Diarrhea when not flaring?

[buchanaj]

Do your kids have diarrhea even when they are not flaring? DD has been on Prednisone for about 3 weeks and Pentasa for about 2. Her stool has been either pudding consistency or normal for the last couple weeks. However, over the last couple days she has had the loose watery stool again. Not sure if it has to do with her starting the iron supplements or something else. I'm not sure what to expect of her stool when she is not flaring. We are doing blood work in a few weeks so we may have a better picture of where she stands but in the meantime I'm not sure if her stool is a bad sign.

Jennifer

 

[my little penguin]

Have you called the Gi to update them on the watery d?
Has she started weaning yet ?
Technically until she is in remission - it's just one big flare ...
remission takes months to years to get to .
If anything is wonky or off I call the Gi and standard protocol
Is bloodwork and stool tests as an automatic
Good luck

 

[buchanaj]

She is just starting to wean off the Prednisone today. She has been on 40 mg a day for about 3 weeks. We will take her down 5 mg a week until she's off of it.

Guess I'm still a bit confused as to how this all works. I see some people post things that imply they only flare for short periods of time (a couple days/week). I feel like DD has been flaring since around July! Not sure what to expect in terms of the medication. Doctor hasn't been real specific . . . probably deliberately as each case is different. I definitely see improvement. Her stool is typically more formed than it once was and the color is definitely darker. Of course, when I mentioned that to the doctor, he didn't seem impressed and stated that he gives more merit to the blood results.

This disease is freaking confusing. I need some sort of green light to go off when things are all settled!!

 

[Maya142]

Flaring really depends. It could be a few days, a few weeks, a few months or a few years!

remission would mean no clinical symptoms and also clean scopes - complete mucosal healing, no inflammation on the biopsies.

When your kiddo is first diagnosed, she is in a flare really until you get it under control. That might be with Pentasa or it may be with Remicade. Depends on the kid.

If she still has symptoms - diarrhea, belly pain - she is still flaring. She also may not have symptoms, but her bloodwork (or stool tests - Fecal Calprotectin) may show active inflammation, which would also indicate she's flaring. Some kids are completely asymptomatic and seem fine, but their insides look awful - they would also be considered flaring.

The loose watery stool could be because of the iron but it could also be the diarrhea coming back as you are weaning prednisone. As you wean it, you'll figure out if Pentasa is strong enough for her (for most kiddos it isn't) and whether it will keep things under control.

Unfortunately, it is trial and error with most meds. You just have to be patient and see what works. I would let the doctor know that the diarrhea is back, and see what he says.

A green light when everything is fine is a great idea - let us know when you invent it .

 

[crohnsinct]

Agree with both of the above. My younger daughter was dx'd a year ago and aside from a few weeks each time she did EEN when symptoms disappeared and she had normal biomarkers, she has not been in remission.

It could be the prednisone taper. Sometimes you just have to go super slow but my bets are that Pentasa isn't strong enough and tat will come to light soon enough. Shame that we have to jump through hoops for the docs like this. My daughter has been jumping this whole year.

I would call and let the GI know every single symptom and occurrence. This is all new o you, her and the GI. It takes time to figure out each patient. Kids aren't machines. They all present and react differently.

Funny - I just sent the GI a note asking him to install a check intestines light at my daughter's scope on 1/15.