Hi - so sorry to hear of your son's problems. I was dx with Crohn's at age 24, which took some 9 months of testing, both as an in-patient in various hospitals, and out-patient. I did not "present" as a Crohn's patient would normally, i.e. I had no pain, no fever, so the diagnosis was only confirmed by a surgical laparotomy, which has left me with a 6" scar from waist downwards. I only had severe weight loss and diarrohea. Upon surgery, some 15 different places of inflammation were found in my small intestine, and luckily for me, the surgeon decided not to resect any of these sections, as even then in 1970 they knew that the Crohn's could, and probably would, come back, and the more they resect the intestines, the worse the diarrhea. Of course, now that we have colonoscopy, the testing is a lot less invasive. I find the prep the most painful.
I am now 63 yrs old, and have what my gastro calls "panCrohn's/colitis", with ulcers and crypt abscesses from mouth to anus, as the years have progressed. I have a small fistula in the rectal area which leaks faeces, but all the gastros I have seen in England have said there is no point in doing surgery, as it usually causes more problems than it solves. I have just had to learn to live with it, and when I get severe diarrhea, I wear a female type of pad in my pants.
Did the gastro have biopsies done on your son? As far as I am aware, certainly in England, this is the only conclusive way to definitely dx Crohn's.
I have never been prescribed Remicaid as my gastro is concerned that I also have psoriasis and the IV could cause an infection at the point of entry of the canular. I was on prednisone for some 30 yrs, which has affected my bones quite seriously with osteo arthritis, but am now on bisphosphonate medication along with Calcichew/Vit D to strengthem them. I currently inject 12.5 mg of methotrexate weekly, and have found this the best medication so far to keep the Crohn's in remission without the horrendouse flares, hospitalisation, etc. However, as with all drugs, there are side effects, currently with my bone marrow, but I have blood tests monthly and am monitored very well.
I truly hope your son does not have Crohn's, but not everyone with this disease will have the intractable, chronic type that I have. Some people only have one or two flares and the disease seems to stabilise.
If I can help you further, please do post back.
Liz.
I'm delighted with your quick response. I'll be meeting the Pediatric GI today and will request them to run the above tests. I'll keep you posted and appreciate your prompt response. Any help in this regard is deeply appreciated.
Thanks.
Antibody testing can be done to confirm or rule out possible Crohn's disease in the face of inconclusive testing.
Antibodies to neutrophil proteins (perinuclear anticytoplasmic antibodies, P-ANCA) and microbial antigens (IgA and IgG antibodies to Saccharomyces cerevisiae (ASCA) and to E. coli outer-membrane porin (anti OmpC) should be considered if the diagnosis is in question.
I would discuss these options with your gastroenterologist.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
Kevin, M.D.
kevinmd_