I stopped taking all meds in December.... I havent felt this well in a long time!
I am wondering if I really even have chrons...
As I (may) have indicated in another post, I don't reply to very many, as there are many here far more experienced and in position to offer you more help. I too have a 15yr. old daughter with a similar situation. She will be starting Imuran soon, and I have had many of the same concerns about these meds as you have.
I was where you are about 2 years ago. I had alot of the same questions about the meds, and a more natural approach. Ultimately, it will have to be your decision. Most of the imput I recieved was to stay with the meds and use the natural approach with diet and supplements to assist. The problem is, if you allow the Crohn's to get out of control over and over, you run the risk of damage to the intestines, and a repeating cycle of Prednisone to get it back to remission. My daughter is currently on her second bout with Prednisone. She had been on Pentasa for the last two years, but looking back, I don't know if it was working for her at all, and if a more aggressive maintenance drug was used, then perhaps her remission would have continued without any complications to go with it.
Hindsight's 20/20 of course. Hopefully, you'll get plenty of imput from others, and this will help you make the right decision for you and your daughter.
Thanks for the responses. My daughter is only wanting to get off 6MP. She still wants to wean off Prednisone as directed, stay on Pentasa.
She has been reading up on the Makers diet and SCD. I am really pulling for her to be okay with staying on 6MP until she gets safely into remission, (also using specific diet)
Once she is in remission, reassess things and hopefully just use Pentasa. I don't think she thought about possibly needing Prednisone again.
Sometimes I feel like I read posts from people that are on the big drugs and still need surgeries and have horrible symptoms. It is just so scary. Gosh, I just am not handling this stress of limbo thinking right now. I want her to just make up her mind and be done with it. I completely understand her position, though. She is such a bright kid, very structured, not your average teenager. She wants to be a biochemist or work for NASA.
I always invite her to read the responses you all provide, so I hope she gets a clearer picture of what could be at risk if she doesn't follow the doctors orders. I want her to improve her diet and have researched the HSO's she mentioned. So, we shall see. Hopefully God will just speak to her heart.- and she will be enlightened by the knowledge all of you share.
CRAZYHARRY-- you mentioned better probiotics out there... What are they and where can we get them?
SNOHARE- good point about doctors being "bought" so to speak from drug companies. I think he is just going from what seems to be the routine. He was actually pushing for Methotrexate instead, but left the decision up to us. He has been amazing to work with. He stays with us and makes sure she understands every tiny aspect of her disease and treatment. His nurse took us through an hour long education on Crohn's, the newer statistics, treatments, side effects, etc. The nurses answer all the questions I could possibly have at any time. I feel pretty comfortable that he is prescribing what he feels would be best for my daughter. My Crohn's doctor is not so wonderful. After I was diagnosed I told him all the foods that seemed to bother me. His response was to eat whatever and that my diet shouldn't matter. He doesn't take much time with me and if I have questions he directs me to CCFA. That is a great resource, but sometimes I want answers from him. I have NEVER been on anything but prednisone twice, and contiinual Pentasa. I am glad, but also wonder if he is looking out for me, or just rushing to the next patient.
Post Edited (caroline_r) : 1/29/2009 7:08:16 AM (GMT-7)
That's great that you were able to use the information and opinions here, to help you make a decision. As I mentioned to your Mom, please keep giving updates on how you're doing. Good Luck with everything.