I'll try to make this concise. I have IBS. Ten years ago my son, now 23, was diagnosed with Crohn's - he was tired a lot, not very tall, not a big appetite. A GI specialist suspected Crohn's and did the Prometheus test (which said 46% probability), blood work (which is ALWAYS normal - SED rate has never been higher than 11 and white blood count always normal), and a colonoscopy (which showed a few granulomas). His colonoscopies have always showed normal healthy tissue w/ no ulcers or anything. He was put on 6MP and grew a foot in 2 years, started eating more and gained weight. He has had a few bouts of fissures, some diarrhea and one anal abcess about 5 years ago. In the last 4 years he has been symptom free and feeling great - eating whatever he wanted with a cast iron stomach.
Six weeks ago he started having abdominal pain, mostly on the left side between his bottom rib and belly button area. He had episodes of diarrhea too. The pain got bad after about 2 weeks of it being off and on and one night we had to take him to emergency. His GI doc (a very well known expert in this field) admitted him and had to put him on pain shots. They did a contrast CAT scan, upper GI series, endoscopy, colonoscopy, blood tests galore, stool samples, checked gall bladder and even the test where you swallow the camera in the capsule. Every single test came back completely normal - no sign of crohn's anywhere!!! They repeated the colonoscopy 2 weeks later and did 12 biopsies taken from the whole length of the colon - negative, not even any granulomas.
The GI doctor is now questioning the diagnosis of Crohn's. He says it's more like we are dealing with severe IBS. But why would the pain be mostly on the left, why has the pain been there everyday now for 6 weeks - sometimes low level, sometimes high, why did it seems like he had Crohn's when he was younger and the 6MP helped, why did he have fissures and the abscess? It's all very weird! But the GI doctor says he knows for sure that the Crohn's is definitely inactive at this time.
He has an appointment with a Crohn's specialist at Cedars Sinai the middle of January - his GI doc wants a second opinion on this - he and his colleagues have not seen this in their practice before! Has anyone here heard or seen anything like this, especially Heather?
Print
Remind Me
Notify Moderator
|
Posts
Anyone else experienced this? Thoughts Heather?
