According to patient testimony, IBS is not well managed by the NHS. Patients complain that they are not listened to, treated as if they are a nuisance, discharged as soon as the tests come back negative, given treatments that do not work and notwithstanding continued illness, are rarely followed up.
Most GPs and many gastroenterologists see their primary role as making sure that their patients do not have a life threatening or treatable disease. Despite the Rome Criteria and NICE Guidelines, IBS tends to be treated as a diagnosis of exclusion. Most doctors are conscientious and well meaning, but in an overburdened and underfunded health care system, IBS comes way down the list of priorities
IBS is an illness that has no distinctive pathology, no definitive diagnosis, no reliable test, and no specific treatment. Nevertheless, the situation is not as hopeless as it might sound. People can and do get better, not always because of some specific treatment from their doctor, but often because they have found the answer themselves maybe through a change in the way they view their illness or live their lives. IBS is an individual illness; the causes, triggers, and treatments vary widely from person to person. Therefore people need to be helped to find their own way. Self help is recommended by NICE and if delivered by trained personell, can be an effective answer for IBS.
The web-based IBS Self Care Programme contains comprehensive information on the nature, diagnosis, causes and treatment of IBS, including sections on diet, drugs, complementary therapies and psychological therapies. But self help is not just about information; it is also about engagement, support, confidence and motivation. These aspects of healing can be delivered through a network of local self help groups. The purpose of self help groups is to empower people with IBS to have the confidence to manage their own condition with the support of their partners, friends and their health care professionals. Self help is about understanding the illness, understanding the person with the illness and managing the illness. The following sections of this post outline some of the topics that group leaders might select as a focus for meetings of their group.
Select specific topics from The IBS Self Care Programme and discuss them among your members. These might include: diet, probiotics, complementary therapies, drugs. Ask a local expert to come and talk. Do encourage the members of your group to join The IBS Network in order to access the majority of links and additional resources, which are only available to members.
Doctors and other healers have long appreciated that it is much more important to understand the person with the illness that the illness in the person. This is nowhere more true than in illnesses like IBS, where there is no concensus regarding diagnosis, cause or treatment.
Ask the members of your group to describe their symptoms; they will soon discover that they are all different. One person may have diarrhea, another constipation, another bloating. Most will also have a variety of other symptoms, such as fatigue, backache, indigestion, muscle pains and headaches. The factors that make people ill are also infinitely variable. One person’s IBS is not the same as another’s.
Self care therefore requires self knowledge; understanding what initiated the illness, what it might represent, what brings on the symptoms, and what helps to relieve them. You might facilitate that by a group discussion, in which members might describe their illness and share what works for them.
IBS is a condition that tends to fluctuate. Sometimes it flares up and gets worse and then it gets better. So encourage group members to keep a diary. Keep it simple. In ‘The IBS Symptom Tracker’, available to members of The IBS Network, it is suggested that you note when your symptoms flare up and then write down any changes in your diet, lifestyle or life situation or experience that might have occurred around that time.
If there is a link with food, it could be that you have eaten or drunk too much of something that you know can upset you – too rich a meal, too many onions, too much alcohol or just ‘too much’ – and your sensitive gut has complained. Or might it be that certain foods remind you of a particularly traumatic meal. Or perhaps you have read or been told that some foods are bad for you and have responded to that suggestion. Stress and worry can make you more sensitive to food. You may be able to eat more when you feel calmer.
‘Symptoms tend to flare up when something happens or when you have been ruminating about something that has happened or worrying about something that might happen. The most stressful aspects about our lives involve other people. Your diary may help you see a pattern in your symptoms and some meaning to them. Perhaps they come on every Monday when you go to work. Perhaps they get worse when you go on holiday. Perhaps it’s your mother-in-law. Once you begin to see a pattern, you may be able to deal with it.
Ask yourself why these things upset you. Maybe some situation or event reminds you of something that happened a long time ago; perhaps something shameful or depressing. Are you frightened of certain situations? Are you worried they may happen again?’
Get your members to keep a diary and find out for themselves. Ask a volunteer to present their diary and discuss it within the group.
When your group begins to bond, you could dedicate a whole session to exploring what started their IBS in the first place and why they were particularly susceptible. People have to feel safe to do this, but with confidence and safety, they can learn such a lot.
‘Ask yourself what was going on when your illness first started. Was it a particularly upsetting time? Had you had an attack of gastroenteritis? Had you been given several courses of antibiotics. Did you suffer from food allergy? What was your childhood like? Was it particularly traumatic. How did it make you feel? Our personality, the way we react to situations is all a result of our experience. We are all the product of what has happened to us, and the nature of the illness we may suffer from can represent that.’
Dedicate a session to what your members can do to relieve their own symptoms. This might include specific drugs and ‘diets’, but those are perhaps best tackled in individual sessions such as ‘What diet works for me’ or ‘Why diets don’t work for me’ or ‘What drugs can I get from my chemist?’ or ‘Are Probiotics the answer for IBS?’.
Organise one session on behavioural methods that involve the group. You might even have a group mindfulness or relaxation exercise at the end of each session. You could have a session on self hypnosis. You might introduce the concept of mindfulness, but emphasise that the route to mindfulness is highly individual and anything that gets a person ‘in the zone’.
‘Mindfulness is not just about sitting cross legged in a darkened room with josticks and candles and chanting mantras, though if that is your thing, it can help too. You might achieve the same relief with anything that requires a state of relaxed focus, like gardening, knitting, art, music, dance, jogging, swimming, walking the dog, playing with the children. Can you find some time and space for yourself? Can you switch off? Can you focus on the here and now instead of ruminating about the past or worrying about the future?’ Choose an activity that is meaningful for you; that is compatible with your beliefs and makes you feel good.’
Don’t do this straight away. Your group would need to bond and feel safe before members are willing to share personal details, especially as these may well be accompanied by a degree of guilt and shame. Never make anybody talk about things they don’t want to, but create the kind of ambience where it feels safe to do so. If a member of your group starts to talk, encourage the rest to listen and not interrupt or appear shocked or frightened by anything that comes up. Remain calm and don’t judge. Sharing painful secrets is a very risky business. Let people go at their own speed and try to prevent interruptions. If any of your group wishes to leave the room, let them.
People may even threaten to self harm or take their own life. Don’t panic. Just listen. Let them talk it out and suggest where they might seek individual help. As a group leader, it would be a really good idea to have contact details of local therapists or counselors, including The Samaritans.
With access to the relevant section in The IBS Self Care Programme, dedicate one session to this topic. Tell them about red flag symptoms. Get a GP in to talk about getting these symptoms in context. When do you need to worry about weight loss or rectal bleeding? How can you tell you’ve not got coeliac disease or cancer? Can you ask for a second opinion? Are allergy tests any good?
Could you run a self help group for IBS? If you would like to try, don’t be too daunted by your lack of knowledge or the responsibility. People with IBS will not expect you to have all the answers. Most of the information you need is on the IBS Self Care Programme. You don’t need to control or set a strict agenda. Your group can help select the topic during the previous meeting. Leading a group is more a matter of creating a relaxed and supportive environment where people feel they can talk. You just need to steer the discussion. Your group will do the rest. And The IBS Network will provide umbrella support and supervision.
Perhaps you have IBS yourself. By running a Self Help Group, you will gain the satisfaction of knowing that you are doing something to help others. In time you will see your group bond and become healthier and happier as they learn to take responsibility for their own health.
The IBS Network has just started running training programmes for self help group leaders. The first training day takes place in Sheffield this Saturday 22nd October.. There may still be a few places available. If you interested in that or future training days, contact The IBS Network on firstname.lastname@example.org or call n 0114 272 3253.