Reffered to a surgeon yesterday...

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ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/11/2009 8:03 AM (GMT -6)   
so i went to GI yesterday and he is in the process of getting my recs over to the surgeon, i am really excited now and said i will do the surgery tomorrow if i could..
he was planning on giving me a remicade treatment just in case but after seeing me yesterday, he wants to just go ahead with the surgery..i look healthy, i am even a little overweight..
anyone know the process? do i meet with the surgeon one time and schedule the surgery? is it a long process? yeah


24 year old guy, UC since I was 17
remicade for two years, worked OK but got married and was told it could cause birth defects so I quit feb 08. my wife reminded me that i still had D most of the time while on remicade.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred
 
starting back on at least one remicade IV to see if i can get some relief next week,
most likely having j-pouch surgery this year, within a couple months, so i can be healthy for my baby, meet with my dr about it august 10!

Post Edited (ruissarr) : 8/11/2009 8:15:55 AM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/11/2009 8:37 AM (GMT -6)   
For me the consultation included a brief review of my UC history, a discussion of the surgery and recovery, and an exam. Following that I had a surgery date 2 weeks later.

Some questions you might want to ask: how many jpouch procedures have you performed? Do you have any jpouch patients around my age and gender that I can talk to?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/11/2009 8:54 AM (GMT -6)   
dude, you think you're excited now, wait 'til after you talk with the surgeon! When I met with a colorectal surgeon, it was the best- we talked about both the perm ileo & jpouch surgeries in detail, talked about recovery time, he answered every question I had & then some. I also met with the WOCN nurses, the ostomy nurses- they too were awesome- they showed me some appliances, answered every question, made me feel very at ease with surgery. To them, it's just another medical procedure, not some freaky surgery! Depending on your surgeons schedule, you may schedule the date at the initial consult- they will need a day of pre-op stuff, like labs. Have fun & good luck! Ask a lot of questions!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 8/11/2009 10:08 AM (GMT -6)   
Good luck!
I just scheduled my surgery consultation, too. It's on August 31. I don't know that I can really get the surgery done soon, but I may be able to schedule it for December when I am on break from school. I just really don't want to be on Prednisone that much longer (that would make it 11 months of continuous use)
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
Back up to 30mg Prednisone UGH, Prenatal vitamin, and Ferrous Sulfate twice a day
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success
3 infusions of Remicade with no success, so next step is consultation with a surgeon 8/31
8/09 colonoscopy shows that the whole colon is affected


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/11/2009 10:09 AM (GMT -6)   
eva lou, sounds like you are thinkin of the same thing?? yes i am jumpin out of my skin, esp after reading about that road trip that guy is taking with his family, i cant wait to feel good and "normal"!!
24 year old guy, UC since I was 17
remicade for two years, worked OK but got married and was told it could cause birth defects so I quit feb 08. my wife reminded me that i still had D most of the time while on remicade.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred
 
starting back on at least one remicade IV to see if i can get some relief next week,
most likely having j-pouch surgery this year, within a couple months, so i can be healthy for my baby, meet with my dr about it august 10!


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/11/2009 10:15 AM (GMT -6)   
uuuhh, actually no- I was in very rough shape a year ago, & met with the surgeon, had a date scheduled & was ready to go. Then things got better & I chickened out! So currently I'm alright- upped my Imuran dose, & I get about 5 good weeks between Remicade infusions. But the whole meeting with the surgeon really opened my eyes- I don't fear it like I once did. It's a good thing, really!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


ruissarr
Regular Member


Date Joined Jul 2009
Total Posts : 80
   Posted 8/11/2009 11:21 AM (GMT -6)   
pam, its funny, like the colon knows whats going on and it trying to do good now...just today i had some normal stool, after about a year with D, its too late tho! i already made up my mind! LOL i just dont wanna chance a flare up after i am a dad..since i make the money..


24 year old guy, UC since I was 17
remicade for two years, worked OK but got married and was told it could cause birth defects so I quit feb 08. my wife reminded me that i still had D most of the time while on remicade.
Wanted to start a family Jan 09 so dr stopped 6mp, wife got preg in may so I am back on 6mp also lialda and 20 mg pred
 
starting back on at least one remicade IV to see if i can get some relief next week,
most likely having j-pouch surgery this year, within a couple months, so i can be healthy for my baby, meet with my dr about it august 10!


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 8/11/2009 1:50 PM (GMT -6)   
Hi Ruissarr,
I just had a consulation with a surgeon and the appointment went great. I have been living with UC for 10 years and have had 2 major hospitalizations during that time amongst flares every other year if not more frequently. I have 2 little healthy girls and I feel like enough is enough. I need to be healthy to take care of them so I completely understand how you don't want to flare after your baby is here- congrats on that by the way!! The surgeon I met with was excellent. He explained the difference between the permanent ileostomy versus the j pouch surgery. I have decided to go with the j pouch because the thought of a life long colostomy bag makes me sick to my stomach. The surgery is done in 2 parts. After the first surgery, you have a bag for 6-8 weeks and then the reversal is done. He discussed recovery time after each surgery. Oh yeah, he told me to expect to be in the hospital for 4-5 days after first surgery and a few days after the second surgery. I am currently overcoming a flare so am taking steroids along with my 6mp, colocort enemas, lialda, etc. He said that he would like me to be off of m ymeds, especially my 6mp for a minimum of 2 weeks but 2 months would be better so that I can heal better from surgery- seeing as how 6mp suppresses your immune system. He said I could be on prednisione going into surgery (I am currently tapering off) because they will give me a bolus of it before surgery and taper me off. I have scheduled for 0ct 5. I am planning on stopping my 6mp on aug 20 so that I will be off of meds for 1 1/2 months and pray that I don't flare up. He said I need to get back on meds if I flare and come and see him right away. They prefer to do surgery when you're somewhat healthy- helps with the recovery. Best of luck to you!

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 8/11/2009 2:05 PM (GMT -6)   
ruissarr said...
pam, its funny, like the colon knows whats going on and it trying to do good now...just today i had some normal stool, after about a year with D, its too late tho! i already made up my mind! LOL i just dont wanna chance a flare up after i am a dad..since i make the money..


I'm sure your life will be a lot better after the surgery and you will be able to enjoy your baby.
It is definitely not fun being sick and caring for a baby. Mine is 4 months old now and I have been sick the whole time except for the first couple weeks after birth.
Congratulations!
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
Back up to 30mg Prednisone UGH, Prenatal vitamin, and Ferrous Sulfate twice a day
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success
3 infusions of Remicade with no success, so next step is consultation with a surgeon 8/31
8/09 colonoscopy shows that the whole colon is affected


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/11/2009 3:32 PM (GMT -6)   
I'm so happy for you! I hope you have found a surgeon you like. I think you have made an excellent decision for you! Good luck!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/11/2009 6:49 PM (GMT -6)   
i met with the surgeon and talked about the surgery and decided which i wanted to do, he did an exam, then i went for blood work and all that funstuff.  I think my surgery was like 2 weeks after my exam.
A few days before surgery you will go for preop stuff and to meet your ET nurse. 
And he/she will mark the stop for your stoma.  I took my fav pair of pants and wore them so that i could make sure i got good placement.   Dont get marked in sweatpants, unless thats what you always wear.  Get marked in the kind of clothes you wear like to work or whatever.
If that makes sense,lol.
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