soupdragon69
ele mental leprechaun
- Joined
- Dec 7, 2006
- Messages
- 1,386
Hey Guys,
Thought I would update you with my review on the above as I saw my gastro cons today...
Went through my admission last July and all the test results with him as he was away the whole time I was in hospital and didnt see me til today. He said that with four of the tests two of them were exact contradictions of the other two lol and he wanted to hear what happened etc and how I felt within myself between then and now.
Talked through remicade, imuran, blood results and how I was overall. Told him I didnt really feel/see any improvement til after the third infusion and he said really? that is not a good thing at all, it shows the severity of your disease and also that not all the tests show the full picture and the importance of listening to you! I also told him that 2-3wks before my next infusion I get severe muscle, joint and nerve pain and stiffness throughout my body to the extent it just builds in intensity over the weeks until I can no longer lie on my side in bed at night or tolerate the weight of one leg resting on top of the other and the pain wakes me constantly from sleep overnight. So he wasnt one bit happy.
He told me today that the level of my crohn's meant I wasnt into remission yet and still needed further support even though I was much much better overall.... Said I will be on remicade for at least 2yrs but more probably long term maintainence every 8wks way past that time. Has upped my Imuran from 200mg to 225mg for 2wks then go to 250mg and stay there til I get stabilised more effectively and later down the line he said he would reduce the Imuran again.
Told me that I needed to be kept a very close eye on as I could deteriorate very quickly at any time and wants me to go back to clinic in 2wks to see the gastro nurse as to how I am. Then he wants to see me again after my next remicade infusion on Oct 30th. I also have to continue with weekly blood tests until he says otherwise (was trying to get it extended drat lol).
I just feel so much better now I have talked to him and very lucky to have him as a consultant. He was also telling me that he was in Brussels last week at the biggest Crohn's centre in Europe and they are using remicade longer term now for patients and winding back on imuran because they are getting much better results - interesting eh?
Saw the dietitian and she said she couldnt really do anything for me except be there if I needed her as I was doing everything she asked! lol
I gave off to my gastro as I have put on 10kg in 2mths rather than lose it as am overweight. He said it would correct itself in time and not to be so sore on myself!
Anyway, thats the latest bit of the saga ;-)
Thought I would update you with my review on the above as I saw my gastro cons today...
Went through my admission last July and all the test results with him as he was away the whole time I was in hospital and didnt see me til today. He said that with four of the tests two of them were exact contradictions of the other two lol and he wanted to hear what happened etc and how I felt within myself between then and now.
Talked through remicade, imuran, blood results and how I was overall. Told him I didnt really feel/see any improvement til after the third infusion and he said really? that is not a good thing at all, it shows the severity of your disease and also that not all the tests show the full picture and the importance of listening to you! I also told him that 2-3wks before my next infusion I get severe muscle, joint and nerve pain and stiffness throughout my body to the extent it just builds in intensity over the weeks until I can no longer lie on my side in bed at night or tolerate the weight of one leg resting on top of the other and the pain wakes me constantly from sleep overnight. So he wasnt one bit happy.
He told me today that the level of my crohn's meant I wasnt into remission yet and still needed further support even though I was much much better overall.... Said I will be on remicade for at least 2yrs but more probably long term maintainence every 8wks way past that time. Has upped my Imuran from 200mg to 225mg for 2wks then go to 250mg and stay there til I get stabilised more effectively and later down the line he said he would reduce the Imuran again.
Told me that I needed to be kept a very close eye on as I could deteriorate very quickly at any time and wants me to go back to clinic in 2wks to see the gastro nurse as to how I am. Then he wants to see me again after my next remicade infusion on Oct 30th. I also have to continue with weekly blood tests until he says otherwise (was trying to get it extended drat lol).
I just feel so much better now I have talked to him and very lucky to have him as a consultant. He was also telling me that he was in Brussels last week at the biggest Crohn's centre in Europe and they are using remicade longer term now for patients and winding back on imuran because they are getting much better results - interesting eh?
Saw the dietitian and she said she couldnt really do anything for me except be there if I needed her as I was doing everything she asked! lol
I gave off to my gastro as I have put on 10kg in 2mths rather than lose it as am overweight. He said it would correct itself in time and not to be so sore on myself!
Anyway, thats the latest bit of the saga ;-)
