Watch the presentation I gave for the IBS Networks event the patients perspective about the petition to recognise that it’s not ‘just’ IBS. The petition is still open and you can sign it here if you wish https://www.change.org/p/all-political-parties-and-the-national-medical-director-recognise-it-s-not-just-irritable-bowel-syndrome-ibs
Its Not Just IBS Campaign-YouTube from CVC Event Services on Vimeo.
This month The IBS Network launched is new interactive on-line self-care plan for IBS, you may be wondering what it’s all about, and possibly not being a member you wouldn’t have access to it to try it out. Well, this blog will give you some more information to allow you to make your mind up before taking the plunge. Some questions you may be thinking of:
Why should I take responsibility for my IBS – surely I pay my taxes or health insurance to pay doctors to sort this out for me?
So, has this happened then? If your IBS has been helped you probably wouldn’t be looking for answers. IBS is a chronic condition that is poorly understood by the medical profession, and they freely accept this is the case. This condition is very similar to other misunderstood syndromes such as chronic fatigue and fibromyalgia, IBS is a problem of how the digestive system functions, or moves – looking at it using tests and instruments doesn’t lead to a diagnosis, as there is nothing yet that can be seen. This is either because it is caused by something that researchers haven’t yet found or it is purely a dysfunction in the way the gut moves (think of it as being similar to the different speeds your heart can beat.) It does not mean that it’s all in your head, or you do not feel pain or you do not suffer from difficult diarrhoea or constipation. The plan can give you information that will help you think of what else it could be, but sometimes accepting IBS for what it is will allow you to move on and try to help yourself. Everyone’s IBS symptoms are different, you are best placed to be able to help with your own IBS as you understand what makes your IBS flare up.
But I don’t understand what affects my IBS – it’s so complicated! 😦
This is where the self-care plan can help, you can use the symptom tracker for two to three weeks, it is a simple tool that helps you log areas that affect your IBS such as life events, diet, medication, disturbed sleep and exercise. We have kept it fairly simple so that you can focus on general areas initially making it easier to design your self-help package. You can then print a report that will show you when you feel better or worse and what happened to cause a change. This is also a very good report to take along to your healthcare provider, to help them to identify the best course of treatment for you.
For example – So my symptom checker has shown that every time I eat pasta I feel worse and every time I have a meeting with the MD at work I get diarrhoea. You can then use the information contained in the plan to check out how to change your diet to help you feel better and what can be done to relax before your meeting or what medications may help you.
This is fine to talk about but I find it really difficult to change my life!
The answer to this is we all find it difficult to change from time to time. Make one change at a time if you can, this will make it easier for you to use your symptom tracker to see if the change has helped – be SMART with your changes
Specific goals – makes them easier to manage. e.g. “I wish to reduce my levels of stress”, this is not specific enough, how are you going to reduce stress? By doing what?
Measurable – you need to be able to see the effect to feel really great about your achievement – use your symptom checker, or a food & mood diary.
Achievable – How are you going to make the change? Try to choose parts of your plan to change that you feel are much easier to achieve, this will give you lots more confidence to try the harder changes. For each change ask yourself the following question
‘on a scale of 1-10, 1 being very easy and 10 being very difficult – what would I score the ease of making this change?’ Try the ones that score lower initially.
Realistic – Think about if you can really achieve what you have planned – if it’s just too difficult to do, you will be setting yourself up to fail. Sometimes we can’t change some aspects of our lives, it is fine to accept this and PUT IT TO ONE SIDE, don’t keep focussing on what you can’t achieve. Another question to ask would be, is it the right time for me to make this change?
Time focussed – how long is it going to take? It may take a minimum of three weeks to change some aspect of your life and thinking how long you will need will help you to keep focussed.
Changing our lives, what we eat or how much exercise we do is a challenge, we all behave in a way that makes it easier to live our lives, but think about your symptoms – if you always do the same thing you will always get the same result – ask yourself do you want this to continue? what are you gaining from your IBS? What will changing mean? The care plan will help you think about your IBS and it contains exercises to help you understand your condition. Changing can take time and lapses are to be expected, it is what you do about a lapse that’s important – don’t put yourself down and feel a total failure, put it behind you as something that has happened (and was probably likely to happen!) and try again – small steps! Think and plan what you would do if you have a lapse in your planned changes before they happen and this will help. Don’t allow a lapse to become a relapse. Also plan to reward yourself when you reach each goal this will positively reinforce the changes you have made.
I have heard that having a practitioner actually helps with IBS? How will helping myself work?
All the information contained in the care plan has clinical evidence or experts in health have come to a consensus through experience that the information will help – we don’t yet have evidence that the self-help plan works as a whole, as it has only just been developed – this is something we hope to prove when people are starting to use it. There is a study that on-line self-help for other chronic conditions such as chronic fatigue* works, and whilst this doesn’t directly relate to IBS, with 10 – 20% of the population diagnosed a new way of helping needs to be developed.
If you are interested in the plan follow the link on the right hand side of this page or copy and post the following link
*Nijhof, Bleijenberg, Uiterwaal, Kimpen, Putte (2012) Effectiveness of an internet based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial The Lancet published on line March 1, 2012
Clinical Alimentary 