Just talked to the surgeon's nurse...

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 2/9/2009 10:00 AM (GMT -7)   
Apparently, he spent all last week reviewing my chart and consulting with other docs. That makes me feel good (that he spent that much time on ME) and uneasy (that I'm THAT sick in his opinion). I know I'm not well..

Anyway, he gave me a FULL hour to discuss a surgery option with him on March 3rd. I asked the nurse about the possibility of a temp ostomy. She said they do them and the minimum is 3 months and the average is 6 months and it does indeed work. Again, I'm just gathering all my options here. I'm scared of the unknown from the biologics, but scared of the prospects of surgery. Oh, and they kindly refilled my pain pills...

This is all so incredibly frustrating and complicated...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 2/9/2009 12:06 PM (GMT -7)   
kaycie--I know those thoughts can be scary!  If you'd like to get some info on ostomies and how some of us have faired with ours, whether they're temporary or permanent, you can pop over to the ostomy forum.  There are many of us who've live with Crohn's and have gone many different routes...you are NOT alone...and you'll get some GREAT questions to ask you doc on the 3rd!

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 2/9/2009 12:53 PM (GMT -7)   
Thanks Ohio...headed there now...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/9/2009 3:58 PM (GMT -7)   
Kaycie I know someone who had good results going that way and your right your Dr. is spending lots of thought on you. Hoping others will be able to help that have expercience it. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 2/10/2009 12:56 PM (GMT -7)   
gachrons said...
Kaycie I know someone who had good results going that way and your right your Dr. is spending lots of thought on you. Hoping others will be able to help that have expercience it. lol gail


Well, I'm leaning towards it, but only a temp. The only drug I'm contemplating at the moment is Humira. I've considered trying the Humira first and then doing the temp ostomy if it doesn't work, but I'm genuinely not sure what I'm going to do yet and I really have to have all the informaiton before I can just make a decision.

Thanks so much... any more info is definitely appreciated. I didn't get a chance to post on the ostomy board just yet, but will before my appt...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 2/11/2009 11:47 AM (GMT -7)   
Hi Hope things work out and let us know. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail

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