very good 2nd opinion consult

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Eva Lou
Veteran Member

Date Joined Sep 2006
Total Posts : 3442
   Posted Today 4:49 PM (GMT -6)   
hi folks! Well, I went to Beth Israel Deaconess Hospital for my consult today, with the Head of the GI Dept. One of his assistants took my medical history, did an exam, & then we all sat down together to talk. Basically, my medication options are limited- we could play around with the dosages of the Imuran & Remicade, & switch to Lialda insetad of Asacol. However, these measures would probably get me about 10-20% relief, from my current baseline. I would know if these measures are going to help at all within 2-3 months. We talked about surgery- he feels I am definitely ready for it, medically. Because I am married & already have a child, he also feels the psychological aspect wouldn't be so bad. He knows my GI doctor well, & also knows the surgeon I've been recommended to. I have a surgery consult in 2 weeks, had already made the appointment. We talked about the complimentary therapies- aloe, probiotics, SCD, etc. He said he has had some patients who've had some measure of success with these, but none of clinically proven & most of the success occurs in people with mild to moderate disease. He thinks my disease is severe, refractory, & I've become steroid dependent. We also talked about my immune system, & how it currently is under a beating- being on the pred, the Imuran, the remicade, & also being sick & underweight takes a toll. I've already been hospitalized once with strep pnuemonia, a similar infection could be a reality. He was so nice... I did not hear anything I wasn't expecting to hear. But I feel %1000 better about surgery. Who knows- I am going to try the med game for a bit longer- even if I do opt for surger it would take about 4 months to put into motion. I think! So we'll see... but mentally, I'm preparing my self for a new ME in 2008- bag lady!
diagnosed '02
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 60mgs/day

Regular Member

Date Joined Jul 2007
Total Posts : 172
   Posted Today 5:13 PM (GMT -6)   
Eva Lou--best of luck to you! Keep us posted and let us know your plans. Your enthusiasm is contagious and it is nice to see (well read) your positive outlook. There is light at the end of the tunnel, so to speak :)
Pancolitis diagnosed 5/07 
2 Lialda/day increased to
4 Lialda/day since 8/01/07
40 mg. Prednisone for two weeks starting 9/16/07
Activia; multi-vitamin; extra calcium supplement; omega 3's

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