talk-to person. Thanks to his lovely manner, we comfortably got down to business very quickly. Peter is a very busy man. He had just completed his ward rounds and hadn’t yet had a chance even to look at his diary for the day and yet he willingly gave me an hour of his time advising me on how to approach the various obstacles that would no doubt present themselves in the course of my research. It was soon apparent how he uses humour equally effectively in his work with patients as with the audiences that flock to hear him speak. To underline this, it resonated well with me when he said, “If I don’t make my patients smile I feel dreadful”. This man is clearly wedded to the wellbeing of his patients, and his exemplary results support that. I have to say I feel exactly the same – in fact, I will bury my usual modesty and say I receive many comments such as, “You can always tell when they’ve been to see Joy – they look transformed”. And indeed this is one of the essential ways in which I measure my effectiveness and I’m always energised when I hear other people’s passion for making patients happy. Peter lamented the fact that scant attention is paid to the patients’ happiness - this most important area of patient care. He related how students are sent on Communication Skills courses and taught how to recite their names and the confidentiality policy, but seemingly very little more in terms of creating rapport etc.

Second, he is so clearly able to communicate ideas in this very complex field in an easy, conversational manner. We covered a lot of ground. One subject was the ways of measuring the effectiveness of behavioural interventions - from using fMRI scans registering changes in the patient’s brain activity - to changes in activity at cellular level. We also talked about the difficulty of isolating the “active elements” in behaviour change programmes responsible for improvements in gut performance. If we can get fMRI’s (brain scans) in the picture and demonstrate real change in processing, this would attract a lot of interest. Now that would be very cool, but it costs £800 per half hour and not many research projects can find funding that stretches to this.

Third, I was absolutely astonished by what he told me about the remaining level of resistance amongst the medical profession to hypnotherapy as a treatment for IBS. I was under the misapprehension that it was an accepted and routinely prescribed modality. Years ago I saw mainstream TV programmes devoted to hypnotherapy and IBS featuring Peter and his team. The BBC website still covers his research findings and I’ve even heard Radio4’s Today programme feature the same topic, and yet many GI’s (Gastrointestinal consultants) remain un-persuaded? Peter referred again to the value of humour in breaking down barriers when talking to groups of sceptical GI’s unconvinced by the high quality scientific research he has led in this area. “I tend to take the p**s out of myself when addressing such audiences so that they don’t think (I’m mad)”. He added, “The problem is that so many of them are up their own bottoms”. My amusement turned to a completely different emotion as Peter went on to talk about the difficulty of gaining approval from the Primary Care Trusts (PCT’s) for hypnotherapy treatments in IBS cases compared with a course of CBT (Cognitive Behavioural Therapy).

He went on to explain how CBT has gained the badge of acceptability. That is to say, many decision makers may not know what CBT is, but its acceptability enables it to be prescribed despite the comparatively weaker evidence to support the effectiveness of CBT, especially in the long term.

This has given me an idea for future blogs – a review of CBT versus other talking therapies. I have to say I laughed out loud years ago when I discovered that CBT was termed “brief therapy” and yet the average duration of treatment was months, but that’s a story for another day.

Towards the end of the meeting I asked Peter whether he would be happy to be quoted on my blog and asked him to review the contents before it was released. “Would you be able to turn this around quite quickly?” I asked. “Oh yes” he said, “If you don’t hear from me within a week I will either not have received it or I’ll be dead!” That started me laughing again. Well thankfully he’s very much alive and kicking butts in the GI profession.

Thank you very much Professor Peter Whorwell. It was fantastic to talk with you and yes I will be delighted to keep you posted with my progress.

Tuesday 11 May 2010

Another exciting meeting with another eminent professor in the field.....

The excitement continues....

Today I have a scheduled virtual meeting with another eminent Professor of Gastroenterology whose enviable international reputation is for achiements in treating IBS with hypnotherapy. I originally contacted him with a view to him supervising my research into IBD (note the difference – IBS is Irritable Bowel Syndrome whereas IBD is Inflammatory Bowel Disease and the two are very different: IBS is an umbrella term for symptoms that involve pain and distention but no significant inflammation). The physical distance between us, however, would make that too complicated. He has, however, suggested that we talk to give me some advice on my research and I am very much looking forward to talking with him. (I’ll ask him whether he is happy for me to quote him in my forthcoming blogs - hopefully I'll remember).

One the areas I would like to discuss with him what questions he would like to have answered concerning the operation of the "little brain in the gut" and its interaction with the mind. The idea behind this is that I can explore the scope (whoops) for incorporating some of these questions into the pilot study – which would make it even more valuable.

I’ll let you know.....

Saturday 8 May 2010


What a week! Absolutely thrilling! Accompanied by my good friend, former university lecturer Ted, I had a meeting on Thursday with the Prof and his Clinical Research Fellow.

These guys don’t mess about – it was unbelievable. We talked about everything. Well, all the important things - like the importance of the trial being properly controlled in order to provide meaningful conclusions. We explored the means of measuring the success of the programme, recruitment of the candidates, the nature of the trial, its duration, its timing, ethics, data protection, confidentiality.....and so on.

The bottom line (sorry) is, after three hours, (during which the Clinical Research Fellow showed signs of expiring), we had a decision. What? – a decision for a secretary to arrange for my paper to be submitted to the sub-committee of a committee that sits only once in a blue moon? No! What transpired has in my experience to be a record in medical history: Getting a decision for a trial – whether yes or no - in three hours is unbelievable.

And in the end..... the Prof said YES! Yes means yes to a trial of between 10 – 15 people. This will start with a submission to the ethics committee in several weeks. When they are satisfied, the candidates can be selected and then.... the fun really starts. I shall be keeping you posted with the progress as it happens. Let the trial begin!

I'm going to ask the Porf and his Clinical Reaearch Fellow for their permission to reveal their identity on this blog and to tell you more about them. They are really amazing people - as borne out by their astonshingly pragmatic and masively sensible approach. Truly inspiring!

I’ll let you know what happens next.

Wednesday 5 May 2010

Now that I have something valuable to say.......

Friends, colleagues and Crohnies, lend me your guts! I have finally allowed myself to join the Bloggerati: such is my desire to share with you the blow by blow (yes there will be many inexcusable puns and jokes in appalling taste - note the title for example) excitement of my new neuro-gastroenterological research project.

Why the excitement?

I am sooooo excited about this new project because it is the culmination of my many years work designing and delivering behaviour change programmes. Over the years my programmes have been proven to bring about rapid change by helping people understand how they (and others) tick. Dramatic results have been achieved where previous interventions had failed. One of the most dramatic successes is in IBD – Crohn’s and Colitis - considered to be incurable.

The new project is a trial to quantify formally the effectiveness of this one to one programme in reducing or eliminating the symptoms of IBD.

In the next two weeks I’m discussing my research with one of the world’s leading Professors of Clinical Neurogastroenterology with a view to carrying out this research under his supervision. So I think you get an idea of how important this is.

My aim in sharing this blog with you is to spread the word about harnessing brain-gut communication. Some of you may be even interested in taking part in my research. The bottom line (ahem) is – I want Crohnies and UC’ers to be able to manage their bodies and live without limit!

Whenever I start work with new clients I ask them what would constitute success for them. Time and again I hear how liberating it would be if they could live without the stress of having to plan their entire existence around the location and availability of toilets. Older people tend to be less ambitious as, over the years, they have increasingly persuaded themselves to restrict their life within "safe" parameters. More or less everyone says they’d be euphoric just to go out to dinner without half their mind being on whether they were going to make it to the toilet or having to work out how to disappear from the restaurant in embarrassment without being seen. They want the choice of travelling to work more than ten minutes from home or to fly on a plane. They want to wake up in the morning relaxed and refreshed instead of being jolted awake by an urgent message from their guts and a brain screaming RUUUN! praying that the bathroom is clear.

When I hear wish lists like that, and I know the results I can achieve, how can I not do everything in my power to help Crohnies? When I know they can achieve all that and more, the thought of helping Crohnies everywhere achieve their wish list ignites my passion.

If you are a Crohnie or have IBD and are interested in finding out more about taking part in this research, please email me at and I’ll send you more details. Please only apply if you are serious about addressing your IBD. If you'd like to have a look at the other work I do, you can view some brief case histories at Please note that there is a strict limit to the number of participants as this is a one to one programme, so if you want to be on the programme, to be fair, priority will be given to the earliest responders, so do take action and email now if you want to be considered!

Essentially the programme will comprise unique state of the art behavioural tools and techniques developed for living life at a higher level. Be prepared to push the boundaries and also to have some fun. Selected participants will receive the programme on a one to one basis via Skype or MSN or webinar. Of course all participants' information will be absolutely anonymous and rigorous research ethics with be upheld at all times.

The start date for the programme is expected to be in about three months time, which means August 2010, so if you are interested, best get cracking and express your interest.

I am so thrilled. I’ll let you know what happens as the events and meetings occur, so keep checking in and you can share the excitement!!! What are you waiting for? I'm looking forward to hearing from you now!  BBFN : ) - J