Was this bad news?

[lad473]

My son is 11, dx 5/2012. Started Remicade 7/2012. Has shown improvement. Blood tests come back normal;he's gained 15 pounds and grown a few inches. Had endo/colonoscopy today. I foolishly was expecting the, to say it looked all healthy. Biopsies will be back next week, but the visual showed inflammation of the ileocecal valve and mild scattered edema throughout the colon. Everything from endo looked normal.

This is an improvement (he had ulcers from mouth to rectum before), but I'm curious. Does it take this long to heal, or is he still experiencing symptoms. I was feeling good about the progress, but now I'm worried again.

 

[CarolinAlaska]

Good question. I'm sorry he is still showing any signs of disease. I'm interested in what the others say and his docs say... Maybe this is why they do the colonoscopy even when they are clinically better...

 

[Clash]

My son started Remi in May of last year since then we upped the dose, tweaked the schedule and added methotrexate.

Still in February, when he had a scope and MRE it showed some inflammation at TI(where his was located in the beginning) so I think it just takes times.

His Fecal Calprotectin was 1700 during bad flare, then 300 at the time of February colonoscopy and MRE and then normal at 48, just a few weeks ago. I think it has just taken that long for everything to heal like it should.

 

[crohnsinct]

Hi lad! Well while I wouldn't post any :dance:'s over this let's look at the bright side.
- weight gain
- height growth
- normal bloods
- an awesome GI vigilant enough to go in and look
- improvement found

Has there been any tweaking of his schedule or dosage? Have they tested Remi levels prior to infusion? Like Clash's son my daughter responded to Remicade but showed signs of inflammation toward the end of her cycles. They tightened her up to every 5 weeks and a little above adult dosage. Maybe he is responding but there is still a little simmering inflammation being allowed to take up residence. I wonder if tightening the schedule up a bit might not help with that? You may also be looking at adding another little something to the Remicade.

I also would be curious to hear what GI says but would still focua on the positives.

As an aside, this is becoming all too common and kinda scaring me. I am afraid I am a castle dweller feeling pretty invincible these days. My daughter hasn't had follow up scopes since dx so until then in my castle I will stay!

 

[Clash]

Yes, CIC remain in the castle but run out to that great Ped you have and get them to do a fecal calprotectin(since I think I remember your GI doesn't?) Then back to the castle for the evening wine tasting!

 

[my little penguin]

^^^ yeah that
We were told fecal instead of scopes for a while to keep an eye on things .

That being said DS had mild inflammation ( on scope )after 8 months on 6-mp
So he was switched to Mtx .
And later remicade

 

[Dexky]

My son gets annual scopes and, while he has never had remission, our GI was optimistic this latest scope last month because all involvement in now in the large intestine. If all inflammation is in the colon, they have options to target it. My son has been given Uceris(busedonide) to hopefully get him over the remission hump. He has been on Humira for well over 2 yrs now so I'd say yes, it can take that long to heal. Good luck!!

 

[lad473]

Talked to the doc today. Nothing new from biopsies, but she was also surprised there was active inflammation in the small intestines (might explain him still not gaining enough weight). His next Remicade infusion is 8/13. She is going to test his blood before his infusion to see what his Remicade level is to evaluate his dosing. Anyone have experience with this?

 

[Clash]

My son has had his levels tested before infusion before. It is just a blood test but since they have to send it off it can take a little while to come back.

 

[Jenn]

Indeed IBD is so insidious. You can have relief of symptoms without clinical remission, healing takes longer than just the reduction of symptoms. My son had stubbornly low protein until we put him on both Humira and 6mp. Hope you get it worked out.

 

[Tesscorm]

We just had the same test just before his last infusion... showed my son did not have any remicade left at 8 weeks, he's moving to 6 weeks now.

My son started remicade in February 2013 and is scheduled for an MRE in August. I was going to ask how much improvement I should be expecting but, from the answers above, I guess it takes a while??? I'll post how much improvement we see...

Curious... I've never seen this mentioned but do some areas typically take longer to heal than others? ie colon vs ileum, etc.