Self-help Groups are the bedrock of The Gut Trust.  It’s previous incarnation, The IBS Network started as a collection of self-help groups at different locations throughout the country.  Some were very successful.  Others less so.  I used to talk to the group in Sheffield, but was somewhat dismayed and embarrassed when the discussion seemed to turn to how doctors didn’t recognise or care about IBS.  It seemed that all the grievances that the members had in their lives were being projected on their overworked GPs. 

 

Grievance never makes anybody better.  A relationship involves at least two people and, like a marriage, if you want it to work, you have to put something into it.  ‘My doctor’s useless,’  gets you nowhere.  It’s much better to take responsibility for the relationship and ask the question, ‘What can I do to get the most out of my doctor?’  This may then lead you into trying to find out more about your condition so you can have an informed dialogue. 

 

So if you can present your doctor with specific questions about diet, stress, drugs instead of overwhelming him with ‘the pain is dreadful and I just can’t cope any more’, you are likely to be able to work in a constructive partnership to manage your Irritable Bowel Syndrome (IBS).

 

The same applies to groups.  Don’t expect your group leader to come up with solutions.  Take a more active approach and try to get the most out of the group. 

 

Self help groups need to be structured.  I think they work better when there are held each week and there is a curriculum.  I designed the web-based IBS Self Management Programme to be run in groups as well as for individual study.  It not only contains a wealth of information, it has case histories and exercises that lend themselves to group interaction and reading that be prepared for the next meeting.  The leader should either be a health professional (with IBS?) or somebody with experience of managing groups.  They should facilitate and steer discussion rather then lead it.  The emphasis is to enable people to have the confidence to manage their own condition.

 

IBS is an individual condition.  There is no typical presentation.  The range of symptoms, the pattern of occurrence and what brings them on or takes them off is idiosyncratic.  There is no prescriptive solution.  Every IBS story has to be assessed on its own merit and requires an individual solution.  One useful exercise is for one group member each week to talk about their condition while the other members work with the facilitator to try to understand what it means and how best to manage it.  Perhaps 40 minutes each week should be devoted to that.  This not only helps the group to bond and communicate, it provides a safe place where problems can be talked about openly among friends.

 

Another important aspect of each group meeting is guided relaxation or hypnotherapy,  which trains people to relax the tension that is causing their symptoms and facilitate communication.  Tapes can be useful for this and can be purchased.

 

The focus of any self help group must be on management of the symptoms, but this requires an understanding of the condition and what causes it.  Instead of devoting valuable time to a formal lecture,  it is probably most useful for members to read prepared educational material on topics such as ‘What is IBS?’, ‘What are the causes of IBS?’ and ‘The Place of Complementary Therapies.’  before the meeting and to allocate time for questions and clarification.  This would allow en more focus can be placed to important skills like how to manage your diet, how to decode what your symptoms represent in terms of what has happened, how to recognise and manage the stresses in your life, how to manage anger, anxiety, depression,  how to get the most out  of your doctor,  how to manage IBS in the workplace, at home with the family, on public transport, abroad.  All of these topics are covered in detail in The IBS Self Management Programme.  Keeping a diary that documents the symptoms and relates them to diet or what is happening in your life can be a very useful aid to self discovery and group work. 

 

As time goes by and people become confident at working in the group, then they learn what helps them and can feed it back so that group members can suggest further modifications and learn from the experience of each other. 

 

Time should be allocated for extracurricular activities.  The hypnotherapist, Elizabeth Taylor in her original Therapeutic Group Programme used to invite group members to go on walks around Rossendale with her.  This proved very popular. Social activities can be arranged.  Insight into cooking for IBS can be encouraged by demonstrations or bringing in foods that have been prepared previously. 

 

The possiblities for recovery are legion, but one principle is crucial.  You will only get out of your group what you put into it.  Getting over IBS represents a challenge to engrained thinking and requires a change in attitude and behaviour.  So use your group constructively.  Engage with the other members and help each other find your own pathway to recovery.  

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