Thank You! He’s doing well. Aside from the 15 min potty trips, you’d never know anything was up. Averaging 2 times a day, still some blood, but prob 80/20 brown to blood. Hasn’t complained about his leg. Checkup and Remicade at CHOP on Weds. He really is doing well, wants to wrestle me constantly. He’s also got a taste for carnation shakes, so that I am very thankful for.It's been several days, thought I would check in. How is it going?
I'm a moderator - I'm honestly not sure if we're allowed to post pictures of bloody stool. I'll try and find out. If not, you can post pictures in a private message to any other member - perhaps @crohnsinct can help you assess since her daughter tends to bleed.I would assume we’re not allowed to post pictures, if we can I will.
This made me laugh! I think that is the best response I have heard a child have to rectal therapy. You have an amazingly resilient kiddo!Yes we are using proctofoam and honestly it’s one of the highlights of all of this. We uncontrollably laugh every time we do it! Only once a night.
Your son's colon can certainly heal and get "pink and pretty" as @my little penguin calls it . My daughter was not diagnosed with severe Crohn's - she was diagnosed with mild Crohn's (and at some point along the way they started calling it "mild to moderate," whatever that means), but she did have small ulcers throughout her colon and inflammation in her TI. After 8 months of Remicade and MTX, her next scope showed that her colon looked "beautiful" (that is really what the doc said!) and all biopsies were perfectly normal in her colon. Her TI had very mild inflammation seen on biopsies but visually looked pretty good.Ya, I guess I was asking is it possible to have a milder form of IBD where you wouldnt need biologics. Or is it more, once the cat is out of the bag, you cant really return to how it was handled before the big flare happens. I guess the goal is to stay on top of it to avoid further damage.
Didn't O once have a calprotectin that was 16 or something like that? I vaguely remember her sister accusing her of sending in someone else's poop !One of my daughters says calpro under 200 is a myth.
So glad your son is doing better!! That is wonderful news - that's a very normal calprotectin!!On 2/13 his calpro was 1,120, latest test from 4/10 he was at 62
Goal is to make it to Weds 4/21 for his next Remicade infusion and checkup.
Just want to say, you were right on the money with this. I am considering asking his doc's if we can try to stop the methotrexate at the end of July, which would be 6 months. Then see how he does with just the monthly Remicade. Any thoughts on this? We are averaging about 1 poo or less a day, haven not seen blood in months. He tends to lose his appetite a bit for a day or say after the methotrexate, and would really like to see if it is possible to stop it before school starts. In the pre pandemic world, I may not be as worried. We are due for a checkup and Remicade next Weds.So it’s a good thing
You saw a BIG improvement
And your seeing the med levels go down
Each time more inflammation is attacked
Not all the inflammation but more
So in 8-12 weeks you should be in an entirely different place
I wouldn’t expect it to be settle by next month though
Plan for much later (may June time frame )
And be surprised if it happens sooner
That is quick for Gi land by the way