As you begin the SCD, you may notice significant and obvious changes one day and maybe not so much the next. This sort of up and down over a long period of time can make it difficult to determine your progress. I suppose it’s sort of like being a passenger in the back of the bus with dirty windows and trying to guess how fast the bus is going.
In addition to keeping a detailed food and symptoms log you may find the Crohn’s Disease Activity Index (CDAI) a useful tool when employed at regular intervals. Even though it is not as objective as a colonoscopy it is certainly far more practical in practice and gives you a number that you can easily chart.
From Wikipedia’s page on CDAI:
Remission of Crohn’s disease is defined as a CDAI of less than 150. Severe disease was defined as a value of greater than 450.[2] Most major research studies on medications in Crohn’s disease define response as a fall of the CDAI of greater than 70 points.[3][4]
For an easy way to get your CDAI score visit IBDJohn’s CDAI calculator.
For the record, as of November 2, 2008 after almost four years on the SCD, my CDAI score is eighteen.
What a great measuring tool. Thank you for That.
My 18 year old son has been on SCD only since July and his score was a 10!
He has ulcerative colitis. But he was only diagnosed in May, we were lucky to find the diet quickly.
Kay
Kay,
I was glad to find it too. I’ve learned a lot of things even after almost four years on the diet.
How wonderful that you found the diet so quickly!
-Paul
I am looking forward to cooking some of your recipes.
My 17 year old daughter has crohn’s and has been on the SCD for 6 weeks. We seem to be making slow progress – but her doctor has her on 40mg of steroids a day to help with her inflammation (CRP was 95). She is feeling better, but we don’t know if that is the steroids or the SCD.
My question for you is – did you have much bleeding with your crohn’s and if you did how soon after beginning the SCD did the bleeding stop?
(She takes 2 immodium in the morning to help her get through school – that seems to help her most of the day, but when she does go she has quite a bit of bleeding)
Thanks for the measuring calculator, we will use it every week to see how she is improving. Her score was 202.
Thanks for your help,
D.B.
D.B.,
My understanding is that you wouldn’t be able to tell for sure which is helping without stopping one of them. As you know, you can’t just stop the steroids cold turkey and if she’s on a tapering dose, just wait it out and see.
There is one funny thing I remember about my experience with prednisone. Back in 1986 I had to have surgery because I had a bad bleed that the prednisone couldn’t keep under control. Every time I got to a certain level in tapering from it, I would start to bleed again. After the surgery I still had bleeding. The ‘funny’ part is that I was told that the Prednisone made it more difficult for my body to heal. It took a long time, but I was finally able to taper off.
Aside from that dramatic incident back in 1986, I haven’t had a bleeding problem. It hasn’t been an issue for me since then and wasn’t when I started the SCD so I’m afraid I can’t offer you help with that question. If you pose it to the BTVC_SCD group on Yahoo, perhaps someone will have been in the same position and be able to help.
Here’s hoping she continues to progress.
-Paul