My 12 year old son was diagnosed with Chron's just over a year ago. It was very unexpected and devastating news. It was more terrifying seeing him wasting away and not knowing what was happening. Once he was diagnosed, my husbandand I immediately started doing our research regarding this incurable disease. We were both tested and was not diagnosed with the gene, which left us even more puzzled on how, all of a sudden, our son ended up with this IBD. The doctor, who we were seeing at the time, put him on prednisone (which we hate) and 6-MP. He stayed on the 6-MP for only 2 weeks because the doctor felt as though it wasn't working, based on my son's bloodwork, and wanted to immediately treat him with Remicade much to me and my husband's dismay because we felt it was too soon because he had not tried any other treatments. Needless to say, because of our disagreement with the doctor, we found another Pediatric GI Specialist who is absolutely wonderful and was willing to take baby steps.
With the new treatment, we also started a gluten-free diet (and when I say the word "we", that includes my husband and myself), he takes Omega-3's, VSL#3, and a multivitamin. Praise be to God, that my son has not had a flare since he was diagnosed. However, we were told that he would have to have a upper and lower scope every year as a preventative measure. We didn't like hearing that, but we understood. My son recently had his yearly scope, and we are so glad that we were compliant in understanding how important, especially a person who has Chron's, a scope actually is. His upper scope was clear and turned out great. However, his lower scope, where the disease set in the small intestine (ileum) showed some stricturing (narrowing of the small intestine) which is very common in a Chron's patient. The stricturing is from where that part of the colon had been badly inflammed and then tried to heal. The next step is to have a Barium X-ray done and from there we will see what type of treatment he will need to be on. I think I have an idea that they will recommend the Remicade. Now, mind you, he still feels pretty good and has not had a flare.
I started wondering why, with the stricturing, did he not have any pain or symptoms and quickly found out that some patient's have symtoms and some don't...that's why it's good to have a scope done every year. Just when you think you are all alone fighting this disease, it is comforting to talk to others who actually know what my son is going through and very comforting to hear how other's have gone into remission. At this point, we are just asking for prayers and healing. I wish you all comfort and healing!
With the new treatment, we also started a gluten-free diet (and when I say the word "we", that includes my husband and myself), he takes Omega-3's, VSL#3, and a multivitamin. Praise be to God, that my son has not had a flare since he was diagnosed. However, we were told that he would have to have a upper and lower scope every year as a preventative measure. We didn't like hearing that, but we understood. My son recently had his yearly scope, and we are so glad that we were compliant in understanding how important, especially a person who has Chron's, a scope actually is. His upper scope was clear and turned out great. However, his lower scope, where the disease set in the small intestine (ileum) showed some stricturing (narrowing of the small intestine) which is very common in a Chron's patient. The stricturing is from where that part of the colon had been badly inflammed and then tried to heal. The next step is to have a Barium X-ray done and from there we will see what type of treatment he will need to be on. I think I have an idea that they will recommend the Remicade. Now, mind you, he still feels pretty good and has not had a flare.
I started wondering why, with the stricturing, did he not have any pain or symptoms and quickly found out that some patient's have symtoms and some don't...that's why it's good to have a scope done every year. Just when you think you are all alone fighting this disease, it is comforting to talk to others who actually know what my son is going through and very comforting to hear how other's have gone into remission. At this point, we are just asking for prayers and healing. I wish you all comfort and healing!
I'm so sorry to hear your son has Crohn's, that must be so difficult for all of you 
