juujuubug
08-02-2007, 07:08 PM
we just found out that my daughter has crohn's this is a big shock for us because we just took her to the gaster.doc because of her acid reflux she has had it and been on meds for 5 years and still is a grade 4 meds. don't help so we went to see him he did a lot of blood work 1 was for crohns well it came back postive so we had the scope ran down both ways and yesterday found out she does have crohn's if some one could please help me understanding this better or have a child that has it thank you
rp1965
08-05-2007, 08:30 PM
My cousin's son was diagnosed with Crohns disease around the same age as your daughter, this is the usual age when this disease erupts with symptoms, maybe a bit older, but his symptoms were bleeding during bowel movements and quite intense abdominal pain. He was prescribed numerous pills in the beginning, one name that stands out was Methotrexate, never agreeing to the intense steroid therapy the gastro doctor suggested because of the posibility of swelling up and appearing "chubby". He then opted for Remecade which did not provide the results expected, although the treatments were not followed precisely as prescribed by the doctor, and most recently, now at 19, due to his disgust with having dealt with the intense treatment of the disease and not much positive results, decided not to treat at all. His mother of course is concerned, but can also understand his decision. There can be serious reprecussions from not staying the course with Crohns, but he will not continue with treatment at this point. Another sad issue with this disease is regarding some of the treatments which have shown promise and decent results such as Remicade and others are still considered "experimental" for treatment with Chrons and are not covered fully by insurance. This was the case up to his last treatment, I do not know if this medication has been fully accepted as of yet. A very concerning issue which I feel is a travesty which makes this an expensive disease for a Crohns sufferer's parents to have to deal with also. His FDA approved meds were covered, but htere were so many that I remember my cousin stating her co-pays were $300 a month, I don't know if she finally looked into the mail order pharmacy in which Blue Cross charges a lesser co-pay with the ability to order a 90 day script unlike getting the meds from the local pahrmacy,but that does not matter now since he is not taking any meds. Since there have been remissions and good results with Remecade, I always wondered why won't the insurance companies agree to cover those treatments in full, the cheap b@$#@&%$ they are, health insurance plans are no where near what they used to be. You also have a difficult time considering it is never easy to see one's own child with a chronic illness, I have a hard time seeing my cousin's son and hearing how he copes. To add icing to this cake, Chrons is a disease which will need constant lifelong treatment, another aspect of this condition which has also caused him to be depressed at times, not being able to live his youth like others his age. But, hopefully, your daughter will hit a long remission and never exit it. I have heard of very long remissions with this disease, that is a possibility. Good luck, I hope your child does well.
juujuubug
08-08-2007, 08:42 PM
thank you for your reply my daughter is on predinisone she has 2 more days of this plus she is on asacol 6 pills a day the past couple of days she has been in pain with her stomach so i am not she if this is the right meds for her but i am going to give it a couple of more days and see i just would like to here of some other story because like i said i took her in for reflux not to be told that my daughter has crohn's so i just need some help thanks
cyberram77
08-17-2007, 10:25 PM
thank you for your reply my daughter is on predinisone she has 2 more days of this plus she is on asacol 6 pills a day the past couple of days she has been in pain with her stomach so i am not she if this is the right meds for her but i am going to give it a couple of more days and see i just would like to here of some other story because like i said i took her in for reflux not to be told that my daughter has crohn's so i just need some help thanksYou might want to read breaking the vicious cycle by eliane gottschall,written because of her daughters crohns.
dorothymary
10-15-2007, 07:00 PM
My 20 year old son has had Crohn's since he was 13. He was so ill that he ended up in hospital with a bowel obstruction and was on the point of surgery. After intense treatment with intravenous steroids he began to improve. He has been on Asathioprine for most of the time since and has been very well. It's an immunosuppressant and he can eat anything. Do they use it in America?