Looking on the bright side

how VERY helpful! I can't help feeling that someone approaching a long term IBS sufferer with any implication that this is 'all in their head' is at best being extremely rude. When it's a researcher it's still worse! What possible 'secondary gain' could anyone get from having IBS!

I'm always a bit shocked when I see people attempt to de-legitimize IBS as a real condition. What purpose can that possibly serve? In this case, I feel like this 'researcher' is attempting to further her academic career at the expense of real people who deal with IBS day in and day out. Has this researcher even consulted with a gastroenterologist and had IBS explained to her? I can't imagine an MD supporting her study unless it acknowledges the physical aspects of IBS -- which would occur with or without a 'positive attitude.'

Hi guys - thanks for your comments, I'm glad it wasn't just me who got angry when they heard about this research!

To be absolutely fair to the researcher in question though I do have to add that I don't think she was trying to 'de-legitimise' IBS - she does realise that there are physical aspects to it, and she was part of the psychology department so she was bound to have a psychological take on things.

I would normally be more sympathetic to any kind of research on IBS (anything is better than nothing), it's just that her particular paper was trying to offer advice rather than simply collect info, and I really didn't agree with the advice being given (ie: keep your chin up and your symptoms will improve naturally).

There are certainly grounds for examining all aspects of IBS sufferers' lives, including their emotional states - the only approach to treating IBS that REALLY angers me is the one that says IBS is caused by the mind and then offers absolutely no treatment whatsoever.

If someone is so stressed or emotionally wrung out that they are causing themselves to have diarrhea 10 times a day then they clearly need help - and telling someone to "calm down and look on the bright side" is nowhere near good enough.

Although I have not read the paper, I am afraid I do not agree that the study should not be carried out. I would guess that the student has come up with a hypothesis (positive thinking can improve symptoms of IBS) and wants to test this hypothesis. I would expect the results to show that positive thinking would help IBS sufferers with mild to moderate pain, but I would not expect any functional differences to the bowels (i.e. decrease in constipation or diarrhea) or for significant help for people with severe pain.

I do however completely empathise with your points of view as I am sick of being patronised by various doctors who have told me that my IBS is caused by stress and is a psychiatric illness rather than a functional problem of the bowel (the last doctor who told me this, I asked him for the papers to back up his claim - these were not forthcoming).

Yes, this type of thinking really hurts, but I believe is extremely common. I also ran into these sorts of comments when dealing with infertility a few years back, which believe it or not is easier to talk about than IBS. I got the "just relax" patronizing remarks about that too--totally unhelpful. So, we don't talk about it much do we, even to family and friends who see our pain. We suck it up, do our best and thank God for sites like this!!!!

As the researcher in question I am deeply saddened both by the comments of the administrator and in particular by the members of this website. You have not read my research, nor my intention behind it and yet feel that they are entitled to criticise me without any reason or evidence to do so.

So let me clarify. First of all I do not think IBS is 'all in people's heads', in fact when i have been approached by the media to take part in programs with this ethos I have imediately refused.

My school of thought is health psychology, and it aims to bridge the gap betweeen medicine and alternatives to create a holistic approach whereby I view that health and illness are connected and can be affected by psychological factors and social factors too.

In this way I view IBS as A LEGITIMATE PHYSICAL ILLNESS, I just think that stress levels and other aspects affect the day to day running.

I decided to research IBS because my boyfried has it and was pushed from pillar to post by doctors who did not beleive him and medication that did not work, so I thought i would try an alternative approach.

My research stresses the physical aspects aspects as well as the psychological ones and includes diaries to record symptoms.

You say i have no understanding of IBS, well apart from my years of study, I also live with a partner who suffers day in day out, and many friends who do the same, and I am fully aware of the day to day problems, which is why i wanted to help.

Where on earth did the idea come from that i think people with IBS would get a secondary gain, that is unfounded and rediculous. I am so shocked and upset by the idea that I am only researching this to further my career, I could have researched anything and got paid to do it, instead I chose IBS because I was saddened by the lack of research and I wanted to do something to help.

Thanks for all your comments. I need to clarify a number of points here - I have clearly upset Carly, the researcher in question, and that was never my intention. I would like to apologise to her first of all, and say that I do not in any way think she is the 'bad guy' here - there is no question in my mind she is genuinely trying to help IBS sufferers with some legitimate IBS research.

I think David makes a good point - that while we are all sick of hearing "It's in your head", that is a different situation from a student who is trying to test a hypothesis.

I have sent a personal email to Carly to explain some of my points further. I would just like to reply to two of her points here.

The 'secondary gain' referred to was the idea that there can be some positive aspects of IBS, as quoted on page 22:

"You may think that having IBS has a number of consequences (effects) on your life, this can include anything that you feel has happened since your developing IBS. This is going to be very individual as it will depend on your life experiences, symptoms and your interests. The consequences can be negative or they can be positive. They can be directly related to your symptoms or indirectly related. An example of a negative consequence is, not being able to go for long car journeys; an example of a positive consequence is having more time to read for pleasure."

And my biggest area of objection was on page 30 where the research states:

"Thinking positively has been shown to improve IBS, so think positively and belief (sic) not only that your IBS is curable but that you are in control of your symptoms. So next time you are unwell, e.g. in severe pain, don’t just give in to it, tell yourself that you can make it go away, think positively and you will see how much your symptoms improve both in the short term and the long term."

thanks for your critical comments, and for your personal e-mail, although i object to general 'bad mouthing' i am obviously happy to recieve any direct critical commentry as this will help to improve me booklet in the future. I think you are right that the issue of 'secondary gain' needs more clarity, the point i am attempting to make is that all bad situations can have some positive aspects, I will look over the wording and the examples used though and see how i can clafiy. Regarding the comment on page 30, although this is evidence based (Rutter and Rutter, 2000) i admit upon rereading it that the language is too strong, and it should say may, rather than will. On a final point i would like to clarify that thinking positively is only one aspect of the study.

Thank you Ms. Jacobs for posting! I was hoping you would give your perspective, and as a result I would like to clarify some of my comments for you. In case you are wondering what background I am coming from, I have a Master’s degree and am an IBS sufferer myself. The comment about furthering your academic career came from the fact that anyone who chooses a career in academia must, in that horrible catchy phrase, ‘publish or perish.’ If you are actually entirely independent of a university, I misunderstood.

I am glad to hear that you view IBS as a legitimate physical illness. I think the issue with bringing up psychological study is that it somehow implies or insinuates that a large component of IBS can be controlled mentally. You say that ‘thinking positively is only one aspect of the study’, and yet this quote (and correct me if this is not by you, I found it via Google): ‘This study will investigate whether an intervention based on a psychological model relating to how you think and behave relating to your IBS affects the frequency of your IBS symptoms and quality of life’ does not seem to go beyond that. And since you are investigating a physical condition (albeit from a psychological perspective), whether you have consulted with a gastroenterologist is a relevant question. In no way would I like to impede or discourage IBS research; and in fact I applaud you for responding to our criticism – it would have been much easier to ignore us.

Carly - thanks very much for your comments and for considering my point of view on those issues. I wish you the best of luck with your study.

Rachel - to be honest I was hoping we could leave this discussion there, as Carly has responded honestly and I think we have reached an understanding of each other's point of view. Carly attends a well-respected English university and I don't think it's fair to say she is simply trying to publish for her career - I think her comments and personal experience of her boyfriend etc show that she has a genuine wish to help IBS sufferers.

I don't know whether she has consulted with a gastro doc or not (although her research paper contains many academic references to previous IBS research), but what I do know is that IBS definitely can be affected by stress and emotional states, which is what Carly is investigating - as she says, stress and other aspects affect the "day to day running" of IBS.

While I was upset by some of the wording in the research, I think it's important to keep a sense of perspective about who we are actually angry with. A university researcher is not the enemy - as I say above, the only approach to IBS that really makes me furious is the one where a gastro specialist tells us that it's just in our minds, and THEN offers us no help whatsoever. They're the evil ones!

This thread seems to have ended a while ago, and I just found this blog (love it already!) but I had to jump in and say that I'm living walking proof that IBS is not all in the head, or solely stress related. I have had IBS since birth. My mother specifically remembers that I have had severe constipation since I was a tiny infant, and it's still with me. I manage it with food-combining, triphala, herbal remedies, and occasionally Zelnorm when I can get a prescription for it. But it has never never gone away in all my 38 years. It is a permanent, physical ailment. Stress makes it worse, but it absolutely is not caused by stress.

Hi everyone:-) this is my first time here! I was born with IBS and have tried various medications. If any bowel medication is meant to make us better, then how come we`re still suffering years later? I beg to differ really! I find it unbearable!!!!