Frustrated

[amartin43011]

Hello- I have a 14 year old son who has had lower stomach pain since May. He had a fistula when he was 6 on his rear end. The fistula came back 2 years ago in the same spot. At the beginning of October he started complaining about pain in the same area. He has had 2 ultrasounds on the area and a MRI along with blood work. Everything has come back normal. I am getting really frustrated. To look at my son you can tell he does not feel good. But the doctors are at a loss. And I feel like they are not concerned. I was wanted to see if anyone else is going through this. If there is someone on here who might have a suggestion as to what might be going on. TIA

 

[my little penguin]

Has he had a upper and lower scope ?
Mri with entography ?
Capsule endoscopy ?
Fecal caloprotectin (stool) test ?

 

[amartin43011]

Has he had a upper and lower scope ?
Mri with entography ?
Capsule endoscopy ?
Fecal caloprotectin (stool) test ?

He had and upper and lower scope done in May. He has had a couple fecal test done over the last year. He has had the MRI with contrast. Has not had the capsule endoscope.

 

[my little penguin]

Capsule endoscopy (pill can ) has caught disease for some in the small bowel that is normal eisewhere
Other question would be are his stools soft (Bristol 4–5) , a few times a day everyday

MRi with contrast is not the same as MRE
MRE is an mri entography (have to drink multiple barium like drinks prior ) with gallulidum /glycogen to see the bowels fully for thickening etc

 

[amartin43011]

He has had an upper and lower scope last May. Within the last month he has had a MRI with contrast. And over the last year a couple fecal test. He has not had the capsule endoscopy.

 

[lukesjr]

In support of the capsule test. I had every test on the planet and they all came back normal. Mri contrast, upper, lower, ultrasound, fecal test, and the list goes on. I switched GI doctors he did a capsule and found the inflamation/crohns. I have the mildest case of crohns, my symptoms are probably what most crohns people have in remission.

 

[Maya142]

A capsule endoscopy might be the best next step. If they do not think it is IBD, then what is causing the fistulas?

I would also consider a second opinion at one of the big pediatric IBD centers - Children's Hospital of Philadelphia (CHOP), Boston Children's and Cincinnati Children's all have great pediatric IBD programs. Some of them will even do an online record review, so you don't have to travel. Alternatively, a teaching hospital affiliated with a university/med school near you would be another option. A second set of eyes can really help.

 

[crohnsinct]

We all look at fistulas from the IBD perspective because that is what all our kids have but the more common cause for an anal fistula is a clogged anal gland and anal abscess. Anyone can get these. I am wondering if the pain is the beginning of an abscess but it hasn't quite developed a fistula tract yet that could be visible on MRI or scope?

I also vote pill cam. It may not be IBD but it is something. Kids don't walk around with pained expressions just for fun. Keep pushing for an answer mama. You are doing a great job.