New to group, questions...

[mbkaiser01]

I'm new to the group and apologize in advance for a long post! Long story not so short, my husband has experienced issues on and off for quite some time that he just assumed was irritable bowel and worked through. He ended up hospitalized for a week last month with pancolitis. His scopes, biopsies, CT scan all suggest IBD though the doctor is hesitant to make the diagnosis until he is absolutely sure anything infectious is ruled out (all cultures negative). He has been started on sulfasalazine in the interim. Ironically, at the same time, my 13 year old daughter after a very major surgery in October has suffered from chronic diarrhea. Her pediatrician did a routine workup and all cultures were negative. She also did the Promethus IBD panel which interestingly enough came back with a pattern consistent with Crohn's. Her genetic components, serology, and inflammatory markers were all positive. She just had an upper and lower scope on Friday that looked surprisingly good. The nurse just called and said the only thing the biopsy shows is reflux- which she has never had symptoms from. Both my daughter and my husband are both still having pretty significant symptoms... We're all trying to get our heads around this. Do they both have Crohn's, neither, etc.. And, to complicate things further, my husband's GI doctor has advised my husband that he does not advise him getting the Promethus test. He prefers to watch and wait, take Sulfasalizne for three months, see if things improve. If they do, stop it, wait three months and repeat the scope. He said the Promethus test would only cause anxiety and complicate things but did agree that if we insisted, he would order it.. Finances aren't an issue and our insurance will pay. Our feeling is that things are already complicated so we don't see how these test results could complicate things more- and maybe it may help bring sense to the confusion here... So, My question to the group is as follows- Have most folks had the Promethus test? What has been your experience as far as doctors recommending it or not wanting it done? Has anyone experienced false positives with the newest test? I understand there have been some pretty significant advances over the last couple of years with the test. Apologies again for the long post!

 

[ronroush7]

Welcome. I had to last year.. There was nothing significant that stood out concerning the test. I hope they can come up with a diagnosis for both your husband and daughter.

 

[Scipio]

I had the test a few years ago when my doctor was trying to make a diagnosis. It came back positive - consistent with Crohn's. And that did in fact turn out to be the diagnosis. The clincher in my case was capsule endoscopy spotting the lesions in the small bowel. The Prometheus test was one more piece of information along the way.

 

[mbkaiser01]

Thanks. We are going to push for the capsule/pill cam especially with my daughter. My husband did get the IBD panel drawn today, even though the doctor was hesitant to do so stating it could confuse things more. Hopefully that's not the case and I'm pretty sure we can't get anymore confused at this point