symptom log (NOT the CDAI)... nanners?

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patientspiders
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Date Joined Jul 2005
Total Posts : 733
   Posted 10/9/2009 7:42 PM (GMT -7)   
I remember a post a few months back (I think) where someone mentioned a really useful symptom log...maybe it was Nanners? I thought I bookmarked the thread, but not so, and the "search" option is failing me...

I find the CDAI (Crohn's Disease Activity Index) to be a relatively useless tool for ME to keep track of things with. I was just wondering if anyone devised a better spreadsheet or found anything more useful on this front. Daily number/time frames of trips to the lu, consistency, general pain, functionality, etc.

Hope your spirits are well and that your bodies are following!
THanks guys.
~Stef
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


stkitt
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Date Joined Apr 2007
Total Posts : 32602
   Posted 10/9/2009 8:05 PM (GMT -7)   

Nanners is on vacation for the next 9 days, perhaps someone else will remember the topic.  :-)

Kitt


medchrt1
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Date Joined Sep 2005
Total Posts : 517
   Posted 10/9/2009 10:20 PM (GMT -7)   
dunno. there is also a way that the drug trials interpret drug effectiveness so that might be an option.

CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 10/10/2009 7:49 PM (GMT -7)   
The drug trials use that asinine CDAI. That's why they always want those w/moderate (ha!) to severe disease activity.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


vitaka
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Date Joined Jun 2006
Total Posts : 887
   Posted 10/10/2009 10:23 PM (GMT -7)   
I have no idea if this is what Gail previously referenced, but one of the main critiques of CDAI is that it doesn't take into consideration factors such as fatigue or endoscopic factors. There is another measure that attempts to capture these more subjective items called the Inflammatory Bowel Disease Questionnaire (IBDQ), although I have never heard a doctor refer to this method. A test of this questionnaire can be found at http://www.ncbi.nlm.nih.gov/pubmed/8299896 .

Probably what Gail was referring to was something more simple, such as keeping a detailed file of your symptoms. When I flare, I tend to note down everything I eat, as well as the number of BMs plus other symptoms (e.g., nausea after breakfast, joint pain in hands) I experience each day plus what meds I may take beyond the ones I take every day.

And yes, the clinical trial I participated in required a minimum CDAI score to qualify (I think it was 290). Usually under about 150 is considered "remission" by their standards.
29f, PhD student, originally diagnosed with Crohn's in 2/06.
10/09: Prometheus test shows results consistent with UC
Rheumatologist appointment 10/12 to address severe joint pain
Currently taking: 2g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/10/2009 11:11 PM (GMT -7)   
Vitak, the link doesn't work for me. Does it work for you?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/11/2009 7:15 AM (GMT -7)   
Hmm, that's weird. It's not clicking through, but it does work when I copy and paste it into a new tab. Sorry about that. I usually double check my hyperlinks but was tired last night. Let's try again and see if it works.

Article title: Quality of life: a valid and reliable measure of therapeutic efficacy in the treatment of inflammatory bowel disease. Canadian Crohn's Relapse Prevention Trial Study Group.

Link: www.ncbi.nlm.nih.gov/pubmed/8299896
29f, PhD student, originally diagnosed with Crohn's in 2/06.
10/09: Prometheus test shows results consistent with UC
Rheumatologist appointment 10/12 to address severe joint pain
Currently taking: 2g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 10/11/2009 9:17 AM (GMT -7)   
hmmm. not sure if the ncbi was the one mentioned or not, but thanks for the link.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 10/11/2009 9:35 AM (GMT -7)   
Ok... I just went on a wild goose chase there. The NCBI created the Inflammatory Bowel Disease Questionnaire (IBDQ), but I cannot find access to it anywhere without paying $150 and pretending I'm a medical student.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/11/2009 10:41 AM (GMT -7)   
I was unable to find the original, but thanks to the many perks of being a student, I did locate a UK version of the IBDQ (citation: W-y Cheung et al. / Journal of Clinical Epidemiology 53 (2000) 297–306). Here are the questions they use:


The following questions ask about your bowel problem and how it affected your life over the last two weeks. Please tick one answer for each of the questions. If you are unsure about how to answer any question, just give the best answer you can. Do not spend too much time answering, as your first thoughts are likely to be the most accurate.

1. On how many days over the last two weeks have you had loose or runny bowel movements?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other
day)

2. On how many days over the last two weeks have you felt tired?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

3. In the last two weeks have you felt frustrated?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

4. In the last two weeks, has your bowel condition prevented you from carrying out your work or other normal activities?
a) No, not at all b) Yes, for one or two days c) Yes, for three to seven days d) Yes, for eight to fourteen days (ie more than every other day)

5. On how many days over the last two weeks have you opened your bowels more than three times a day?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

6. On how many days over the last two weeks have you felt full of energy?
a) none b) on one to two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

7. In the last two weeks have you been worried about being admitted to hospital because of your bowel problem?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

8. In the last two weeks did your bowel condition prevent you from going out socially?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all the time e) does not apply to me

9. On how many days over the last two weeks have your bowels opened accidentally?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

10. On how many days over the last two weeks have you felt generally unwell? a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

11. In the last two weeks have you felt the need to keep close to a toilet?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

12. In the last two weeks, has your bowel condition affected your leisure or sports activities?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time e) does not apply to me

13. On how many days over the last two weeks have you felt pain in your abdomen?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

14. On how many nights over the last two weeks have you been unable to sleep well (days if you are a shift worker)?
a) none b) on one or two nights only c) on three to seven nights d) on eight to fourteen nights (ie more than every other night)

15. In the last two weeks have you felt depressed?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

16. In the last two weeks have you had to avoid attending events where there was no toilet close at hand?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

17. On how many days over the last two weeks, have you had a problem with large amounts of wind?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

18. On how many days over the last two weeks have you felt off your food?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

19. Many patients with bowel problems have worries about their illness. How often during the last two weeks have you felt worried?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

20. On how many days over the last two weeks has your abdomen felt bloated?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

21. In the last two weeks have you felt relaxed?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

22. On how many days over the last two weeks have you noticed blood with your bowel movements?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

23. In the last two weeks have you been embarrassed by your bowel problem?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

24. On how many days over the last two weeks have you wanted to go back to the toilet immediately after you thought you had emptied your bowels?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

25. In the last two weeks have you felt upset?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

26. On how many days over the last two weeks have you had to rush to the toilet?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

27. In the last two weeks have you felt angry as a result of your bowel problem?
a) No, not at al b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

28. In the last two weeks, has your sex life been affected by your bowel problem?
a) No, not at all a) Yes, some of the time b) Yes, most of the time c) Yes, all of the time d) does not apply to me

29. On how many days over the last two weeks have you felt sick?
a) none b) on one or two days only c) on three to seven days d) on eight to fourteen days (ie more than every other day)

30. In the last two weeks have you felt irritable?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

31. In the last two weeks have you felt lack of sympathy from others?
a) No, not at all b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time

32. In the last two weeks have you felt happy? a) No, not at all
b) Yes, some of the time c) Yes, most of the time d) Yes, all of the time
29f, PhD student, originally diagnosed with Crohn's in 2/06.
10/09: Prometheus test shows results consistent with UC
Rheumatologist appointment 10/12 to address severe joint pain
Currently taking: 2g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 10/11/2009 1:34 PM (GMT -7)   
Wow... that is TOTALLY not what I expected. I have never been asked things even remotely like this. It truly is a "quality of life" survey - very interesting.

Thanks for that Vitak.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. After 11 months, failed that too. Cimzia - failed.
Currently on:
Helminthic Therapy, Prednisone


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/11/2009 2:10 PM (GMT -7)   
I LIKE that questionnaire. Thanks so much, Vitak!
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 10/12/2009 3:17 AM (GMT -7)   
This is the questionaire my GI started using last year. It's much better than the CDAI -- which I think is too narrow minded for good results.
 


Crohnie4Life
Regular Member


Date Joined Jan 2010
Total Posts : 69
   Posted 1/16/2010 7:25 PM (GMT -7)   
I know this is an old thread but this Questionnaire is great! It gives a more well-rounded answer to how one is feeling! I will have to ask my GI about it. Thanks!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/17/2010 8:37 AM (GMT -7)   
Well I never saw this post until now. No it was not me who recommended this. I always thought it was Ivy. LOL But I think the idea Vitak provided is great. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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