Crohn's Disease Activity Index (CDAI) and other ways to measure your disease severity

How many people here use the Cronh's Disease Activity Index with a doctor or even personally to determine the severity of their disease?

Basically this is a list of questions that assigns different point values to your answers (chosen from a list). A higher score means more severe disease currently.

Personally I have not had a doctor or GI use one on me ever, and I think they really do not make total sense. This is because they ask limited questions, do not consider what is normal for a person (as in has a person always had the same symptoms, but now those are gone and different ones are showing up) and the test assigns a wide range of points for different symptoms. A person can have been underweight with many symptoms but then gain weight and lose most of the symptoms, but gain a new one (like a fistula) and possibly have a worse score than before. Now I am not saying a fistula is not bad or means your disease is getting better, but instead am trying to convey that your score can be misleading, especially when compared with others (instead of what is normal for you). I like to believe a doctor bases their diagnosis for next steps in my treatment based off what has changed since we last spoke, instead of what a test score says.

Does anyone use them (and hopefully have nicer things to say about them that I do )? If so do you think they are effective?

Never used them Mike.

I would like to know where you could find these questions because I would like to see how true they are.LOL

I hope someone on here has tried I personally would like a second opinion.

I second everything you just wrote Mike.

I've never used one either. Not to mention it doesnt account for ostomies.

I actually made a chart for myself to track the severity of my symptoms and to help me predict flares... it worked pretty good. Since I am a mega nerd, I tracked the data in an excel file and graphed it. The things that I included were the number of bowel movements, fatigue, and pain.

I was also tracking prednisone dosage at that time to try to taper off of it. I saw a direct correlation that as my prednisone went down, symptoms went up.

Don't know how to do attachments or I would. My doctors loved it.

btcrv if you send me the file I can attach it to your reply. Or click edit and there should be a paperclip, which would be attachments.

Email is christopherfirth@email.com or pm me