Hi all -- I haven't posted in quite a while. My son is 14 and was diagnosed with Crohn's when he was 8. He's been on Remicade since diagnosis. It's always been very effective for him - little flares every now and again, but the crohn's has largely been under control. However, this school year has not gone well. My son is c/o belly pain and has diarrhea quite frequently. Had his GI doctor check things out, and his Remicade level is therapeutic, labs were pretty OK. He did not do a colonoscopy, and has said he won't do one until 2015 barring any unforseen complications.
The doctor thinks this pain and frequent diarrhea is actually not Crohn's, but is being caused by scar tissue in his rectum. The doc gave me a long, complicated explanation, but I guess the bottom line is that he believes, based on the timing of symptoms (always seems to happen in the a.m.'s), he believes the damaged tissue is sending signals up the GI system and causing the overactive diarrhea. He recommended a rectal medication, which my son finally agreed to try after six months of suffering. This medication seemed to help for the first week, but not so much after that.
Additionally, he's c/o of being tired/exhausted all the time. He's had a pretty bad rash (for lack of a better word - it's worse than a "rash") behind his ear. The GI doc looked at that several months ago when my son was there for his remicade, then had the infectious disease doctor look at it as well. The ID doctor recommended a steroidal cream which helps, but the rash (?) comes back when the med is stopped.
I've noticed in the last few days my son's cheeks are flaming red. No fever. Just red and inflamed, and the "rash" from his ear seems to be spreading to his cheek. Is it some kind of psoriasis? I don't know - the ID doctor never said what it was (to me), nor did the GI doc, and apparently the GI doc didn't document it in his chart.
He's had an incident of alopecia areata in the past, and his scalp is getting super crusty/flaky in spots again. No hair loss that I can see at this point, but this is kind of how the alopecia started 3 years ago or so.
So ... I guess my question is ... these external symptoms (the rash, the cheeks, the scalp) all seem to be related, what kind of doctor should I take him to? Dermatologist? Infectious disease? Pediatrician (not holding out a lot of hope that the ped would be much help, really). I am questioning whether he has some other autoimmune process at work here, in addition to the crohn's. ???
I'll be very insistent with the GI doc at the next Remicade visit about getting these diarrhea episodes under control because at this point my son is missing school EVERY WEEK because of them. His teachers are calling me, concerned he won't be able to finish the year successfully, he's behind, may not be able to get caught up, etc. I'm trying to impress upon them that when he's having these episodes it would be IMPOSSIBLE for him to be at school - he's on the toilet sometimes for hours, in pain, suffering (I hear it and smell it from the other side of the bathroom door).
This is rambling and long. Sorry. I've probably left things out or not explained it very well - I'm frustrated that he's considered in remission but he still suffers with these other symptoms that have gone uncontrolled all year. Thanks for listening.
The doctor thinks this pain and frequent diarrhea is actually not Crohn's, but is being caused by scar tissue in his rectum. The doc gave me a long, complicated explanation, but I guess the bottom line is that he believes, based on the timing of symptoms (always seems to happen in the a.m.'s), he believes the damaged tissue is sending signals up the GI system and causing the overactive diarrhea. He recommended a rectal medication, which my son finally agreed to try after six months of suffering. This medication seemed to help for the first week, but not so much after that.
Additionally, he's c/o of being tired/exhausted all the time. He's had a pretty bad rash (for lack of a better word - it's worse than a "rash") behind his ear. The GI doc looked at that several months ago when my son was there for his remicade, then had the infectious disease doctor look at it as well. The ID doctor recommended a steroidal cream which helps, but the rash (?) comes back when the med is stopped.
I've noticed in the last few days my son's cheeks are flaming red. No fever. Just red and inflamed, and the "rash" from his ear seems to be spreading to his cheek. Is it some kind of psoriasis? I don't know - the ID doctor never said what it was (to me), nor did the GI doc, and apparently the GI doc didn't document it in his chart.
He's had an incident of alopecia areata in the past, and his scalp is getting super crusty/flaky in spots again. No hair loss that I can see at this point, but this is kind of how the alopecia started 3 years ago or so.
So ... I guess my question is ... these external symptoms (the rash, the cheeks, the scalp) all seem to be related, what kind of doctor should I take him to? Dermatologist? Infectious disease? Pediatrician (not holding out a lot of hope that the ped would be much help, really). I am questioning whether he has some other autoimmune process at work here, in addition to the crohn's. ???
I'll be very insistent with the GI doc at the next Remicade visit about getting these diarrhea episodes under control because at this point my son is missing school EVERY WEEK because of them. His teachers are calling me, concerned he won't be able to finish the year successfully, he's behind, may not be able to get caught up, etc. I'm trying to impress upon them that when he's having these episodes it would be IMPOSSIBLE for him to be at school - he's on the toilet sometimes for hours, in pain, suffering (I hear it and smell it from the other side of the bathroom door).
This is rambling and long. Sorry. I've probably left things out or not explained it very well - I'm frustrated that he's considered in remission but he still suffers with these other symptoms that have gone uncontrolled all year. Thanks for listening.
