Which best describes you? (select one — your answers and report will use it)
J-pouch Survival Mode Assessment
A J-pouch can look successful on paper while the person living with it is struggling to function. This practical tool helps patients communicate the real impact of J-pouch on their ability to function, as well as the impact on their daily lives and relationships, with their healthcare team.
Purpose
This assessment is not intended to diagnose a condition. It is designed to document the day-to-day impact of J-pouch and to help identify areas where further assessment, treatment, accommodations, or support may be needed.
How to use
For each statement, choose the response that best reflects your experience over the past 2–4 weeks.
1. Bowel Function & Urgency
I experience…
Frequent bowel movements that significantly interrupt my day
Urgency that makes me feel I must locate a bathroom immediately
Difficulty delaying a bowel movement once the urge begins
Nighttime bowel movements that interrupt my sleep
Clustering of bowel movements that makes it difficult to leave the bathroom
Accidents or leakage
Fear of not reaching a bathroom in time
Pain, cramping, pressure, or discomfort associated with bowel movements
2. Food & Hydration
I experience…
Fear or anxiety about eating because of what may happen afterward
Avoiding food before leaving home or attending events
Restricting foods because I am trying to control symptoms
Feeling unwell after eating
Difficulty maintaining adequate hydration
Needing to plan fluids, electrolytes, or food around my activities
Concern about dehydration, nutritional deficiencies, or maintaining my weight
3. Energy, Sleep & Physical Capacity
I experience…
Extreme or persistent fatigue
Poor sleep because of bowel activity
Difficulty recovering after ordinary activities
Reduced physical stamina or exercise tolerance
Needing to rest or lie down during the day
Feeling that my energy is unpredictable from day to day
4. Pain, Skin & Local Complications
I experience…
Burning, irritation, or soreness around my anus
Fissures or recurrent tears
Skin breakdown or irritation from frequent wiping/moisture
Pain that makes bowel movements difficult or frightening
Needing creams, barriers, medication, or other measures to protect the area
5. Planning & Loss of Freedom
I experience…
Planning outings around bathroom availability
Mapping routes according to bathrooms
Avoiding places where bathrooms may be inaccessible
Needing to arrive early or leave late because of my bowel function
Carrying supplies, clothing, medication, food, or hydration with me
Changing or cancelling plans because of my health
Avoiding travel or unfamiliar environments because of uncertainty
Finding myself housebound or staying close to home because of my bowel function
6. Work, School & Responsibilities
I experience…
Difficulty concentrating because of fatigue, pain, urgency, or poor sleep
Needing frequent or unpredictable bathroom breaks
Difficulty remaining away from a bathroom for extended periods
Reduced productivity or difficulty maintaining my usual pace
Missing work, school, appointments, or responsibilities
Difficulty maintaining employment or my usual role because of my health
Withholding nutrition and/or hydration to make it through my workday
7. Social & Emotional Impact
I experience…
Anxiety
Embarrassment or fear about my bathroom needs
Avoiding restaurants, social events, gatherings, or activities
Feeling isolated because others do not understand what I experience
Frustration when my symptoms are minimized or dismissed
Anger about how my health has changed my life
Grief over activities, opportunities, or aspects of life I have lost or had to change
Exhausted from constantly organizing my life around my bowel function
Feeling housebound or trapped at home because of anxiety, low mood, or feeling overwhelmed
Thinking less of myself or questioning my worth because I can't do what I used to
Feeling low, hopeless, or anxious because of the toll my health takes
Worrying that I am a burden to the people around me
Summary of Results
Completed October 25, 2026
Overall impact
— / 4
Mean of all rated areas (higher = greater impact)
Assessment coverage
0 / 53
Functional-impact statements answered
| Area of impact | Avg score | Severity |
|---|---|---|
| Bowel Function & Urgency | – | |
| Food & Hydration | – | |
| Energy, Sleep & Physical Capacity | – | |
| Pain, Skin & Local Complications | – | |
| Planning & Loss of Freedom | – | |
| Work, School & Responsibilities | – | |
| Social & Emotional Impact | – |
Highest-impact concerns (rated Frequently or Almost always)
No statements rated Frequently (3) or Almost always (4) yet.
Hidden management tasks
0
of 17 tasks the patient actively manages
Mental energy required
Not rated
Cognitive load of constant management
Invisible limitations
0
of 13 abilities affected despite appearing well
8. My Life Demands
A specialist weighs your symptoms against what your life actually requires of you. Select every demand you are carrying.
Work & Income
Caregiving & Family
Household & Daily Life
Other Commitments
9. The Hidden Work of Managing My J-pouch
How often do you have to actively think about or manage the following?
How much mental energy does managing your J-pouch require?
10. What Other People May Not See
Even when I look well, my J-pouch may affect my ability to:
11. My Current Level of Function
My J-pouch currently feels:
12. What I Need My Healthcare Team to Understand
13. Accommodations & Support
Accommodation and support can matter far beyond work, school, or home. Based on my current limitations, I may benefit from discussing:
Summary of Your Results
Statements answered
0 / 53
Overall impact
Not rated
Frequent or almost always
0
Mental energy required
Not rated
Bring Your Story to Your Appointment
Download and print this PDF before your next visit, and bring it with you. It gives your physician the full picture of how your J-pouch is affecting your daily life, the symptoms you are managing, and the support that would help most, so nothing gets lost in a short appointment.
This assessment is for informational and communication purposes only and does not replace medical advice. Always share your results with a qualified healthcare professional.