Stomach pain! What could it be?

[Pink]

I am looking for some support please as it it hard to watch my son suffer daily :
My son who is 18 who was dx with crohns of the duodenum a year and a bit ago and has been on remicade (his first medication) for 4 infusions so far. His G scope last week thankfully showed major improvement and he now has mild disease in the duodenum ( went from severe to mild). Yay!
However, the past 3 weeks or so, my son has been having bad cramps and mostly in the evening. I am wondering if there is something possibly going on in his bowel? Would I assume that if the remicade is working to heal the duodenum, than it must be working in the large intestine? Initially when my son had his colonoscopy a year ago, it showed very mild disease in the TI. Initially, the Dr wasn't even going to call it Crohns until he did the G scope and found moderate disease in his duodenum, that eventually became severe and remicade was the drug of choice.
I don't know if I should insist on another colonoscopy, or is pain something that should be expected??
My son went undiagnosed for years, but his main symptom was acute bouts of vomitting every few months or so and fatigue, but not persistent pain.
Any thoughts or insight would be greatly appreciated!

 

[theOcean]

I would definitely call the GI to report the pain he's experiencing. It sounds similar to the cramps I would get when my Crohn's was active. It might be helpful for him to go on a short course of prednisone to help with the inflammation.

 

[my little penguin]

DS has upper and lower crohn's - similar to your sons - vomiting etc.
When he has a scope Gi typically does upper and lower to make sure both are in check .
Has he had imaging done ?
Mre or pillcam ?
Those can pick up inflammation, how about bloodwork ?
Typically it takes a while for things to heal up and 3 infusions are just the loading dose .
Is there a reason your child was not on any meds for a year ?
I would definitely call the Gi and let them know what's going on

 

[Pink]

@ TheOcean,
Thanks for your prompt response. Yes, I will call his GI.
@ my little penguin: Thanks too for your information!!The Dr hasn't done a colonoscpy for a year, he was mostly concerned with duodenum and did the G scope. We originally did an MRE ( 12 months ago) and it didn't show anything. Only the G scope showed severe disease and the colonoscopy showed very mild in his TI. My son had no symptoms and the disease originally was so mild, that The Dr wanted to wait it out..... wasn't a good move... we learned how quick this disease can move. Bloods are always perfect even when his inflammation is severe. I will call the GI! Thx

 

[DustyKat]

I agree that a call to the GI is definitely in order Pink as this is a new symptom for him.

Since bloods are not a good indicator for your son then move to Faecal Calprotectin and a colonoscopy with small bowel imaging to back it up. My concern would be what has been loitering in the TI prior to his Remicade infusions. Whilst Remicade should mop up any inflammation throughout the bowel it won’t have any effect on any scar tissue that may be present. Scar tissue will cause pain but won’t show up in bloods or stool samples if no inflammation is present.

Pain is never a normal state and should not be expected if you are in remission.

Good luck with the GI and keep us posted. :ghug:

Dusty. xxx

 

[Pink]

DustyKat,
Your feedback makes much sense- thanks!
I will contact his GI, and will keep everyone posted.
Thanks so much for the support xx

 

[my little penguin]

Second the fecal caloprotectin - DS blood work also is perfect when he is inflamed .

 

[Sascot]

Not much else to add, hope you get some answers soon. Has your son tried EN at all. It might be worth looking into as it would give his insides even more chance to heal.

 

[kimmidwife]

Not much else to add either. I hope you get some answers quickly!