What is it about the name Irritable Bowel Syndrome that we find so difficult? My talk from the IBS Network's Anniversary Conference, 16 April 2016.

1. What's in a Name? Does the diagnosis matter?
Vicky Grant
Founder of the Knowing as Healing project
Living well with Irritable Bowel Syndrome
@missvagrant
hil@sheffield.ac.uk
IBS Network Anniversary Conference 16
th
April 2016
What’s in a name?

2. Irritable Bowel Syndrome

3. What’s in a name?
“I hate the word "syndrome" in #IBS.
It marginalizes patients as not having
a disease. #changethenameofIBS”
Mark Pimentel
Gastroenterologist
“IMO "syndrome" is apt for
#IBS: means a condition w. a
set of consistently associated
symptoms. "Irritable" not as
apt.”
Olafur Palsson
Gastroenterologist

4. Image by Joy Spencer. Included with permission.

5. “What the hell is going on in there?”
Joy Spencer
IBS patient and artist

6. “Machete Shreds the Gut Syndrome”
Sophie Lee
IBS patient and author

7. “Angry Bowel Syndrome”
Anne
IBS patient and
Knowing as Healing project participant

8. “Dear God Just Shoot Me Now Bowel”
Sophie Lee
IBS patient and author

9. Irritable Body Syndrome
Vicky Grant
IBS patient and action researcher

10. Irritable Bowel Syndrome
“It marginalizes
patients”
Mark Pimentel
“Any name with the word
irritable and syndrome in
it will never be taken
seriously by anyone”
Joy Spencer

11. What some students in my university think
about irritable bowel syndrome
New worst email from the uni -
'Do you have irritable bowel
syndrome?'. Who the hell even let
that be sent out?!”
“Who even gives these morons
access to a computer”
“Do I have irritable bowel
syndrome? Hahahahaha”

12. What the Royal College of Physicians think
doctors should say to patients with IBS
“I have examined you
thoroughly and cannot
find anything wrong …”
“I am pleased to say
that I do not think
there is anything
terrible going on here”
“This is good news …”
“You do not have a
serious disorder
such as cancer”

13. What do IBS patients say
they want more than
reassurance or even
possibly more than a cure?

14. “I’m not asking for a solution,
I’m not asking for a cure. I’m
asking you to believe me”
Sophie Lee
IBS patient and author

15. “IBS is a terrible
condition”

16. Emily
IBS patient and
Knowing as Healing project participant

17. Homonym

18. Emily
IBS patient and
Knowing as Healing project participant

19. Image created by Joy
Spencer to support
the IBS Network’s
change campaign
#notjustIBS

20. Provocation one: A change of name will not improve
the health of people living with irritable bowel
syndrome. A change in attitudes will.
Question one: How can we change attitudes surrounding IBS?

21. Provocation two: The Royal College of Physicians does
not understand patients with irritable bowel syndrome.
Question two: How can we encourage the Royal College of Physicians to
train junior doctors to treat IBS as a serious condition?

22. Provocation three: Modern medicine is preoccupied
with curing diseases and is not inclusive of people living
with chronic syndromes.
Question three: How can practitioners and patients collaborate to create
a healthcare system that is more inclusive of people living with IBS?

23. Today’s talk
Vicky Grant
@missvagrant
Knowing as Healing: living well with irritable bowel syndrome.
Recruiting now. Email: hil@shef.ac.uk to apply for a place.

24. Reference list
Collier, J. D. ed. (2004) Medical masterclass: Gastroenterology and hepatology, London: Royal College of Physicians of London.
Keshav, S. ed. (2008) Medical masterclass: Gastroenterology and hepatology, 2nd ed., London: Royal College of Physicians.
Knight, J. (2013) New worst email from the uni - 'Do you have irritable bowel syndrome?'. Who the hell even let that be sent out?! [Twitter]. 28
January [online], available: https://twitter.com/Mr_Jack_Knight [accessed 29 January 2013].
Knight, J. (2013) Who even gives these morons access to a computer, let alone the uni-wide email system? [Twitter]. 28 January [online],
available: https://twitter.com/stuhill90 [accessed 29 January 2013].
Lee, S. (2011a) Sophie's story : my 20-year battle with irritable bowel syndrome, Sherman Oaks, CA: Health Point.
Lee, S. (2011b) 'Why patients with irritable bowel syndrome are angry at their doctors', KevinMD.com [online], 10 Nov, available:
www.kevinmd.com/blog/2011/11/patients-irritable-bowel-syndrome-angry-doctors [accessed 16 Nov 2014].
Lee, S. (2015) '10 things you'll only know if you've got IBS', The Metro [online], 2 October, available: http://metro.co.uk/2015/10/02/10-
things-youll-only-know-if-youve-got-ibs-5415251/ [accessed 17 October 2015].
Palsson, O. (2015) “@MarkPimentelMD IMO "syndrome" is apt for #IBS: means a condition w. a set of consistently associated symptoms.
"Irritable" not as apt.” [Twitter] 11 November [online], available: @DrPalssonUNC [accessed 31/03/2016].
Pimentel, M. (2015) “I hate the word "syndrome" in #IBS. It marginalizes patients as not having a disease. #changethenameofIBS” [Twitter] 20
October [online], available: https://twitter.com/MarkPimentelMD [accessed 31/03/2016].
Spencer, J. (2014) Chronically me: flushing out my life and time with IBS. A memoir in comics.