I wanted first and foremost to say thank you to all who write, answer questions and give support. I have been a quiet part of this forum for a while now going over all who have written and paying special attention to the posts about treatments. To all of you THANK YOU!!
My son was diagnosed with crohns disease this January 2008. January 2007, he had emergency surgery where they took out 5 feet of small intestine, BUT they never found crohns disease. I would just like to tell all of you he never complained ONCE of any kind of pain. 5 feet of the lining of his instestines was gone with a baseball size abcess and the kid felt nothing!! The only reason we brought him to the emergency room is because he was starting to dehydrate, not because of any pain.
Since then he as has all the tests imaginable never quite finding crohns. Until genetic testing was done and a pillcam. Once the pillcam was done, there were over 40 ulcerations in the juijeum part of his intestines. Without the pill cam they would have never been able to diagnose.
I know a lot of you are in a lot of pain and I feel for all of you. My son (16) does not have ANY. He was started on 4000mg pentasa and 350mg of flagyl. He just had another pill cam done last week and I just got the news from our gastroentrologist that he is a lot worse. Although pentasa seems to be trying to do its job, it isn't enough for him. There are many more ulcerations, and the some of the ones that were there before are now much worse, also there is major narrowing through the small intestine. The doctor who invented the pill cam has a scale from 1-1400. Michael is at 1378, and is not in pain!! His records have been sent all over to many many different hospitals and all doctors agree that he should be in the hospital with pain medication, but there is no need.
Does anyone else have this?? I don't want my son to have any pain, BUT a little ping or pang here or there would help. I feel he is a walking time bomb. [/FONT]
My son was diagnosed with crohns disease this January 2008. January 2007, he had emergency surgery where they took out 5 feet of small intestine, BUT they never found crohns disease. I would just like to tell all of you he never complained ONCE of any kind of pain. 5 feet of the lining of his instestines was gone with a baseball size abcess and the kid felt nothing!! The only reason we brought him to the emergency room is because he was starting to dehydrate, not because of any pain.
Since then he as has all the tests imaginable never quite finding crohns. Until genetic testing was done and a pillcam. Once the pillcam was done, there were over 40 ulcerations in the juijeum part of his intestines. Without the pill cam they would have never been able to diagnose.
I know a lot of you are in a lot of pain and I feel for all of you. My son (16) does not have ANY. He was started on 4000mg pentasa and 350mg of flagyl. He just had another pill cam done last week and I just got the news from our gastroentrologist that he is a lot worse. Although pentasa seems to be trying to do its job, it isn't enough for him. There are many more ulcerations, and the some of the ones that were there before are now much worse, also there is major narrowing through the small intestine. The doctor who invented the pill cam has a scale from 1-1400. Michael is at 1378, and is not in pain!! His records have been sent all over to many many different hospitals and all doctors agree that he should be in the hospital with pain medication, but there is no need.
Does anyone else have this?? I don't want my son to have any pain, BUT a little ping or pang here or there would help. I feel he is a walking time bomb. [/FONT]
