I had my GI appointment this am and just returned with alot of answers from him. It looks like I misunderstood him all along and thought I had UC but he said that I have crohns or crohns/colitis. He said not to use the word colitis or UC with what I have as it is a totally different disease. I said ok I guess I misunderstood then. He told me I have a 10cm patch of colitis located 20cm up to about
30cm. So colitis and crohns it is confusing to me I guess to hear the two words together then. I guess my crohns flare manifested itself as a patch of colitis? Would that sound reasonable?
I asked my doc about my prescription I am on currently and he said that I will be on that indefinatly. I am currently on 3x2 asacol hd800. He said to keep taking the canasa for two more weeks then stop completely. I told him about my failed vitamin e enema and he didnt really comment. He just keeps saying as long as I stay on my meds I will be fine. I asked him and said "ok since I have crohns then on a scale of 1 to 10 what would I be at"? he said a 1. He said my crohns doesnt effect my small intestine at all. He also said that could change in time but also not change at all and same goes with the large intestine. But to keep taking my meds.
I then talked to him about probiotics and if it was ok for me to take. He said yes thats fine but stick with one and not to mix them meaning brands. He said for some they help and some dont. I plan on taking ufcc 50 billion from hear out.
My next question was about meds and cost at which he gave me a asacol hd800 prescription rebate card for up to 50 bucks off. I told him I paid 215.00 for a months suppply of it and he said yes thats too much. He then gave me 4 days worth of samples and said to check back for more anytime. I then talked to him about how I got the canasa for 2/3rds the price from Canada and then told him about the asacol hd 800 and generics 800 hd available from Canada also at a tremendous savings. He told me thats great and has no problem with me taking the generics asacol 800hd from Canada. To be honest I was really surprised. Needless to say it was a really good visit to my GI. We discusses my short term goals of gaining my weight back and just feeling better taking my meds regularily and then seeing him in September to see how I am doing. He told me that there is no other drug he would want to put me on in replacement for asacol 800hd either. I asked him this a few times. It seems everyday I am getting back to feeling more myself. I guess for 18months I never took the right amount of meds and dismissed alot of it. I was in total denial and never accepted my condition. I guess in a few months if I get all my weight backl and feel good then it is worth every penny. It seems over the last 18 months since dx I accepted a new level of healthy feeling whicn to say the least hasnt been good. It seems funny how we can get used to feeling bad and then thinking it is normal. I am not sure if I am able to explain that in words but hope you all get the idea. For now I have only one option and thats take my meds daily.
I took the convo to the next level and asked him about surgery and he said yes people who have crohns have resections. I also asked if people with crohns ever have a j pouch and he said no. I guess I need to feel fortunate that my condition is only on a scale of 1-10 a 1 according to him. I csan only pray that it remains that way and doesnt get any worst. I will certainly do what I have to do for now which is take meds and probiotics and try to live more healthy and not stress.
On another note it looks like I been in the wrong forum all along. But I still feel that there are alot of commonality to both UC and Crohns. Until they know all the answers I will still post here and perhaps at the other also.
One more thing. I asked about when would be the next time for a scope and he said if anything happened he would not scope me but would have a ct scan done. I said ok. It all sounds strange but I am no expert. Thats what I pay him for.
Hope everyone is well.
Post Edited (twiggs) : 6/17/2013 10:01:17 AM (GMT-6)