HI everyone,
My 9 year old son Brandon was diagnosed with CD two years ago, based on history and a colonoscopy. Went on Asacol , and omeprazole and did well for two years. At thanks giving he had a flare up, we ended up with a new GI for insurance reasons. He said he coldn't say for sure it was CD it may be UC, but he did say yes IBD. Had another colonoscopy and endoscopy. Terminal ileum was hemmorhagic and inflammed, colon looked good. Path results showed chronic colonitis but not much inflammation in terminal ileum. Surprisingly opposite to colonoscopy views. We added Entocrot, got very poor very quickly at $1200 a month, it helped for a month and blood and D dissapeaeard, pain and frequency of BM cedcreased. Then we tried to decrease dose. Pain came back, and frequency of BM went from about 5 to 10 per day. Gave up on that drug after 3 months, went to steriods 40mg. Great after first week, BM down to 3-4 a day, pain decreased from 7/8 to a 3/4, getting whole days at school and not waking up at night due to pain. Tried to wean from steriods, dropped to 30mg and pain increased frequency increased no D and no blood though. Now Dr wants to try Remicade. I wanted to be sure this was the right thing to do. We finally had paid for the Prometheus test as ins wouldn't cover it and got the results today. Apparently the result could not confirm either CD or UC. So now what. Does he even have IBD? He has severe joint pain and is waiting to see a rhuematologist, he has dry eyes and eye poain and redness a lot. He is allergic to eggs which we avoid. His grandmother was DX with CD, and his uncle with UC.
I am so unsure about trying Remicade without knowling if it really is IBD. the nurse practitioner said it is IBD, but undetermined and encouraged us to try Remicade. She said the results of the colonosopy with the views of the terminal iluem were more definite than the Prometheus test results. She also said his inflammatory markers in his blood tests are not present, could this be because he has stayed on his Asacol and Omeprazole the last 2 years?
To top it all, my husband saw his Dr. today. He has autoimmune ITP, and neutropenia with joiunt pain, eye pain and malaise. An undiagnosed autoimmune disease. He just came off steriods that were ineffective and they recommended he try Rituximab (also a chimeric monoclonal antibody). Noone will see both of them together!!
Just don't know which way to go. Can you have an indeterminate result on the prometheus test and still have crohns. Can you have severe pain and life limiting symptoms without inflammatory markers in your blood and without severe ulcers in teh GI tract with IBD???
Help!!
Trina
My 9 year old son Brandon was diagnosed with CD two years ago, based on history and a colonoscopy. Went on Asacol , and omeprazole and did well for two years. At thanks giving he had a flare up, we ended up with a new GI for insurance reasons. He said he coldn't say for sure it was CD it may be UC, but he did say yes IBD. Had another colonoscopy and endoscopy. Terminal ileum was hemmorhagic and inflammed, colon looked good. Path results showed chronic colonitis but not much inflammation in terminal ileum. Surprisingly opposite to colonoscopy views. We added Entocrot, got very poor very quickly at $1200 a month, it helped for a month and blood and D dissapeaeard, pain and frequency of BM cedcreased. Then we tried to decrease dose. Pain came back, and frequency of BM went from about 5 to 10 per day. Gave up on that drug after 3 months, went to steriods 40mg. Great after first week, BM down to 3-4 a day, pain decreased from 7/8 to a 3/4, getting whole days at school and not waking up at night due to pain. Tried to wean from steriods, dropped to 30mg and pain increased frequency increased no D and no blood though. Now Dr wants to try Remicade. I wanted to be sure this was the right thing to do. We finally had paid for the Prometheus test as ins wouldn't cover it and got the results today. Apparently the result could not confirm either CD or UC. So now what. Does he even have IBD? He has severe joint pain and is waiting to see a rhuematologist, he has dry eyes and eye poain and redness a lot. He is allergic to eggs which we avoid. His grandmother was DX with CD, and his uncle with UC.
I am so unsure about trying Remicade without knowling if it really is IBD. the nurse practitioner said it is IBD, but undetermined and encouraged us to try Remicade. She said the results of the colonosopy with the views of the terminal iluem were more definite than the Prometheus test results. She also said his inflammatory markers in his blood tests are not present, could this be because he has stayed on his Asacol and Omeprazole the last 2 years?
To top it all, my husband saw his Dr. today. He has autoimmune ITP, and neutropenia with joiunt pain, eye pain and malaise. An undiagnosed autoimmune disease. He just came off steriods that were ineffective and they recommended he try Rituximab (also a chimeric monoclonal antibody). Noone will see both of them together!!
Just don't know which way to go. Can you have an indeterminate result on the prometheus test and still have crohns. Can you have severe pain and life limiting symptoms without inflammatory markers in your blood and without severe ulcers in teh GI tract with IBD???
Help!!
Trina
