I want to Become Stronger (IBS) A patient perspective and what patients wantBSG trainees meeting 4th March 2017Vicky GrantPhD research student at the University of Sheffield Trustee of the IBS NetworkIBS Patient@missvagrant

Ive had IBS for more than 30 years and Im writing a thesis about patient experiences. Im going to share an extract with you about my own experiences.

Its around 1987, Im 16, Ive left school with few qualifications because of missing so much of my education and Ive started to work as a library assistant in my local university library *

We had two staffrooms back then. The difference was never clearly articulated, but we all knew where to go. Smoking is allowed in this one Im told as part of my induction. No-one questions this, even though few of us library assistants smoke and those who do dont light up here. We never enter the adjacent room but on occasion the door is left ajar and we inhale an unfamiliar blend of inky newspapers and freshly percolated coffee. Our staffroom sometimes smells like my Aunt Betty and on days like these I can sense her croaky voice and feel the warmth of her hugs. The other library assistants are not impressed. An aerosol air freshener is produced from the cupboard and the pungent scent of manufactured roses soon permeates the air. The cleaners have been in here they say; their distain is obvious.

Once the spraying and tutting has settled we find our seats and start to discuss home improvements, cooking tips and Sallys wedding dress. It is 10.30, two and a half hours since I ate breakfast, and I feel faint with hunger. I rummage in my lunch bag and find a chocolate mousse which I eat faster than a starving orphan and immediately feel less dizzy. After 20 minutes my stomach starts to churn and soon sounds like the kitchen boiler is firing up. I wonder if I actually swallowed a highly fermenting demi-john rather than a small chocolate dessert.

*

I need the toilet but experience tells me that standing up is likely to give me less control so I stay seated and take deep breaths, hoping things will settle. I have little idea whether I have control of my bowels, or not, since the wind that escapes from me is silent. My only indicator is the smell which I sometimes detect myself but more often through the response of others. The bouts of diarrhoea which accompany this are welcome - they are quickly over and are usually followed by a time of feeling well. If I am at work, like today, this becomes less welcome as there is little privacy or opportunity to use the toilet in our University Library.

I experience occasional faecal incontinence but this is rare and not of great severity. I dont like it, it makes me ashamed, but since it is easily hidden and cleaned away it doesnt seem too real. No-one else knows about it so it doesnt count as important. I dont think of it as incontinence, as I assume that this is defined as complete evacuation without warning. Similarly, I dont at this time know, like I know now, that the term incontinence embraces incontinence of flatus. That makes this very real; it is every moment of every day. It is my life.

Ive not been back to see the GP who diagnosed my IBS. Doctors are for ill people and in spite of my ongoing and ever deteriorating problems I still dont realise that I am ill. *

What the Royal College of Physicians think doctors should say to patients with IBS

When I look back now, I wonder why I didnt go back to see my GP more often in those early days. But then when I think about the way medics have been trained to treat people with IBS, I realise the reason I didnt go back was because I knew I wasnt going to be taken seriously. These are some quotes I found in the Medical Masterclass Series, published by the RCPs. This is the RCPs advice on what trainee gastroenterologists should say to people with IBS. I would like to say to you today that I dont think these are good things to say. IBS is not good news and it is a serious disorder. IBS had a profound impact on my life by the time I had my two children I was struggling to cope so much that I had become suicidal.

But I didnt take my own life. Instead I started to read. By the time I was in my 30s I was working as a medical librarian and I started to read all the gastroenterology journals that we subscribed to in my library. And I started to ask for appointments with specialists. I often had to pay privately for these. Eventually I started to write about my experiences and I shared my story with a friend a colo-rectal surgeon. He made me realise that patients do have the power to act- so I applied to undertake an IBS action research PhD. Its an interdisciplinary project between the Medical School and the School of English Literature.

*

Cooperrider, D. L., Whitney, D. K. and Stavros, J. M. (2008) Appreciative inquiry handbook : for leaders of change, 2nd ed., Brunswick: Crown Custom Pub.Ludema, J.D. & Fry, R.E. 2008, 'The practice of appreciative inquiry', In Reason, P. & Bradbury, H. The SAGE handbook of action research, 2nd ed, SAGE Publications Ltd. Chapter 19. pp. 280-296. [Accessed 27 February 2017], doi: 10.4135/9781848607934 Appreciative inquiryA methodology for change

Action research is a methodological approach which focuses on generating change. Im working with a change technique called appreciative inquiryAI is based on these five underpinning philosophical principlesKey to what I am about to say is that AI believes the world is constructed, not fixed and that change comes from people and in particular from poetics - from their stories.

AI also recognises that people are assets. Dave deBronkart said: The most underutilised resource in healthcare is the patient*

Media constructs of IBS

As part of my research Ive been looking at how IBS is portrayed in the media A quick Google images search using the term IBS shows how the media constructs irritable bowel syndrome.Images usually portray women.Almost always headlessOften in their underwear

*

My own research aims to create a counter-narrative for people living with IBS. We are working with various storytelling techniques such as creative writing, collage and art to tell our storiesSo here are my research group Ive named us the PERCIVAL Group after the first letter of our first names. We collaboratively painted our own images as you can see here, no-one painted themselves as headless or in their underwear!

But my group are all women. I dont believe that IBS is a womens disorder though the next stage of my research aims to be more inclusive of men

*

What would you like to change?

As part of our storying workshops we have talked about what we want to change and we are working on a change manifesto at the moment. One of the things that we are asking for is for gastroenterologists to embrace the complexity of IBS.*

Individualise our care, embrace the complexity of IBS and help us to manage our main triggers (stress, hormones and diet)Can Gastroenterologists work with us to:

Complexity really challenges the reductionist methods that I learnt about as part of my EBM training. I dont think IBS is caused by stress which is what I was told was wrong with me. But stress and high FODMAP foods do tend to acts as triggers and make IBS symptoms worse. And IBS is very stressful to live with so we get caught in a cycle thats very difficult to break out of.

Significant life traumas- things like rape, child abuse, bereavement and family rejection are all, in my experience, risk factors for IBS along with GI infections and sudden hormonal changes. I think IBS is often caused when these risk factors collide because that is what happened to me. I dont really think it is helpful to reduce us, to sub-type to put us in boxes. IBS is too complex for that.

As you know, we are starting to see less reductionism and more complexity in medical research and medical practice. The Medical Research Council has established a complex intervention network and I think you more progressive medics are starting to think about how you can work in more complex ways.

*

By Eleni

IBS is a serious disorderThe aetiology of IBS is complex and multiple interventions are most beneficialBelieve your patients and believe in their ability to recover

In summary

I think if I could only say one thing to you today then it would be that what helped me to recover was when my doctors started to believe me. Not only believe what I was saying but also believe in my ability to recover. When that happened I started to believe in myself and I found the strength to recover. It took a long time, more than 20 years in total. Im not cured but I can manage my symptoms so that I dont even have to think about IBS now. And I have met other people who are the same. It is possible.

I dont really need your help any more now because I am middle aged, middle class and privileged. But there are a lot of people out there who are none of those things. I was none of those things when I first got ill. Those people need you. They dont have the privilege of working in a medical school, of being a trustee of the IBS Network or of coming here to speak today. If you believe them, believe what they are saying and treat them seriously and with equality and respect then that is what I would describe as good news. *

This is a short film about my IBS storying projectThis is a short film about my own IBS story (published under a pen name)Further reading and watching

This is a short film about my IBS storying project: https://www.youtube.com/watch?v=K2HIQIEQce4

This is a short film about my own IBS story: https://www.youtube.com/watch?v=v9DNaYwOHeIPublished under a pen name Katie Field *

Ive had IBS for more than 30 years and Im writing a thesis about patient experiences. Im going to share an extract with you about my own experiences.

Its around 1987, Im 16, Ive left school with few qualifications because of missing so much of my education and Ive started to work as a library assistant in my local university library *We had two staffrooms back then. The difference was never clearly articulated, but we all knew where to go. Smoking is allowed in this one Im told as part of my induction. No-one questions this, even though few of us library assistants smoke and those who do dont light up here. We never enter the adjacent room but on occasion the door is left ajar and we inhale an unfamiliar blend of inky newspapers and freshly percolated coffee. Our staffroom sometimes smells like my Aunt Betty and on days like these I can sense her croaky voice and feel the warmth of her hugs. The other library assistants are not impressed. An aerosol air freshener is produced from the cupboard and the pungent scent of manufactured roses soon permeates the air. The cleaners have been in here they say; their distain is obvious.

Once the spraying and tutting has settled we find our seats and start to discuss home improvements, cooking tips and Sallys wedding dress. It is 10.30, two and a half hours since I ate breakfast, and I feel faint with hunger. I rummage in my lunch bag and find a chocolate mousse which I eat faster than a starving orphan and immediately feel less dizzy. After 20 minutes my stomach starts to churn and soon sounds like the kitchen boiler is firing up. I wonder if I actually swallowed a highly fermenting demi-john rather than a small chocolate dessert.

*I need the toilet but experience tells me that standing up is likely to give me less control so I stay seated and take deep breaths, hoping things will settle. I have little idea whether I have control of my bowels, or not, since the wind that escapes from me is silent. My only indicator is the smell which I sometimes detect myself but more often through the response of others. The bouts of diarrhoea which accompany this are welcome - they are quickly over and are usually followed by a time of feeling well. If I am at work, like today, this becomes less welcome as there is little privacy or opportunity to use the toilet in our University Library.

I experience occasional faecal incontinence but this is rare and not of great severity. I dont like it, it makes me ashamed, but since it is easily hidden and cleaned away it doesnt seem too real. No-one else knows about it so it doesnt count as important. I dont think of it as incontinence, as I assume that this is defined as complete evacuation without warning. Similarly, I dont at this time know, like I know now, that the term incontinence embraces incontinence of flatus. That makes this very real; it is every moment of every day. It is my life.

Ive not been back to see the GP who diagnosed my IBS. Doctors are for ill people and in spite of my ongoing and ever deteriorating problems I still dont realise that I am ill. *When I look back now, I wonder why I didnt go back to see my GP more often in those early days. But then when I think about the way medics have been trained to treat people with IBS, I realise the reason I didnt go back was because I knew I wasnt going to be taken seriously. These are some quotes I found in the Medical Masterclass Series, published by the RCPs. This is the RCPs advice on what trainee gastroenterologists should say to people with IBS. I would like to say to you today that I dont think these are good things to say. IBS is not good news and it is a serious disorder. IBS had a profound impact on my life by the time I had my two children I was struggling to cope so much that I had become suicidal.

But I didnt take my own life. Instead I started to read. By the time I was in my 30s I was working as a medical librarian and I started to read all the gastroenterology journals that we subscribed to in my library. And I started to ask for appointments with specialists. I often had to pay privately for these. Eventually I started to write about my experiences and I shared my story with a friend a colo-rectal surgeon. He made me realise that patients do have the power to act- so I applied to undertake an IBS action research PhD. Its an interdisciplinary project between the Medical School and the School of English Literature.

*Action research is a methodological approach which focuses on generating change. Im working with a change technique called appreciative inquiryAI is based on these five underpinning philosophical principlesKey to what I am about to say is that AI believes the world is constructed, not fixed and that change comes from people and in particular from poetics - from their stories.

AI also recognises that people are assets. Dave deBronkart said: The most underutilised resource in healthcare is the patient*As part of my research Ive been looking at how IBS is portrayed in the media A quick Google images search using the term IBS shows how the media constructs irritable bowel syndrome.Images usually portray women.Almost always headlessOften in their underwear

*My own research aims to create a counter-narrative for people living with IBS. We are working with various storytelling techniques such as creative writing, collage and art to tell our storiesSo here are my research group Ive named us the PERCIVAL Group after the first letter of our first names. We collaboratively painted our own images as you can see here, no-one painted themselves as headless or in their underwear!

But my group are all women. I dont believe that IBS is a womens disorder though the next stage of my research aims to be more inclusive of men

*As part of our storying workshops we have talked about what we want to change and we are working on a change manifesto at the moment. One of the things that we are asking for is for gastroenterologists to embrace the complexity of IBS.*Complexity really challenges the reductionist methods that I learnt about as part of my EBM training. I dont think IBS is caused by stress which is what I was told was wrong with me. But stress and high FODMAP foods do tend to acts as triggers and make IBS symptoms worse. And IBS is very stressful to live with so we get caught in a cycle thats very difficult to break out of.

Significant life traumas- things like rape, child abuse, bereavement and family rejection are all, in my experience, risk factors for IBS along with GI infections and sudden hormonal changes. I think IBS is often caused when these risk factors collide because that is what happened to me. I dont really think it is helpful to reduce us, to sub-type to put us in boxes. IBS is too complex for that.

As you know, we are starting to see less reductionism and more complexity in medical research and medical practice. The Medical Research Council has established a complex intervention network and I think you more progressive medics are starting to think about how you can work in more complex ways.

*I think if I could only say one thing to you today then it would be that what helped me to recover was when my doctors started to believe me. Not only believe what I was saying but also believe in my ability to recover. When that happened I started to believe in myself and I found the strength to recover. It took a long time, more than 20 years in total. Im not cured but I can manage my symptoms so that I dont even have to think about IBS now. And I have met other people who are the same. It is possible.

I dont really need your help any more now because I am middle aged, middle class and privileged. But there are a lot of people out there who are none of those things. I was none of those things when I first got ill. Those people need you. They dont have the privilege of working in a medical school, of being a trustee of the IBS Network or of coming here to speak today. If you believe them, believe what they are saying and treat them seriously and with equality and respect then that is what I would describe as good news. *This is a short film about my IBS storying project: https://www.youtube.com/watch?v=K2HIQIEQce4

This is a short film about my own IBS story: https://www.youtube.com/watch?v=v9DNaYwOHeIPublished under a pen name Katie Field *