Urgency Or Need to Go to the Bathroom Right Away

SupplementaryInformation

Table 1. Summary of questionnaire questions and response options
Questions / Response options
GI symptom history and impact on HRQOL
Thinking about the stomach problems (abdominal pain and discomfort associated with loose stools or diarrhea) that you experience, how severe would you say that your stomach problems are? / Severity of symptoms ranked on a scale of 1-7:
Mild (1 or 2); severe (6 or 7)
1 – very mild
2
3
4 – moderate
5
6
7 – very severe
When you have these stomach problems(abdominal pain and discomfort associated with loose stools or diarrhea), how often do you also experience the following symptoms?

Urgency or need to go to the bathroom right away
Gas
Bloating/fullness or tightness of the stomach
Fatigue/tiredness
Heartburn/gastric reflux
Nausea

/ Frequency of each symptom:
Always
Most of the time
Often
Sometimes
Never/rarely
Thinking of each of these stomach problems you experience, how mild or severe would you say each of these physical symptoms are?

Urgency or need to go to the bathroom right away
Diarrhea
Loose, mushy, or watery stools
Discomfort or pain in your abdomen
Gas
Fatigue/tiredness
Bloating/fullness or tightness of the stomach
Heartburn/gastric reflux
Nausea
Hard or lumpy stools/constipation

/ Severity of each symptom on a scale of 1-7:
Mild (1 or 2); severe (6 or 7)
1 – very mild
2
3
4 – moderate
5
6
7 – very severe
Thinking about the stomach problems (abdominal pain and discomfort associated with loose stools or diarrhea) that you experience, how long have you been experiencing this? / Less than 6 months
More than 6 months, but less than 1 year
More than 1 year, but less than 3 years
More than 3 years, but less than 5 years
More than 5 years, but less than 10 years
More than 10 years, but less than 15 years
15 years or more
(If undiagnosed) Have you spoken to a doctor about your stomach problems? / Yes
No
(If Yes) What doctors or healthcare professionals have you spoken to about your stomach problems? Select all that apply. / Gastroenterologist
Family practice
Internist
OB/GYN
Mental health professional (psychologist/psychiatrist)
Nutritionist or dietician
Other
I don't know/I don't remember
Which, if any, of the following have you ever done in order to manage your IBS/stomach problems? / Had to cancel or change plans last minute
Avoided eating completely for several/many hours before or during certain important events (a meeting, a child’s soccer game, a night out with friends/partner, etc.)
Pre-medicated with an antidiarrheal like Imodium to prevent a flare-up of my stomach problems
Missed or skipped an event that would be somewhere with poor access to a bathroom (outdoor event, hiking, etc)
Missed work
Was significantly late to work/meeting
Avoided dinner/social occasion with friends because of anxiety over needing to use the bathroom
Avoided taking a trip/long journeys because I did not have access to the bathroom
Sought a more flexible work schedule to accommodate bathroom schedule
Other
None of the above
Management of GI symptoms
How have you been treating or managing your IBS/stomach problems over the past 3 months? Please select all that apply. / Adjustments to diet
Antidiarrheal agents such as Imodium or Lomotil
Probiotics
Over the counter treatments for upset stomach such as Pepto Bismol or Tums
Lifestyle adjustments to reduce stress
Bulking agents or fiber supplements such as Metamucil, Citrucel, or bran
Incorporated more exercise into routine
Antidepressants
Antispasmodics such as Bentyl, Levsin, or Librax
Psychological therapies to reduce stress
Antibiotics
Lotronex
How satisfied are you with the effectiveness of each of these treatments in addressing your symptoms?a

Adjustments to diet
Antidiarrheal agents such as Imodium or Lomotil
Probiotics
Over the counter treatments for upset stomach such as Pepto Bismol or Tums
Lifestyle adjustments to reduce stress
Bulking agents or fiber supplements such as Metamucil, Citrucel, or bran
Incorporated more exercise into routine
Antidepressants
Antispasmodics such as Bentyl, Levsin, or Librax
Psychological therapies to reduce stress
Antibiotics

/ Satisfaction of each treatment on a scale of 1-7:
Satisfied (6 or 7)
1 – extremely unsatisfied
2
3
4
5
6
7 – extremely satisfied
Which, if any, of the following things do you do in your day-to-day life in order to manage your IBS/stomach problems? Select all that apply. / Avoid foods that I think will upset my stomach
Always know where bathrooms are located
Keep over-the-counter medications or supplements handy at all times
Avoid stressful situations
Always stay near a bathroom
Carry wipes when you’re on the go
Avoid drinking alcohol
Put off or avoid intimacy with a partner
Wear different clothes such as oversized, looser, or dark-colored items
Carry an extra set of clothes
Avoid exercise
Other
None of the above
(Among diagnosed IBS-D patients) what type of doctor diagnosed you with IBS? Please choose one. / Gastroenterologist; general practice; family practice; internist; OB/GYN; nutritionist or dietician; mental health professional (psychologist/psychiatrist); other
What type of doctor is treating your IBS/stomach problems symptoms today? Please choose one. / Gastroenterologist; general practice; family practice; internist; OB/GYN; nutritionist or dietician; mental health professional (psychologist/psychiatrist); other; no one is treating my IBS or stomach problems today
Participants’ perceptions about etiology of IBS symptoms
To the best of your knowledge, which of the following do you believe are causing your IBS/stomach problems?

Aging
An imbalance of bacteria within my stomach or gut
Anxiety
Eating at certain times of the day
Effect of something in my environment that I’m being exposed to
Family genetics
Hormonal changes
Not getting enough exercise/being out of shape
Particular foods that my body is sensitive to
Poor diet
Stress
This is just the way my body works

/ Belief that each is a cause on scale of 1 to 7:
Definitely (6 or 7)
1
2
3
4
5
6
7
Have you ever considered that you might have any of the following (among undiagnosed)? / Lactose intolerance; IBS; IBS-D; celiac disease
Response options: yes, but I’ve never asked my doctor about it; yes, but I spoke to my doctor and he said I did not have it; no, I never considered that I might have this
Has your doctor ever told you that any of the following may be contributing to your IBS/stomach problems? Please select all that your doctor has discussed with you. / Stress or anxiety
Particular foods that my body is sensitive to
An imbalance of bacteria within my stomach or gut
Family genetics
Poor diet
This is just the way my body works
Not getting enough exercise/being out of shape
Hormonal changes
Eating at certain times of the day
Aging
Effect of something in my environment that I’m being exposed to
Other
None of these
aLotronex was not included because of insufficient sample sizes.
GI, gastrointestinal; HRQOL, health-related quality of life; IBS, irritable bowel syndrome; IBS-D, diarrhea-predominant irritable bowel syndrome; OB/GYN, obstetrician/gynecologist.
Imodiumis a registered trademark of Johnson & Johnson New Brunswick, NJ, USA
Lomotil is a registered trademark of G.D. SEARLE LLC, New York, NY, USA.
Pepto-Bismol is a trademark of Proctor & Gamble Co., Cincinnati, OH, USA.
Tums is a registered trademark of SmithKline Beecham Corporation, Wilmington, DE, USA.
Citrucel is a registered trademark of Aventisub II Inc, Greenville, DE, USA.
Metamucilis a registered trademark of Proctor & Gamble Co.; Cincinnati, OH, USA.
Bentylis a registered trademark ofAptalis PharmaUS, Inc.,Parsippany, NJ, USA.
Levsinis a registered trademark of Alaven Pharmaceutical LLC, Marietta, GA, USA.
Libraxis a registered trademark of Valeant Pharmaceuticals North America LLC, Bridgewater, NJ, USA.

Table 2. Impact of gastrointestinal symptoms on quality of life
Positive response to “Which, if any, of the following things have you ever done in order to manage your [IBS/stomach problems]?” / Individuals, N (%)
Diagnosed with IBS-D
(n=1094) / Undiagnosed
(n=830)
Cancel or change plans last minute / 569 (52)a / 324 (39)
Avoided eating completely for several/many hours before or during certain important events (eg meeting, child’s soccer game, night out with friends/partner) / 569 (52)a / 324 (39)
Premedicated with antidiarrheal (eg Imodium) to prevent flare-up of stomach symptoms / 547 (50)a / 274 (33)
Missed or skipped an event that would be somewhere with poor access to a bathroom (eg outdoor event, hiking) / 459 (42)a / 224 (27)
Missed work / 416 (38)a / 232 (28)
Was significantly late to work/meeting / 372 (34)a / 141 (17)
Avoided dinner/social occasion with friends because of anxiety over needing to use the bathroom / 372 (34)a / 191 (23)
Avoided taking a trip/long journeys because I did not have access to the bathroom / 361 (33)a / 183 (22)
Sought a more flexible work schedule to accommodate bathroom schedule / 131 (12)a / 42 (5)
Other / 22 (2) / 8 (1)
None of the above / 120 (11) / 174 (21)b
aP<0.05 vs. undiagnosed group; bP<0.05 vs. diagnosed group.
IBS, irritable bowel syndrome; IBS-D, diarrhea-predominant irritable bowel syndrome.

Supporting Figure 1. Study participants

Supplementary Figure 2. Awareness of IBS as cause of symptoms in undiagnosed individuals with IBS. This figureshows the Percentage of individuals responding to the question “Have you ever considered that you might have any of the following?” The corresponding list included IBS and IBS-D as options. IBS, irritable bowel syndrome; IBS-D, diarrhea-predominant irritable bowel syndrome