SUPPLEMENT MATERIALS Appendix A: Cleveland Global Quality of Life (CGQL) [0 being the WORST and 10 being the BEST] Q1. Current Quality of Life: Circle one 6 7 8 9 10 Q2. Current Quality of Health: Circle one 6 7 8 9 10 Q3. Current Energy Level: Circle one 6 7 8 9 10
Appendix B: Irritable Bowel Syndrome Quality of Life (IBS-QOL) [For the past 14 Days, how do you feel: 1 Don t Agree and 5 Strongly Agree] Q1. I feel helpless because of my bowel problem Q2. I am embarrassed by the smell caused by my bowel problems. Q3. I am bothered by how much time I spent on the toilet Q4. I feel vulnerable to other illnesses because of my bowel problem Q5. I feel fat because of my bowel problem Q6. I feel like I m losing control of my life because of my bowel problems Q7. I feel my life is less enjoyable because of my bowel problems Q8 I feel uncomfortable when I talk about my bowel problem Q9. I feel depressed about my bowel problems Q10. I feel isolated from others because of my bowel problems
Q11. I have to watch the amount of food I eat because of my bowel problems. Q12. Because of my bowel problems, sexual activity is difficult for me Q13. I feel angry that I have bowel problem Q14. I feel like I irritable others because of my problems Q15. I worry that my bowel problems will get worse. Q16. I feel irritable because of my bowel problems. Q17. I worry that people think I exaggerate my bowel problem Q18. I feel I get less done because of my bowel problem Q19. I have to avoid stressful situations because of my bowel problems Q20. My bowel problems reduce my sexual desire Q21. My bowel problems limit what I can wear
Q22. I have to avoid strenuous activity because of my bowel problems Q23. I have to watch the kind of food I eat because of my bowel problems. Q24. Because of my bowel problems, I have difficulty being around people I do not know well Q25. I feel sluggish because of my bowel problems. Q26. I feel unclean because of my bowel problems. Q27. Long trips are difficult for me because of my bowel problems. Q28. I feel frustrated that I cannot eat when I want because of my bowel problems. Q29. It is important to be near a toilet because of my bowel problems. Q30. My life revolves around my bowel problems Q31. I worry about losing control of my bowels. Q32. I fear that I won t be able to have a bowel movement Q33. My bowel problems are affecting my closest relationships
Q34. I feel that no one understands my bowel problems.
Appendix C: Depression Anxiety Stress Scales (DASS 21) DAS S 21 Name: Date: Please read each statement and circle a number 0, 1, 2 or 3 which indicates how much the statement applied to you over the past week. There are no right or wrong answers. Do not spend too much time on any statement. The rating scale is as follows: 0 Did not apply to me at all 1 Applied to me to some degree, or some of the time 2 Applied to me to a considerable degree, or a good part of time 3 Applied to me very much, or most of the time 1 I found it hard to wind down 2 I was aware of dryness of my mouth 3 I couldn't seem to experience any positive feeling at all 4 I experienced breathing difficulty (eg; excessively rapid breathing, breathlessness in the absence of physical exertion) 5 I found it difficult to work up the initiative to do things 6 I tended to over-react to situations 7 I experienced trembling (eg, in the hands) 8 I felt that I was using a lot of nervous energy 9 I was worried about situations in which I might panic and make a fool of myself 10 I felt that I had nothing to look forward to 11 I found myself getting agitated 12 I found it difficult to relax 13 I felt down-hearted and blue 14 I was intolerant of anything that kept me from getting on with what I was doing 15 I felt I was close to panic 16 I was unable to become enthusiastic about anything 17 I felt I wasn't worth much as a person 18 I felt that I was rather touchy
19 I was aware of the action of my heart in the absence of physical exertion (eg, sense of heart rate increase, heart missing a beat) 20 I felt scared without any good reason 21 I felt that life was meaningless
Appendix D: Work and Social Adjustment Scale (WSAS) Illness Impact Questionnaire 1. Because of my pouch disorder my ability to work is impaired: 0 6 7 8 I cannot work 2. Because of my pouch disorder, my home management (cleaning, tidying, shopping, cooking, looking after home or children, paying bills) is impaired: 0 6 7 8 I cannot do it 3. Because of my pouch disorder, my social leisure activities (with other people, such as parties, bars, clubs, outings, visits, dating, home entertainment) are impaired: 0 6 7 8 I never do these 4. Because of my pouch disorder, my private leisure activities (done alone, such as reading, gardening, collecting, sewing, walking alone) are impaired: 0 6 7 8 I never do these 5. Because of my pouch disorder, my ability to form and maintain close relationships with others, including those I live with, is impaired: 0 6 7 8 Very severely
Appendix E: Coping with Disease (COPE) People who live with a disease develop a number of ways to cope or deal with it. *Thinking of your experience with your current pouch condition (s), please read each item below and indicate to what extent you use each of these approaches, by circling the appropriate number from 0-3. I don t do I do this I do this a I do this this at all a little bit fair amount a lot 1. I concentrate my efforts on doing something about the situation I m in. 2. I turn to work or other activities to take my mind off things. 3. I try to come up with a strategy about what to do. 4. I say to myself this isn t real. 5. I try to see it in a different light, to make it seem more positive. 6. I say things to let my unpleasant feelings escape. 7. I accept the reality of the fact that it has happened. 8. I use alcohol or other drugs to make myself feel better. 9. I make jokes about it. 10. I give up trying to deal with it. 11. I try to find comfort in my religion or spiritual beliefs. 12. I criticize myself. 13. I get emotional support from others. 14. I try to get advice or help from other people about what to do. 15. I take action to try to make the situation better. 16. I do something to think about it less, such as going to movies, watching TV, reading, daydreaming, sleeping or shopping. 17. I think hard about what steps to take. 18. I refuse to believe that it has happened. 19. I look for something good in what is happening. 20. I express my negative feelings. 21. I learn to live with it. 22. I use alcohol or other drugs to help me get through it. 23. I make fun of the situation. 24. I give up the attempt to cope. 25. I pray or mediate. 26. I blame myself for things that happened. 27. I get comfort and understanding from someone. 28. I get help and advice from other people.