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Crohn's Disease Forum » General IBD Discussion » The Crohn's Forum Disease Index (CFDI)


05-01-2012, 02:52 PM   #1
David
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The Crohn's Forum Disease Index (CFDI)

In this thread we've come to the conclusion that not many people know of the Crohn's Disease Activity Index (CDAI) and of those that do, many don't think very highly of it.

I thought it might be an interesting (fun?) activity to discuss how we would create an activity index. What symptoms and variables would we include? How would be weight them? The idea behind the index would be to determine how active/severe your disease is and be able to determine if it is getting better or worse.

If this is something the community really gets into, I could see us creating a software program out of it that could be quite empowering.

Let's do Crohn's Disease for now.

As we go along, I'll edit suggestions into this post. Let's just discuss variables for now to keep it simple. We can discuss durations/weighting later once we hash out the variables.

Current variables:

- Pain on a scale of 0-10 over the last [?] days. Answer x [?weight]
- Diarrhea or loose stool movements in the last 24 hours. Answer x [?weight]
- Constipation for [?] days. Answer x [?weight]
- Vitamin B12 level less than 250. 0 for no. 1 for yes. Answer x [?weight]
- Active fistula. 0 for no. 1 for yes. Answer x [?weight]
- Active abscess. 0 for no. 1 for yes. Answer x [?weight]
- Stricture(s) present. 0 for no. 1 for yes. Answer x [?weight]
- Active symptoms of arthritis. 0 for no. 1 for yes. Answer x [?weight]
- Active mouth ulcers. 0 for no. 1 for yes. Answer x [?weight]
- Active erythema nodosum. 0 for no. 1 for yes. Answer x [?weight]
- Active extra intestinal manifestations not listed. 0 for no. 1 for yes. Answer x [?weight]
- Jaundiced. 0 for no. 1 for yes. Answer x [?weight]
- Energy Level. 0 = normal energy levels. 1 = some fatigue. 2 = very fatigued. Answer x [?weight]
- Feeling nauseous over last [x] Duration. 0 = none. 1 = some nausea. 2 = very nauseous. Answer x [?weight]
- Vomiting in last 72 hours. 0 = none. 1 = 1-3 times. 2 = 4+ times. Answer x [?weight]
- Elevated WBC. 0 = no. 1 = yes. Answer x [?weight]
- Elevated CRP. 0 = no. 1 = yes. Answer x [?weight]
- Elevated ESR. 0 = no. 1 = yes. Answer x [?weight]
- Blood in stool 0 = no. 1 = yes. Answer x [?weight]
- Mucus in stool 0 = no. 1 = yes. Answer x [?weight]
- Undigested food in stool. 0 = no. 1 = yes. Answer x [?weight]
- Bloating - 0 = no. 1 = yes. Answer x [?weight]
- Urgency - 0 = no. 1 = yes. Answer x [?weight]
- Appetite over last 72 hours. 0 = normal. 1 = decreased. Answer x [?weight]
- Low Hemoglobin - [?]
- Weight loss/gain - [?]
- Acid refulx/heartburn - [?]
- SIBO - [?]

What else?
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05-01-2012, 02:57 PM   #2
Josephine
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Colour of your skin? for example Jaundice round the eyes.
Lack of energy ?
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05-01-2012, 03:00 PM   #3
David
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Added both Josephine. Thanks!
05-01-2012, 03:01 PM   #4
Josephine
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Please called me Jo, only never get called long version if I am in trouble. lol
05-01-2012, 03:50 PM   #5
monkey
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Perhaps a little abstract... Do we need to throw in a HADS type question? We all know of the biopsychosocial model right?!
Or some kind of calculation relating to length of time of disease against mistrust of medics, theres definately a relationship...
05-01-2012, 03:53 PM   #6
DustyKat
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Nausea/Vomiting. Maybe separate the two???
Appetite
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05-01-2012, 04:34 PM   #7
Rebecca85
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I am not sure how fistula in the past reflects current disease activity? Shouldn't we just look at current/active symptoms?

What about other blood results not just b12- like anaemia, white blood count, ESR, CRP? Maybe just something like 'bloods within normal range/one or two parameters abnormal/several parameters abnormal'?

What about contents of stool- blood, mucous, undigested food?

Under diarrhoea/loose stool can we also add urgent? As I can have urgency with a normal bowel movement!

But this is a fantastic idea! Finally something to accurately represent how us small bowel Crohnies feel!
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05-01-2012, 04:49 PM   #8
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Maybe we could build the bristol stool chart into the diarrhea/loose stool question, e.g. "Number of bowel movements at 6 or 7 on the Bristol Stool Chart"? or just a total of all numbers for all BMs in the past 24 hours.
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05-01-2012, 04:52 PM   #9
David
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Nausea/Vomiting. Maybe separate the two???
Appetite
Added, thanks!
05-01-2012, 04:53 PM   #10
David
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I am not sure how fistula in the past reflects current disease activity? Shouldn't we just look at current/active symptoms?
Good point. Removed!
What about other blood results not just b12- like anaemia, white blood count, ESR, CRP? Maybe just something like 'bloods within normal range/one or two parameters abnormal/several parameters abnormal'?

What about contents of stool- blood, mucous, undigested food?

Under diarrhoea/loose stool can we also add urgent? As I can have urgency with a normal bowel movement!
Added them all I used Hemoglobin to reflect anemia. Thanks!
05-01-2012, 05:08 PM   #11
David
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I just had a thought. Is it possible to have this index be about getting better? Can we utilize words that are positive? Is my head in the clouds or would it be neat to be able to enter data in a manner that helps us in our healing process? Now, the system wouldn't lie in that if it appears you're doing worse you'll know that, but how about a disease index that follows our cardinal rule here? "This is a support forum first and foremost?"

Instead of the "Crohn's Forum Disease Index" how about:

"Crohn's Forum Healing Index"
05-01-2012, 05:15 PM   #12
David
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Maybe we could build the bristol stool chart into the diarrhea/loose stool question, e.g. "Number of bowel movements at 6 or 7 on the Bristol Stool Chart"? or just a total of all numbers for all BMs in the past 24 hours.
Can you elaborate on your thoughts here please?
05-01-2012, 10:02 PM   #13
Leebie3
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I can't think of anything that's not already there but just wanted to say AWESOME idea! :-)
05-01-2012, 10:03 PM   #14
Leebie3
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what about reflux/heartburn?
05-01-2012, 10:23 PM   #15
David
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what about reflux/heartburn?
Added, thank you
05-01-2012, 11:15 PM   #16
Judith
 
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Brilliant Idea!!
05-02-2012, 12:57 AM   #17
archie
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Great idea what about current meds / surgery?
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05-02-2012, 07:41 AM   #18
littlemissh
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Brilliant idea.
Not sure jaundice should be on as it isn't really a feature of active crohns and may make people think its ok to be jaundiced whereas they should seek urgent medical help. Granted, if you can have crohns related liver disease it can very occasionslly cause jaundice but if you start adding in all the symptoms/signs of all EIMs then the list would be pages long.
Just a thought.



Edited multiple times due to brain not working today. Apologies if still incoherent!
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Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
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06-07-2012, 10:44 AM   #19
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how about smell... poor topic I know, but I noticed in flare BM's or wind just didn't smell right... Might just be that I have a very strong sense of smell...?
06-07-2012, 12:14 PM   #20
Aura
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With the constipation section could you also had straining to poo, number 1 on the bristol poo chart, tearing anus.

Since you have mentioned CRP and ESR what about the fecal cal-protectin test score as well?

With pain, while you have identified it's intensity just wondering if we needed to identify locations, cramping, waves, burning?

In terms of names while I do appreciate the need for postive thinking - these don't feel like healing to me, but the are my symptoms so maybe Crohn's Forum Symptom Index (CFSI) - I know over time I could track my score and see potential improvements, but I don't want to get down if I am not healing and improving my score. Crohn's is fickle and the emotional coping side of this disease can be a rollercoaster. Just a thought.
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06-07-2012, 12:29 PM   #21
Astra
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Active extra intestinal manifestations not listed

I agree If we were to add all these in the list it would be very long, but...
usually of my first indications of a flare up is eye inflammation, (styes usually)
maybe just me tho?

edit - David you've spelled reflux wrong xx
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06-07-2012, 11:00 PM   #22
tots
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Sorry if this is duplicated-

How fast from the time you eat until you are in pain and running for the bathroom.

Are your safe in remission foods shrinking again? Your diet in getting limited again.

(I say that but to be honest I have no idea what to expect or what I should hope
for in my diet when my Remicade "kicks in")

Lauren
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
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06-08-2012, 01:32 AM   #23
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I would like to know what diet are people on. For example: Gluten Free, Vegan, FODMAP etc.
Also I would like to know if a person is taking any supplements.
Thanks for the great idea
11-15-2012, 07:14 PM   #24
gemarie
 
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I dont know what that thing is called where as soon as you smell food, sometimes even just see it, your stomach/bowels wretch/twist/turn/burn/throb and you feel you need to either vomit or run for the toilet... that is the one symptom that i have when i KNOW its getting bad.. all the others are there in varying degrees, that is the one that is only present on a flare that I dont get mildly anyway in better health.
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