Shifting from UC board to Ostomies board....impending Surgery

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MotherofTeenwithNoUC
Regular Member


Date Joined Mar 2011
Total Posts : 227
   Posted 8/27/2011 7:07 AM (GMT -6)   
This is my first post to the Ostomies board.  My 14 yr old son has decided to take the plunge and have the J Pouch surgery.   After one year battling UC (and only six months since diagnosis as he hid it from me) he is fed up with all the meds and constant flares despite his physician trying medication under the sun.  He is in a severe flare at the moment, bleeding heavily and in pain. Also running low grade fever.  Good chance we will end up at the ER today.
 
I was hoping that there was someone on this board that can share some of their personal experiences (good or bad) regarding the surgery (part 1 and part 2) and the recuperation.  My son is a freshman in high school and I thought that it might help him if he could hear from a peer about what to expect.
 
Thanks so much!
MotherofTeenwithUC
14 yr old male, Diagnosed February 2011. Currently trying to control flare
Started Remicade 6/15/11- 4th infusions scheduled for 9/8/11
Current meds:
Remicade 250mg every 6 weeks
Sulfasalazine - 1000 mg 3 X day
Prednisone 15 mg day
Poly-Iron 1 xday
Pepcid 20 mg, 1 x day
Canasa suppositories 2X day

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 8/27/2011 7:44 AM (GMT -6)   
Best of luck to him! I'm not exactly the same age, lol, but experiences will be similar for those on here. I was supposed to have a 2 step surgery but they weren't able to make the j pouch during the first surgery so they just cut out my colon. Now I have 2 more surgeries ahead of me, the next one being 9/7. I was in the hospital 6 days after surgery but that is only because they were having a hard time finding meds for me. I was ready to leave after 4 days minus the med issue. After 7.5 hours in surgery, I woke up with severe shoulder pain (due to laproscopic surgery). It was also very hard to use my stomach to sit up / lay down / adjust myself in the bed. I had 4 small incisions (plus my stoma site); one of my incisions was in my belly button and that helps hide a scar. I was off all pain meds a week after leaving the hospital. It was 2 months before I felt 100% again, but I felt pretty good weeks 3 - 8! Feel free to ask any questions you guys have about surgery!
DX 2/10 UP. DX 07/10 UC. Pancolitis. tried: Canasa, Asacol, Bentyl, Imodium, Imuran, Prednisone, Flagyl, Cipro, Remicade, Codeine, Tramadol, Xanax, Morphine, Vicodin, Prozac, ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 8/27/2011 9:02 AM (GMT -6)   

 

Hi, I Think I read you were going to take him to cc in florida,  If they have an er their,  I think I would take him their if he has to go today.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/27/2011 9:11 AM (GMT -6)   
Collicat and Rachel's Mom just went through j-pouch surgeries with their children...I am sure they will be along to help!

You can also try www.j-pouch.org for some information.

Your son sounds very mature...and wise...he deserves 'normal' high school memories and it sounds like he's going in the right direction.

Hang in there Mom!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!
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