Surgery Consult

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sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/16/2009 8:37 PM (GMT -6)   
Going to talk to a surgeon tomorrow for the first time ever.... has anyone done this. What are some questions I should ask the surgeon??
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/16/2009 9:05 PM (GMT -6)   
Kara-

I just went through step one of the jpouch surgery, so I have a temp ileostomy.

I asked the surgeon:

1. How many jpouch surgeries he performs a month/year?
2. Will he be doing the surgery laparoscopically or open?
3. What type of pain meds does he use? Some doctors give their patients epidurals... or will there be a pain pump?
4. How long he anticipates your recovery to be?
5. Is he going to do the surgery in two steps or three steps?


My surgeon went over every detail of the surgery. Between what i learned here and what he told me, I really didn't have many surprises.

Don't be afraid to ask questions. If e/she doesn't want to answer or seems annoyed, then maybe he/she is the right surgeon.

Good luck

Where are you having the surgery performed?
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/16/2009 9:09 PM (GMT -6)   

If you are going for a jpouch consult here are some questions:

1.  Do you do open or lapro surgery?

2.  How many jpouch surgeries have you performed?

3.  Do you have any jpouch patients my age that I could talk to?

4.  Would you recommend a 1-2 or 3 step surgery for me?

5.  What is the length of the hospital stay?

6.  Who does my follow-up a year out from surgery, you or a GI?

7.  Will I need help at home after surgery.  If so, typically for how long?

8.  What should I expect 6 weeks from surgery? 6 months?  1 year and 2 years out?

9.  Does your hospital have jpouch support group meetings?

 

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


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/16/2009 9:15 PM (GMT -6)   
well i don't even really know if he's going to say i need the surgery... i really hope so. I just went to a new GI today and he said basically that's the path i'm on anyways... surgery. That next I am goin to remicade...and really why the heck do all those side effects anyways when I just want to be free of the disease. I have a colonoscopy setup for next friday ....I've never done Moviprep....that's my prep for this one. I am nervous that it wont show up or it could be IBS or something and the surgeon will be like... nope wont do it. I just want the surgery. It's perfect timing too because we've already met our deductible on our insurance and our 1500 out of pocket so insurance covers 100%!

I just hope this surgeon looks at everything i've been through and is like THIS IS WHAT I CAN DO FOR YA. lol

Great questions guys i'm gonna write them down!
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/16/2009 9:20 PM (GMT -6)   
oh you said where... I'm in Irving, Tx near dallas
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/16/2009 11:41 PM (GMT -6)   
If you tell them you want the surgery, they usually will do it. Esp if the GI thinks thats the path you are on too. Just explain to them that remicade is your last option and you dont want the side effects and that you are ready to be healthy!

good luck!

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/17/2009 12:06 AM (GMT -6)   
what's the difference between open and laproscopically?
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 4/17/2009 5:12 AM (GMT -6)   
With the laparoscopic surgery, the surgeon makes small incision and inserts a laparoscope ( long tube with camera and scissors and the end). He/she uses this to cut the colon. Then in most cases, the surgeon makes a incision just above the pubic area and removes the colon through there.

With open- he/she makes a large traditional incision 8-10 inches and opens you up to cut colon out and remove it.

The laparoscopic surgery takes more skill, I think. The surgeon has to use the camera to guide him through the surgery.

Laparoscopic- usually less hospital time and recovery time ( I was in the hospital 4 days post op)

open- usually about 6-7 days in hospital- more recovery time

Either way you have to take it easy- not lift more than ten pounds post op and there will still be pain either way.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/17/2009 8:12 AM (GMT -6)   
Correction: A traditional incision is not 8-10 inches long. This depends upon the surgeon's skill and the patient's physiology. My incision was about 5".

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


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/17/2009 8:16 AM (GMT -6)   
which would cause less scarring, adhesions etc... i guess that's a question to ask the surgeon today too LOL
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/17/2009 11:52 AM (GMT -6)   
I wish I had thought it through and had the surgery when I was young!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone, 40-30-25-20-15... Humira denied, started Remicade 4/12. 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/17/2009 3:19 PM (GMT -6)   
Your're never too old for jpouch surgery. My friend had the surgery at age 69! Many other patients have had the surgery in the 70s.

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


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/17/2009 3:49 PM (GMT -6)   
It's not my age, it's my career that makes it difficult now.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone, 40-30-25-20-15... Humira denied, started Remicade 4/12. 


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/17/2009 10:23 PM (GMT -6)   
So the consult went well I think... I am leaning towards surgery, but I don't think I'd use the guy I talked to today. He doesn't seem as experienced as I'd like my surgeon to be.

Is 10 surgeries as head surgeon a lot? I didn't feel it was.
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/18/2009 9:17 AM (GMT -6)   

I think experience is key when choosing to have surgery.  My surgeon had done over 2000 jpouches.  I would recommend that you post a note at www.j-pouch.org and ask for surgeon recommendations in your state.  I chose my surgeon who is 2 hours away.  Better to have surgery in a large metropolitan city with highly experienced doctors than choose a surgeon in my small town.

 

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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/18/2009 11:16 AM (GMT -6)   
10 is not alot at all. I am wonderign if he was saying he had done 10 since becoming head surgeon, i cant imagine that someone could get to be head surgeon having done only 10 surgeries.

But Sue is right, it is much better to go to a more experinced dr, and you can usualy get that in a larger area. I went to the nearest big city to me to have my surgery becasue my husband worked at that hospitla, but i would have done that anyway just to get better care.

I'm glad you had a good consult!

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/18/2009 11:34 AM (GMT -6)   
well there were three doctors in the office..... he said as a group... he's done 30.. as head surgeon he's only done 10 and I was like hmmm....not very much, then again they all have to start somewhere.

I still would like to find a more experienced one. I'm thinking Dallas.
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/18/2009 1:20 PM (GMT -6)   
Trusts your instincts!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone, 40-30-25-20-15... Humira denied, started Remicade 4/12. 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 4/18/2009 2:25 PM (GMT -6)   
Have you decided if you are going laparoscopic or traditional? With the experience your surgeons have I doubt if they do it laparoscopic. In my area very few surgeons do it laparoscopic. Mine was one of them and when I asker her about it she said I was not a candidate because of my size. I am too big with a large belly. At my age (51) I wasn’t concerned about the scars. If they start out laparoscopic and have problems they can turn it into traditional open surgery.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 4/18/2009 2:27 PM (GMT -6)   
the surgeon i talked to and his two colleagues do laparoscopic.... he said they do the last part open though because the tool is too straight to do the staples or something....
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!
 
 

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