2nd Remi tx. Diarrhea doesn't stop!

[SZellis]

I'm honestly going crazy! My son spends at least half of his day and night in the bathroom. It's to the point that I can't concentrate when he's there he is so depressed because he's hardly been to school in the past month. He doesn't sleep consistently. He cries alot out of discomfort and frustration.
I feel helpless. Immodi isn't helping!
He completed his 2nd remicade tx last thurs. I know it's too soon to tell. He seemed better in the first few days after his 1st tx but then it all came back. No relief after the second tx.
The latest Is he's starving after being in the bathroom so I find him in the kitchen during the night.
Maybe his blood sugar is low from so much diarrheah?
He's in 40mg pred, 75 mg 6-mp, remicade (just 2 tx though so far) and Pentasa. 2000 mg daily. His blood work is always good which throws the dr off.
This is all over the place I'm sorry!
Sheryl
Son dx w CD at age 10. Now age 12

 

[DustyKat]

Oh my Sheryl...:hug::hug::hug:

I don't have any experience with Remicade at this end but I wanted to send love and healing thoughts your way. :heart:

No doubt there will be others along that will be able offer up their knowledge and experiences.

Good luck hun, you are in my thoughts.
Dusty. xxx

 

[Clash]

It can take remicade some time to work but it is a little concerning that he seem to respond to the first infusion but hasn't the second one. But with some it takes several infusions, I'd keep the GI updated and it might be beneficial to ask about antibodies test and Remi levels test. I'm not sure though as he has just started. My son responded right away to the loading doses but couldn't make the 8 weeks between regular infusions. I hope he starts to see improvement soon!

 

[Sascot]

So sorry to hear that. It must be so upsetting to see. I wish I had some advice for you, but all I can do is send hugs and healing thoughts. Has your son ever tried the EN liquid diet? I know it's not much fun having to only have the drinks for 8 weeks, but it sounds like your poor boy is really suffering so he would probably be willing to try. My son couldn't stand the taste so had the NG tube in. It might be what's needed to help his body heal inside so the meds can work to their full effect. Modulen is supposed to be anti-inflammatory as well as giving all the calories he needs.
Good luck, hope things improve.

 

[my little penguin]

More hugs ... It took three infusions here to get relief and even then DS did not make it the whole 8 weeks. As far as hungry Pred will really do that especially once some of the healing is starting .
Hopefully you will see some improvement soon

 

[izzi'smom]

I am so sorry...we have been where you are and it is heartbreaking for sure!
Remi didn't end up working for us, but we gave it a good six months and combined it with enteral nutrition and Pentasa.
Has he tried hyoscyamine or the like? From what I understand motility can cause pain and it may help...it's what we were given when I complained about Izz's pain.

(((HUGS))), mama, and hang in there...hoping things settle for him soon. :heart:

 

[Tesscorm]

I'm so sorry to hear he's having such a tough time, can certainly imagine how tough it is for you as well

I wish I had some advice too but have no experience with remicade.

Perhaps do try the EN, its success rates at inducing remission are comparable to steroids... it might help the remicade along and get him on the path to remission.

When is his next infusion?

Lots of hugs!!! :ghug: :ghug:

 

[crohnsinct]

Hmm. My daughter saw results right away but I am not sure if that was from the prednisone or Remicade. As we weaned her from Prednisone she got worse. Has he recently decreased any of his other meds? Eventually, we tighhtened up Remi schedule, raised the dosage and in the end wound up doing an 8 week course of EN to help the Remicade get her over the hump.

Ditto what Clash said about Remi testing.

I would see if he would be willing to give the EN a try as that worked wonders for my daughter and she remains on just Remicade every 5 weeks at adult dose.