First appt with surgeon

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geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 5/4/2009 2:12 PM (GMT -6)   
So I'm in the process of finding a surgeon and getting a consultation setup. I feel pretty clueless going into this though. Are there certain questions I should be asking the surgeon during the consultation? How soon after the consultation can I expect to set a date for surgery? (I'm a little anxious to get the ball rolling!)
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate); Prednisone 40 mg daily
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :( Surgery may be my next option.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 5/4/2009 2:16 PM (GMT -6)   
Have you decided which surgery you want to have? You have the choice of a permanent ostomy, a jpouch or a kpouch. Depending upon which surgery you choose will help us define questions for you. As for the date of surgery it depends upon the surgeon's schedule. My surgeon does his surgeries 2 weeks out from the consultation. Others schedule up to 3 months out.

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


geminisunset
Regular Member


Date Joined Sep 2008
Total Posts : 153
   Posted 5/4/2009 2:24 PM (GMT -6)   
I'm thinking j-pouch is the surgery I want to have. I'd rather not have an ileo permanently. And I'm not sure what kpouch is, I'll have to look into that. My GI dr was suggesting j-pouch when I talked to him about it.

Oh, I hope whoever I choose is booking 2 weeks out and not 3 months! I'm already down to 100 lbs, I can't go on for much longer without disappearing!
GeminiSunset
Diagnosed w/IBS: Oct. 2006
Diagnosed w/UC: Jan. 2007 (proctitis), July 2008 (pancolitis)
Medications: Canasa (helped the first flare when it was just proctitis); Rowasa enemas (did not help as the following colonoscopy confirmed pancolitis); Lialda (2 pills in the morning, 2 pills in the evening, soon to be 2 pills in the morning only once I'm off steriods); Prednisone; Protonix (only took while on prednisone); Remicade infusions, started at 5mg/kg (Aug 2008), increased to 7.5mg/kg (March 2009), increased to 10mg/kg and increased to every 6 weeks (April 2009) - 7 infusions so far, next infusion on 5/28 continuing every 6 weeks; Zyrtec-D (for allergies); Toprol (a generic form, 25 mg, for a rapid heart rate); Prednisone 40 mg daily
Supplements: Women's One-a-day multi-vitamin; Super B-complex w/vitamin C, Iron supplements, Omega-3 Fish Oil (coated, not sure how much except one soft-gel daily), Aloe Vera supplement (two daily), Acidopholis, Probiotic Align
Diet: Spinach and Sunflower seed butter diet (starting 3/21/09) (will try again once I can eat normally again)
Current Status: April, 2009 - suffering another flare-up :( Surgery may be my next option.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 5/4/2009 2:38 PM (GMT -6)   
Okay, here's a partial list.

I also recommend you visit www.j-pouch.org to ask for surgeon recommendations in your area. It's very important that you select an experienced surgeon for the jpouch.

1. How many surgeries will I have, 1, 2, or 3?
2. What's the length of hospital stay for each surgery?
3. Will I need home help when discharged?
4. When would you expect I could get back to work? regular activities? travel?
5. What type of monitoring will I need in the first six months post surgery? first year? every year thereafter?
6. Do you have any jpouch patients my age I can talk with?


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

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