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...amd PANIC!

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positivemum

It was all going so well...

Feb '15 back on to pred and start remicade. 3 loading doses fine- no symptoms.

during the 8 week wait for next infusion serious exams(GCSEs here in UK - DS is 16) and the stress nearly kills him - stomach and bowel affected with looser stools etc.

Have 4th infusion 2 weeks ago still in exams and now he has looser runnier and a bit mucousy stools and today a bit of blood( don't think bright red) on toilet paper. Bleeding never a good sign for him.

Help!! What is going on? What can we do? Advice? Not on any other meds.

I hate this crohns rollercoaster and here we go down again. It is the weekend so I can't speak to his nurses til Monday - can anyone help?
 
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crohnsinct

Well-known member
Hmmm.not a lot of kids are able to make it to the 8 week mark right off the bat so it could be the 8 weeks was just a bit much for him. But that wouldn't explain symptoms popping up 2 weeks after the last infusion. Could it just be a reaction to stress rather than actual Crohn's flaring up? Stress can do a number on even non IBDer stomachs. As for the blood, if it was just on the paper I wouldn't all out freak just yet. My older daughter is a bleeder and it only really is an issue when it appears with the stool in the toilet.

Did they pull regular blood tests at infusion? Does his inflammation show in the blood markers? If something was off I would think they would have noticed it in the blood results and given a call.

I hear ya on the getting through the weekend part! Will he do some EN to help calm things down a bit until you can talk with the doc?

Even if it is Crohn's, there is a lot they can do with Remicade. I is a very flexible drug so I am sure they will be able to get on top of it and figure things out.

Lots of hugs for you! Waiting is the worst!
 
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SupportiveMom

SupportiveMom

Sad to hear the latest setback. Stress is a killer on IBD. My D is experiencing a bit of a flare with the pressure & increase her BMs by 4 a day since exams started. I'm confident things will calm as the stress calms. For us there isnt much to do in interim before her colon removal July 15. But for you there are some options.

Remicade should start kicking in now, but some take a bit longer. The additional stress will make it hard to judge. What is his prednisone dose? If you are tapering I would stop tapering until you talk to the doc. It may be best to wait until after exams to continue the taper. They may even suggest a slight increase. Every time we knew of a stress trigger we stabilized prednisone. Pred is the only thing that kicks in fast & that why its the go to drug for docs.

After exams you might want to consider combo therapy (adding Imuran, methotrexate, etc). It reduces the risk of antibodies so he can stay on Remicade longer and can be that extra boost to keep crohns under control.

In the shortest term, get him on the BRAT diet (bananas, rice, applesauce, toast) to calm the bowels a bit. It should reduce any further aggravation.

Keep us posted!
 
pdx

pdx

I understand your panic--we went through a similar thing in February after my daughter's 3rd Remicade infusion. She actually ended up in the hospital for a week, and I was worried that Remicade wasn't going to work for her.

At that time, many people on the forum gave me the advice that you've gotten here: that kids often need higher dosing or combo therapy. That was definitely the case for my daughter. We ended up having to add EEN, MTX, and budesonide, along with changing the infusions to every 6 weeks. With all this, she finally started to get better. (Her doctor is still adjusting dosing, though, and is going to increase the dose again at the next infusion.)

So yes, do what you can this weekend to calm things down--EN, or whatever your go-to foods are during a flare. But then I would ask your doctor on Monday about increasing the frequency and/or dose of Remicade, and adding MTX or imuran as a combo therapy.

Hope your son feels better soon. (Are his exams almost over? That should help too.)
 
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positivemum

Thank you all for your advice and reassurances!

He is on day 10 of EN at his his choice. His last exam is this week so I will give him a few days to settle down and if not I will be back on to the hospital
 
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positivemum

...and so I have called the Gi nurses at the hospital at his request due to bleeding.

So worried what the next steps will be. Currently on 8 weekly remicade ( have had 4 infusions) and no other meds.

Hoping someone out there can make me feel hopeful as we go down on the crohns rollercoaster again.

We will hear back tomorrow as it is nearly 10pm here
 
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crohnsinct

Well-known member
Don't panic just yet. It is early. Perhaps the prednisone taper was a little too aggressive. I know many here get fast results with Remi but out experience was like yours. Every time we tapered the steroids symptoms came back. It took us a good six month of tweaking dosage and schedule and a course of EEN with the Remi to get O to remission with Remi and no steroids. It is still a little early in the process. I would think they would reintro the Prednisone until they get the Remicade schedule sorted out and you are further along. The important thing to remember is you have options.
 
kimmidwife

kimmidwife

Sorry to hear positive mom! I agree it sounds lo,e the remicade taper may have been to fast. We just went through this too.we had to put her on a high dose again and are finally weaning back down but this time much slower. Fingers crossed that you get things sorted out quickly!
 
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