Hi
I haven't been on lately - but I've looked at times ...I miss seeing/
reading some of you who first helped me when I was dx'd in 2001 w/ CD
& had a resection later that year
To date: I have had a ****t installed and am on Remicade - 6 treatments
so far
the last one, spread out a wee bit too far because of the ****t surgery
I have probs with it (my ****t) already but that's either another post
or i'll re****t what happened w/ dr, etc
I am kinda bummin' because I hoped by now, the Remicade would make a
big difference for me (the VERY 1st time, i did have this "Wow"
response - it was subtle, i just happened to notice 2 days later, that
I wasn't feeling sick (flu like) and my CD symptoms were quiet. I
would give anything for it to work that well again.
I got sick recently with UTI & had to go to ER for IV flagyl/cipro -
and it's come back - now I am worried that Dr might take me off
Remicade because i get sick too easy (nurse said something vague to
that effect on the phone when i checked in b4 starting back on the
antibiotics) It's been so bad as to affect my kidneys.
1) how many of you have been on Remicade and started to get sick(er)
more often?
2) he wants me to take Solumedrol at my next infusion - i didn't do
well w/ pred - (i went a wee psycho ;)
but Entocort, not so bad. Anyway, has anyone else been given
Solumedrol to help when they have Remicade infusions?
3) My doctor is great and cares a lot about me, but the ER doctor gave
me Donnatal script and I was like wow, this really helped my pain, all
the burning and sharp pains (at illeum & other places) I feel like a
barbed-wire lasso is jerking my guts around. Anyway pills go RIGHT
THROUGH me...so this "elixir" while nasty - really helps, coats and
takes the pain away at the source but my GI guy was like no, and
wanted me on Levsin
anybody else with experience with Donnatal? helped with CD symptoms?
I am on Duragesic patch for pain management and percocet for
breakthrough but nothing helped quite like the donnatal - i'm aware
it's a compound - but hey if it works surely it's no worse than the
oxy, right?
I would really appreciate feed back from anyone who has had similar
experiences w/ these or can tell me what to expect w/ the
solumedrol...
T.I.A. .... and I've missed u guys!
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