- Joined
- May 23, 2011
- Messages
- 1,549
We get our ng tube Tuesday!...or not lol!
Just got an appointment for an ng tube. While I feel a little bad for dd (I think I will tell her the morning of), I am excited to try it and hopeful that it will make a difference. I need to be sure that it works for our insurance company, though...wish us luck!
I was feeling pretty uninformed and frustrated this morning...I was unsure if my expectations were too high as far as remission is involved, and wondered why everyone (it seems) else talks about bloodwork and we get very little done. I called m̶y̶ ̶b̶o̶y̶f̶r̶i̶e̶n̶d̶ (sorry) the doc we saw in Boston :wub: and he called me back within an hour...love him! He told me that is was unlikely to work but more importantly that we haven't given Remi a fair shake if we haven't done any bloodwork to see what her levels are and to see if upping her remi dose helps. He ALSO said that if she HAS diarrhea, she isn't in remission and my expectations are just fine (I was told by a nurse that she isn't flaring unless she is bleeding...
) He thinks that she will probably have surgery in the next four years but that we can try a few other things first. When I told him that I love how frank he is with me he told me that EN, while it works in other presentations of Crohn's, is a waste of time for us.
I totally appreciate that our doc is willing to listen to us and try anything, I wish he'd understand that I value his opinion. Dr. Essers told me he discussed ALL of this with Dr. Rivera, and I haven't heard a shred of it. I'm going to go to our appointment Tuesday by myself to discuss it with him.
Just got an appointment for an ng tube. While I feel a little bad for dd (I think I will tell her the morning of), I am excited to try it and hopeful that it will make a difference. I need to be sure that it works for our insurance company, though...wish us luck!
I was feeling pretty uninformed and frustrated this morning...I was unsure if my expectations were too high as far as remission is involved, and wondered why everyone (it seems) else talks about bloodwork and we get very little done. I called m̶y̶ ̶b̶o̶y̶f̶r̶i̶e̶n̶d̶ (sorry) the doc we saw in Boston :wub: and he called me back within an hour...love him! He told me that is was unlikely to work but more importantly that we haven't given Remi a fair shake if we haven't done any bloodwork to see what her levels are and to see if upping her remi dose helps. He ALSO said that if she HAS diarrhea, she isn't in remission and my expectations are just fine (I was told by a nurse that she isn't flaring unless she is bleeding...
) He thinks that she will probably have surgery in the next four years but that we can try a few other things first. When I told him that I love how frank he is with me he told me that EN, while it works in other presentations of Crohn's, is a waste of time for us. I totally appreciate that our doc is willing to listen to us and try anything, I wish he'd understand that I value his opinion. Dr. Essers told me he discussed ALL of this with Dr. Rivera, and I haven't heard a shred of it. I'm going to go to our appointment Tuesday by myself to discuss it with him.
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