Share Facebook
Crohn's Disease Forum » General IBD Discussion » Crohn's Polls » How many of you know your Crohn's Disease Activity Index (CDAI)


View Poll Results: Has your CDAI ever come up in discussion with your Gastroenterologist
Yes, CDAI has been mentioned 10 7.19%
No, I've never heard of it before 129 92.81%
Voters: 139. You may not vote on this poll

 
03-24-2012, 10:51 AM   #1
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
How many of you know your Crohn's Disease Activity Index (CDAI)

The Crohn's Disease Activity Index (CDAI) is a tool that allows for the quantifying of symptoms of Crohn's Disease. I'm curious how many of you have ever had this mentioned to you by your Gastroenterologist.

Thanks

*edit* March 29th: We have a couple wonderful doctors watching this thread who are hoping to hold a clinical trial and are very interested in whether CDAI should be used or not.

Those of you who DO know your CDAI, if you'd be willing to respond stating what country you're in, that would be helpful as well. If you're not comfortable doing so, that's quite ok
__________________
It's good to be back
03-24-2012, 02:43 PM   #2
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
In Australia, where the biologics are government funded, the CDAI is used as one of the criteria that must be met in order to receive approval, so the GI and Crohn's specialist did discuss it with me. It is also then used as a indicator of treatment response for continued use.

From my own children's experiences I personally think it weighs too heavily into the misconceptions that surround IBD. Taking it from the perspective of an initial diagnosis of someone with small bowel Crohn's only, two of the eight criteria refer to diarrhoea and the EIM's mentioned are very limited. Since EIM's are more frequent for those with large bowel involvement anyway, then all these factors combined put those with Ileal Crohn's on the back foot from the outset.

Dusty.
__________________
Mum of 2 kids with Crohn's.
03-24-2012, 03:44 PM   #3
Rebecca85
Senior Member
 
Rebecca85's Avatar
 
Join Date: Apr 2010
Location: Nottingham, UK
I agree. I have heard about the cdai but not from my gastro, and I don't think it would be as relevant given that technically I was in remission when I was admitted to hospital (twice), as my only symptoms were abdo pain (severe, probably on 5 days out the week- scoring 105) and vomiting (not covered), and feeling a bit crummy (not scoring much at all).

In fact, I thought I had a stomach bug until it passed the week long mark, and the pain was so bad I couldn't do anything except cry!
__________________
Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
03-24-2012, 05:44 PM   #4
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
Meant to check second option, but pressed the wrong button :-(
__________________
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
03-24-2012, 05:47 PM   #5
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Changed it for you Helen.

Dusty.
03-24-2012, 08:01 PM   #6
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
Thank you sweetie x
03-24-2012, 08:43 PM   #7
littlefreebird
Senior Member
 
littlefreebird's Avatar
 
Join Date: Jun 2011
Location: belfast, United Kingdom

My Support Groups:
i don't get it.....what is it david? lol
__________________
"We're all in the gutter, but some of us are looking at the stars."

Crohn's since 2000 (aged 10)--> full colon & rectum removal 2011.
03-24-2012, 11:37 PM   #8
Jennifer
Adminstrator
 
Jennifer's Avatar
Is this it? http://www.ibdjohn.com/cdai/

I've never done it or heard of it before.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-25-2012, 12:28 AM   #9
notfullyfathomed
 
Join Date: Jul 2011
Location: atlanta, Georgia
I have heard of it (and calculated my own) because it's still considered the "gold standard" of outcome measures in studies, but I've never had it used in an office visit. I totally agree with Dusty and others though -- doesn't quite get at the symptoms of someone with ileal Crohn's. Personally I can have little pain, diarrhea, and EIMs right up until I have enough inflammation to cause partial obstructions. And then I guess when you start out with a low score it's hard to get down to the score you need to determine treatment response!
__________________
Anna
_____________________
Crohn's since 1998
Resection in 2003 due to a pill cam gone wrong!
6-mp for 13 years, now on Imuran 125 mg, Pred, and Remicade...counting down to just Remi and no more pills!!
03-29-2012, 09:29 PM   #10
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Bump for more responses. We have a couple wonderful doctors watching this thread who are hoping to hold a clinical trial and are very interested in whether CDAI should be used or not.

Those of you who DO know your CDAI, if you'd be willing to respond stating what country you're in, that would be helpful as well. If you're not comfortable doing so, that's quite ok
03-29-2012, 11:15 PM   #11
Entchen
Chief Dandelion Picker
 
Entchen's Avatar
 
Join Date: Mar 2010
Hiya:

I have heard of this, but it has not been discussed with me at a GI appointment. That's 1/2 of Part II, so that's the number of selected.
__________________
Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
03-30-2012, 10:53 AM   #12
Emily
Senior Member
 
Emily's Avatar
 
Join Date: Aug 2010
Location: New York

My Support Groups:
I don't know what this is. Does it have any other possible names? At every doctor's visit I fill out a whole bunch of sheets that give me index values, like the SIBDQ and Harvey Bradshaw, and a few others that I don't remember the names of.
__________________
Age 24
  • Diagnosed with Crohn's at age 7
  • Partial colectomy at age 18
  • Total colectomy with ileostomy at age 23
infliximab & azathioprine
03-30-2012, 02:53 PM   #13
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Emily, this is the CDAI...

http://www.medicareaustralia.gov.au/...I_25.10.07.pdf

@David. The other thing that would need to be considered when using the index is what is normal at the outset. As I stated earlier there is a reliance on diarrhoea as being an indicator of active disease and how that misrepresents Ileal Crohn's. Well on the other side of the coin, for those that have had ileocaecal resections loose stools and anti-diarrhoeals can become a way of life independent of disease activity.

Dusty.
03-30-2012, 02:57 PM   #14
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Here is an online index calculator...

http://www.ibdjohn.com/cdai/

Dusty.
03-30-2012, 03:11 PM   #15
Angrybird
Moderator
 
Angrybird's Avatar
 
Join Date: Nov 2011
Location: Cambridge, United Kingdom

My Support Groups:
Hi, I have never heard of this until today, the only score sheet I have ever done was with the rheumy doc to see if I had enough 'ticks' for Lupus - turned out it was an allergic reaction to Remicade. Do you know if it's better to go through this whilst in full flare or during a quiet time or both to compare?
__________________
Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
03-31-2012, 08:52 AM   #16
izzi'smom
Senior Member
 
izzi'smom's Avatar
 
Join Date: May 2011
Location: New York

My Support Groups:
Hmmm...I just looked it over and can't say that I would find it helpful. Izz's CRP tripled, her disease is severe throughout her large intestine, her pain, while intermittent (5-10 episodes daily) cripples her throughout the day, and she is in the restroom at least 7 times daily, including nocturnal visits. Her doc is preparing us for a colectomy, and I don't believe her score reflects this.
__________________
Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
03-31-2012, 11:43 AM   #17
littlemissh
Senior Member
 
littlemissh's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
I have heard of it and calculated it several times myself but never been asked about it by my GI.
In the humira booklet is the Harvey Bradshaw index instead so have to complete this at each injection.
__________________
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
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:
On TPN since March 2016.
04-01-2012, 04:10 PM   #18
Sailorluna
Forum Monitor
 
Sailorluna's Avatar
 
Join Date: Oct 2010
Location: Coon Rapids, Minnesota

My Support Groups:
It really should include mouth sores and vomiting.
__________________

Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

_____
Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
04-01-2012, 09:17 PM   #19
ryan_jordan
New Member
 
Join Date: May 2009
My GI doc has never talked about CDAI. However, I do a ton of research on Crohn's and have read a lot about CDAI. I've calculated my CDAI using the online calculators - I"m in a full drug free remission using only SCD, so my CDAI is 0.
04-01-2012, 11:23 PM   #20
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
I hadn't heard of CDAI, but used the online calculator on this thread.

Sarah index was 64 at the time on dx in January. Now would be 10.
__________________
Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-30-2012, 10:07 PM   #21
Leebie3
Senior Member
 
Leebie3's Avatar
 
Join Date: Apr 2012
Location: Queensland, Australia
my CDAI is 226 and I'm in Australia. I think dusty is VERY correct though.. it really does rely too much on D.. as one of the options was 'loose stool OR D' I went with the loose ;-D

that was calculated using this cdai http://www.ibdaustralia.org/cdai/

and this one http://www.ibdjohn.com/cdai/ the score is CDAI = 135.7

and 9 on this one http://www.gastrotraining.com/calcul...shaw-index-hbi

I have NO idea what these scores mean so am off to investigate
05-01-2012, 01:53 PM   #22
optimusmog
 
optimusmog's Avatar
 
Join Date: Mar 2012
Location: New York, New York
I thought this was interesting - I mean, it related to a lot of my symptoms and experiences, at least - but more interesting because I've never heard of anything that quantified IBD symptoms in concrete terms like that. I wish there were more criteria since this disease is so complex.
05-01-2012, 03:05 PM   #23
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
I wish there were more criteria since this disease is so complex.
Anyone wanna make the Crohn's Forum Disease Index?
06-07-2012, 10:40 AM   #24
crunch
 
crunch's Avatar
 
Join Date: Aug 2011
Location: Oxon, United Kingdom
do know my CDAI and monitor everyday on a spreadsheet, but not brought up by NHS, I found on the net and wanted a benchmark to track over time, currently around 60 but was prob 180 this time last year...
06-07-2012, 12:02 PM   #25
Aura
Senior Member
 
Aura's Avatar
 
Join Date: Jun 2010
Location: Wellington, New Zealand
Mine was 348 before starting Humira 6 weeks ago - but what I dont like about the index is that it is biased towards crohnnies with D or loose stools not crohnnies with consitipation. I always have to tell the GI that you need to remember this fact when you are making your calculations. It should be based on the Bristol poo chart as shitting pellets or getting compacted is just as bad for crohnnies as the big D.
__________________
Aura
DX 1998
Meds: 2.5mg Plendil ER. Azathioprine 100mg; Inhibace+ 12.5mg; gastrosoothe 60mg; Simvastatin 40mg; Loratadine 20mg; Fluoxetine 40mg; Provera 10mg; Metformin 2.55g; Cal d forte; 1.25mg, Humira; Panadol 4g; Pred 3mg
08-26-2012, 07:58 PM   #26
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
In Australia so see it each time inflix approval needed. Relys too much on diarrhoea which for me is controlled by pain killers i'm on. Also only looks at a 2 week window - I could be shocking beforehand but then improve just when the cdai is done. Not sure how they can improve on it and it at least provides some info. Better then nothing. I estimated my cdai as 438, guessing what crp is,at he moment - not sure how this reflects severity but am presently in hospital with abscesses and inflammation of small bowel - and picked up c diff too. So cdai is being skewed by painkillers and anti d's. Just needs to be used as one tool in the gi's arsenal of not much else. haha
__________________
Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
08-26-2012, 09:15 PM   #27
KatyBuckeye
Senior Member
 
KatyBuckeye's Avatar
 
Join Date: Jul 2012
Location: Michigan
I'm familiar with CDAI only because I've come across it while reading research studies. Neither one of the GIs I've seen has ever mentioned it. I scored a 41.
__________________
Current Treatment: Probioics, Fermented Cod Liver Oil, Butter Oil, Boswellia, Tumeric, Serropeptase, Low Dose Naltrexone
Diet: Paleo diet (after following a customized version of SCD/GAPS for several months)
*Grain-free, Dairy-free, Legume-free, Added cane sugar-free, Preservative- and Additive-free.

**Check out my blog at http://www.thepaleonurse.com/blog

**Like my facebook page at http://www.facebook.com/PaleoNurse
09-27-2012, 12:43 AM   #28
stefan
Senior Member
 
stefan's Avatar
 
Join Date: Sep 2010
Location: Adelaide, South Australia, Australia
my CDAI is 226 and I'm in Australia. I think dusty is VERY correct though.. it really does rely too much on D.. as one of the options was 'loose stool OR D' I went with the loose ;-D

that was calculated using this cdai http://www.ibdaustralia.org/cdai/

and this one http://www.ibdjohn.com/cdai/ the score is CDAI = 135.7

and 9 on this one http://www.gastrotraining.com/calcul...shaw-index-hbi

I have NO idea what these scores mean so am off to investigate
A little late perhaps, but as the author of that first calculator page linked (now at www.ibdsupport.org.au/cdai-calculator) I may be able to shed some light on that

My script is written primarily for the Australian Medicare system, which uses a slightly modified CDAI for eligibility for publicly funded access to biologics. However, it turns out all they've done is actually add a maximum deduction of 10 points if you're overweight, which in my script can be disabled with a checkbox next to the weight section.

With the standard CDAI system, remission is typically accepted to be a score below 150, while a score above 300 is considered a flare, but other scores eg 200, 220 or 250 may be used as cutoffs for eligibility to clinical trials etc

The site www.ibdjohn.com/cdai (as used in the wiki) uses an earlier form of the CDAI which is not [as] widely recognised, and results in significantly lower scores than the typically accepted CDAI. That said, it's fine to use and arguably better if all you're after is a relative score to track your progress, but it's not going to directly correlate with the scores that people may use.

The Harvey Bradshaw index is a different scale that I'm not familiar with, but these two do seem to be the most well known and used of the scores for IBD. Though note as the name may suggest, CDAI is not really intended for use in IBDs other than CD, which can be problematic.

Unfortunately all these scales are far from perfect, and as noted by others the CDAI depends heavily on D when most of us may instead suffer from C which is harder to quantify. Also, the "general well-being" section is highly subjective and is responsible for a significant portion of the final score.
09-27-2012, 02:18 AM   #29
Earnellzwifey
Senior Member
 
Earnellzwifey's Avatar
 
Join Date: Sep 2012
Location: Aberdeen, Mississippi
ACCORDING TO THE LINK POSTED BY DAVID MINE IS 266.528

I have not hear of this and it is probably because I live in Mississippi, U.S.A.

Also I have no clue what my hemocrat is so that may have influenced the score a bit as well.
__________________
Dx 8/31/ 2012 w/ CD
taking:
Remicade,Librax,Lomotil,Prednisone,Probiotic,
Iron,multi-vitamin, B12 injections, magic mouthwash,
Zofran.

32 medical conditions and counting. 22 pills a day with daily blood sugar testing and urinary cathing.

If you live in the loo , because you always gotta poo , then this is the place for you.
11-08-2012, 09:49 PM   #30
ctrl z
Forum Monitor
 
ctrl z's Avatar
 
Join Date: Nov 2011
Location: Pennsylvania

My Support Groups:
Here is an online index calculator...

http://www.ibdjohn.com/cdai/
According to that calculator, I'm at a 7. I recalculated a couple times to account for good days and "bad". It bounced around to 0, 7, and 12. I'd have to say these days since starting LDN I'm typically 0 but I think pre-LDN my CDAI was low to begin with.

I've never had CDAI mentioned to me.

I don't think it's very thorough because it only asks about loose stool and not constipation.

I found two tests that included hematocrit from this year and used those.

Oh yeah... and I'm in the US.

Last edited by ctrl z; 11-08-2012 at 10:08 PM.
Reply

Crohn's Disease Forum » General IBD Discussion » Crohn's Polls » How many of you know your Crohn's Disease Activity Index (CDAI)
Thread Tools


All times are GMT -5. The time now is 04:25 PM.
Copyright 2006-2017 Crohnsforum.com